The Fibro-Fog Chronicles

Great article about exercise and fibromyalgia

2012-01-13T10:01:00.001-05:00

http://fibropainlife.org/2012/01/13/strategies-to-stay-motivated-for-exercising-in-the-new-year-with-fibromyalgia/

At last! Tender points being lowered as one-and-only criteria for fibromyalgia diagnosis

2011-11-30T18:42:00.001-05:00

Courtesy of Felicia Fibro (thank you)

http://feliciafibro.com/2011/11/28/no-more-tender-points-part-1/

http://feliciafibro.com/2011/11/29/no-more-tender-points-part-2/

Fibromyalgia 101 a presentation by the American Chronic Pain Association

2011-11-30T18:34:00.001-05:00

You may listen to this in audio by clicking here: http://theacpa.org/videoPlayer.aspx?id=13
Fibromyalgia 101
I would like to welcome you to Fibromyalgia 101, a presentation by the American Chronic Pain
Association that was supported through a grant from Forest Laboratories.
In the next few minutes we’re going to look at what fibromyalgia is, the causes and how are you going to
live a full life in spite of the pain.
There are two kinds of pain; there’s acute pain and chronic pain. Chronic pain is a pain that continues
for a month or more beyond the usual recovery period of an injury or an illness. It can go on for a very
long time. The interesting thing about chronic pain is that you have good days and bad days. It’s never
consistent, the same level of pain every day and I think that has to be the most confusing part of chronic
pain.
And when we’re talking about Fibromyalgia it is a type chronic pain. Fibromyalgia is a condition in which
a person has long‐term, body‐wide pain and tenderness in the joints, muscles, tendons and other soft
tissues. Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression, and
anxiety.
It’s estimated that about five million Americans are dealing with fibromyalgia. While fibromyalgia is
most common in women between 20 and 50 men can also have fibromyalgia.
Fibromyalgia is very difficult to be diagnosed and it can take years to get a definite diagnosis of
fibromyalgia. The cause of fibromyalgia is unknown, but there are some possible causes or triggers that
include: physical or emotional trauma; an abnormal pain response – meaning that their brain functions
differently than other people and so they may feel pain more intensely than other individuals; sleep
disturbance; an infection such as a virus ‐ although there’s none that have really been identified to link it
directly to fibromyalgia.
Pain is the main symptom of fibromyalgia and it may be either mild or severe. Painful areas are called
tender points. Tender points are found in the soft tissue on the back of the neck, shoulders, chest,
lower back, hips, shins, elbows, and knees. The pain then spreads out from these areas.
The pain may feel like a deep ache, or a shooting, or burning pain. While the joints are not affected,
pain may feel like it is coming directly from your joints.
Everybody experiences fibromyalgia in different ways, some have difficulty concentrating, memory loss
called Fibro Fog, sensitive to loud noises or bright lights, they may experience a lack of energy, poor
sleep, morning stiffness and fatigue – when they sleep at night they wake up feeling more exhausted
than when they went to bed the night before.
People with fibromyalgia tend to wake up with body aches and stiffness. For some people, pain may
improve during the day, but gets worse at night. Others have pain all day. In addition, pain may get
worse with activity, cold or damp weather, anxiety, and stress. Fatigue, depressed mood, and sleep
problems are seen in almost everyone with fibromyalgia. If you have fibromyalgia fear may be the most controlling factor – never knowing when the pain is going
to strike, how well you’re going to feel and it’s difficult to make plans in advance even in a day, a month
or a year.
Our expectation today is that modern medicine can eliminate pain when in fact, for many people,
especially with fibromyalgia, they may be able to reduce it, but it will never go away. So we look to our
health care providers to help us manage our pain. The problem is they’ve never been trained and so
what we hear too often is “Learn to live with it.”
When you hear “learn to live with it” it can often look just liket that formula on the blackboard
impossible to solve. What the American Chronic Pain Association tries to do is take that impossible
formula into a simple solution of 1 + 1 = 2.
One of the most important components of living a full life with fibromyalgia is to have a good
relationship with your healthcare provider and that means good communication.
There are two things that are very important in working with your healthcare provider; the first is that
they validate your pain ‐ that they believe you have pain; the second one is good communication. The
American Chronic Pain Association has designed several communication tools to share with your
healthcare provider – one of them is called the Fibro Person. When you go to our webpage theacpa.org
you’ll see our Fibro Person. There you’ll be able to click on a map of an individual ‐‐ man or woman, and
in the front and the back you’ll be able to point to where on your body your pain is, how it feels and the
intensity. Once you’ve completed that you can hit print, take it out and you can see the map that you
can take to your healthcare provider, to explain exactly how your pain feels, where it’s at and the
intensity.
Having a good relationship with your healthcare professional means using the time to the best of your
ability. Tools that help you communicate exactly how you feel and in the impact it has on your live
allows you that time to begin to problem solve with your healthcare provider so that you can live more
fully in spite of the pain. If you have fibromyalgia you need to know that there is hope for a better
tomorrow. One thing that we need to be able to help you to do is to help you focus on your abilities
rather than your disabilities.
A key to living well with fibromyalgia is to become a part of the treatment team. It is important that
you’re no longer that passive patient, but an active participant in your treatment and you work with
your healthcare professionals as part of the team.
It’s important that you understand the goal and your goal is to reduce your sense of suffering, improve
the quality of your life, and increase function. There may always be some level of pain, but that doesn’t
mean you can’t live a full life in spite of the pain. The question is “how do you do that”?
The American Chronic Pain Association has developed “Ten Steps from Patient to Person.” This is the
beginning of making that journey from that disabled patient, back to a functional person. They don’t
need to be done in any order. They’re important depending on what your needs are. You will pick andchoose where you want to start. Saying that, the first step, which is accepting the pain is important. For
many people accepting the pain means giving up, when in fact what it means is educating yourself,
understanding the pain, knowing that today you may have a certain level of pain, but that doesn’t mean
tomorrow it will be the same. There’s always hope for a better tomorrow.
The second one is to get involved and this means again not to be that passive patient, but an active
participant and ask your healthcare professional “what is it that I can do to help reduce my sense of
suffering, improve the quality of my life and increase my function?”
A good starting point is understanding your priorities. If you’re someone who has fibromyalgia you may
understand that as the pain gets worse, your ability to function is reduced. So many of the things you
did on a day to day basis are let go. It’s important that you begin to identify what is the most important
thing for you – what is your priority for today? It’s important to look beyond the pain and to things that
are important in your life. That means setting priorities, but how do you do that? We need to have a
starting point each day. One way to help you do that is to think about all the things that have gone by
the wayside since your pain began, things that you are no longer able to do, get index cards – little 3 x 5
index cards, carry them around with you and every time you think about something that you didn’t do
or that you should do, or that you wanted to do – write it down on one of those cards. After you think
that you have all of that written down, what you need to do is take all of those cards, lay them out and
just step back and take a look at all of the things that you’ve been carrying around with you. All the
things you’ve felt guilty about that you couldn’t do. Then ask yourself – of all of those things lying out
there – what is the most important one for you right now? When you find it, pick up that card and
you’ve just identified your number one priority. Then you can pick them up in any order that you want
and you can shift them around as your needs change. You now have a starting point.
Another step is setting realistic goals. At the beginning of this remember we said that people with pain
have good days and bad days. On good days with fibromyalgia because we feel so guilty, we try to get
as much as we possibly can done in that day. Typically what happens is that we overstep our limits and
the next day we can’t even move and instead of realizing that we eliminate that activity – knowing that
it’s going to create more pain. What we have to be able to do is to narrow down what we want to do in
small manageable steps setting realistic goals. When you decide what you want to do today, ask
yourself, is this within my limits? Can I actually do this today? Do I understand what it means to stop,
listen to my body and when it says ouch, stop there take five minutes to relax and then go back to the
activity. Don’t set yourself up for failure – make your goals measurable and one day at a time you will
make progress.
It’s important that a person with fibromyalgia feels empowered. One way to do that is understand your
basic rights. You have the right to be treated with dignity and respect. You have the right to make
mistakes. You have the right to do less than what is humanly possible. You have the right to ask for
what you want. You have the right to stop and think before you respond. You have the right to say “no”
and not feel guilty. You have the right to ask for help, or to disagree, or to ask why. These rights are
going to give you a sense of empowerment.Another tool in moving from that patient back to a person again is to recognize your emotions. For
many people with fibromyalgia they may have heard “it’s just because you’re depressed.” Your
emotions do have an effect on your level of pain. We can’t separate our mind and our body. What we
feel physically is going to affect us emotionally, and what we feel emotionally is going to affect us
physically. It’s important that you begin to recognize your emotions, both the positive ones, but also the
negative emotions. As we begin to avoid our feelings, we keep them buried deep inside of us and those
create more stress – it’s like carrying them around. It’s important that you recognize your emotions,
both the positive and the negative emotions. As you deal with them as they occur, it’s not going to
increase your stress level. Increased stress is going to increase your pain levels.
People often hear that you just need to relax – not worry about it. That’s an easy thing to do, but it’s a
hard thing for us to understand. It’s important that you listen to what your body is telling you and when
you begin to feel the first increase in pain – that maybe you just need to take five minutes and just relax.
How do you do that? How do you tell your body how you want it to feel? How do you redirect your
attention off of your pain and on to something else? It is a learned skill and it takes practice. One
example of how this works is, right now in your mind to yourself I want you to count from 1 to 25 and at
exactly the same time same your alphabet. It’s impossible because we have a one track mind. So while
we’re telling ourselves that we’re laying on this white sandy beach listening to the waves crash against
the shore, the sea gulls overhead – while we’re thinking that‐ for that moment we’re not thinking about
how much the pain is affecting our bodies. So when you think about yourself lying on the beach in the
nice warm sand, listening to the waves crash against the shore, hearing the seagulls overhead – for that
instant you’re not thinking about how much your pain is affecting you, therefore you’ve reduced your
sense of suffering. That’s one of our goals in managing fibromyalgia pain. Relaxation exercises help you
reduce stress which help you better manage your pain.
Exercise is a key component in managing the pain from fibromyalgia, but for you it may mean more
pain. Fibromyalgia begins to take over your life – your activities are decreased because every time you
do something it tends to increase your pain levels. When people tell you to exercise all you can think
about is more pain. It’s important to talk to your healthcare professional about where your limits are.
Once they have approved the fact that you can actually exercise, think about the goals we talked about
earlier and don’t set yourself up for failure. When you start an exercise program do it within your limits.
That may mean doing one leg lift each morning before you get out of bed the first week, adding a
second one the next week, and slowly and gradually increasing your level of exercise ‐ any movement is
exercise. The key is you have to keep moving to keep those muscles in tone. That is important when
you’re living with fibromyalgia.
We’ve talked a lot about living with pain, but what we need to look at is the total picture and for so
many with fibromyalgia we often hear them say “ I can’t do this anymore, I can’t do that anymore,”
rarely do we hear someone say “this is what I can do” and a key component to living well with
fibromyalgia is to look at the total picture – not just your disabilities, but begin to focus on your abilities.
Think about the things that you can still do, how you can do them, how you can incorporate them into
your life. It’s important to have a positive attitude when you’re living with fibromyalgia.Learning to live well with fibromyalgia is not just a solo exercise. It means that you need to talk to other
people – support groups are a wonderful way to begin to understand not only what you need to do, but
how other people learn how to better manage their pain. The American Chronic Pain Association has a
number of peer led support groups throughout the country. It is helpful for us to being, not only to
learn from other people, but to share what we have learned about managing and living well with
fibromyalgia.
Sometimes it is difficult for a person to understand all of the components of pain management that
we’ve just talked about. We use the example of a car – a person with fibromyalgia is like a car, but their
car has four flat tires. Expectation is that if you give me the right medication that’s all I need, but it’s only
going to put air in one of your tires. You still have three flat tires. So the question is what else do you
need? And for each person it’s different. For some it may be physical therapy, maybe biofeedback, it
may be acupuncture, counseling – it’s up to you to discover what you need. Once you get all four tires
filled, it’s important that you maintain that car on a day to day basis. If something goes wrong, then you
need to go back to your healthcare professional and talk with them. Have that good relationship. It is
possible to live a full life, reduce your sense of suffering, improve the quality of your life and increase
your function in spite of fibromyalgia. You can live a full life.
For more information you can go to the American Chronic Pain Associations website at
www.theacpa.org or call us at 1‐800‐533‐3231.

National Fibromyalgia & Chronic Pain Association Founder and President to Serve on National Task Force on Pain

2011-07-29T11:09:00.001-04:00

FOR IMMEDIATE RELEASE
27 July 2011

Media Contact: Corin Ramos, APR
702-674-6148; corin@walsonpr.com

National Fibromyalgia & Chronic Pain Association Founder and President to Serve on National Task Force on Pain

Jan Favero Chambers named Co-Director of the Task Force for the Institute of Medicine Pain Report

LOGAN, Utah—(July 27, 2011)—Jan Favero Chambers has been named Co-Director of the Pain Care Forum Task Force for the Institute of Medicine (IOM) Pain Report on the Congressionally-mandated study, “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education and Research.” The study, released June 22, 2011 in Washington, D.C., identifies social stigmas and barriers to pain care and outlines recommendations to overcome these obstructions.
According to the historic report, chronic pain affects an estimated one in four, or 116 million U.S. adults, which is more than the number affected by heart disease, diabetes, and cancer combined. Medical treatment and lost productivity due to pain also cost the nation up to $635 billion each year. This does not include military personnel, adults living in care facilities, or children. (The Institute of Medicine (IOM) was established in 1970 by the National Academy of Sciences and acts as an advisor to the federal government and to identify issues related to medical care, research, and education.)
Favero Chambers’ key role as Co-Director of the Pain Care Forum Task Force for the IOM Pain Report not only elevates fibromyalgia (FM) to the highest national forefront, but the role also comes less than one year after launching the National Fibromyalgia & Chronic Pain Association. Founded in late 2010, the NFMCPA is a not for profit, 501c3 organization whose mission is to build a united patient and medical community that will execute advocacy programs regarding access to care, scientific research, diagnosis and treatment for people suffering with fibromyalgia and chronic pain.
Favero Chambers and Task Force Co-Director, Will Rowe, CEO of the American Pain Foundation, will serve for approximately 4 years and will be charged with addressing:

•   Reducing barriers to access—whether legal, regulatory, reimbursement or cultural;
•   Educating the public on prevention, treatment and self-management;
•   Improving professional education across the spectrum of disciplines and throughout the continuum of undergraduate, graduate and continuing health professions training;
•   Focusing pain research efforts at NIH and coordinating that research with other government agencies and the private sector in order to speed the development of new therapies, foster interdisciplinary approaches, increase longitudinal research of people in pain, and increase the number of pain researchers; and
•   Recommendations from the Pain Care Forum to the U.S. Health and Human Services Secretary for developing a strategic plan to improve pain care in America by the end of 2012.

“The NFMCPA is proud to be spearheading efforts on behalf of the millions of Americans who suffer from fibromyalgia and chronic pain conditions as we actively engage our policy makers, Senators, and Representatives in Washington to respond to the IOM Report by funding pain research and education,” said Favero Chambers. “The NFMCPA strongly believes we have a right to live free of chronic pain, and we are calling upon all members of our community to step forward and draw upon this Report to help us in the cultural re-casting of pain and lay a clear path toward much needed improvements in pain research, care and treatment.
“While chronic body-wide pain is the most common symptom of fibromyalgia (FM), other symptoms of sleep disturbances, fatigue, and overlapping conditions such as TMJ and IBS significantly deteriorate the quality of life for people with FM. Economic, societal, and personal costs can be reduced through research and development of treatments, and eventually a cure for FM. The IOM Pain Report accurately reflects the serious costs and concerns of 116 million Americans living with chronic pain. It squarely places responsibility onto collaborative stakeholders and government agencies to bring about change in the cultural attitude, treatment, economic burden, and understanding of chronic pain. It is a paradigm shift to look at pain as an illness or condition rather than a symptom of another illness or disease state.
“We thank the Congress for commissioning the highly respected IOM to study this problem and develop recommendations on how to improve pain research, care and education. And we thank the IOM, and in particular the distinguished panel of experts on this Committee, for their hard work and for sending a clear message to our government and our citizens that pain is a major public health problem that deserves much greater attention and focus.”

About Jan Favero Chambers
Jan Favero Chambers, 56, is a mother of five, who was bedridden for 16 months before being diagnosed with fibromyalgia in 2006. After years of searching and eventually finding treatments to successfully manage her chronic pain illness, Favero Chambers jumpstarted her public advocacy efforts by founding the Center for Understanding, Research, & Education of Fibromyalgia (CURE FM), now known as the National Fibromyalgia & Chronic Pain Association, in 2008. Recently, Favero Chambers was appointed by Senator Orrin Hatch (R-Utah) to work as the only fibromyalgia organization with the Pain Care Forum, a professional organization representing hundreds of pain associations nationwide.
About the National Fibromyalgia & Chronic Pain Association
Founded in 2010 in Logan, Utah, the National Fibromyalgia & Chronic Pain Association is a not for profit, 501c3 organization whose mission is to build a united patient and medical community that will execute advocacy programs regarding access to care, scientific research, diagnosis and treatment for people suffering with fibromyalgia and chronic pain. For more information, visit www.fmcpaware.org

FOR IMMEDIATE RELEASE: Women's Advocates Confront “Silent and Costly Epidemic” Of Chronic Pain

2011-06-26T10:02:00.000-04:00

FOR IMMEDIATE RELEASE

June 24, 2011

PRESS CONTACT:

Lauren Condoluci

(202) 470-5367

LaurenCondoluci@rational360.com

Women's Advocates Confront “Silent and Costly Epidemic” Of Chronic Pain

Updated Report Identifies Cost Saving Solutions

WASHINGTON, DC – June 24, 2011 – The Campaign to End Chronic Pain in Women (“the Campaign”) today released its 2011 health care policy recommendations, which could save the government billions of dollars in wasted healthcare costs each year. This update to the Campaign’s groundbreaking 2010 report – Chronic Pain in Women: Neglect, Dismissal and Discrimination – offers recommendations in advance of a major, new, Congressionally-mandated study and recommendations on pain to be released by the Institute of Medicine (IOM) on June 29, 2011.

“Up to 50 million American women suffer from one or more chronic pain conditions. Our country’s failure to support research and train medical professionals in the appropriate diagnosis and treatment of these conditions adds as much as $80 billion a year in direct and indirect costs to American taxpayer’s health care bill,” said Terrie Cowley, President of the TMJ Association, one of the four organizations leading the Campaign.

“Chronic pain is a silent and very costly epidemic. The good news is that solutions would not only improve the lives of millions who suffer, but they would also cut health costs and improve economic productivity,” added Kim McCleary, President and CEO of the CFIDS Association of America, one of the four organizations leading the Campaign.

After a successful inaugural year of the Campaign, the 2011 recommendations include:

● The National Institutes of Health should expand, better coordinate and focus federally supported research on chronic pain conditions which solely or disproportionately impact women, including chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, temporomandibular (TMJ) disorders and vulvodynia.

● Using the latest scientific information on the diagnoses, treatment and prevention of these disorders, the Centers for Disease Control and Prevention, with support from and in collaboration with other federal agencies, should launch an aggressive multi-year campaign to appropriately educate health care professionals, as well as patients and the lay public.

Federal health agencies involved in pain care, education and research should improve coordination and resource-sharing to ensure information sharing, replication of best practices, and elimination of overlap and duplication.

To read the full text of the report and all of the recommendations, visit http://www.endwomenspain.org.

“As a Campaign, we are proud to have participated in the national conversation about pain throughout the past year, and will continue to offer recommendations that [1]we hope will continue to be implemented at the highest levels of government,” said Christin Veasley, Executive Director, National Vulvodynia Association, one of the four organizations leading the Campaign. “We are pleased that the IOM completed its pain study in such a timely manner and look forward to working with all levels of government to implement vital recommendations that will improve the lives of millions of pain sufferers.”

The IOM’s report on our nation’s status of pain care, education and research will be released on June 29, 2011.

About The Campaign to End Chronic Pain in Women:

The Campaign to End Chronic Pain in Women is an advocacy campaign fighting to end discrimination and improve care for women suffering from chronic pain. The Campaign is led by organizational leaders from the CFIDS Association of America, Endometriosis Association, National Vulvodynia Association, and The TMJ Association. For more information, visit www.EndWomensPain.org.

"The Pill" (oral contraceptive) as a treatment for chronic pain?

2010-09-21T09:11:00.002-04:00

Is anybody out there experiencing a reduction of chronic pain when taking birth control pills?

I am curious about a connection of hormones estrogen and progesterone and the prevalence of women to have fibromyalgia, chronic fatigue syndrome, autoimmune diseases like lupus, etc. more than men.

Cymbalta claims for fibromyalgia attract FDA warning

2010-01-16T09:52:00.001-05:00

Cymbalta claims for fibromyalgia attract FDA warning
News - Fibromyalgia News
Written by Matthew Hogg
Thursday, 14 January 2010

In the past month the makers of four drugs have received warnings from the US Food and Drug Administration (FDA); one of these was for Cymbalta which is approved to ease the pain of fibromyalgia.

Eli Lilly & Co. were warned that despite FDA approval for use of Cymbalta (duloxetine) for fibromyalgia, their promotion of the drug for such patients was misleading and often overstated its effectiveness and omitted or minimised information regarding potential side effects.

Cymbalta is a serotonin-norepinephrine reuptake inhibitor (SNRI), a modern type of antidepressant medication. Since serotonin and norepinephrine are also involved in the regulation of pain, Cymbalta can act as an analgesic (painkiller) and has proven useful in some trials for relieving the pain suffered by fibromyalgia patients In June 2008 it was approved by the FDA as a treatment for the pain disorder.

Fibromyalgia is characterised by chronic widespread pain which can be particularly intense at specific tender points located around the body. The pain itself can often be disabling and sufferers must also deal with a host of other symptoms including fatigue and cognitive dysfunction. To date only three drugs including Cymbalta have been approved by the FDA for its treatment; another SNRI, Savella (milnacipran), and the nerve pain drug Lyrica (pregabalin).

In studies Cymbalta appears to reduce pain in fibromyalgia patients regardless of the presence of depression or other mood disorders suggesting it has a direct analgesic effect. One major study found it improved overall Fibromyalgia Impact Questionnaire (FIQ) scores, reduced tender point pain threshold and other measures of pain, and improved overall quality of life based on several measures.1 Unfortunately it wasn't all good news as the effects were limited to women, Cymbalta did not improve any symptoms in male patients, and there was no significant improvement in FIQ pain scores in the patients as a whole.

A review of four clinical trials of the drug came to similar conclusions suggesting that it effectively relieved pain in fibromyalgia and the analgesic effects were independent of any effect on mood. Also finding that Cymbalta improved symptoms of fatigue and mental and physical performance.2

So the evidence base generally supports the effectiveness and safety of Cymbalta for fibromyalgia, at least in female patients, but the FDA feels Eli Lilly & Co have exaggerated just how effective it is an generalised this to include all patients with fibromyalgia when it is clearly ineffective in men. Around 10 per cent of fibromyalgia patients are men so this is not an insignificant amount. The FDA also feel side effects have been brushed under the carpet so to speak. The side effects of Cymbalta use can include nausea, dry mouth, constipation, somnolence (drowsiness), hyperhidrosis (excessive sweating), decreased appetite and dizziness.

The FDA is particularly concerned about the way Cymbalta is marketed to the public in the US in TV commercials and advertisements in printed media such as newspapers and magazines, as well as on websites.

References:

1. Arnold LM Lu Y Crofford LJ Wohlreich M Detke MJ Iyengar S Goldstein DJ (2004) A double-blind, multicenter trial comparing duloxetine with placebo in the treatment of fibromyalgia patients with or without major depressive disorder Arthritis and Rheumatism 50(9):2974-84

2. Acuna C (2008) Duloxetine for the treatment of fibromyalgia Drugs Today 44(10):725-34

Neurologic signs common with fibromyalgia

2009-09-29T18:08:00.000-04:00

Neurologic signs common with fibromyalgia
Tue, Sep 22 13:16 PM EDT
By Michelle Rizzo

NEW YORK (Reuters Health) - Fibromyalgia isn't all in your head, new research suggests.

In a study, researchers found that people with fibromyalgia were more likely than those without the chronic pain condition to have poor balance, tingling and weakness in the arms and legs, and other "neurologic" signs and symptoms.

Fibromyalgia, a debilitating pain syndrome that affects 2 to 4 percent of the population, is characterized by chronic pain, fatigue and difficulty sleeping. It's a somewhat mysterious condition with no clear-cut cause. Many people with fibromyalgia have faced the question of whether the condition is real.

The new findings, reported in the latest issue of Arthritis and Rheumatism, support a growing body of literature suggesting that the condition is real and also support the possibility that a "neuroanatomical" cause may underlie fibromyalgia.

Dr. Nathaniel F. Watson, of the University of Washington Medicine Sleep Institute at Harborview, Seattle, and colleagues studied 166 people with fibromyalgia and 66 pain-free controls.

All of them were examined by a neurologist who was unaware of their disease status. All study participants also completed a standard questionnaire on neurologic symptoms.

In 27 of 29 neurological categories tested, significantly more neurologic symptoms were seen in the fibromyalgia group than in the control group, Watson and colleagues found.

The greatest differences were found for light sensitivity, or "photophobia," seen in 70 percent of fibromyalgia patients but in only 6 percent of pain-free controls; poor balance, which plagued 63 percent of fibromyalgia patients but only 4 percent of controls; and weakness and tingling in the arms or legs, seen in more than half of fibromyalgia patients but in only around 4 percent of controls.

In addition, those with fibromyalgia had greater dysfunction than controls in certain nerves in the brain. They also had more "sensory" problems, motor abnormalities and gait problems.

Within the fibromyalgia group, there were significant correlations between several neurologic signs and symptoms. For example, numbness in any part of the body or tingling in the arms or legs correlated with neurologic test findings. Poor balance, poor coordination and weakness in the arms or legs also correlated with objective findings on neurologic tests.

These observations, Watson told Reuters Health, underscore the need for "careful neurological examinations in all fibromyalgia patients, particularly those with neurological complaints."

Watson cautioned that this study does not confirm a neuroanatomical basis for fibromyalgia and that much more work is necessary before this can be known with certainty.

SOURCE: Arthritis and Rheumatism, September 2009.

FDA approves a third drug to treat Fibromyalgia

2009-05-06T22:35:00.002-04:00

FDA approves new drug Savella sooner than expected. Click on the link below for the press release. Ask your doctor if Savella can help treat your Fibromyalgia symptoms.

http://www.frx.com/news/PressRelease.aspx?ID=1278002

Adverse reactions to glutamate

2009-04-19T11:38:00.002-04:00

For the past two weeks, I've been in a horrendous flare-up of my symptoms. Starting with severe pain in my eyes and a feeling like someone had sprayed hot, burning chemicals in my eyes, going further to widespread "vague" neurological symptoms too numerous to list here, and finally culminating in the worst headache I've ever had which woke me from sleep at 5:30 a.m. Friday morning and had me considering whether to call an ambulance, it was that severe. The night before, I had stayed up quite late, having eaten my dinner at 10:00 pm. Dinner that night consisted of a phony BLT made with Morningstar Farms vegetarian breakfast strips (i.e., fake bacon).

One of the strangest symptoms was an incredible feeling of chills and shudders as I was trying to go to sleep late that night, and a horrible feeling of fear so bad that I had to leave the TV on in order to fall asleep. I was wearing a t-shirt, flannel sleep pants, a sweatshirt, socks and was under a sheet, blanket and TWO comforters. Nevertheless, I was absolutely freezing, despite the fact that the weather has turned and it was a seasonably warm night.

Now, a few days have passed, and I went into my freezer to read the label of the breakfast strips. To my horror, there were not only dozens of ingredients (that should have sent up a red flag) but a number of them are MSG imposters.

The more I started thinking about it, the more I realized that, due to my recent crazy schedule, I'd been consuming more processed foods, ready-made foods, all of which probably contain MSG or its affiliates.

A Google search provided the answers I needed. Chills and shuddering is a classic symptom of MSG or glutamate reaction. So are numbness, tingling, many other neurological problems. But, the most common reaction to MSG and its glutamate cousins? Severe migraine headache.

For those interested, here are some links. Read your labels. Know what you're eating. Don't buy this junk. And above all, if you buy it, don't eat it. I'm throwing my fakin' bacon in the trash.

http://www.truthinlabeling.org/adversereactions.htm

http://www.truthinlabeling.org/action.html

http://www.politicalfriendster.com/showConnection.php?id1=5427&id2=5439

Vaso-vagal syncope, fainting, blackouts - contact STARS

2009-01-10T10:03:00.001-05:00

NEWS RELEASE
BLACKOUTS AND SYNCOPE NON-PROFIT
LAUNCHED IN UNITED STATES
A million and a half Americans each year can now access
a new source of support and education.

South Carolina, Oct 2007- STARS an international non-profit organization has announced that it has established STARS-US, a national non-profit organization that is dedicated to supporting United States families and medical professionals to improve the diagnosis and care of Syncope conditions.

Affecting a million and a half Americans each year. Syncope is the medical term for a faint or blackout caused by a sudden lack of blood supply to the brain. Tragically, more that 40% of Americans with Syncope are either misdiagnosed or go undiagnosed. Syncope usually results from a heart rhythm or blood pressure regulation problem.

If you have Syncope, your life is turned upside down, you’re prohibited from driving, and you could fall unconscious at anytime, perhaps even losing bladder control. The embarrassment and the anxiety can ruin lives yet, if diagnosed correctly, most patients can be simply and effectively treated.

Since founding STARS in the UK in 1993, Trudie Lobban has seen a tremendous growth in the demand for information from US syncope sufferers. “We really had no choice but to set up an operation in the United States. Syncope can be extremely difficult to diagnose leaving sufferers, parents and doctors in a terrifying limbo-not knowing what’s wrong, and living in constant fear of another attack, let alone the consequence. I started STARS because it began to affect my daughter, Francesca, when she was very young. I felt as though Francesca was on the verge of death every time it happened. No-one could explain what was going on, or recommend a treatment. Today we receive 8,000 requests from people in just that position every month. Such a large proportion of these come from the US, we are delighted that we’re now able to open a dedicated organization, focused just on the ever-increasing needs of US families and doctors facing the specter of unexplained blackouts.”

FACTS on Syncope in the United States:
· Syncope affects 1.5 million American patients for the first time each year.
· It accounts for 10 billion dollars in doctor and hospital expenses each year.
· Yet up to 50% of patients leave the hospital without a clear diagnosis
· 10% of falls by the elderly are due to Syncope.

Syncope is often dismissed as simple fainting, but for a significant number of patients, the blackout is anything but simple. Complex Syncope (Reflex Anoxic Syncope or severe Vasovagal Syncope) often appear just like a “seizure” or “fit”, this leaves many patients with a tragically incorrect diagnosis of epilepsy. It is very important to make sure that syncope and epilepsy are distinguished from each other; this is a vital component of STARS’ educational effort around the world.

What is Reflex Syncope or RAS (Reflex Anoxic Seizures)?
RAS occurs mainly in young children. Any unexpected stimulus, such as pain, shock, or a fright, causes the heart and breathing to stop, the eyes to roll up into the head, complexion to become deathly white, the body to stiffen and the arms and legs to jerk. After 30 seconds the body relaxes and the heart starts beating. RAS attacks may occur several times per day/week/month. The attacks appear to come in batches. There is no cure, but advances have been made with the use of a pacemaker where cardiac pacing, a treatment, has shown to improve the quality of life for some individuals. Atropine, atropine sulfate, safe, effective drugs that have prevented most Reflex Anoxic Seizures in the short term for children having severe and frequent attacks.

About STARS.
STARS a registered 501(c)3 tax-deductible non-profit organization is committed to improving the quality of life for individuals and their families coping with Syncope conditions. Whose aims are to address the disadvantages, discrimination and stigma experienced by people living with these afflictions. STARS main focus is on education and supporting sufferers, their families, the medical community and general public by creating a support system where they can obtain knowledge and understanding of Syncope conditions. STARS will also promote research into the diagnosis and management of Syncope, to publicly publish the results to alert patients, the general public and the medical community.

Contributing to STARS.
STARS is seeking private and institutional contributions to fund educational and training programs, creating and distributing educational tools, training materials, supporting and educating sufferers, their caregivers and medical professionals through a toll free helpline, website, regional, national meetings, newsletters, monthly e-bulletins and funding scientific research.

STARS Sponsor:
STARS has attracted support in the form of board participation from prominent individuals in the, corporate business, philanthropic and medical communities, such as Daniel Beach, Director of Communications, Medtronic Cardiovascular, Professor Blair Grubb, Cardiologist, Toledo University Hospital, Ohio, Mrs. Linda Kadesch, Hilton Head Island, South Carolina, Dr. Phillip Saul of the Children’s Heart Program of South Carolina at MUSC.

For more information, or to contribute to STARS contact:
Rebecca Smith, Executive Director, (843) 785-4101, rsmith@stars-us.org, www.stars-us.org

Try the Women to Women Personal Program!!

2008-09-28T18:09:00.001-04:00

I urge anyone suffering from chronic pain to try the Women to Women Personal Program. I put it off for years, knowing about this program for quite some time and receive their newsletters all the time. I finally "caved in" and bought the supplements (vitamins & herbals) and within TWO DAYS my chronic pain is practically gone and I have more energy than I've had in years. I can hardly believe it. Hubby says it's just a placebo effect, but I don't care, it works that's all I care about! Seriously, it's kind of expensive, so beware, but if you can afford it, wow I can't sing their praises enough. If you want to check out their web site (full of great information -- you could get lost there for hours!) it's www.womentowomen.com

Press Release from NFA

2008-08-17T10:49:00.001-04:00

FOR IMMEDIATE RELEASE
4 August 2008

Fibromyalgia CME Program Receives Accreditation from

the American Academy of Family Physicians

ANAHEIM, Calif. (August 4, 2008)—The National Fibromyalgia Association today announced that its FAME (Fibromyalgia Assessment, Management and Education) program has received continuing medical education (CME) accreditation from the American Academy of Family Physicians. The FAME project, a partnership launched in 2006 between California State University, Fullerton and the National Fibromyalgia Association (NFA), is one of the first web-based continuing medical education programs designed specifically for healthcare providers who treat people with fibromyalgia.

“Physician education is vital to successful diagnosis and treatment of fibromyalgia,” says Lynne Matallana, president and founder of the NFA. “The program will help to reduce health disparities and improve the delivery of care to people affected by this life-altering disorder.”

An estimated 10 million Americans suffer from fibromyalgia (FM), a chronic pain disorder characterized by widespread pain, general fatigue and sleep disturbances. Currently 50% of fibromyalgia patients remain undiagnosed at any time and a correct diagnosis may take as long as 5 to 8 years from the disease onset. Many healthcare providers also lack confidence in identifying fibromyalgia and are reluctant to diagnose patients with the condition, according to a recent NFA survey.

The FAME project will help to increase the number of trained healthcare providers available to treat and care for persons with FM. It consists of two programs divided into eight module presentations. The first three —Overview of Fibromyalgia, Comprehensive Assessment of FM and Overlapping Conditions, and Pharmacological Management —makeup the Core FM Program. The Supportive FM Program offers sections on Cognitive Behavioral Therapy, Exercise Training, Nutrition, Biofeedback Training and Therapeutic Yoga.

The educational program has also received accreditation for continuing education (CE) credits from the American Academy of Nurse Practitioners, the California Board of Registered Nursing, The National Commission for Health Education Credentialing, Inc., the California Physical Therapy Association and the National Board for Certified Counselors. Approval is pending from the Board of Certification, Inc.

Developed and implemented through a grant from UniHealth Foundation, the programs will be offered online free of charge through August 2009. The $300,000 grant is the first grant that the UniHealth Foundation has awarded for a project involving fibromyalgia. For information or to register for the CME/CE program, visit http://www.fibromyalgia-cme.com/.

Anemia - the often undiagnosed epidemic

2008-06-28T10:48:00.006-04:00

Women: please! Get yourselves checked for anemia. This is an often easy-to-treat problem, and incredibly easy to diagnose. However, this epidemic (as some experts believe) is often overlooked and undiagnosed, with perhaps millions of women being told "it's all in your head" or "there's nothing wrong with you". There is no excuse for this. Doctors: please! when a woman comes to you with annoying symptoms do not "diss" her -- test her for anemia, and then educate yourself on the symptoms of anemia.

I was told that my symptoms were NOT from my hereditary anemia by several doctors. Guess what, that is not true! All of my symptoms are from anemia. Every single one of them. Yet not even the hematologist nor the neurologist nor the rheumatologist suggested anything of the kind. It was simply "No" (from the hematologist) and "there's nothing wrong with you" from the others. Do not let this happen to you! Get yourself tested, and educate yourself on anemia. Below are some links to help you get started. Check out Wikipedia as well.

I found this web site anemia.org. This non-profit organization was created by medical professionals who see anemia as a huge epidemic in the United States and want to bring this fact to the attention of the medical establishment, ordinary physicians, and citizens in general. They estimate that 3.4 million people have been diagnosed with anemia (in one form or another), but that this estimate is low, and that anemia is much more serious of a health concern than people realize.

Anemia is often UNDIAGNOSED, even though a simple, routine blood test can detect anemia very easily.

As you can imagine, since I have been diagnosed with a hereditary form of hemolytic anemia, I am on my latest crusade! I totally agree with these folks that anemia is seriously under-diagnosed. In fact, perhaps my journey of the last 5 years would have been significantly shortened had any one doctor taken the time to learn that the symptoms I am experiencing ARE symptoms of anemia (contrary to what they all told me).

I hope to be able to invove myself in this organization somehow, and am planning to write a letter to their executive director.

In the meantime, here are some links you may find interesting:
http://www.anemia.org/patients/symptoms-quiz/
http://www.anemia.org/resources/education-kit/about.php
http://www.anemia.org/patients/faq/
http://www.anemia.org/
http://www.anemiainwomen.com/html/home.htm

K2

Anemia and fibromyalgia

2008-06-26T08:12:00.001-04:00

Hi folks!

As some of you may remember from my story, I have a hereditary blood disorder (hereditary spherocytosis) which causes hemolytic anemia (my red blood cells get destroyed by my body before they reach maturity). This rare blood disorder was diagnosed when I was 44 years old, even though I have had spherocytes since I was born. HS is a little bit like sickle cell anemia -- my blood cells are shaped differently than normal blood cells. Normal blood cells are shaped like a donut. Mine are shaped like a sphere. The spleen sees them as foreign invaders and kills them.When I was diagnosed with this in 2004, I specifically asked several doctors (including the hematologist who diagnosed me) if the anemia is causing my chronic pain, fatigue and other chronic symptoms consistent with fibromyalgia. I was specifcally told "NO".

Not satisfied with that answer, I have spent the last four years (and most recently the last couple of months) researching everything I can find on anemia. If you do general searches on Google for anemia, you will find the same information that the doctors know (i.e., anemia causes fatigue, but that's about it).Wrong!! My dears, anemia causes muscle pain, headaches, shortness of breath, weakness, extreme bone-crushing fatigue, red or tea-colored urine, back pain, leg pain and a whole host of other complaints.

In my most recent searches, I Googled "anemia+fibromyalgia" and was delighted to find out that many experts believe anemia may be a cause of fibromyalgia. What a relief! I knew I wasn't crazy. Now, if you have read this far... please understand that my anemia is a hereditary form that cannot be cured (unless the spleen is removed, which I am not willing to do).

Most women have iron-deficient anemia which is easily treated with iron supplements (I can't take iron supplements because my system stores the iron and can create iron-overload which can be very dangerous requiring phlebotomies yuck!).Other people may have B-12 deficiency (so-called pernicious anemia), which is also easily treated.

I urge everyone with fibromyalgia to ask their doctors to test for anemia. It is discovered by a very simple blood test -- in fact the very blood test the doctor takes at a routine physical. If you are anemic, you probably have one of the treatable types -- follow doctor's orders (take iron or B12 depending on what the doctor discovers), and you may see a marked difference in your fibro symptoms.

If you are unlucky enough to have a rare blood disorder like I do, well, you may have just gone your whole life with it (like I did) and be completely unaware. I had a smart doctor who noticed "hemolysis" (destruction of red blood cells) and he sent me to a specialist. The other 7 doctors told me to take iron (!!!??? which, in my case, was completely wrong since I can get iron overload).

Google "anemia+fibromyalgia" for more information.
K2

Fibromyalgia as a metabolic problem

2008-05-29T07:55:00.002-04:00

I'm not a medical professional, and anything you read on this site is my own personal experience not medical advice, so if you try anything that I tell you about here, you do so at your own risk.

It's been a while since I've posted anything on this blog. I have been treating my illness as a metabolic problem, based on some personal research I've been doing. In my Google searches this morning, four months after beginning to change the way I eat and my activities in an effort to treat my fibromyalgia from a metabolic standpoint, I stumbled across this:

http://www.mcdowellpublishing.com/5sects.htm

I'm happy to learn that at least one doctor out there is seeing fibromyalgia the same way as I have. I feel better than I have in five years. I am using sugar again -- a substance I cut completely out of my diet over 25 years ago. This is contrary to everything you read about fibromyalgia and how to eat. I started eating a high-carb diet. The results have been amazing. Instead of taking Tylenol or Motrin for pain, I have some carbs, and the pain goes away, or at least becomes manageable.

I can't tell anyone for sure that this will work for everyone -- we are all different. But it is working for me, and for now I'm sticking with it. Yes, I gained some weight -- 15 pounds -- but I will take that over chronic pain and bone-crushing fatigue any day.

I would buy the above doctor's book, but at $120 even I draw the line somewhere. It's funny that I discovered this metabolic problem on my own, and now learn that this doctor has the same theory.

A final note: I have a hereditary form of hemolytic anemia which was diagnosed about four years ago at the beginning of my quest to find answers as to why I felt so awful and was in such pain. At the time, my hematologist told me, in no uncertain terms, that my anemia was NOT causing my symptoms. He could not have been more wrong. There is evidence that women who are anemic are more likely to develop fibromyalgia, and that anemia MAY be a cause of fibromyalgia. In the meantime, I have learned (through my own research and no thanks to any doctors out there) that my symptoms are almost exclusively the result of my chronic hemolytic anemia -- completely contrary to what one supposed "expert" hematologist told me. Doctors are not God. They do not have all the answers. Read and research as much as you can on your own. Talk to others. Join an online support group. It is the best way to find answers.

Peace, love,
K2

Porphyria Awareness Week

2008-04-02T22:11:00.000-04:00

National Porphyria Awareness Week to Begin March 29th

TO RAISE AWARENESS OF A RARE, DEVASTATING AND OFTEN UNDIAGNOSED DISEASE THAT AFFECTS THOUSANDS OF AMERICANS, THE WEEK OF MARCH 29TH HAS BEEN DECLARED NATIONAL PORPHYRIA AWARENESS WEEK.

SYMPTOMS SUCH AS ABDOMINAL PAIN, RAPID HEART BEAT AND PAIN IN THE BACK OR LIMBS MAY NOT HAVE A SIMPLE CAUSE. THEY COULD BE A SIGN OF A RARE AND COMPLEX DISEASE THAT AFFECTS THOUSANDS OF AMERICANS.

TO RAISE AWARENESS OF THIS DEVASTATING DISEASE, THE WEEK OF MARCH 29 HAS BEEN DECLARED NATIONAL PORPHYRIA AWARENESS WEEK. PORPHYRIA SUFFERER AND FOUNDER OF THE AMERICAN PORPHYRIA FOUNDATION, DESIREE LYON HOWE:

“It felt like a thousand flaming swords were stabbing my abdomen. I was undiagnosed and not properly treated for 10 years. Fortunately, there’s hope. I take Panhematin® to manage my porphyria and tests are available to accurately diagnosis the disease. No one should have to suffer like I did.”

PORPHYRIA IS CHALLENGING TO DIAGNOSE BECAUSE THE DISORDER HAS A VARIETY OF SYMPTOMS THAT CAN MIMIC OTHER CONDITIONS. WHEN UNDIAGNOSED AND UNTREATED, THE DISEASE CAN SEVERELY IMPACT A PATIENT’S QUALITY OF LIFE AND MAY CAUSE LONG-TERM OR PERMANENT NEUROLOGICAL DAMAGE. FOR MORE INFORMATION ON PORPHYRIA, VISIT PORPHYRIAFOUNDATION-DOT-COM, THAT’S P-O-R-P-H-Y-R-I-A FOUNDATION-DOT-COM

March 30th meeting on porphyria, S. Calif.

2008-03-23T12:44:00.001-04:00

From Nita:

It's on 3/30/08 at one pm at513 E Chapman AveOrange, CA 92866(714) 633-4588 It's at the corner of Shaffer and Chapman, if you are looking for a map. The agenda is getting porph info to medical personnel. We'll be talking about who will be doing what when. Hope the locals are all able to make it. I am posting this notice on other sites, so I hope that is okay. Nita/vp

Fibromyalgia and carbohydrates

2008-03-12T19:14:00.003-04:00

Hi all,

I'd like to hear from those with fibromyalgia, or those who suspect they have fibromyalgia, as to whether or not you have embarked on a low-carb diet, and whether you think low carbs have improved or worsened your condition. The same question for a low-calorie diet as well.

It's a little "survey" I'm doing out of personal curiosity.

Background: When I went on Weight Watchers and stopped eating carbs I began to crave sweets for the first time ever, and my fibro developed about 4 years into it. I have recently re-introduced sugar (real sugar) into my diet, and the results are amazing.

Please remember, I am not a doctor or medical professional, I am just another person with chronic pain and fatigue.

Hope to hear from some of you.
Thanks,
K2

MS Awareness Week starts today!

2008-03-09T17:49:00.001-04:00

*** copied & pasted from an email I received today from National MS Society****

K2

************************
MS Awareness Week starts today. As someone living with multiple sclerosis I can tell you firsthand what it means to commit to being a part of a movement to end multiple sclerosis.

To me and the millions of people impacted by MS it means everything.

That’s why I’m asking you to join me this week and take action.

What can you do? Click here to find some easy ways to join the movement.

We call it Seven Days of Action. Take these steps, even one, and a week from today we’ll be closer to a world free of MS.

Whether you are already a part of the movement, or looking to get involved for the first time, this is the week to show your commitment to ending MS. Every person and every action makes a difference.

On behalf of everyone living with MS and the National MS Society, thank you.

Sincerely,

ChrisLiving with MS since 1993

PS: Remember to visit www.nationalMSsociety.org today -- we have a whole new look for our website launching to kick-off MS Awareness Week! There, you'll meet just a few of the millions of people who are a part of the MS movement.

Sleep Awareness Week and Fibro Pain is Neuropathic

2008-03-01T12:09:00.002-05:00

Some new articles from the NFA and the Fibromyalgia Research Blog.

This coming week is Sleep Awareness Week -- March 3 - 9, 2008.

Enjoy!

http://www.fmaware.org/site/News2?page=NewsArticle&id=6959

http://fibroresearch.blogspot.com/2008/02/study-suggests-fibromyalgia-pain-is.html

http://fibroresearch.blogspot.com/2008/02/are-fibromyalgia-patients-more.html

http://fibroresearch.blogspot.com/2008/02/cost-effectiveness-of-aquatic-training.html

K2

Raynaud's Awareness Month - February 2008

2008-02-05T08:14:00.001-05:00

February 2008 is Raynaud's Awareness Month.

Please see the following links:

http://www.raynauds.org.uk/potioncms/viewer.asp?a=178&z=9

http://www.raynauds.org.uk/potioncms/viewer.asp?a=93&z=9

http://www.raynauds.org.uk/potioncms/viewer.asp?a=167&z=5

Raynaud's Phenomenon is a common affliction which presents itself as the sensation of extremely cold fingers and toes, even during warm weather. Often, the digits can turn different colors: red, white and blue.

Altenburg family members

2008-01-11T09:05:00.000-05:00

If anyone from the Altenburg legacy happens to stop by this blog, I am looking for any relatives who may be diagnosed with one of the porphyrias: AIP, HCP, VP, etc.

Our family is from Cook County, Illinois and parts of Wisconsin. My mother is "Mook" Altenburg, her parents were Ernest and Lucille.

If you are one of my cousins or their offspring, and think you may have information regarding a family medical history of porphyria, please contact me privately by email at kathleensmueller@hotmail.com

I'd also like to connect with Altenburg cousins anyway!! lol

All the best,

K2

Nita Busby's article on porphyria

2008-01-08T09:01:00.001-05:00

I am pleased to be able to help spread the word about porphyria by posting Nita Busby's article, published in the American Holistic Health Association's articles section.

Please click here:

http://ahha.org/articles.asp?Id=119

Fibromyalgia Seminar Feb 9th, Avon Park, FL

2008-01-04T08:28:00.001-05:00

Dear Fibromyalgia Friends,

The Fibromyalgia Treatment Center based in Marina del Rey, CA is sponsoring a one-day seminar with Claudia Marek, co-author with Dr. Paul St. Amand, WHAT YOUR DOCTOR MAY NOT TELL YOU ABOUT FIBROMYALGIA. The seminar will be an explanation of the guaifenesin protocol which reverses fibromyalgia in most people.

The seminar for professionals, patients, friends and family will take place Saturday, February 9th at 1:30 p.m. at the Union Congregational Church in Avon Park, FL. After the seminar we will have a tasty dinner prepared by the church chef. Cost of the seminar is $20 and the dinner is $15. Dinner MUST be prepaid.

All proceeds after expenses will be donated to the Fibromyalgia Treatment Center for reserarch projects. Forms can be found at the following address:
http://fibromyalgiatreatment.com/board/index.php

Please share this message with others who have fibromyalgia. There is hope! Guaifenesin is a 400 year old medicine which is sold over the counter as Muscinex! However, salycilates can block the guaifenesin from doing its work so we have to learn how to identify and eliminate them in our daily products. Claudia will be talking about the chemical reasons for all this and will have time to answer your questions. Claudia has completely reversed her own fibromyalgia as has Dr. St. Amand. Dr. St. Amand is an 80 yr. old endocronologist and still practices daily helping those with fibro. He has completely reversed his own fibromyalgia.

Hope to see you on February 9th. Feel free to contact me should you have any questions.
Julie
julie56@strato.net

Acute Intermittent Porphyria

2007-12-30T18:45:00.000-05:00

Acute Intermittent Porphyria is a metabolic disorder, which is inherited from one or both parents.

The reason I'm so interested in this is because of my decades-long quest to find out why I have "attacks" during my menstrual periods. Particularly the last 8 years since I went off "the pill" have been awful and all doctors keep telling me it is a digestive problem not endometriosis. I have never been tested for endo, and was just about to call the doc and talk to her about it when I found out about this other thing called porphyria (or more specifically, AIP acute intermittent porphyria). Below are some links, and most of you have heard my story before about how I have seizure-like episodes with my period and get really, really sick (vomiting, diarrhea, extreme abdominal leg and back pain) plus I have many peripheral neuropathies and chronic pain throughout the month. Reading some of the links of "patient stories" you will see, as I did, that a lot of these women sound exactly like me, with the exception that I've never been hospitalized although I could have been, I just always refused to do it.

My mother has often had similar type of attacks, although she has not menstruated since I was born her attacks have caused seizures and hospitalization countless times, and they are always digestive problems with extreme back and leg pain. Even just last week after we ate lunch she had an attack and I had to sit with her while she moaned in pain but insisted "nothing" was wrong. She also landed in the hospital 6 times from a severe reaction to Actonel which she was prescribed for osteoporosis after she broke her hip. The reaction to the Actonel was identical to a porphyria attack.

In addition, both my mother and I are very fair-skinned and extremely sensitive to the sun.

Many women with AIP are treated as if (yep) "it's all in your head".

The only way to test for porphyria is to take a urine test WHILE an attack is happening. Otherwise, the porphyrins sometimes do not appear during remissions.

Porphyria is often misdiagnosed as multiple sclerosis, lupus, endometriosis and multiple chemical sensitivity, among other mimicker illnesses.

People with AIP often have anemia. I have a hereditary form of anemia, so it might make sense that this would be somehow connected.

AIP is triggered by "the four M's": medication, malnutrition, maladies and MENSTRUATION.

Most AIP patients are extremely medicine-and- chemical sensitive. Many pharmaceuticals can cause an attack of AIP including OTC meds.

Here are some links:

http://en.wikipedia .org/wiki/ Porphyria

http://www.porphyri afoundation. com/about_ por/index. html

http://www.answers. com/topic/ intermittent- acute-porphyria? cat=health

http://www.porphyri a-europe. com/01-for- patients/ EN/for-patients. asp

http://www.porphyri afoundation. com/pat_stories/ love.html

http://www.porphyri afoundation. com/pat_stories/ warren.html

http://members. tripod.com/ PorphBook/ 152.html

http://members. tripod.com/ PorphBook/ 158.html

http://www.porphyri afoundation. com/pat_stories/ robinson. html

K2

Hyperventilation Syndrome

2007-11-26T10:31:00.000-05:00

Well, I know what's wrong with me now, at long last. Hyperventilation Syndrome. For several years now, I've been asking my doctor to check me for neurological disorders/diseases such as MS, epilepsy and others. I have multiple symptoms as follows: dizziness+shortness of breath+blurred vision+confusion+tingling+numbness+tinnitus and others.

I am so sick and tired of having these episodes, which are now almost daily, and often happen when I'm exercising, singing, talking, cooking, cleaning or working at the computer. I decided to compile all of my symptoms and Google them all at once. The first thing that came up was Hyperventilation Syndrome. To my surprise, the more I read about it, the more I realized that's exactly what's happening to me.

Interestingly, HVS is recognized by doctors. Hooray! The only problem is, the patient and the doctor both need to be smart enough to put the constellation of multiple symptoms together. Once the symptoms are together, the doctor can do a quick in-office test (which I actually did on myself although I do NOT recommend that anyone reading this do it!!). The in-office test induces hyperventilation, and within seconds after inducing hyperventilation all of the symptoms miraculously appear.

Over the past few days, since discovering this information, I have paid very close attention to my breathing. Did you know you are only supposed to breathe between 6 and 12 times per minute? I was breathing nearly triple or quadruple that. Did you also know that your stomach is supposed to expand when you breathe properly (not your chest). If your chest expands, then you are breathing incorrectly -- shallow breathing.

Now, if I start to feel dizzy (which is usually my first symptom) I "stop, drop and flop". I found that on several web sites. Stop what you're doing; drop your shoulders; and relax.

Breathing should be 7 counts in with stomach expanding; and up to 11 counts out. If you run out of breath before the count of 11, you've got some homework to do.

Yes, how embarrassing to learn that I don't know how to breathe!!! Yet, this syndrome is apparently very, very common, and the explanation for most patients who present with what appear to be neurological symptoms.

A final word about me specifically. I have these "attacks" when my period starts. I have often thought they were seizures, but no neurologist has been able to diagnose me with them. More recently, I thought they were panic attacks. And then I thought it was hypoglycemia. As I got closer and closer I knew I was on the right track. Now that I have found out about HVS, I have learned that chronic HVS can cause seizures called pseudo-seizures. It also causes fainting spells.

I am now 100% satisfied that I don't have a true neurological disorder such as MS or epilepsy or anything else. I am simply not breathing correctly. What a relief!

Hyperventilation Syndrome (HVS)

2007-11-24T17:43:00.001-05:00

Here is some info on Hyperventilation Syndrome (HVS). It can be acute, or chronic.
It can sometimes be brought on by excess lactate (milk, cheese, soy sauce, etc.) but more often occurs in people with panic disorder or chronic anxiety. Most people go years with these symptoms, fully believing something is really terribly wrong with them (heart disease, neurological disease), only to have test after test, see specialist after specialist, and have completely normal examinations and tests. HVS is caused by over-breathing, although the sufferer feels the opposite: that they can't breathe. A common feature is continual sighing and/or yawning, plus excess gas. Many sufferers are unaware that they are experiencing HVS but are acutely aware of the symptoms: dizziness or lightheadedness, shortness of breath, belching, bloating, dry mouth, weakness, confusion, sleep disturbances, numbness and tingling in your arms or around your mouth, muscle spasms in hands and feet, chest pain, and palpitations.

http://www.emedicin ehealth.com/ hyperventilation /page3_em. htm

http://www.erzo. org/kimberly/ health/HVS/

http://en.wikipedia .org/wiki/ Hyperventilation _syndrome

http://firstaid. about.com/ od/shortnessofbr eat1/qt/06_ HVSsymptom. htm

http://www.chiroweb .com/archives/ 12/04/03. html

http://www.nlm. nih.gov/medlinep lus/ency/ article/003071. htm

MSG, Aspartame and fibromyalgia

2007-11-23T09:58:00.000-05:00

Please read Debby Anglesey's web site. When I read her story, it was as if I were reading about myself. I urge everyone to read this!

Here is the link:

http://www.msgmyth.com/

And contained therein is another link to a report of the affects of MSG and aspartame on people with fibromyalgia:

http://www.theannals.com/cgi/content/abstract/35/6/702

The famous fibromyalgia guys

2007-11-22T10:34:00.000-05:00

On my Yahoo group, justme is also a member, and we got talking about the "pioneers" of fibromyalgia research and treatment (Yunus, Teitelbaum, Goldenberg, Wallace and Clauw). Figured I'd share the info here as well:

Muhammed Yunus is at University of Illinois. Funny enough, he got his training about 20 minutes from where I live at UMass in Worcester. (Worcester is the largest city near me, I live out in the woods lol).Here's a link to an interview w/Yunus:
http://www.esi-topics.com/fibro/interviews/MBYunus.html

Teitelbaum is in Annapolis, MD (I think he's a bit of a quack, but that's just my opinion). He wrote the famous book "From Fatigued to Fantastic!" He created "Fibro & Fatigue Centers" and there are about a dozen of them across the country. I don't particularly care for their methods, which focus on large doses of antibiotics and hormones, injected once a week at their office. There's probably a F&F Center in Illinois, I would imagine.

Don L. Goldenberg wrote the book "Fibromyalgia, A Leading Experts Guide to Understanding and Getting Relief from the Pain That Won't Go Away". He is based at Newton-Wellesley Hospital in Mass, and is a professor at Tufts University.

Daniel Wallace wrote the book "Fibromyalgia, An Essential Guide for Patients and Their Families". He is Chief of Rheumatology at Cedars Sinai Med Ctr in Los Angeles. Also professor at Univ of CA, LA.

Daniel Clauw is a professor of rheumatology at Univ of Michigan. Here's a link about him:

http://www.michr.umich.edu/dclauw.htm

And here is a really good interview with him:

http://www.immunesupport.com/library...le.cfm/ID/3854

Clauw is the main one who is very vocal about not using tender points for diagnosis.

If you Google any of these guys' names, you'll come up with hundreds of web sites where they are mentioned.

Thanks to the person who posted the comment on "Welcome" archive

2007-11-21T10:36:00.001-05:00

Hello there! Thank you so much for posting your comment and sharing your thoughts. I am thrilled to know that you visited my blog. Sometimes I wonder is anyone reading this?!

Don't apologize for being bitter... I know exactly how you feel.

I've written a lot on my web site www.fibroworks.com about working with fibromyalgia. You might want to check out some of my essays. I went from working 65+ hours a week, down to probably 20 on a good week. I'm now back up to 40 hours, plus weekends, but I do a LOT of it from home. I'm lucky because I work for my boyfriend, so I can make my own hours, and he is very understanding about my condition. He actually looks out for me more than I do myself. Above all, you need to take it slow, don't overdo, and stick with people who will support you and believe you.

I was the opposite of you because I "knew" I had fibromyalgia, but doctors would not agree. Whereas you had a hard time accepting the diagnosis, I was actually happy that I finally had the diagnosis because it meant I could move forward (I was worried I had lupus, MS, or some other more life-threatening illness). Once I knew I had fibromyalgia, I was able to put plans in action and move towards rehabilitation. I use the term rehabilitation because there really is no cure or recovery, so we have to rehabilitate ourselves in much the way any disabled person would.

I would greatly enjoy communicating more on all the topics you've raised. We can continue to do so here, and I also run two groups... one on Yahoo called "Undiagnosed" (but even if you're diagnosed, you can join -- the focus is the difficulty in getting a diagnosis, and I started the group before I had a diagnosis, so the name stuck). And the other is on my web site http://www.fibroworks.com/ It is a forum, and I host personal fibro blogs on the forum for free.

The URL is http://www.fibroworks.com/board2 we need more members, and there are people in each group who are going thru the same things we are, so it's a great thing to do.

Thank you so much for getting in touch with me! Happy Thanksgiving (assuming you are in the U.S.!)

Thanksgiving strategies: shopping/cleaning, for fibromytes

2007-11-19T10:15:00.000-05:00

Thought I would share this because my brother and I came up with the ultimate "plan" for avoiding stress this week. We are not having Thanksgiving together, but we talked yesterday and we both decided that we are going shopping today, very early in the morning (in fact I am leaving in a few minutes) and do ALL of our shopping today so we can avoid crowds and not have to go near a store later this week. We don't live near each other, so we're not shopping together, but we are both carrying out the plan in our own town lol. If you can't go early in the morning, then go late at night. I always try not to shop during "peak" hours. It just freaks me out otherwise.For those of us with fatigue and pain disorders, or panic/anxiety disorder, scheduling stressful activities in such a way will prevent or lessen our symptoms.I'm having a couple of guests for Thanksgiving, and we're doing a very casual thing. But, that means I still have to clean my house. I cleaned on Saturday because the kids came by (good excuse to clean). So now, I will clean one area each day this week (Monday, Tuesday, Wednesday). And then do an all-over clean on Thursday before they arrive. We also do Thanksgiving late (around 5:00) instead of the usual New England Thanksgiving which happens around noon. This way, I have all day to relax and/or cook/clean before people arrive. The last thing I want is people arriving at NOON LOL!!My guests are all bringing a dish or two, so it's more like "pot luck" rather than traditional T.G. fixins, although I am cooking a turkey breast and all the other things, just because we want to have them. A friend gave me a homemade pie as an early Christmas present! So we will have that for dessert. All I have to do is pop it in the oven!So, just some things I'm doing which I figured I'd share about in an effort to help others.Have a happy and SAFE Thanksgiving!K2

Fibroworks Forums and Blogs

2007-11-12T19:39:00.001-05:00

Please join Fibroworks Forums and Blogs by clicking here:

http://www.fibroworks.com/board2

Communicate with other fibromytes, and set up your own fibromyalgia blog, which fibroworks.com will host for you, for free!

Fibro Works Forum

2007-11-01T20:26:00.000-04:00

I've added a forum to www.fibroworks.com Please check it out, and if you're a fibromyalgic, please join the forum.

There are discussion areas, and we can add more forums once we get going.

The most interesting and exciting feature is the ability for each forum member to have their own BLOG right there on www.fibroworks.com, for FREE!!

So, please register, login, and start talking and blogging through the Fibro-Fog!!

Here is the URL: www.fibroworks.com/board2

Fibroworks news

2007-10-28T11:49:00.001-04:00

Fibroworks.com is about to launch a new message board/bulletin board which will provide privacy for users who want to talk about fibromyalgia. In addition, each user will have the capability to create their own fibromyalgia "blog" or "page", for free, hosted by fibroworks.com

Also, this blog, The Fibro-Fog Chronicles may be moving out of Blogger and into fibroworks.com.

Will post as soon as these changes are made.

K2

Missouri residents: fibromyalgia study

2007-10-21T13:03:00.000-04:00

PROTOCOL RESEARCHING THE EFFECT OF PRAYER HEALING ON FIBROMYALGIA AND CHRONIC PAIN

Background

Chronic pain afflicts millions of Americans. Fibromyalgia is one of such chronic pain syndromes with features that include chronic, widespread musculoskeletal pain and stiffness and associated with fatigue, poor sleep and the presence of discrete tender points. Fibromyalgia affects more than 3.7 million people in the U.S. It sometimes devastates patient’s daily life severely. There are some different kinds of treatments such as medications, electrical stimulation, and psychological approach, but many patients still suffer from severe persistent pain.
In a recent study of CAM in the United States, 7% of persons surveyed reported having tried some form of “spiritual healing.” In the same study, 35% of persons surveyed reported that they had used prayer to address their health-related problems. There are several studies which showed the positive effect of intercessory prayer. There are also a couple of studies which evaluated the efficacy of spiritual healing on pain.
In this study, the PI will invite an experienced spiritual healer from Japan and study the effect of his healing power on fibromyalgia and chronic pain. His name is Mr. Ziho Otsuki. He graduated from Christian university in Japan and practiced Buddhist healing technique in the temple after graduating school. After that, he went to China and learned Qigong technique, which is one of Chinese traditional medicines under the master. His healing is mostly performed from a distance. The spiritual healer who will do distant healing in this study is a professional Japanese healer with long-year experience of distant healing. He also has treated patients with persistent chronic pain and fibromyalgia successfully. The PI has studied his healing power with electroencephalogram before, and his healing energy remarkably changed the brain wave pattern of the subjects. During his healing, the subjects felt very relaxed. His healing technique is not based upon any one specific religion, but based upon the common component of prayer rituals in all religions.
Objective

To study the effect of distant healing of the Japanese healer on fibromyalgia and chronic pain

Study Design

This study uses a pretest-posttest control group design with repeated measure of the dependent variables such as McGill Pain Questionnaire ratings, visual analog scale of pain etc. In this study, the PI will recruit 40 participants with fibromyalgia or chronic pain, and they will be assigned randomly either to the experimental group or to the control group.

Population

18 Years and above, men and women

Inclusion Criteria:
・ Participants who have fibromyalgia or chronic pain which is not caused by clear organic disease, or persists long after a reasonable period of healing following injuries or surgery
・ Participants who can attend the one-time initial session at Holos University (Springfield, MO) in the middle of January, 2008

Research Intervention:
The intervention of this study is the distant healing by the Japanese spiritual healer. In this study, the Japanese spiritual healer will do the distant healing by using the simple information of the prospective participants such as their facial photos, names, addresses, and the severity of disease. The prospective participants will be asked to come to the office for the initial session on the scheduled day. In this session, the healer will meet the prospective participants. They will be asked to do 20-minute meditation then with the healer. This purpose of this initial session is for the prospective participants to experience his healing with his presence. The healer will go back to Japan after completing the sessions of all prospective participants, and he will start the distant healing. The prospective participants will be assigned either to the experimental group or to the control group randomly. This procedure will be done blindly to the participants and the experimenter. He will send the healing energy only to the participants who will be assigned to the experimental group every day. He will continue this distant healing for two months. After completing two-month healing intervention, he will start distant healing to the participants who will be assigned to the control group.

Participation fee: For free (Participants must pay for their own travel cost)

Contact Information: Kenjiro Tsubono M.D.(in Japan), Th.D.candidate
Address: 4355 S.National Ave, Apt 909, Springfield, MO, 65810
Phone: 417-888-0012
Email: tubonok-tky@umin.ac.jp or kenjiro76t@yahoo.com

Location: Holos University (www.hugs.org) it is located at Springfield, MO, and within 20-minute driving from Springfield/ Branson airport　

Date: The initial session will be held in the middle of January, 2008 at Holos Univeristy. All participants must attend this initial session one time. The session will be held as a small group setting.

Eisenberg DM et al. “Trends in Alternative Medicine Use in the United States, 1990-1997: Results of A Follow-up National Survey,” JAMA, 280 (1998): 1569-75.
Harris WS et al. “A Randomized, Controlled Trial of the Effects of Remote, Intercessory Prayer on Outcomes in Patients Admitted to the Coronary Care Unit,” Arch Intern Med, 159 (1999): 2273-8.
Sicher F, Targ E, Moore D, Smith HS. “A Randomized Double-blind Study of the Effect of Distant Healing in A Population with Advanced AIDS,” Western Journal of Medicine, 169 (1998): 356-363.
Byrd, RC. “Positive Therapeutic Effects of Intercessory Prayer in a Coronary Care Unit Population,” Southern Medical Journal, 81 (1988): 826-829.
Lyvers M, Barling N, Harding-Clark J. “Effect of belief in psychic healing on self-reported pain in chronic pain sufferers,” Journal of Psychosom Res, 2006, 60(1): 59-61.
Abbot NC et al. “Spiritual Healing as a Therapy for Chronic Pain: A Randomized, Clinical Trial,” Pain, 2001, 91(1-2): 79-89.
Sundblom DM et al. “Effect of Spiritual Healing on Chronic Idiopathic Pain: Medical and Psychological Study,” Clinical Journal of Pain, 1994, 10(4): 258.

Fibro Works and Yahoo group recognized by NFA!

2007-10-16T09:44:00.000-04:00

The National Fibromyalgia Association (NFA) now lists my "undiagnosed" Yahoo group under its support group section!! So far I've had at least two new members join the group, and one of them is our first male participant! Very exciting! Click on the button to your left if you want to join the group. People who have been diagnosed are always welcome!

Due to an increase in Google searchers and NFA members finding fibroworks.com, I wanted to mention that men with fibromyalgia shouldn't feel excluded from using fibroworks.com, or from joining the undiagnosed group at Yahoo. The basic concept of active, working people with fibromyalgia applies to both women and men.

I'd welcome any feedback, so please reply to this post, post a word or two on the fibroworks message board, or fill out the feedback form on fibroworks.com!!

Finally! A celebrity spokesperson for Fibromyalgia!

2007-10-09T10:55:00.001-04:00

Breaking news from the NFA!!

http://www.fmaware.org/site/News2?page=NewsArticle&id=6261

MSG and TMJ -- Back to the Grind

2007-09-30T11:18:00.000-04:00

I did something really stupid last night. It was very chilly here
(39 degrees I hate fall!), so I decided to make some
soup. I had just bought it at the store yesterday because it's that
time of year -- gotta warm up. I am SO intolerant of the cold. I was
absolutely chilled to the bone last night. Stupid me, I bought
Campbell's Chicken Noodle, forgetting it has MSG in it and I am
extremely sensitive to MSG.

To make matters worse, I didn't feel like eating last night, so I put
it off until almost 10:00 (we usually eat at 9:00, so it's not like
it was THAT much later). But then, I went to bed around 11:00, too
soon after eating.

I awoke at 4:00 this morning in a total fibro-flare all over my
entire body, even including my knees. I haven't had knee pain in a
long time, so I knew this was bad. But the worst part was the
horrible headache. I actually thought about going to the ER, it was
that severe. I drank a ton of water and went back to sleep until
6:30 when the pain woke me up again, and this time I got up and had
no choice, I HAD TO take Motrin. Went back to sleep until 7:45. The
Motrin definitely worked. It relieved the pain down to a manageable
hum. This was a definite reaction to the MSG. Boy, am I pissed that
I didn't think of it before I ate the stuff.

MSG is a horrible ingredient, it should be banned. Please try not to
eat this stuff if possible!

I still have a little headache, and my shoulders and neck and knees
are achy but it's just way in the background. My stomach is a total
mess and doing flip-flops.

I stopped taking Motrin a few days ago (cold-turkey) because it seemed
I was building up too much of a tolerance to it. Well, lemme tell you,
it worked today! Thank goodness.

I figured out that my TMJD has been a major part of my flare-ups. I think
I'm back to grinding my teeth in my sleep, but I also tend to eat a lot of
chewy or hard foods. I get a flare up after eating every meal, and it finally
dawned on me that the TMJ is causing referred pain down my neck, shoulders, back
and arms -- and also my face. Especially if I eat hard or chewy foods.

So, I'm on softer foods now and making a conscious effort to eat soft foods
to see if this helps with the after-meal flare-ups.

Stay tuned!

The 12 Steps and Fibromyalgia

2007-09-23T17:53:00.001-04:00

As a child, I was spoiled rotten. I always set goals, even going as far back as I can remember. The main goal was to own possessions, toys mostly, LP records, "45's" and books. Lots and lots of books. I would bring my completed order form in to school on book-buying day and I'd have chosen probably fifteen or twenty books. Only one other kid would have as many as me, and that was "the brain" of the class, Something Goldstein. Perhaps, I, too, was the brain of the class. The other kids would gaggle and gaff, and sometimes gasp, as I carried my twenty books back to my little desk. I don't know why, but I guess I was different, I just know I loved to read, and started reading at age four according to reports from the folks.

Christmas and birthdays, the goal-setting would begin several weeks in advance. I would draft a lengthy list, something like you'd see Santa Claus reviewing in a holiday storybook or cartoon. I'd give the list to Mom and Dad, and Christmas morning (or birthday morning), I'd receive each and every gift I'd put on my little goal-setter list.

I had other goals, too. How to stay home from school (a school-phobe, and "sickly" my whole life), was the main one.

Into the teens and approaching adulthood, the goals became loftier: get the job, buy a car, get the guy, break up with the guy, get married to someone else (did that), get divorced (did that, too), have a baby (a goal, sadly, never reached and probably due to my health situation), start college (late), graduate college with a 4.0 GPA, get the better job, get a raise, get a promotion, buy a house, buy another house. Each goal, with the exception (sadly) of having a kid and marrying my darling Gil (I'm still waiting for him to ask 23 years later!) I have achieved with ease and success. Sobriety needs to get an honorable mention. And of course, adopting and raising my wonderful dogs and cats.

After I ticked all the large and lofty goals off my list, there were, and have always been, the daily goals. From exercise triumphs to the pile of papers on my desk, to a load of laundry, and grocery shopping. I set goals every single day, and I generally stick to them and achieve them. I've always been a high-achiever, and this more or less comes naturally to me. Most fibromyalgics are high-achievers.

But some fibromytes may have to work on goal-setting. How to do it? Well, these days I personally do it all in my head, occasionally leaning on a piece of paper for help on a particularly fibro-fog-ridden day, or sending myself an email or two from home which I'd later receive at work, prompting me to remember to pay this bill or that. But those who aren't experienced at setting goals, or who've never tried it before, should revert to the childhood method of making a list, and checking it twice. Carry it around with you in your purse or pocket. Set up a list in your cell phone or PDA. Once the list is drawn (and you can add to it or subtract from it depending upon what life throws at you later in the day), start doing the things on it and cross them off as you go. By the end of a so-called perfect day, you should have no items on your list.

Beginners should go slow. Don't shoot for the moon, and remember this is not a "to do" list. This is a list of things you want to do today, followed by a list of things you have to do today (unfortunately, we all have obligations). You can formulate a "to do" list, too if you'd like, but that's a separate agenda from what we're discussing here. Again, no shooting for the moon, the stars and the sky. Keep it simple. If you have one goal, perhaps that's taking a shower, then that's your goal for the day. If and when you complete the shower, check it off your list. You're done with your goal-setting for that day. If you're in a particularly bad patch with your fibromyalgia, these kinds of days may happen more often than not. And that's ok. Less is more. One day at a time, sometimes one hour, sometimes one minute at a time.

Now, you may have noticed that I like to use a lot of cliche phrases. "Keep it simple" "Less is more" "Shooting for the moon" "One day at a time". In my past, I spent a lot of time in 12-Step programs (AA, Al-Anon, Co-Dependents Anonymous). It's been about a decade and a half since I attended those programs and meetings, but I still apply the principles of the 12 Steps (originally created by two men who founded AA nearly sixty years ago! wow!), in my life. "Practice these principles in all of our affairs" was drilled into our heads during our early months of sobriety in AA. And I still do it today, even though I haven't attended an AA meeting in more than 15 years.

I truly believe that the 12 Steps and their accompanying "slogans" apply to everything and anything. If you are familiar with the 12 Steps yourself, try applying some of them to your fibromyalgia, and use the slogans often (not just in dealing with fibro, but in every aspect of your life). Now, obviously, Step 1 "We admitted we were powerless over [alcohol] and that our lives had become unmanageable" can certainly be modified slightly to apply to fibromyalgia: "We admitted we were powerless over fibromyalgia, and that our lives may have become unmanageable". I would be hard-pressed to suggest that anyone with fibromyalgia definitely has an unmanageable life like someone with alcoholism, but certainly it's possible that our life has become unmanageable enough to warrant recognition of this fact. That's all Step 1 is: recognizing that there's a problem, and you're powerless over it. As I've said before, Fibromyalgia Just Is. It exists, and you can control it sometimes, but basically you have no real power over it. It'll crop up whenever it feels like and turn your day upside-down, just when you thought you had it licked.

Steps 2 and 3 deal with the "higher power" or as they say in AA "turning it over". Whether that power is "God" in whatever form you believe in God, the universe, or something/someone else. Perhaps a deceased relative whom you still feel a special and spiritual connection with, your doctor maybe, or even your dog (after all "dog" spelled backwards....). Or, in the case of good ol' AA, a group of people (in AA they say "Group Of Drunks" = G.O.D.). However you want to do it, turn your pain and fatigue, your sleepless nights and your IBS and other symptoms over to something greater than yourself in a spiritual act of release and liberation. It will feel liberating, I promise you. Just think, you no longer have to worry about fibromyalgia... another will take care of it. By the way, this act of releasing and liberating can be done every day, or 10,000 times a day -- as often as you need it. Like I said, one day at a time, or sometimes one hour at a time, or even one minute at a time. Do it over and over again, until it becomes repetitive and second-nature.

I recommend another similar method called "Creative Visualization", a technique mastered by Shakti Gawain and outlined in her book of the same title. You can get this book in bookstores everywhere, and I tell as many people as possible to get this book and practice the visualizations and meditations. They are quick, easy, and can be done just about anywhere, any time. Gawain's technique of visualizing your problem inside of a balloon and letting the balloon go up into the heavens as a means of "letting go" is so powerful and simple, it is nothing short of sublime.

And that brings me to the slogans of the various 12-Step programs. They are so cliche it is almost laughable, but you know what? They are true to life and again can be used every day for almost every situation. "Live and Let Live" "Let Go" (and let God, if you wish) "Keep It Simple" are some of my favorites. You're going to see these mentioned a lot in the pages on this web site, and in my writings in general. So keep it real, keep it simple, live your life and let others live theirs, and let go of resentment and despair and you will relieve yourself of some of the burdens we fibromyalgics face in our struggle to feel better, one day at a time.

The remaining steps 4 through 12 deal with taking formal inventory of ourselves and our character defects, sharing those insights with at least one other human being, making amends and apologies, praticing prayer and meditation, having a spiritual awakening as a result of going through these steps, and finally sharing the message with others. Some of this is challenging to apply to fibromyalgia, after all, didn't I just say that fibromyalgia just is and we didn't do anything wrong to be saddled with this disorder? Yes, and I mean that. However, I strongly believe that the 12-Step "inventories" are valuable in all facets of life, and can be modified to fit any situation. Sometimes I'll even do a rapid-fire 12-Step inventory if something unpleasant happens at work, and I can figure out a lot of answers, and a lot about other people and myself, by doing so. The most important parts are the last two steps: having a spiritual awakening (your spirituality is an important feature of rehabilitation in fibromyalgia -- body, mind and spirit -- this is not just your body betraying you, it's a whole-person syndrome) and finally sharing the message with others.

Why would you need to share the message with others? For one thing, there's power in numbers. And, knowledge is power. You may learn something from another person with fibromyalgia that you didn't know before, and/or they may learn something from you. Support groups do work. Many of us are too exhausted to drive to an in-person meeting place. Thankfully, these days hundreds upon thousands of support groups are available on the internet at sites like Yahoo, myspace, Google, WebMd and countless others. All you need do is type "fibromyalgia support group" in any search engine, and you'll be overwhelmed. Sharing information and support, "carrying the message" as they say in the 12 Steps, is vital and crucial to your rehabilitation and management of fibromyalgia.

You can join my Yahoo group "undiagnosed" by clicking on the icon below. This group is generally intended for people who have not yet been diagnosed, but we welcome those members who had difficulty getting a diagnosis (I think that's just about all of us).

Now what's all this AA-speak got to do with goal-setting? Quite a lot, actually. By clearing yourself of the brain-clutter associated with living with a chronic illness, and using modified 12-Steps to do so, you open yourself to be able to prioritize and make your life manageable once again. Setting goals is the first "step" towards managing your life. We'll talk about modifying our habits and lifestyle a little bit later, but for now, setting goals each day, even if it's just one goal (walk to the mailbox and back, ask my boss for a new chair, spend two minutes meditating, take your medication) set that goal and tick it off your list when you're done. Tomorrow's another day, and you get to start all over again.

Fibro-Fog Chronicles

2007-09-14T09:47:00.000-04:00

So, I'm watching TV yesterday while at work (watching All My Children, but of course!) and this ad comes on the TV for a fiber supplement. I nearly leapt out of my chair across the desk and into the TV... the first frame of the ad is a picture of a computer and a web site/blog called "The Fiber Chronicles".

Heeeeeyyyyy no fair! I thought of it first!!

K2

Yes, it IS Fibromyalgia

2007-09-10T09:52:00.000-04:00

Fibromytes know that chronic, widespread muscle and nerve pain, non-restorative disordered sleep, tender points and indescribable fatigue are the key symptoms of fibromyalgia, but fibromyalgia is more than that: it's a collection of other symptoms in addition to pain, sleep problems, tenderness and fatigue.

Did you know that the following symptoms and signs are very common in fibromyalgia?

Muscle spasms
Lack of stamina and endurance
Swollen glands
Tender lymph nodes
Joint pain
Stiffness
Low-grade fever
Migraines
Brain fog
Cognitive problems
Numbness, tingling and burning sensations
TMJ
Dizziness
Heart palpitations and chest pain
Dry eyes
Earache or itch
Dry skin
Skin redness
Fingers swelling (a common complaint is that rings no longer fit)
Hair loss
Itching
Mouth sores
Easy bruising
Raynaud's phenomenon
Strange sensations (like a feeling as if a bug is crawling on you)
Mitral Valve Prolapse
Painful menstrual periods
Vulvodynia
Interstitial cystitis
Irritable Bowel (IBS)
Restless leg syndrome
Depression
Anxiety
Mood swings
Fibro-fog (impaired memory and concentration)
Chemical or drug sensitivities
Exercise intolerance

Most fibromytes have several of these signs and symptoms in addition to the key elements of FMS. Few have all of these symptoms, but some of us have almost all (including me!).

These symptoms come and go, and are chronic and unpredictable. This can result in making advance plans for socializing difficult to impossible, because we never know if or when we're going to be hit with a case of IBS, anxiety, feverishness, volvodynia, a painful menstrual period, or a combination of several symptoms.

Fibromyalgia is unpredictable in the extreme. And it's important to always remember that none of these symptoms arises due to anything we are doing (or not doing).

Fibromyalgia just is.

Fibromyalgia in the Workplace

2007-09-05T10:45:00.000-04:00

Excellent articles on fibromyalgia in the workplace:

http://www.sjhc.london.on.ca/sjh/programs/fms/work.htm

http://www.talkaboutsleep.com/sleep-disorders/2005/11/fibromyalgia-workplace-job.htm

http://www.fmscommunity.org/Fibromyalgiaaccomodations.htm

http://fmscommunity.org/habit.htm

http://www.jobaccess.gov.au/joac/Advice/DisabilityOne/Fibromyalgia.htm

http://www.michigan.gov/gov/0,1607,7-168-23442_25488_43769-168405--,00.html

K2's New Web Site

2007-09-04T10:57:00.000-04:00

Dear Friends,

I have created another web site. It's still under construction. It's called Fibro Works, and it's aimed at active, working women with fibromyalgia. I sure hope you'll take a look at it!

www.fibroworks.com

or

www.fibromyalgiaworks.com

K2

Cutting through the fog

2007-08-24T19:44:00.001-04:00

I have changed the name of this blog from "K2's Walking Wounded" to "The Fibro-Fog Chronicles" for several reasons.

"Walking Wounded" was the first essay I wrote describing how I feel on an almost daily basis. It has bothered me to have this as the name of the blog because it's a rather negative description. Furthermore, in our current world, our service men and women are returning from war literally walking wounded, and so I feel it is inappropriate of me to categorize myself as such, given the seriousness of their maladies as compared to mine.

Now that I have finally been diagnosed, the fibro-fog title now fits. The word "chronicle" has a double-meaning in that fibromyalgia is a chronic illness. Get it? Chronic? Chronic-le!

Finally, I'm more apt to have more readers if I have a searchable title. How many fibromytes are out there Googling "fibro-fog" or "fibro fog" or "fibrofog"? Probably thousands. More people will visit my blog if I have a searchable name.

And so it is, that I re-name this blog, "The Fibro-Fog Chronicles" with "walking wounded" as the original essay way back at the beginning.

It also occurred to me that I chose a lighthouse as the template or backdrop of this blog.

Now, at first, I chose that template because, well, I live right next to Nauset Lighthouse on Cape Cod.

There I was, lying on the couch tonight in a complete fibro-flare, staring at the wonderful watercolor of "my" Nauset Lighthouse which adorns the wall in my living room not on Cape Cod. A reminder (thank you Kyra!) of my wonderful lighthouse for when I'm not there to see the real thing.

When I originally sub-titled this blog, "The Fibro-Fog Chronicles", never did it occur to me, until just tonight, the symbolism of the lighthouse cutting through the fog. I kid you not, it just didn't occur to me. It wasn't planned at all. Yet, there it is. In all its beauty and glory. My wonderful lighthouse, cutting through the fibro-fog.

Good night, everybody!

K2

Claudia Craig Marek's letter Understanding Fibromyalgia

2007-08-21T10:34:00.000-04:00

Claudia Craig Marek wrote this letter. She
publishes it in her book, "Fibromyalgia, The
First Year" and offers readers to adopt it as
their own or just use it for inspiration.
Please note that it is written to a "significant
other" more than to another family member or friend,
but you could certainly change and adapt it to fit
your situation:
****************
Fibromyalgia isn't all in my head, and it isn't
contagious. It doesn't turn into anything serious
and nobody ever died from fibromyalgia though they
might have wished they could on really awful days.
I can't control how often I feel good or how often
I feel terrible. If you want to read articles about
fibromyalgia I can show you some that I think are good.
If you just want to learn as we go along, that's fine too.
This is definitely going to be a process. The first step
is for you to believe that there is an illness called
fibromyalgia and that I have it. This may sound simple,
but when you hear about some of the symptoms I don't want
you to think I'm making this up.

Fibromyalgia is a high maintenance condition with lots
and lots of different kinds of symptoms. There's no
way to just take a pill to make it go away, even for
a little while. Sometimes a certain medication can
make some of my symptoms more bearable. That's about
the best I can hope for. Sometimes I can take a lot
of medication and still not feel any better. That's
just the way it goes.

There's no cure for fibromyalgia, it won't go away.
If I am functioning normally, I am having a good day.
This doesn't mean I'm getting better, because I suffer
from chronic pain and fatigue for which there is no cure.
I can have good days, weeks, or even months. But a good
morning can suddenly turn into a terrible afternoon.
I get a feeling like someone has pulled out a plug and
all my energy has run out of my body. I may get more
irritable before these flares, and suddenly get more
sensitive to noise, or just collapse from deadening fatigue.
Other times there may be no warning, I may just suddenly feel
awful. I can't warn you when this is likely to happen, because
there isn't any way for me to know. Sometimes this is a real
spoiler, and I'm sorry.

Fibromyalgics have a different kind of pain that is hard to treat.
It is not caused by inflammation like any injury. It is not a
constant ache in one place like a broken bone. It moves around
my body daily and hourly and changes in severity and type.
Sometimes it is dull and sometimes it is cramping or prickly.
Sometimes it's jabbing and excruciating. If Eskimos have a
hundred words for snow, fibromyalgics should have them for
pain. Sometimes I just hurt all over.

Besides pain we have muscle stiffness, which is worse in the
mornings. Sometimes when I get up out of a chair I feel
like I'm ninety years old. I may ask you to pull me up.
I'm creaky and I'm clutzy. I trip over things no one can
see, and I bump into the person I'm walking with and I drop
things and spill things because my fingers are stiff or
my coordination is off. I just don't seem to connect the
way I should. Hand-eye, foot-eye coordination; it's all off.
I walk slowly up and down stairs because I'm stiff and
I'm afraid I might fall.

Because I feel badly most of the time I am always pushing myself,
and sometimes I push myself too hard. When I do this, I pay the
price. Sometimes I can summon the strength to do something special,
but I will usually have to rest for a few days afterwards because
my body can only make so much energy. I pay a big price for overdoing
it, but sometimes I have to. I know it's hard for you to understand
why I can do one thing and not another. It's important for you to
believe me, and trust me about this. My limitations, like my pain
and my other symptoms, are invisible but they are there.

Another symptom I have is problems with memory and concentration,
which is called fibrofot. Short-term memory is the worst! I am
constantly looking for things I have no idea where I put, I walk
into rooms and have no idea why. Casualties are my keys, which
are always lost, my list of errands, which I write up and leave
on the counter when I go out. Even if I put notes around to
remind myself of important things I'm still liable to forget them.
Don't worry, this is normal for fibromyalgics - most of us are
frightened that we are getting Alzheimer's.

I mentioned my sensitivities earlier and I need to talk about them
again. It's more like an intolerance - to everything. To noise,
especially certain sounds like the television or shrill noises.
To bright lights, to fluorescent lights. To smells like fish or
some chemicals, or fragrance or perfume. I also have a problem
with heat and with cold. It sounds like I'm never happy but that
isn't it. These things make me phyisically ill. They stress me
out and make my pain worse, and I get exhausted. Sometimes I just
need to get away from something, I just don't know how to say it.
I know that sometimes this means I will have to go outside, or out
to the car, or home to sit alone, and that's really all right.
Sometimes when I feel lousy I just want to be by myself. When
I'm like this there's nothing you can do to make me feel better,
so it's just best to let me be.

I have problems sleeping. Sometimes I get really restless and
wake up and can't get back to sleep. Other times I fall into
bed and sleep for fourteen hours. I'm sure that's confusing
to be around, and I know there are times when my tossing and
turning and getting up and down to go to the bathroom disturbs
you. We can talk about solutions to this.

All these symptoms and the chemicals in my brain can make me
depressed, as you'd imagine. I get angry and frustrated and
I have mood swings. Sometimes I know I'm being unreasonable
but I can't admit it. Sometimes I just want to pull the covers
over my head and stay in bed. These emotions are all very strong
and powerful. I know this is a very hard thing about being with me.
Every time you put up with me when I'm in one of my moods, secretly
I'm so grateful. I can't always admit it at the time, but I'm
admitting it now.

I have other symptoms like irritable bowel and pelvic pain
that will take their toll on our physical intimacies. Some
of these symptoms are embarrassing and hard to talk about but
I promise to try. I hope that you will have the patience to
see me through these things. It is very hard for me too because
I love you and I want to be with you, and it makes everything
worse when you are upset and tired of dealing with all my problems.
I have made a promise to myself and now I am making it to you.
I will set aside time for us to be close. During that time we
will not talk about my illness. We both need time to get away
from its demands. Though I may not show it always I love you
a million times more for standing by me. Having to slow down
physically and having to get rid of unnecessary stresses will
make our relationship stronger.

Fibromyalgia: Symptoms, Diagnosis, Treatment & Research

2007-08-17T19:23:00.000-04:00

This is one of the best descriptions of Fibromyalgia I have ever seen. It was written by doctors who are members of the National Fibromyalgia Partnership (http://www.fmpartnership.org/ is their web site) . [Please note that this was written in 2006, before the recent (June, 2007)approval by the FDA of Lyrica for treatment of fibromyalgia.]

K2

FM Monograph (PDF Format)

Fibromyalgia: Symptoms, Diagnosis, Treatment & Research

© Copyright 2006, National Fibromyalgia Partnership. All rights reserved.

What Is Fibromyalgia?

Fibromyalgia (FM)) is a complex, chronic condition which causes widespread pain and fatigue and a variety of other symptoms. The name fibromyalgia comes from "fibro" meaning fibrous tissues (such as tendons and ligaments), "my" meaning muscles, and "algia" meaning pain. Unlike arthritis, FM does not cause pain or swelling in the joints. Rather, it produces pain in the soft tissues located around joints and in skin and organs throughout the body. Because FM has few symptoms that are outwardly visible, it has been nicknamed "the invisible disability" or the "irritable everything" syndrome.

The pain of fibromyalgia usually consists of diffuse aching or burning described as "head-to-toe," and it is often accompanied by muscle spasm. Pain can vary in severity from day to day and change location, becoming more severe in parts of the body that are used the most (i.e., neck, shoulders, and feet). In some people, it can be so intense that it interferes with the performance of even simple tasks, while in others it may cause only moderate discomfort.

Likewise, the fatigue of fibromyalgia also varies from person to person ranging from a mild, tired feeling to the exhaustion of a severe flu-like illness. Although FM does not cause physical deformities or affect a person’s expected life span, until the patient is able to manage it through appropriate treatment(s) and medications(s), fibromyalgia can make life very challenging on many different levels.

The exact prevalence of fibromyalgia in the U.S. population has not been thoroughly studied, but conservative estimates place the total between 4 and 6 million. Other experts believe the true number is closer to 10 million.1 An estimated 80% of sufferers are women, most of them working age, so FM has obvious consequences in terms of employment and family stress. FM also occurs in all other age groups as well as in men, and it exists in all races worldwide.

Other Conditions Associated With FM

In addition to pain and fatigue, a number of symptoms and syndromes are usually associated with FM. Like pain/fatigue, their severity may wax and wane over time, and individuals may differ in the extent to which they are troubled by them. Typically, patients suffer from one or more of the following:

Stiffness: Body stiffness is usually most apparent upon awakening and after prolonged periods of sitting or standing in one position. It may also coincide with changes in relative humidity.

Increased Headaches Or Facial Pain: Head/facial pain is frequently a result of extremely stiff or tender neck/shoulder muscles which refer pain upwards. It can also accompany temporomandibular joint (TMJ) dysfunction, a condition which occurs in an estimated one-third to one-half of those with FM and which affects the jaw joints and surrounding muscles.

Sleep Disturbances: Despite sufficient amounts of sleep, FM patients may awaken feeling unrefreshed, as if they have barely slept. Alternatively, they often have trouble falling asleep or staying asleep. The reasons for the non-restorative sleep and other sleep difficulties of fibromyalgia are unknown although research in sleep labs has documented alpha brain wave disruptions in the deep (delta wave) sleep of some patients.2

Cognitive Disorders: Individuals with FM report a number of cognitive symptoms which tend to vary from day to day. These include difficulty concentrating, "spaciness" or "fibro-fog," memory lapses, difficulty thinking of words/names, and feeling overwhelmed when engaged in multiple tasks. Although the underlying cause of these symptoms has yet to be clearly identified, research has shown that FM patients experience a somewhat decreased cerebral blood flow to the brain (i.e., thalamus and caudate nucleus) compared to healthy individuals.3 In addition, the mental distraction caused by pain and the side effects of some medications commonly prescribed for fibromyalgia may be partly culpable for cognitive difficulties.

Gastrointestinal Complaints: Digestive disturbances, abdominal pain, and bloating are quite common with FM as are constipation and/or diarrhea. Together these symptoms are usually known as irritable bowel syndrome or IBS. FM patients may also have difficulty swallowing food. Researchers think this may be a result of abnormalities in smooth muscle functioning in the esophagus.4

Genito-Urinary Problems: An estimated 40-60% of FM patients may experience increased frequency of urination or increased urgency to urinate, typically in the absence of a bladder infection.5 These symptoms are usually referred to as irritable bladder syndrome. Some may develop a chronic, painful inflammatory condition of the bladder wall known as interstitial cystitis. Women with FM may have more painful menstrual periods or experience a worsening of their FM symptoms during this time. Conditions such as vulvar vestibulitis or vulvodynia, characterized by a painful vulvar region and painful sexual intercourse, may also develop.

Paresthesia: Numbness or tingling, particularly in the hands or feet, sometimes accompanies FM. Also known as "paresthesia," the sensation can be described as prickling or burning.

Myofascial Trigger Points: A significant number of people with FM have a neuromuscular condition known as myofascial pain syndrome (MPS) in which very painful spots (trigger points) form in taut bands in muscles or other connective tissue, often as a result of repetitive motion injury, prolonged poor posture, or illness. Not only are these spots very painful but they also refer pain to other parts of the body in very predictable ways. Unlike FM which affects the entire body, MPS is a localized condition which occurs in very specific areas, typically the neck, shoulders, or lower back. TMJ is considered a form of MPS.

Chest Symptoms: Individuals with FM who engage in activities involving continuous, forward body posture (i.e., typing, sitting at a desk, working on an assembly line, etc.) often have special problems with chest and upper body (thoracic) pain and dysfunction.6 The pain may cause shallow breathing and postural problems. They may also develop a condition known as costochondralgia (also referred to as costochondritis) which causes muscle pain where the ribs meet the chest bone and is frequently mistaken for heart disease. Persons with FM are also prone to a largely asymptomatic heart condition known as mitral valve prolapse (MVP) in which one of the valves of the heart bulges during a heartbeat causing a click or murmur. MVP usually does not cause much concern unless another cardiac condition is also present. (Note: Anyone experiencing chest pain should immediately consult a physician.)

Dysequilibrium: FM patients may be troubled by light-headedness and/or balance problems for a variety of reasons. Since fibromyalgia is thought to affect the skeletal tracking muscles of the eyes, "visual confusion" and nausea may be experienced when driving a car, reading a book, or otherwise tracking objects. (Difficulties with smooth muscles in the eye may also cause additional problems with focus.)7 Alternatively, weak muscles and/or trigger points in the neck or TMJ dysfunction may cause dizziness or dysequilibrium. Researchers at Johns Hopkins Medical Center have also shown that some FM patients have a condition known as neurally mediated hypotension which causes a drop in blood pressure and heart rate upon standing with resulting light-headedness, nausea, and difficulty thinking clearly.8

Leg Sensations: Some FM patients may develop a neurologic disorder known as restless legs syndrome (RLS) which involves a "creepy crawly" sensation in the legs and an irresistible urge to move the legs particularly when at rest or when lying down. One recent study suggests that as many as 31% of FM patients may have RLS.9 The syndrome may also involve periodic limb movements during sleep (PLMS) which can be very disruptive to both the patient and to her/his sleeping partner.

Sensory Sensitivity/Allergic Symptoms: Hypersensitivity to light, sound, touch, and odors frequently occurs among those with FM and is thought to be a result of a hyperactive nervous system. In addition, persons with FM may feel chilled or cold when others around them are comfortable, or they may feel excessively warm. They may also have allergic-like reactions to a variety of substances accompanied by itching or a rash or a form of non-allergic rhinitis consisting of nasal congestion/discharge and sinus pain. However, when such symptoms occur, there is usually no measurable immune system response like that found in true allergies.10

Skin Complaints: Nagging symptoms, such as itchy, dry, or blotchy skin, may accompany FM. Dryness of the eyes and mouth (sicca syndrome) is not uncommon. Additionally, fibromyalgia patients may experience a sensation of swelling, particularly in extremities (i.e., fingers). A common complaint is that a ring no longer fits. However, such swelling is not like the joint inflammation of arthritis; rather, it is a localized anomaly of FM of unknown cause.

Depression And Anxiety: Although FM patients are frequently misdiagnosed with depression or anxiety disorders ("it’s all in your head"), research has repeatedly shown that fibromyalgia is not a form of depression or hypochondriasis. Where depression or anxiety do co-exist with fibromyalgia, treatment is important as both can exacerbate FM and interfere with successful symptom management.

Official Diagnostic Criteria

Fibromyalgia has had a long, if rather obscure, history as an illness. Masquerading behind numerous medical aliases, FM has existed throughout history and throughout the world. It was only in 1990 that official diagnostic criteria for FM were established by the American College of Rheumatology (ACR).11 They include:

(1) A History of Widespread Pain: Chronic, widespread, musculoskeletal pain lasting longer than three months in all four quadrants of the body. ("Widespread pain" is defined as pain above and below the waist and on both sides of the body.) In addition, axial skeletal pain (in the cervical spine, anterior chest, thoracic spine, or low back) must be present.
(2) Pain in 11 of 18 Tender Point Sites on Digital Palpation: There are 18 tender points that doctors look for in making a fibromyalgia diagnosis (see Figure 1 at the end of this document). According to the ACR requirements, a patient must have 11 of the 18 tender points to be diagnosed with fibromyalgia. Approximately four kilograms of pressure (or about 9 lbs.) must be applied to a tender point, and the patient must indicate that the tender point locations are painful.

As the ACR criteria suggest, a fibromyalgia diagnosis requires the "hands-on" evaluation of a patient by a skilled medical professional, typically a rheumatologist, though other medical specialists are becoming very knowledgeable in this area. As patients are not usually aware of the specific anatomical origins of pain in their bodies, self-diagnosis is not advised.
Because routine laboratory and x-ray testing is usually normal in fibromyalgia patients, a complete medical history and physical exam are crucial for a correct diagnosis. Since FM symptoms mimic several other diseases (for example, systemic lupus, polymyalgia rheumatica, myositis/polymyositis, thyroid disease, rheumatoid arthritis, multiple sclerosis, and others), it is necessary to rule out those conditions before a FM diagnosis is made. While a diagnosis of fibromyalgia does not preclude the co-existence of another illness, it is important to ensure that no other condition is mistaken for fibromyalgia so that appropriate treatment may be initiated.

Limitations of the ACR Diagnostic Criteria

In the absence of diagnostic laboratory tests or x-rays, the ACR diagnostic criteria were a milestone in the recognition and study of fibromyalgia. For the first time, researchers around the world could identify and study FM patients using standardized measures which in turn made the comparison of research studies possible. Patients who had fallen through the cracks of medical science could finally be diagnosed. Nevertheless, the criteria were not without their drawbacks.13

First, the tender point paradigm suggested that FM patients only experience pain in anatomically specific sites on the body. However, later studies, such as those reported by Granges and Littlejohn in 1993,14 began suggesting that individuals with FM are sensitive to painful stimuli throughout the body, not merely at the ACR-identified locations. Today, extensive body pain is commonly associated with FM.

Secondly, it quickly became evident that patient tenderness varied day-by-day and month-by-month. As a result, tender point counts on some days could be below the required 11 while on other days they might surpass it. Furthermore, patients did not always manifest pain in all four body quadrants. Some had unilateral pain; others had pain solely in the upper or lower halves of the body.

Thirdly, as FM researcher Roland Staud, M.D., has pointed out, while everyone with fibromyalgia has tender points, the number of tender points does not reflect the level of pain which patients are experiencing.15 In short, tender points do not correlate with pain.
Fourthly, as FM experts Daniel Clauw, M.D., and Leslie Crofford, M.D., remind us, the ACR criteria focus only on pain and do not include many other FM symptoms (i.e., fatigue, cognitive disturbance, IBS, etc.). As a result, the criteria "fail to capture the essence of the FM syndrome" and allow for "greater variability in studies of physiologic mechanisms other than pain processing."16

Finally, the tender point exams conducted by medical professionals require skill to perform and are subject to human error. When performed incorrectly (at the wrong anatomical point or with an incorrect amount of digital palpation), they yield erroneous results. Unfortunately, the tender points of fibromyalgia are also sometimes confused with the trigger points of myofascial pain syndrome. Not uncommonly, FM is mistaken for MPS and vice versa.

The search continues for a foolproof laboratory marker for FM. Meanwhile, the ACR criteria are still the most widely used diagnostic tool for fibromyalgia.

What Has Been Learned From FM Research?

Researchers once believed that something must be wrong with the muscles of FM patients because they seemed to be the origin of so much pain and dysfunction. In fact, FM’s former name, "fibrositis," literally meant inflammation of the muscles and soft tissue. However, later studies ultimately found no inflammation or nerve injury. Today, researchers generally concur that FM is a condition which is centrally mediated by the brain and not a disease of the periphery.

What has increasingly become apparent is that there are differences between persons with fibromyalgia, not only in the way they seem to develop FM but also in the way they manifest it symptomatically and respond to treatment. As a result, there has been a lot of speculation as to whether the FM population should be broken down into sub-groups.

In a 2002 editorial in the Journal of Musculoskeletal Pain, FM researcher I. Jon Russell, M.D., Ph.D., discussed the implications of such a suggestion. Among the questions he raised were:

• Is there an established basis in human disease for clinical sub-groups within a single diagnosis?
• How convincing is the evidence that there may be sub-groups of FM patients?
• Would sub-grouping help to explain some of the difficulties in defining the pathogenesis of FM?
• Are sub-groups identifiable by the presumed underlying etiology of FM [proposed etiologies have included: idiopathic, trauma, febrile (feverish) illness, genetically determined, or an associated inflammatory or painful condition] or would clinical sub-grouping more likely be based on a limited variety of human responses to any kind of insult?
• Could the recognition of a specific, clinical sub-group help to define more specific, and thus more effective, management?17

Discussion continues on these and other important, related questions. Meanwhile, what have researchers learned about fibromyalgia in recent years?

Family studies suggest that there is a high prevalence of fibromyalgia among relatives of patients with fibro-myalgia, with FM often following the female side of the family. Exciting new genetic studies are now underway to investigate the relative influence of genes and environment in the development of fibromyalgia.18,19

Increasingly, researchers have also identified several important abnormalities in the levels of certain key neurochemicals in the brain and central nervous system (CNS). Perhaps best known is the study by I. Jon Russell, M.D., Ph.D., of the University of Texas Health Science Center in San Antonio, which demonstrated that the brain neurochemical Substance P, the agent which signals the brain to register pain, exists in FM patients at a level that is three times higher than in normal controls.20 Also of interest is the discovery that the neurotransmitter serotonin, which modifies the intensity of pain signals entering the brain, appears to be deficient in patients with FM. Many of the medications currently used to treat fibromyalgia work to counteract this deficit.

As it becomes increasingly clear that there are significant abnormalities in pain processing in fibromyalgia, researchers are trying to determine whether the problem is an exaggerated brain/body reaction to basically normal stimuli (allodynia) or a magnified response to real pain stimuli (hyperalgesia).21

A great deal of interest has been directed at the neuroendocrine system and the abnormal status of such neurotransmitters/neurochemicals as calcitonin-gene-related peptide, noradrenaline, endorphins, dopamine, histamine, and GABA. Hormones of the hypothalamus, pituitary, and adrenal glands are thought to be dysfunctional, too.22 Research by Leslie Crofford, M.D., at the University of Michigan at Ann Arbor suggested that FM is a "stress-associated syndrome" (because it often occurs following physically or emotionally stressful events and is also exacerbated by them) with disturbances in the major stress response systems, the hypothalamic-pituitary-adrenal (HPA) axis, the sympathetic nervous system, and the autonomic nervous system.23 It also supported earlier ground-breaking research conducted by Robert Bennett, M.D., at the Oregon Health Sciences University, which found that the growth hormone axis is abnormal in individuals with FM.

Mexican researcher Carlos Abud-Mendoza, M.D., studied a subset of fibromyalgia patients who didn’t respond well to conventional therapy and found they actually suffered from a form of subclinical hypothyroidism that was not detected by routine lab tests. The hypothyroidism was believed to be rooted in a central nervous system dys-function.24

More recently, Manuel Martínez-Lavín, M.D., of the National Cardiology Institute of Mexico, and others have used a special technology known as heart rate variability analysis to demonstrate that the multi-systemic symptoms of fibromyalgia (i.e., pain, sleep disorders, numbness and tingling, headaches, irritable bowel syndrome, etc.) are in fact a result of a dysfunction of the autonomic nervous system (ANS), which is the system which regulates body temperature, blood pressure, heartbeat rate, and bowel and bladder tone and is capable of acting with great rapidity and intensity.25

It is hypothesized that the ANS dysfunction (dysautonomia) which occurs in persons with FM throughout the day and particularly at night features a "relentless" hyperactivity of the sympathetic nervous system, a sub-system of the ANS which is mediated by the neurotransmitter adrenaline (norepinephrine). Furthermore, during times of stress, fibromyalgia patients actually experience a sympathetic hypo-reactivity similar to an overworked engine which cannot respond to commands for more speed when asked to do so.26 This hypo-reactivity explains the fatigue, morning stiffness, dizziness, brain fog, and low blood pressure often associated with FM.

There have also been some exciting discoveries about the nature of fibromyalgia pain. Researchers from Georgetown University and the University of Michigan used functional MRI (magnetic resonance imaging) testing and discovered that when they applied mild pressure to the thumbnails of a group of FM patients, brain activity was activated in 12 locations compared to only two locations in healthy controls. When the investigators increased thumbnail pressure in the controls, their subjective pain ratings and pain activity also increased, but only eight of the areas of the brain activated were similar to those in the FM patients. One of the lead investigators, Dr. Daniel Clauw, remarked that:

In all, the fibromyalgia patients’ brains had both some areas that were activated in them but not in controls, and some areas that stayed ‘quiet’ in them but became active in the brains of controls feeling the same level of pain. This response suggests that (FM) patients have enhanced response to pain in some brain regions and a diminished response in others.27

Dr. Roland Staud has also demonstrated abnormalities in fibromyalgia patients’ central pain processing by examining their response to repetitive painful stimuli compared to normal controls. Using both thermal and pressure pain as the stimulus in his studies, he has found that it takes FM patients much longer to recover from repeated applications of painful stimuli compared to control subjects, thus demonstrating that their "pain memory" is increased.28
Not only do abnormalities in the brain and central nervous system seem to "spill over" into the body and produce the symptoms we know as fibromyalgia, there is also evidence that injuries, illnesses, or other major stressors in the body can overwhelm the brain and CNS and cause symptoms. For example, post-traumatic fibromyalgia can develop when an individual has been in a vehicular accident or suffered a physical injury.

In 1997, a team of investigators led by Israeli researcher Dan Buskila, M.D., reported on a study of the relationship between cervical spine injuries and the onset of fibromyalgia and found that FM was 13 times more likely to occur following a neck injury than an injury to the lower extremities.29 Research by Stuart Donaldson, Ph.D.; Mary Lee Esty, Ph.D.; and Len Ochs, Ph.D., has also suggested that FM may actually be a "CNS Myalgia" resulting from a mild traumatic brain injury which in turn causes abnormalities in the functioning of the brain and central nervous system.30 Severe emotional stress or physical illness is also thought to be a trigger for post-traumatic fibromyalgia in pre-disposed individuals.

Finally, some researchers have searched for an infectious cause of fibromyalgia. For example, using highly sophisticated polymerase chain reaction testing and nucleoprotein gene tracking, Garth Nicolson, Ph.D., of the Institute for Molecular Medicine in California, has been able to confirm the existence of blood infections in patients with fibromyalgia, chronic fatigue syndrome and Gulf War Illness which are caused by a microscopic organism known as a mycoplasma.31 To what degree these infections explain patients’ morbidity is not yet clear.

Fibromyalgia & Central Sensitivity

Not so long ago, medical researchers viewed fibromyalgia as a discrete medical entity. Increasingly, however, FM is being seen as a condition which overlaps significantly with certain other systemic illnesses and regional conditions that affect particular body organs. One of the earliest proponents of this view was University of Illinois researcher Muhammad Yunus, M.D., who developed the concept of Central Sensitivity Syndromes (CSS). CSS is an umbrella term for a number of associated conditions that share common clinical characteristics and a similar biophysiological mechanism. Dr. Yunus includes nine conditions in addition to fibromyalgia: chronic fatigue syndrome (CFS), irritable bowel syndrome (IBS), tension-type headaches, migraine headaches, primary dysmenorrhea, periodic limb movement disorder, restless legs syndrome (RLS), temporomandibular joint (TMJ) pain and dysfunction syndrome, and myofascial pain syndrome (MPS).

According to Dr. Yunus, members of the CSS family share certain common symptom characteristics (i.e., pain, fatigue, poor sleep, hyperalgesia, absence of structural tissue pathology, etc.); have common demographic features (i.e., female predominant); and exhibit neurohormonal dysfunctions which result in central sensitivity which in turn causes amplified, widespread, and persistent pain.32

With this new perspective, the long list of symptoms/syndromes associated with fibromyalgia can be seen in a special context rather than as one long, baffling list of seemingly incongruent complaints. When FM and allied conditions are viewed as part of a spectrum, then new, coordinated, multi-disciplinary approaches to research and treatment can be undertaken.
Researchers and patients still disagree on the extent to which systemic conditions like FM, CFS, Gulf War Illness, and multiple chemical sensitivity are similar, or even identical, conditions. Interestingly, Dr. Robert Bennett also points out that while FM patients are unlikely to develop another rheumatic or neurological disease, it is not at all unusual for patients with well established conditions like rheumatoid arthritis, Sjögren’s Syndrome, or lupus to develop FM.33 Other researchers have identified overlaps between FM and conditions such as inflammatory bowel disease and Lyme disease. More research will be necessary to unravel these puzzles.

Fibromyalgia Management

Because there is currently no "magic pill" for fibromyalgia, treatment aims at managing FM symptoms to the greatest extent possible. Just as individual manifestations of fibromyalgia vary from patient to patient, so do successful forms of treatment (e.g., what works for one patient may not work for another). In addition, medical practitioners often have different preferences as to treatment. Because successful FM treatment can involve a variety of medical professionals, patients usually benefit from a coordinated, team approach to disease management. The most common treatment strategies, used alone or in combination, are:

Prescription Medications

Note: The overview of prescription drugs included in this section is intended to familiarize you with the medications most commonly prescribed for fibromyalgia. It does not replace advice and treatment from your doctor which you are strongly urged to get before trying any prescription drug. It also does not include supplemental medications that might be recommended to you for the treatment of fibromyalgia-related conditions (i.e., TMJ, restless leg syndrome, irritable bowel syndrome, etc.) Drugs are listed by trade name first, followed by their generic name in parentheses. Special thanks to Russell Rothenberg, M.D., who reviewed this section for accuracy.

Analgesics are drugs that have been designed to relieve pain. Those commonly used to treat fibromyalgia include acetaminophen (i.e., Tylenol), anti-inflammatory medications with analgesic properties, and narcotic drugs which are sometimes combined with acetaminophen for added strength. As a group, analgesics are typically used to "take the edge off" of pain or to combat flare-ups.

Anti-inflammatory medications used to treat fibromyalgia include traditional NSAIDs (Non-Steroidal Anti-Inflammatory Drugs). As indicated above, because fibromyalgia is not an inflammatory condition, it is the analgesic property of these drugs that can sometimes be useful to FM patients. Among the traditional prescription NSAIDs are:

Indocin (indomethacin)
Voltaren (diclofenac)
Toradol (ketorolac)
Orudis (ketoprofen)
Naprosyn (naproxen)
Feldene (piroxicam)
Relafen (nabumetone)
Daypro (oxaprozin)
Lodine (etodolac)
Mobic (meloxicam)

Because stomach irritation can be a problem with these drugs, many doctors and pharmacists recommend taking them with food as a precaution. In addition, when the drugs are prescribed in large dosages or over a long period of time, they should be closely monitored as they can also cause gastrointestinal bleeding.

Narcotic medications (opioids) are controversial in the management of fibromyalgia just as they are in other chronic pain conditions. While these drugs can be very useful in the treatment of patients who are suffering from acute flare-ups of FM, a fear of addiction remains on the part of some doctors and patients. However, many experienced clinicians in the field of FM management have gone on record saying that with careful management, the use of narcotic painkillers need not be problematic.

Examples of drugs used in fibromyalgia treatment are:

Vicodin (hydrocodone + acetaminophen)
Darvocet (propoxyphene napsylate)
Percocet (oxycodone + acetaminophen)
Oxycontin (oxycodone hydrochloride)

Despite their reported usefulness in the treatment of episodes of severe FM pain, the effectiveness of narcotics in treating long-term, chronic pain is still uncertain. Rheumatologist Russell Rothenberg, M.D., Chair of the Medical Advisory Board of the National Fibromyalgia Partnership, notes that while opioids can be helpful in the treatment of acute FM flare-ups or in individuals who are highly disabled, they tend to be less effective in the treatment of chronic pain over the long term because they do not (chemically) address the root of the pain. As a result, the musculoskeletal problems associated with fibromyalgia are not dealt with. Because of this, a patient can eventually get worse, and the drugs can cease to be effective. If the patient requires long-term narcotic analgesics as part of a comprehensive treatment program for fibromyalgia, then long-acting drugs are usually preferable to short-acting drugs that can develop rebound pain overnight as the effect of the drug wears off. (Russell Rothenberg, M.D., Presentation to the National Fibromyalgia Partnership, January 25, 2004)
Ultracet (tramadol hydrochloride combined with acetaminophen) is a unique new centrally acting, synthetic, opioid analgesic which helps to relieve pain in three ways. Laboratory studies performed by Ortho McNeil suggest that it acts directly on parts of the brain where pain is received and on the spinal cord, and it reduces the size of the pain signal passed from one nerve to another. In a recent study published in the American Journal of Medicine (May 2003), rheumatologist/researcher Robert Bennett, M.D., concluded that a combination tablet containing tramadol and acetaminophen is effective for the treatment of FM pain without any adverse side effects.

It should be noted that Ultracet should not be taken by people who are allergic to codeine or other opioids, and it should not be used with alcohol. In addition, because a small percentage of people taking tramadol have reported seizures, particularly after combining Ultracet with other medications that are known to put patients at risk for developing seizures, it is important to first carefully assess an individual’s medication profile.

The Treatment Of Centrally Mediated Pain and other symptoms has become a more popular concept in recent years as more research points to the brain and central nervous system, and not the periphery of the body, as the source of dysfunction in fibromyalgia.

Tricyclic anti-depressants have been adopted for use in the treatment of fibromyalgia because of their ability to boost levels of the brain neurochemical serotonin (usually deficient in FM patients) and to control pain and promote sleep. They are usually prescribed in much lower dosages for FM than for depression, however. Common tricyclics include:

Elavil (Amitriptyline)
Pamelor (Nortriptyline)
Sinequan (Doxepin)
Desyrel (Trazadone)

One of the early drugs used to treat FM, amitriptyline has undergone extensive testing for effectiveness in fibromyalgia patients. Its primary side effects (similar to the other tricyclics) include: dry mouth, drowsiness, morning hangover, constipation, weight gain, and sometimes anxiety. Because of their sedating qualities, tricyclics are usually taken at bedtime.

Selective Serotonin Reuptake Inhibitors (SSRIs) are a form of anti-depressants which not only boost serotonin levels but also help to keep serotonin available longer in the system after it has been secreted by the brain. These medications can help manage the fatigue, cognitive impairment, and depression associated with fibromyalgia and are often taken in the morning. Common SSRIs include:

Prozac (fluoxetine)
Serzone (nefazodone hydrochloride)
Zoloft (sertraline)
Celexa (citalopram hydrobromide)
Paxil (paroxetine)

Common side effects include nervousness, insomnia, dry mouth, headache, nausea, diarrhea, and in the case of Zoloft and Paxil, sexual dysfunction.

In a 1996 study published in Arthritis & Rheumatism, a research team headed by Don Goldenberg, M.D., found that not only were the tricyclic Elavil and the SSRI Prozac each effective in the treatment of fibromyalgia, but when used as a combination treatment, they worked better than either medication alone. Since then, prescribing a SSRI drug during the day and a tricyclic at night has become a new tool in the management of fibromyalgia.

Selective Serotonin and Norepinephrine Reuptake Inhibitors (SSNRI’s) are a new group of medicines which are thought to work by increasing the activity of chemicals called serotonin and norepinephrine in the brain. Examples of SSNRI’s are Effexor XR (venlafaxine hydrochloride) and the drug Cymbalta (duloxetine) which has recently been adopted for the management of fibromyalgia.

Effexor XR (venlafaxine hydrochloride) was evaluated in a small study by Sayar et al. (Ann Pharmacotherapy, November 2003). Fibromyalgia patients who took Effexor XR showed significant improvement in pain intensity and disability caused by fibromyalgia as well as in depression and anxiety.

In randomized, double-blind, placebo-controlled trials, the treatment effect of Cymbalta on pain reduction was found to be independent of mood and the presence of major de-pressive disorder. According to the study authors, Cymbalta was safely administered and well tolerated with only mild side effects reported. However, while female subjects treated with Cymbalta enjoyed improvement on most efficacy measures, male subjects failed to improve significantly on any efficacy measure. (See Arthritis & Rheumatism, September 2004 & Pain, December 15, 2005.)
Muscle relaxants can decrease pain in fibromyalgia patients by minimizing muscle spasms and muscle pain. Because of their sedating qualities, they also help to increase sleep and are usually taken at bedtime. Typically used muscle relaxants are:

Flexeril (cyclobenzaprine hydrochloride)
Norflex (orphenadrine citrate)
Soma (carisoprodol)
Skelaxin (metaxalone)
Robaxin (methocarbamol)

Common side effects include drowsiness, dry mouth, constipation, headache, and heart palpitations. Soma does have the additional risk of becoming habit-forming.

Like Elavil, Flexeril was one of the earliest drugs used in the treatment of FM and has been well researched. Most recently, FM researcher and sleep expert Harvey Moldofsky, M.D., of the Centre for Sleep and Chronobiology in Toronto, reported on a study of low dose Flexeril on 36 FM patients with alpha EEG sleep disorder. Subjects receiving Flexeril experienced improved pre-and post-sleep pain as well as post-sleep fatigue compared to controls. Their pain scores were also better. The drug is now being researched by VelaPharm Pharmaceuticals for the improvement of sleep quality. (2003 Annual Meeting of the American College of Rheumatology, Abstract #1654)

Anti-Spastic Medications were developed to treat the muscle spasm associated with multiple sclerosis and certain injuries to the spine but have been adopted for use in fibromyalgia. Two anti-spastic medications of interest in FM are: Zanaflex (tizanidine) and Lioresal (baclofen).
Zanaflex acts on the central nervous system to help relax muscles and decrease muscle spasms, cramping, and tightness. It is of special interest to persons with fibromyalgia because it is an inhibitor of Substance P, a neurotransmitter which signals the brain to register pain. Substance P has been shown to occur in fibromyalgia patients at levels up to three times larger than normal. Side effects associated with this drug may include hypotension, dry mouth, diarrhea or constipation, drowsiness, and nightmares.

Zanaflex was recently studied by FM researcher I. Jon Russell, M.D., Ph.D., in an open-label study. What he found was that Zanaflex significantly lowered cerebrospinal Substance P and improved sleep, pain, and physical function. Although the drug was well tolerated by study subjects, Russell advised that transaminase levels should be monitored during continuous therapy. (2003 Annual Meeting of the American College of Rheumatology, Abstract #1655)
Lioresal is another example of an anti-spastic analgesic. It is used to help relax muscles and relieve spasms. Side effects may include confusion, dizziness/light-headedness, drowsiness, nausea, and sometimes muscle weakness.

Anti-convulsant medications, originally developed for the treatment of epilepsy, are sometimes prescribed for the relief of neuropathic pain in fibromyalgia patients (i.e., burning and electric shock-like feelings in the extremities). If tolerated, these medications can help relieve nerve irritation. Examples of anti-convulsants are:

Neurontin (gabapentin)
Depakote (divalproex)
Dilantin (phenytoin)
Tegretol (carbamazepine)

Side effects may include sedation, dry mouth, and dizziness. Patients should be closely supervised by a doctor to monitor blood counts and liver function.

Recently, the NIH’s National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) funded a study to measure the effectiveness of Neurontin in reducing the symptoms of fibromyalgia. The study was conducted by Leslie Arnold, M.D., and her colleagues at the University of Cincinnati College of Medicine and at two Boston-area sites.

Lyrica (pregabalin) is a new product recently introduced for fibromyalgia treatment which is structurally related to the amino acid and neurotransmitter GABA. Lyrica has been shown to improve pain, disturbed sleep, and fatigue in a recent FM study (Arthritis & Rheumatism, April 2005).

Sleep medicines are used to treat insomnia and other sleep disorders. Because persons with fibromyalgia have trouble falling asleep, staying asleep, or getting quality, restorative sleep, sleep medicines have been found useful in FM management. By improving sleep, it is also possible to decrease pain and achieve better daytime functioning. Examples of commonly prescribed drugs include the central nervous system depressants Ambien (zolpidem tartrate) and Sonata (zaleplon). These drugs can be habit-forming and are therefore usually prescribed for short periods of time.

A new product, Lunesta (eszopiclone), is one of the generation of sleep aids like Ambien which helps people to fall asleep without the next day hangover characteristic of older-generation sleep drugs. Lunesta is the first drug to be approved for long-term use (though others may be tested in the future), and it helps people to stay asleep.

Although not yet approved by the FDA specifically for the treatment of fibromyalgia, the central nervous system depressant known as Xyrem is a promising drug currently being assessed for use in individuals with FM. Clinical trials in FM patients have already shown significant pain relief and improved functioning. Sodium oxybate, the active ingredient of Xyrem, is a sodium salt of gamma-hydroxybutyrate (GHB), a substance with a history of abuse. Therefore, Xyrem is highly controlled through a restricted distribution system.

Benzodiazepines, also very sedating and usually taken at bedtime, are sometimes used to help patients feel calmer and cope with pain more effectively. They include the following:

Klonopin (clonazepam)
Valium (diazepam)
Restoril (temazapam)
Xanax (alprazolam).
Note: Klonopin and Valium also have muscle relaxant properties that are useful in FM treatment.

Antibiotics also may have a role in the treatment of fibromyalgia. As previously noted, research by Garth Nicolson, Ph.D., suggests that mycoplasma may be an infectious cause of FM and CFS. Antibiotics used to treat mycoplasma infection include: Doxycycline (tetracycline), Erythromycin, and Zithromax (azithromycin).

Injections: Trigger point injections are used to treat severe myofascial trigger points which frequently occur in FM patients in muscle or soft tissue. Injected medications usually contain 1% procaine or lidocaine. Many patients experience pain relief from these injections, especially when they are used in conjunction with physical therapy. The effects may last for up to three or four weeks.

Botox injections are a newer and more controversial treatment that some doctors have found to be useful. Botox is a form of the botulinum toxin which is injected into painful muscles, decreasing muscle spasms. At this time, botox injections are costly and are usually not covered by insurance.

New Drugs Under Investigation

At present, no medication has been approved by the FDA specifically for the treatment of fibromyalgia, so drugs have simply been borrowed from other illnesses. Several promising new pharmaceuticals are currently being investigated for FM. These include:
Milnacipran: A selective serotonin and norepinephrine reuptake inhibitor being tested in clinical trials by Cypress Bioscience for possible FDA approval.
Pramipexole & Ropinorole: Dopamine agonists being studied by Andrew Holman, M.D., at the University of Washington (Seattle).

Physical Rehabilitation

A wide variety of hands-on "body work" therapies are available to individuals with FM. Some can only be provided by trained physical rehabilitation professionals familiar with fibromyalgia while others may be practiced at home under the guidance of a professional. The most widely used therapies are:

Massage: Often combined with ultrasound and/or the application of hot/cold packs, massage may be performed in a number of ways and is useful in soothing and increasing blood circulation to tense, sore muscles. It can also help remove built-up toxins like lactic acid and re-educate muscles and joints which have become mechanically misaligned.

Myofascial Release: A technique developed by physical therapist John Barnes, myofascial release is a very gentle form of body work designed to relieve restrictions and tightness in connective tissue (fascia). When properly performed, it often decreases connective tissue’s pull on bones, allowing muscle fibers to relax and lengthen and organs to expand.34

Trigger Point Therapy: A technique designed to break up the trigger points associated with myofascial pain syndrome, sustained pressure is usually applied by a therapist. When trigger points cannot be broken up by this method, patients may be sent to a physician for trigger point injections.

Craniosacral Therapy: "A gentle, non-invasive method of evaluating and enhancing the function of the craniosacral system, the environment in which the brain and spinal cord function...this manual therapy encourages the body’s natural healing mechanisms to improve the operation of the central nervous system, dissipate the negative effects of stress, enhance health, and strengthen resistance to disease." Patients can perform a form of craniosacral therapy at home using a "stillpoint inducer," a product which can be purchased commercially or fabricated by knotting two tennis or racquet balls into a sock. The inducer is placed along the back of the head at the line of the ear, for gradually increased lengths of time (usually 2-20 minutes).35

EEG-Based Stimulation: A promising new FM treatment stemming from the research of Mary Lee Esty, Ph.D.; Stuart Donaldson, Ph.D.; and Len Ochs, Ph.D., uses electro-encephalogram (EEG) technology to detect and treat brain dysfunction that has been caused by a mild traumatic brain injury such as in an automobile accident. Patients first have a brain mapping performed to identify areas of the brain which have been injured and are functioning abnormally in terms of brainwave activity. Electrical activity produced by the brain reflects a person’s level of functioning and can be monitored by EEG. A condition known as "EEG slowing" is present in people who have suffered damage to the brain and nervous system as a result of trauma and go on to develop fibromyalgia or other chronic conditions.

In individuals with mild traumatic brain injury, there is typically an inappropriate excess of energy in the slow brainwaves. The goal of treatment is to normalize brainwave patterns using a series of EEG-based stimulation treatments which are administered by a specially trained professional. Later, surface electromyography (sEMG) therapy is conducted to help retrain muscles, and myofascial release therapy is performed to restore proper muscle balance, promote optimum posture, and address other neuromuscular problems.36

Chiropractic: As explained by chiropractor Eric Terrell, D.C., "Chiropractic philosophy recognizes that the nervous system via the brain, spinal cord, and nerves connects to every part of the body and controls all bodily functions." Chiropractic care works to remove misalignments in the vertebrae, "unchoke" nerves, and allow the body to heal naturally.37

Osteopathy: A discipline which proposes that the body is often able to effectively cope with disease on its own as long as it is in a normal structural relationship, has a favorable environment, and suffers no nutritional deficits. Osteopathy uses generally accepted physical, medicinal, and surgical methods of diagnosis and therapy (including the prescription of medications) while placing chief emphasis on the musculoskeletal system. FM patients may also receive manipulation (body work) as part of treatment.

Stretching: Gentle stretching can be performed by physical therapists and/or practiced by patients at home. Several videotapes have been specially created for FM patients for this purpose. Stretching is important because it helps to relieve muscle tension and spasm. In difficult-to-treat areas, "spray and stretch" techniques can be used to apply a spray coolant to sore muscles, deadening pain while the muscles are stretched.

Aerobic Exercise: Low-impact aerobic exercise is very important for fibromyalgia patients to prevent muscle atrophy (wasting), to promote the circulation of blood containing oxygen and other nutrients to muscles and connective tissue, and to build strength and endurance. Examples of low-impact exercise include walking, warm water walking/exercise, and the use of treadmills or cross-country ski machines. Increasingly, gentle exercise programs designed specifically for fibromyalgia and other chronic pain conditions are being offered through local health/recreation centers throughout the country and via videotape. A cardinal rule for fibromyalgia patients is to start extremely slowly and conservatively and build up exercise tolerance in small increments. Most medical professionals also suggest that patients find a form of exercise they like so that they will stick to it on a regular basis. However, should a FM patient find that exercise repeatedly causes high levels of pain, a consultation with a physical rehabilitation therapist (i.e., physical therapist, chiropractor, etc.) may be indicated. These professionals can help restore normal physiological relationships between muscles and joints, thereby paving the way for successful exercise.

Complementary Therapies

A number of other approaches have proven useful in the management of fibromyalgia:

Postural Training: While the various forms of body work described above can help patients reduce pain and relax muscles, posture or movement training is often required to undo lifelong bad habits which increase pain and to re-educate muscles/joints that have become mechanically misaligned. Physical therapists can help with posture while professionals trained in the "Alexander Technique" can provide movement training. FM patients who have significant problems with foot pain resulting from poor posture or body mechanics may also benefit from special shoe inserts (orthotics) prescribed by a podiatrist.

Occupational Therapy: When job-related tasks contribute to pain (i.e., repetitive movements, uncomfortable work stations, etc.), an occupational therapist can help by suggesting/designing improvements. For example, for FM patients who work at a computer, ergonomic keyboards, chairs, and other products may provide significant relief.

Relaxation Therapy: Not surprisingly, the pain and related symptoms of fibromyalgia cause significant stress to the body. Recent research suggests that, physiologically, FM patients simply do not process stress well. Thus, effective stress management programs are recommended. Among those used for fibromyalgia are: biofeedback, Watsu, meditation, breathing exercises, yoga, tai chi, progressive relaxation, guided imagery, and autogenic training. Patients need to receive initial training for many of these but can often continue practicing the concepts they have learned on their own. Books, audiotapes, and classes are widely available to help.
Nutrition: Nutritional therapy for fibromyalgia can be helpful in counteracting stress, ridding the body of toxins, and restoring nutrients which have been malabsorbed or robbed from the body. Simple approaches may include the use of vitamin/mineral supplements to combat stress, replace deficiencies, and support the immune system. Nutritionists commonly urge fibromyalgia patients to limit the amount of sugar, caffeine, and alcohol they consume since these substances have been shown to irritate muscles and stress the system.

As with other fibromyalgia treatments, a specifically designed nutritional plan that works well for one patient may prove disastrous for another.38 Unfortunately, a number of unproven "miracle" diets and supplements are advertised for FM and should be investigated carefully by patients before use. When starting a new nutritional program, it is important to inform your physician as some supplements and foods cause serious, or even dangerous, side effects when mixed with certain medications.

Acupuncture: While a number of alternative remedies have been offered for FM management, very few have been rigorously studied in clinical settings. Acupuncture, a treatment which involves the insertion of small needles at specific anatomical points identified as conducive to energy, has received more scrutiny than most. Research has offered evidence that acupuncture enables electromagnetic signals in the body to be relayed at a greater rate than usual, thus allowing the flow of natural pain-killing endorphins to specific pain sites. In addition, it may also encourage the release of the body’s own opioids into the central nervous system during treatment and alter brain chemistry by changing the release of neurotransmitters and neuro-hormones.39 In November 1997, the National Institutes of Health convened a Consensus Panel on Acupuncture which issued this statement:
Acupuncture as a therapeutic intervention is widely practiced in the United States. While there have been many studies of its potential usefulness, many of these studies provide equivocal results because of design, sample size, and other factors. The issue is further complicated by inherent difficulties in the use of appropriate controls, such as placebos and sham acupuncture groups. However, promising results have emerged, for example, showing efficacy of acupuncture in adult postoperative and chemotherapy nausea and vomiting and in postoperative dental pain. There are other situations such as addiction, stroke rehabilitation, headache, menstrual cramps, tennis elbow, fibromyalgia, myofascial pain, osteoarthritis, low back pain, carpal tunnel syndrome, and asthma in which acupuncture may be useful as an adjunct treatment or an acceptable alternative or be included in a comprehensive management program.40

Cognitive/Behavioral Therapy: As trite as it may sound, attitude is often one of the strongest predictors of how well a patient is able to manage FM. Research has shown that patients who are not actively engaged in taking charge of their illness simply aren’t as likely to get better. Those who unknowingly adopt maladaptive illness behaviors (i.e., hopelessness, victim mentality) are less likely to aggressively seek help through exercise, physical therapy, or medications. Getting better with FM can be very tough, but patients should not give up. Constructive help is available even if the patient must find it using his/her own initiative. If negative thinking is a problem, cognitive/behavioral therapy (via classes, audiotapes, and or individual counseling) can be a beneficial resource.

Common Sense: Individuals with FM can make a meaningful contribution to their own treatment by learning how their bodies respond to fibromyalgia. For example, do certain activities (especially those involving repeated or prolonged muscle use) tend to exacerbate FM? If so, how can they be modified or replaced and thus better tolerated? Do certain types/levels of activity cause delayed pain reactions a day or two later? Also crucial is learning to pace yourself, take frequent breaks, and say "No" to requests that simply cannot be accommodated on a particularly bad day. If certain commitments cannot be avoided, try to get extra rest before and after to aid in recovery. While these ideas sound simple in theory, they are often difficult to implement.

Self Tolerance: It is all too easy for individuals with FM to be excessively hard on themselves. After realizing that they are unable to accomplish all they once did, they can become overly critical or disparaging of themselves in their "self-talk". Guilt may also become a problem as they must depend on friends and family to a greater extent for help with daily activities while "letting them down" by saying "no" to social outings when symptoms are severe. If surrounded by people who don’t "believe in" fibromyalgia, patients may wonder if their FM really IS just a figment of their imagination or is somehow "their fault." If a helpful treatment regimen is not discovered right away, they may feel discouraged or worry that others think they just aren’t trying hard enough to feel better.

Newly diagnosed patients need to know that it is not their fault that they have fibromyalgia. FM is a legitimate, medically recognized condition which is being actively researched every day. Public awareness of FM is rapidly increasing, too. It takes enormous energy as well as courage to adjust to FM and find treatments that work well without wasting precious energy on guilt, self deprecation, and doubt.

Rheumatologist and FM specialist Russell Rothenberg, M.D., has words of hope to share. Just because someone starts out with severe symptoms doesn’t mean that (s)he cannot find worthwhile improvement with a skillfully devised and comprehensive treatment program. "Patients need to know that medication, judicious rest, exercise, physical therapy, and good diets can do more than just control the symptoms of fibromyalgia; they can control the disease process as well. There is no cure for FM, but people do get better! Hopefully, as better medications that are more specific for fibromyalgia are developed, and people are diagnosed earlier in their illness, more individuals with fibromyalgia will go into remission, or at least partial remission, and feel better."41

References
1) Yunus MB. What’s New In Fibromyalgia Syndrome? A Review Of Abstracts Presented In The 1996 American College Of Rheumatology Annual Scientific Meeting: Part 1. The Fibromyalgia Times 1997;1(4):4.
2) Roizenblatt S, Moldofsky H, et al. Alpha Sleep Characteristics In Fibromyalgia. Arthritis & Rheumatism 2001;44:222-30.
3) Mountz JM, Bradley LA, et al. Fibromyalgia In Women. Abnormalities Of Regional Cerebral Blood Flow In The Thalamus And The Caudate Nucleus Are Associated With Low Pain Threshold Levels. Arthritis & Rheumatism 1995;38:926-38.
4) Clauw, DJ. Update On The Physiology And Management Of Fibromyalgia Syndrome. Presentation hosted by the National Fibromyalgia Partnership, on 11/10/97, Bethesda, MD.
5) Clauw DJ, Schmidt M, et al. The Relationship Between Fibromyalgia And Interstitial Cystitis. J. Psychiatr. Res. 1997;31(125):1.
6) See Thoracic Pain and Dysfunction. Fibromyalgia Frontiers 1997;5(2).
7) Ibid. Clauw, DJ. Update On The Physiology And Management Of Fibromyalgia Syndrome.
8) Bou-Holaigah I, et al. Provocation Of Hypotension And Pain During Upright Tilt Table Testing In Adults With Fibromyalgia. Clinical and Experimental Rheumatology 1997;15:239-246.
9) Yunus MB. Fibromyalgia And Other Overlapping Syndromes: The Concept Of Dysregulation Spectrum Syndrome. Presentation hosted by the National Fibromyalgia Partnership on 11/10/97, Bethesda, MD.
10) Clauw DJ. New Insights Into Fibromyalgia. Fibromyalgia Frontiers 1994; 2(4):7.
11) Wolfe F, et al. The American College Of Rheumatology 1990 Criteria For The Classification Of Fibromyalgia: Report Of A Multicenter Criteria Committee. Arthritis & Rheumatism 1990;33(2):160-172.
12) Ibid.
13) Clauw DJ. New Insights Into Fibromyalgia. Ibid, p.1.
14) Granges G, Littlejohn G. Pressure Pain Threshold In Pain-Free Subjects, In Patients With Chronic Regional Pain Syndromes, And In Patients With Fibromyalgia. Arthritis & Rheumatism 1993;36(65):642-6.
15) Staud R. The Abnormal Central Pain Processing Mechanism In Patients With Fibromyalgia. Fibromyalgia Frontiers 2002;10(3):18.
16) Crofford LJ, Clauw DJ. Fibromyalgia: Where Are We A Decade After The American College Of Rheumatology Classification Criteria Were Developed? Editorial. Arthritis & Rheumatism 2002;46(5):1136-7.
17) Russell IJ. Fibromyalgia Syndrome Sub-Groups. Editorial. Journal of Musculoskeletal Pain 2002;10(3):1-2.
18) For example, in 1999, NIAMS/NIH awarded a grant to Case Western Reserve University (Cleveland, OH) to the late researcher Jane Olson, Ph.D., for her project, "Mapping Genes for Fibromyalgia Syndrome".
19) See also: Arnold LM. Genetic Linkage Of Fibromyalgia To The Serotonin Receptor 2A Region On Chromosome 13 and the HLA Region On Chromosome 6. Abstract #505, presented at the 2003 Annual Meeting of the American College of Rheumatology, Orlando, FL.
20) Russell IJ, et al. Elevated Cerebrospinal Fluid Levels Of Substance P In Patients With The Fibromyalgia Syndrome. Arthritis & Rheumatism 1994;37(11):1593-1601. See also: Cerebrospinal Fluid (CSF) Substance P (SP) in Fibromyalgia (FM): Changes in CSP SP Over Time, Parallel Changes in Clinical Activity. Arthritis & Rheumatism, Abstract Supplement 1998;41(9).
21) Fransen J, Russell IJ. The Fibromyalgia Help Book: Practical Guide to Living Better with Fibromyalgia, St. Paul, MN: Smith House Press, 1996:25-26.
22) Yunus MB. Dysfunctional Spectrum Syndrome: A Unified Concept For Many Common Maladies. Fibromyalgia Frontiers 1996;4(4):3.
23) Crofford LJ, et al. Neurohormonal Perturbations In Fibromyalgia. Baillieres Clin Rheumatology 1996;10(2):365-78. See also: The Hypothalamic-Pituitary-Adrenal Stress Axis In The Fibromyalgia Syndrome. Journal of Musculoskeletal Pain 1996;4(1/2).
24) Abud-Mendoza C, et al. Hypothalamus-Hypophysis-Thyroid Axis Dysfunction In Patients With Refractory Fibromyalgia. Arthritis & Rheumatism, Abstract Supplement 1997;40(9).
25) Martínez-Lavín M. The Autonomic Nervous System And Fibromyalgia. The Clinical Neurobiology Of Fibromyalgia And Myofascial Pain:Therapeutic Implications. Binghamton, NY: The Haworth Press, 2002:221-228.
26) Ibid.
27) Graceley RH, Petzke F, Wolf JM, and Clauw DJ. Functional Magnetic Resonance Imaging Evidence Of Augmented Pain Processing In Fibromyalgia. Arthritis & Rheumatism 2002;46(5):1333-1343, and University Of Michigan Health System News Release 6/7/02: www.med.umich.edu/opm/newspage/2002/ fibromyalgia.htm.
28) Ibid. Staud R., p. 20-21.
29) Buskila D, et al. Increased Rates Of Fibromyalgia Following Cervical Spine Injury: A Controlled Study Of 161 Cases of Traumatic Injury. Arthritis & Rheumatism 1997;40(3):446-52.
30) Donaldson S, et al. Fibromyalgia: A Retrospective Study Of 252 Consecutive Referrals. Canadian Journal of Clinical Medicine, June 1998.
31) Nicolson G. Co-Infections in Fibromyalgia, Chronic Fatigue Syndrome, And Other Chronic Illnesses. Fibromyalgia Frontiers 2002;10(3).
32) Yunus MB. Central Sensitivity Syndromes: A Unified Concept For Fibromyalgia And Other Similar Maladies. JIRA 2000;8(1).
33) Bennett R. Chronic Widespread Pain And The Fibromyalgia Construct. Website Of The Oregon Fibromyalgia Foundation: www.myalgia.com.
34) Meyer H. Presentation to the National Fibromyalgia Partnership on 3/7/98.
35) Muris S. Exploring Body Work For FM Self-Care. Fibromyalgia Frontiers 1996;4(3):4.
36) Esty ML. Neurotherapeutic Treatment Of Fibromyalgia Using EEG-Based Stimulation. Fibromyalgia Frontiers 2003;11(4):3-13.
37) Terrell ED. Chiropractic & Chronic Pain. Fibromyalgia Frontiers 1997;5(4):6.
38) Panel on Nutrition. Presentation to the National Fibromyalgia Partnership, on 6/4/97 featuring Virginia Inglese, M.A., R.D., CEDS; Sam Makoul, BCCN; Marti Pattishall, and Victoria Wood, M.P.H., R.D.
39) Website of the National Institutes of Health (NIH) National Center For Alternative And Complimentary Medicine (NCCAM): http://nccam.nih.gov/health/acupuncture/#nccam.
40) Ibid.
41) Rothenberg R. To The Newly Diagnosed Patient. Fibromyalgia Frontiers 1995;3(1):7.

Figure 1
© Copyright 2006, National Fibromyalgia Partnership, Inc.

Fibromyalgia Tender Points Identified By The American College Of Rheumatology In 199011
(at digital palpation with an approximate force of 4 kg)
1 & 2, Occiput: bilateral, at the suboccipital muscle insertions.
3 & 4, Low cervical: bilateral, at the anterior aspects of the intertransverse spaces at C5-C7.
5 & 6, Trapezius: bilateral, at the midpoint of the upper border.
7 & 8, Supraspinatus: bilateral, at origins, above the scapula spine near the medial border.
9 & 10, Second Rib: bilateral, at the second costochondral junctions, just lateral to the junctions on upper surfaces.
11 & 12, Lateral epicondyle: bilateral, 2 cm distal to the epicondyles.
13 & 14, Gluteal: bilateral, in upper outer quadrants of buttocks in anterior fold of muscle.
15 & 16, Greater trochanter: bilateral, posterior to the trochanteric prominence.
17 & 18, Knee: bilateral, at the medial fat pad proximal to the joint line.

Day one with Cymbalta

2007-08-14T10:42:00.000-04:00

I took my first dose of Cymbalta last night at bed time. I was in such a total flare yesterday. Actually, I have been in a constant flare since last Tuesday. I really overdid it, big time. Here are the things I did:

* Cleaned my whole house on Saturday
* Drove to Cape Cod last Sunday 3 hours
* Cleaned entire upstairs of cottage Tuesday all day
* Walked dogs
* Cleaned entire downstairs of cottage Weds all day
* Walked to beach, swam, walked home
* Greeted the people renting my house and hung out w/them
* Drove home from Cape Cod Weds 3 hours
* Proofread contracts for brochure all day Thurs
* Cooked dinner
* Worked all day Fri
* Cooked dinner
* Had scary dog walk Sat morning -- we got attacked by a cat!! Very stressful and got a couple minor injuries (bruises)
* Drove back to Cape Cod on Saturday to a party. Got stuck in horrible traffic, What should've been 2 hours ended up being 5.
* Drove all the way home from Cape Cod on Saturday night after arriving late at said party. 2 hours.

Exhausted by Sunday, I slept on the couch and watched TV all day and did nothing else. I was in excruciating pain everywhere.

That brings me to Sunday night. I decided to start the Cymbalta then because I know I won't be driving for at least a week (and it cautions against operating machinery/driving until you're used to the med).

I woke up Monday morning in far less pain than usual. I was very groggy, but not the fibro-fog kind of groggy, this was definitely from meds. However, I noticed immediately no anxiety!! And, bonus! My dogs picked up on it and therefore THEY had no anxiety.

Another bonus, but one I have to watch out for: no appetite. Now, I have always been a BIG eater. I love to eat. There was a period of time pre-Weight Watchers when I was RAVENOUS if I did not eat every 3 hours. That has since changed just probably because of my age. When I started taking the Trazodone, I noticed my appetite decreased. Yay! and I lost a few pounds. I'm still about 15 lbs overweight. I heard that Cymbalta suppresses the appetite too. Well, I'm tellin' ya, it does. I was not hungry all day. I had to make SURE I ate because (I marvel at this) I forgot to eat!! I have always wondered how "those kind of people" can just FORGET TO EAT. What???! Well, now it has officially happened to me. I will watch out, don't worry. I already told some co-workers about this so they could watch out for me as well.

So, the Cymbalta is supposed to lessen anxiety and pain. It so far did both, with only one dose. I don't like what I've heard about future side effects, so I am a little scared. I already warned Gil that if I start getting seizures, mood swings or psychotic episodes he needs to tell me and/or call 9-1-1!!!

That's the update from here. Over and out!

Understanding what having MS (or fibro) means

2007-08-11T14:10:00.001-04:00

Special thanks to my friend Dora, of various Yahoo groups, who sent around this essay written by an anonymous person who has MS (multiple sclerosis).

Since MS and Fibromyalgia are often mistaken/confused/misdiagnosed for one another, the exact same description applies to Fibromyalgia, too. Substitute "MS" in this essay with "fibromyalgia" and you can understand how I feel. Reading this, I kept saying "That's me. That's me, too. Yup, that's me." Whomever wrote this nailed exactly how people with these "invisible" illnesses feel. And I thank that person for having the courage to share their deepest thoughts.

Understanding What Having MS Means by ??

Having MS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about MS and it's effects on us; and many of those who think they do know are actually misinformed. In the spirit of informing those who wish to understand.. . These are the things that I would like you to understand about me before you judge me: Please understand that being sick does not mean I'm no longer a human being. I have to spend most of my day in considerable pain and exhaustion and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, and work, and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it for a week or two, but I've been sick for years. I can't be miserable all the time, in fact, I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy, that's all. It doesn't mean that I'm still not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say "Oh, you are sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you are welcome to.

Please understand that being able to stand for 10 minutes doesn't necessarily mean that I can stand for 20 minutes or an hour. Just because I was able to stand up for 30 minutes yesterday doesn't mean I can do the same today. With a lot of diseases and disorders one is either paralyzed, or they can move. With MS it's far more confusing: one hour or day or week or year we may have normal - or almost normal - mobility; the next hour or day or week or year we may be unable to sit, stand, walk, think, remember, or even get out of bed, we may be unsociable or depressed, and almost assuredly we are in pain.

We have good days and bad, and during our good days we may truly not "look sick", but we are. Please understand that making plans other than immediate ones is a crap shoot at best, because we can't know how we will feel or what our physical, mental or emotional condition will be. If we seem to hedge about making plans with you, please understand it's because we truly don't know if we will be able to honor them. The same applies if we have to cancel plans previously made or invitations, even at the last minute - it is not personal, and it makes us as frustrated and sad as it does you! That is what MS does to us, and it's how we must live our lives. It is not just a matter of sucking it in, or bucking up, or psyching ourselves up; believe me if we could, we would!

Please understand that MS is variable - with each person and from person to person. It is quite possible and often all too common, that one day I can walk to the park and back, or bicycle 2-4 miles, or swim 12 laps, or even run with my dog; while the next day I may have great difficulty getting out of bed, walking to the kitchen, or be unable to walk at all without a cane, walker or other mobility aid. Please don't attack me when I can't do today what I did before by saying "but you did it yesterday!" or "you did it before!" Your frustration can not begin to compare to our own frustration. The very act of planning while not knowing what condition we will be in is stressful and tiring in itself. If you want me to do something with you, or go someplace with you... ASK if I can. I may well dearly want to go, but simply be physically unable to do so. Understand if I have to say no today, but please ask me again soon.

Please understand that "getting out and doing things" does not make me feel better and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes, take these vitamins, herbs, tonics and snake-oil cures will frustrate me to tears and is totally incorrect. If I was capable of doing things, don't you think I would? And when I am capable, I DO! I work with my doctors and physical therapists and follow the exercise and diet plans they prescribe.

Another statement that hurts: "You just need to push yourself more..." Obviously, MS directly impacts muscles and ours do not regenerate as quickly as yours do. Pushing ourselves beyond comfortable physical limits can be dangerous and cause a severe relapse. On the other hand, doing what we can when we can is excellent therapy both physically and mentally... and we do! If I work at a part-time job for 4 hours one day, my fatigue level is greater than yours if you worked a 12 hour day. Many days I can still do anything I ever did as well as I ever did ... but only one thing per day or week or month. Everything drains us and exhausts us exponentially more than a normal, healthy person our age (whatever age that is); our recovery time is also exponentially greater. If I go to a party or dinner and show tonight for several hours and have a wonderful time, I do so knowing with 99% certainty that tomorrow I will need all day to rest and recover, much of it spent lying down.

MS causes secondary depression in and of itself; our depression may escalate when dealing with days on end of constant pain and limited mobility or cognitive function. We are NOT tired because we are depressed! We are depressed because we are so tired. When I say I can't do something because I am so fatigued, please don't say "Oh I know what you mean! I am worn out too, but..." because you don't. MS fatigue is not like any tiredness you have ever experienced, nor has anyone who does not have MS or other fatigue-producing disorder. I know you mean well, but it's irritating to hear because it tells me you don't understand me or my MS at all. I may well be just plain tired - we get normally tired during remission phases just as any normal person does - but trust me: we know the difference, and it's huge.

When we are together, please understand when I say I have to sit down, lie down, get a drink, take these pills, or get into a cool place that I have to do it and do it now! No, I can't walk another 5 blocks to the car, or walk back down the hill I just climbed up. Don't baby me, don't hover over me, don't do things for me unless I ask - we are very proud and never want to be a burden. Our independence, or what we can retain of it, is of paramount importance to us! Please help by listening to and believing what we say we need and act upon it accordingly and as quickly as possible. You wouldn't question a known diabetics request for orange juice or insulin, so please don't question us or urge us to 'keep on... we are almost there!' Not unless you are prepared to a) carry us the rest of the way or b) call 911. MS does not wait, nor does it forgive... when we say "please ... now!" it means now.

If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my family and friends suggest something at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even markedly helped, all forms of MS the world would know about it. If you still insist on promoting 'cures' to me or giving me 'this will make you better' advice, do so; but understand I won't rush out and try it though I may well continue to research it on my own and discuss those findings with my doctors.

In many ways I depend on you... people who are not sick... I need you to visit with me when I am unable to go out; sometimes I may need you to help me with shopping, cooking or cleaning; sometimes I may even need you to do those things for me. I may need you to go with me to my doctor appointments to help me remember and understand their direction, or I may just need a ride. I need you on so many different levels... as much as possible, treat me as normally as possible, enjoy me and allow me to enjoy you as much as possible, and.... as much as it's possible... I need you to understand me. "thanks Jeff010407"

Press Release: National Fibromyalgia Association

2007-08-10T08:24:00.000-04:00

"NFA Launches 'Facing Fibromyalgia, Finding Hope,' a New Fibromyalgia Education Campaign"Thursday, August 9, 2007
Press Release

New Nationwide Surveys Demonstrate Need for More Education, Resources for “Invisible” Pain Condition Affecting More Than Six Million Americans

Contact: Corin Walson(714) 921-8850 cwalson@fmaware.org

August 7, 2007 (Anaheim, CA) The National Fibromyalgia Association (NFA) today announced the launch of a new national educational campaign aimed at increasing understanding of fibromyalgia among patients, healthcare providers and the public. Fibromyalgia is the most common widespread, chronic pain condition in the United States, characterized by a unique kind of persistent pain and usually accompanied by poor sleep, stiffness and fatigue. The campaign was driven in part by the results of two new fibromyalgia surveys one of the general public and one of physicians underscoring the need for greater awareness of the debilitating condition.

The multi-faceted campaign includes patient education materials, resources and tools, answering the call from more than eight in 10 physicians surveyed (82%) who agree there is a need for more patient-oriented information on fibromyalgia. The campaign also features a partnership with internationally renowned physician and author Dr. Pamela Peeke, who has treated people with fibromyalgia for more than 20 years. A nationally-broadcast public service announcement featuring patient stories and an interactive Web site http://www.fibrohope.org/ are also available. The campaign is supported through a sponsorship by Pfizer.

“Fibromyalgia is a major public health issue that deserves increased attention and understanding, yet it’s very much a misunderstood and invisible illness,” said Lynne Matallana, founder and president of the NFA, and fibromyalgia sufferer. “While the pain of fibromyalgia can be chronic, people with the condition usually don’t look sick, so it can be difficult for their families, friends, colleagues and healthcare providers to understand the serious impact of the condition.”

“The chronic pain of fibromyalgia can be frustrating for patients and healthcare providers alike at times it’s like grabbing fog and this can lead to a communication gap,” said Pamela Peeke, M.D., MPH, assistant clinical professor of medicine at the University of Maryland School of Medicine. “An empathetic and knowledgeable healthcare provider who will work in partnership with an educated patient is a critical component of managing fibromyalgia.”

Under-Recognized and Misunderstood: The new public awareness survey shows a significant lack of understanding about fibromyalgia: nearly half of the general public (45%) has never heard of fibromyalgia and many people who are knowledgeable about the disorder incorrectly believe that nothing can be done to manage it.

Approximately one in three survey respondents who are knowledgeable about fibromyalgia incorrectly classify the condition as an autoimmune disease (32%) or a type of arthritis (28%). In fact, fibromyalgia is a chronic pain condition thought to result from neurological changes in how patients perceive pain, specifically a heightened sensitivity to stimuli that are not normally painful.

Significant Emotional and Financial Impact on Patients

A persistent and debilitating disorder, fibromyalgia can have a devastating effect on all aspects of a person’s life. Survey results show that respondents perceive fibromyalgia as having a strong or very strong impact on patients’ ability to work (62%), ability to care for family (54%), and personal relationships (47%). In the survey of physicians, doctors rank the ability to work as the area of a patient’s life most impacted by fibromyalgia, followed by personal relationships and ability to care for family.

Diagnosis Elusive and Lengthy: According to the physician survey, many healthcare providers lack confidence in diagnosing fibromyalgia and are reluctant to diagnose patients with the condition. For most specialties surveyed, less than one-third of physicians were extremely/very confident in their ability to diagnose the disorder (6% of OB/GYNs; 23% of psychiatrists; 27% of neurologists; 28% of primary care physicians). In contrast, rheumatologists are the most confident in their ability to diagnose (87% extremely to very confident). In addition, more than half of physicians surveyed (60%) agree they worry about labeling patients as having fibromyalgia. Nearly half (48%) report they are reluctant to diagnose a patient with the condition.

This reluctance may lead to delayed diagnosis. The general public survey reveals that more than two in five (42%) respondents diagnosed with fibromyalgia by a healthcare provider report waiting two or more years for the diagnosis, including 22 percent who waited five years or more.

“People with a diagnosis of fibromyalgia have struggled with their symptoms for many years,” said Dr. I. Jon Russell, associate professor of medicine in the division of clinical immunology and rheumatology and director of the university clinical research center, University of Texas Health Science Center. “What they're looking for is not only information about the disorder, but also an understanding of their struggle. This understanding should come in the form of tangible compassion, with a medical care plan that offers realistic hope for improvement.”

Prognosis Has Never Been Better. Once patients are diagnosed with fibromyalgia, they can work in partnership with their physicians to manage the condition through individualized therapeutic strategies, which may include lifestyle measures (such as exercise, nutrition and relaxation techniques) and behavioral support, as well as medication. There is a wealth of fibromyalgia research being conducted in the US and globally.

For additional information on fibromyalgia, please visit http://www.fibrohope.org/.

About the Surveys: The general public awareness survey was conducted by Schulman, Ronca and Bucuvalas, Inc. using a random-digit dial (RDD) sample of 1,606 adults over the age of 18, living in the U.S. The survey, which included some patients diagnosed with fibromyalgia by healthcare providers, took place from May 22 to June 4, 2007. The maximum expected sample error for a simple random sample of this size is plus or minus 2.5 percentage points. The survey was commissioned on behalf of the National Fibromyalgia Association. The physician survey, designed to understand the perceptions and attitudes doctors have towards fibromyalgia, was conducted by Penn, Schoen, & Berland Associates, LLC. Interviews with 557 physicians (100 rheumatologists, 102 neurologists, 103 OB/GYNs, 100 psychiatrists, 101 primary care physicians, and 51 anesthesiologists with a pain management sub-specialty) were conducted on the Internet from March 30 to April 9, 2007. The survey was commissioned on behalf of the National Fibromyalgia Association.

About Fibromyalgia: Fibromyalgia is a chronic pain disorder characterized by widespread musculoskeletal aches, pain, and stiffness, soft tissue tenderness, fatigue, and sleep disturbances. Patients experience a range of symptoms of varying intensities that may wax and wane over time. Fibromyalgia is thought to result from neurological changes in how patients perceive pain. Because of its debilitating nature, fibromyalgia has a serious impact on patients’ families, friends and employers, and society.

About the National Fibromyalgia Association: The National Fibromyalgia Association is a non-profit 501(c)(3) organization whose mission is to develop and execute programs dedicated to improving the quality of life for people with fibromyalgia by increasing the awareness of the public, media, government and medical communities. The NFA publishes a quarterly magazine, Fibromyalgia AWARE, and hosts an award-winning Web site at www.FMaware.org.

The Fibro-Fog Chronicles, Indeed

2007-08-04T18:50:00.000-04:00

The day I was diagnosed with fibromyalgia was one of the best days of my life. I woke up in excruciating pain and crushing fatigue, more severe than that which I experience on most days. I had gotten the news a few days earlier that all of my tests had once again come back "normal" (from the neurologist, last Friday). And that fine Thursday morning, I was scheduled to visit my primary care physician for a follow-up.

I considered cancelling the appointment. What was the point, after all? I feel sick all the time, and few people believe me. "You look fine," remember? I really felt the appointment would be another colossal waste of time. The appointment was at 9:15, and I had learned by now to arrive at least 30 minutes early so that I wouldn't become part of the backlog of the overworked, albeit brilliant, Dr. F. This meant I'd have to leave home no later than 8:30 in order to drive to Worcester, get a decent parking spot, and walk the length of the very large hospital where Dr. F's office is located.

I stumbled into the shower and forced myself to take one. I decided not to drink any coffee, or eat any food. It was way too early. When I emerged from the shower, still in pain and totally exhausted, I remembered that I had not gotten the requisite "reminder phone call" the day before from the automated voice. This made me wonder, since the appointment was made not by the regular nurse but by a fill-in, over two months previously, if in fact the appointment was ever logged. At 8:15, I picked up the phone and dialed the office. I received voicemail, indicating that it was still Wednesday, Dr. F's half-day. Well, I thought, why not just drive there and if there is no appointment I can either ask to see the doctor anyway, or just go shopping. (The prospect of shopping not very enticing since I felt like crap).

Turns out that my appointment was scheduled, and I was asked to take a seat and wait beside a lovely young lady who, 20 years younger than me at least, was quite obviously suffering from a similar malady to my own. We even looked a bit alike, she a younger version of me, and taller. We sat together in silence, never making eye contact.

She went first, and then a few minutes later I was directed into an exam room by a male nurse whom I'd never met before.

When Dr. F came into the room, she took one look at me and said, "Oh! You're not sleeping!" I replied, "Yes, I'm sleeping straight through the night, but I wake up exhausted and in incredible pain."

"Tell me about the pain." she said. And so I did. And then I told her I had "a million" other symptoms. She asked me to recount those. I told her I would, but may not remember them all.

I never uttered the word fibromyalgia.

But Dr. F did. She asked: wasn't I evaluated by a rheumatologist for fibromyalgia at one time? I reminded her about Dr. B. who was "not very nice" and was "very dismissive of me". Then she asked, "Didn't we discuss fibromyalgia before?" I said yes, but neither she nor Dr. B. felt that I met the criteria.

She then explained that sometimes fibromyalgia needs a "wait and see" approach, and no one likes to diagnose it right away. She wanted to be sure I was still experiencing the same symptoms months later (and I am).

Dr. F. proceeded to poke around at the areas known in fibromyalgia terminology as "tender points". Yup, they all hurt. We had a lengthy discussion about all my other symptoms, and she prescribed some new medication saying it was approved for neuropathic pain and the crippling anxiety attacks I've been experiencing lately. Not Lyrica, but Cymbalta, another anti-depressant even though I'm already taking one. She took more blood tests "just to be sure", and away I went. With a diagnosis.

On the way out, I got a cup of coffee, some food, some water, and popped two Motrins. My head and back felt as if they were on fire. But I was on cloud nine.

August 2, 2007. One of the best days of my life. I can now move on. No more worrying about "what's wrong with me?" Now I can treat my symptoms, I can move forward, I am no longer stuck.

The first thing I did that night was to pull out all ten of my various "Fibromyalgia" books off the dusty shelf in the catch-all room upstairs. They were buried beneath books on the "mimickers" of fibromyalgia: Chronic fatigue syndrome, Multiple Sclerosis, Lupus, Lyme disease and adrenal fatigue syndrome, just to name a few. I had spent a lot of frickin' money researching these illnesses and syndromes, in my quest for answers. At one time or another, I was convinced that I'd had every single one of these conditions (not at the same time!). And I was tested for them all, and all those tests came back negative (more than once). But every so often, a little nagging suspicion would crop up and I'd think, "No, it's fibromyalgia, I know it is." Nevertheless, I subjected myself and a number of doctors to putting me through the tests to eliminate (or perhaps confirm) these suspects. Most recently, it was MS that I was convinced I had, since I've developed a lot of electrical feelings, numbness and tingling in my feet and hands, and have been tripping over my feet, dizzy beyond belief, and a host of other symptoms consistent with both MS and FM. The insidiousness of these invisible illnesses has not been lost on me. I have experience with another insidious disease: alcoholism.

I picked two of the ten books and started to read. It was not long before sleep took over, and so I only read a chapter or two of each book (I tend to read more than one book at a time, as has been my habit for years. Pick up one, read a little, put it aside, pick up the other...). Previously, I had only skimmed these books for items of interest, but had never actually read them.

The first thing I learned, and which I promptly tucked into a little place in my heart and head hoping it will remain there forever is that the pain of fibromyalgia just "is". It is not caused by anything I am doing or not doing, eating or not eating, drinking or not drinking. It isn't caused by stress, exercise, or overwork. It is exacerbated by these things, that is for sure, but the pain just is there (and sometimes it's not) and there is no rhyme or reason for it. It is unexplained, it is invisible to others, but it is real.

I'd been playing the "blame-game" for the past three years, trying desperately to figure out why some days I would be in excruciating pain in my shoulders, other days my feet would hurt, sometimes I wouldn't have pain at all (usually when I had a doctor's appointment!). Sometimes it'd crop up in the middle of the night, most of the time I'd wake up in pain, but then it goes away later in the day, other times it would literally bounce around my entire body: shoulder hurts for two hours, then foot hurts, then ankle, then a headache, then pelvic cramps. And then of course, the overall feeling of malaise. If you've ever had a hangover from drinking, you know how I feel on most days. It's been maddening. Was it lactose intolerance? Caffeine? Did I sit or lie down in a bad position? Did I ride my bike too hard? Did I walk the dogs too vigorously? Work too many hours? Sit at my desk writing for too long? Watch too much TV? Not move around enough? Is there mold in the house? Sick building at work? The questions and the worry were maddening.

It became imperative that I read and Googled everything I could get my hands on regarding these various diseases. A search of my Google history is horrifying, the obsession had overtaken my life. I would spend my spare time searching and searching. At times, I would give up and say "They're right. It's all in my head. There's nothing wrong with me." Only to wake up the next morning in debilitating pain unable to perform the slightest activity without having to lie down and rest, completely devoid of any stamina despite having slept eight hours without interruption. A once formidable force to be reckoned with, I had become reduced to someone with the energy level of a 90-year old. For heaven's sake, what would I be like at 90? I would wonder.

And to top it all off, I had developed chronic anxiety. Yes, this is another typical symptom of FM. I suppose that I "developed" chronic anxiety a long, long time ago in the form of "school phobia" as a child (oh, girls you will remember eighth grade!). School phobia is otherwise known as separation anxiety (not just for dogs, anymore!). You'll read more about that in my memoir.

And speaking of when did this all start and/or what caused it? Well, the official response is, doctors and researchers don't actually know. Personally, I can speculate and pinpoint some definite signposts. Some of it started in my childhood. Chronic migraine headaches by age 10, painful periods by age 11, vasovagal syncope (a fancy word for fainting) since that same time frame. Fast forward to age 15, when I became involved with an angry young man in a physically abusive relationship. That's in the book, too. Onward to bigger and better things (not!) in my 20s, I was a passenger in several minor automobile accidents, always and only being the injured passenger, and a major crash which resulted in head trauma, severe whiplash and a dislocated jaw.

In my 30s, the beginnings of chronic pain became known to me, and to my colleagues at work, as "Stress Neck". Co-workers could tell from across the room when I was having what I now know as a fibro-flare. "K2," they'd exclaim, "Are you having Stress Neck today?!" This affliction was quite often accompanied by a migraine headache and exhaustion so acute I'd have to go home and go to bed.

I took up bike-riding again (a childhood fave) in my late 30s, shortly before Timba's death. Often, after a lengthy bike ride, I'd develop what I dubbed "Take Your Breath Away" -- a horrible pain in the middle of my spine right between the "wings" area of my back, coupled with an inability to breathe and the added insult of what felt like a pulled muscle which would last several days. Now, in my 40s, I often get "Take Your Breath Away" just by lifting a shopping bag! (See post entitled "Shopping Bag Injuries" from a few months ago).

At 44, as recounted in the very first post on this blog, I came down with a strange virus after traveling abroad, and also got into two very minor "fender-benders" within a span of approximately four months time. I've been in chronic widespread pain in my entire body ever since, accompanied by indescribable, bone-crushing fatigue which itself also occurs for no apparent reason, and for which I tortured myself for three years trying to figure out what I was doing wrong that would result in my being so tired. The answer? Nothing. It just is.

The other symptoms are too numerous to list here, and they are also recounted in the first post on this blog. Perhaps I'll write more about those at another time. I will say that I know many people probably have thought I am depressed. After all, I've got this long, gray hair that I refuse to color or cut, I wear sweatpants and t-shirts, and I never wear jewelry, high-heels or makeup anymore. But I'm a happy person. Very happy. I don't have a mood disorder. I just hurt. Chemicals, clothing and jewelry make me feel bad or uncomfortable. I keep twisting my ankles, so there are a dozen pair of heels in my closet collecting dust. I take anti-depressants. They are prescribed for sleep and anxiety, not depression. I suffer from anxiety and mild panic moments (I won't say they're "attacks"). But I'm always in a good mood and often feel very pleasant internally. I'm a lot of fun to be around. I've got a good beat, and I'm fun to dance with.

Fibromyalgia just "is". That's what I learned during the past three days. I'm not doing anything to cause it, (and neither are you!). To coin a phrase that my beloved Gil hates to hear, "It is what it is."

There was a reason I named this blog "Walking Wounded: The Fibro-Fog Chronicles". You see, I've known all along that this is fibromyalgia, it just took a while for everybody else to catch up.

K2

Neuro appointment

2007-07-28T11:48:00.000-04:00

The appointment yesterday was inconclusive for the most part. I was examined by two neurologists. One, a "Grey's Anatomy" Ellen Pompeo-type intern, spent the most time with me. The second, the older woman who is very reknowned in the area, only spent a few minutes.
They each examined me and made me go through the reflex tests and other tests like closing my eyes and standing on one foot and stuff like that. The appointment lasted about two hours, including lab tests. Interestingly, the main neuro repeated two of the tests that the younger woman performed. They seemed to pay a lot of attention to my eyes and eye movements, as well as listening to my neck area with a stethoscope.

I did receive one answer, which made the entire appointment "worth it", but a day later has produced a zillion questions, and it's a Saturday so I can't call them! This has to do with the "attacks" I have at the onset of my menstrual period every month. These have been going on for 36 years, almost every month, with the exception of during my mid-30s when I was on "the pill" and then I had migraines that landed me in bed for an entire day instead. I don't know which is worse.

The "attacks" which I've mentioned here on the blog before turn out to be something called vasovagal reflex. There is a ton of information on the web about this, just Google the term and there you have it. This kind of thing has probably happened to most people at least once in their life. Most often, it is related to fear of needles -- such as if someone needs to have a blood test they become dizzy, faint and even vomit from the mere thought of having blood drawn. In other instances, vasovagal reflex can happen if someone has see something awful like a horrible car accident, a broken bone, or "I can't stand the sight of blood" type of thing, or the delivery of bad news such as the death of a family member or the announcement of a terminal illness. Another, more common occurrence (and one that actually happened to me as a kid): passing out in science class when you have to dissect the frog!

Vasovagal reflex can be brought about by severe pain. It often occurs in women who have painful periods (that'd be me). It is somewhat anxiety-related, but it is also a true central nervous system issue.

It is also often related to LQTS, a heart-arrythmia syndrome related to defective electrical impulses in the heart. Since there is a history of this sort of thing in my family, I intend to discuss this with my PCP this Thursday when I see her. These "attacks" I've had since I was eleven years old (very common for them to begin in childhood) could be a precursor.

Back to the fibromyalgia or MS suspicions: the doctor ordered a CAT scan of my brain "just in case" even though she saw no indication that anything pointed to a serious medical condition such as MS. She discussed my chronic pain and fatigue with me. She explained how the nerves function, and suggested that I may have both a pinched nerve and arthritis in my neck.

They both discussed Lyme disease and B-12 deficiency with me at length. Due to my many years of drinking and vegetarianism, there is strong agreement amongst us that I could in fact be B-12 deficient. I wouldn't doubt it.

Blood tests were drawn for Lyme, B-12, Folate, Thyroid, Rheumatic factor, CPK and a few other things.

As usual, I feel as though I "blew it" a little bit. I had written up a "laundry list" of my symptoms (I had kept a diary for the last two months while waiting for the appointment). I chickened out and didn't give them the list. As a result, I forgot to talk about a few items, and am now kicking myself.

Prior to the appointment, on Thursday while driving home from Cape Cod, I realized that I am very anxiety-ridden, all the time, 24/7. I nearly bagged on the appointment because I had convinced myself that all my symptoms are chronic anxiety, and not fibromyalgia, MS, Lyme, Lupus or any of the others. I'm sorta off that square now, but I am going to discuss it with my PCP this week.

When it's all said and done, I still believe that I do have fibromyalgia, and that's going to be a major part of my discussion with her this week.

Stay tuned and thanks for everyone's support!

K2

Massachusetts legislators take a bite out of Lyme

2007-07-23T12:16:00.000-04:00

Today, Massachusetts legislators announced a proposal by Rep. Jennifer Callahan of Worcester that would result in a special facility, possibly located right here in Worcester (!!) devoted to educating health professionals about chronic Lyme disease which is often undiagnosed and untreated. Here is a news article on the topic, which was announced just one hour ago.

http://www1.whdh.com/news/articles/local/BO58179/

In addition, here is an article written about three weeks ago regarding the controversy over chronic Lyme diagnosis, and the difficulties patients like me often encounter in trying to get
a diagnosis.

http://www.boston.com/news/globe/health_science/articles/2007/06/25/diagnosis_controversy/

This, along with the recognition of Fibromyalgia by the FDA just last month, is fantastic news for people like me who have been living with these bizarre and annoying symptoms for many years with no diagnosis.

As you know, I've long suspected that I may have chronic Lyme disease. I was tested for Lyme by a reluctant physician in 2004 when I first developed chronic fatigue, pain and other symptoms consistent with Lyme (as well as MS, fibromyalgia, Lupus, Chronic Fatigue Syndrome and several other syndromes). That test came back negative. This is a common problem with chronic Lyme because only one testing lab in the U.S. is equipped to properly test blood samples for the presence of the Borelia bacteria in the blood. If your test doesn't get sent to that lab (and most don't), and you don't have the telltale "bull's-eye" rash, then your test comes back negative and you're told you don't have Lyme. This is more than a common occurrence, and part of the focus of Ms. Callahan's proposal.

I have been exposed to ticks constantly due to my interactions with my dogs as well as the frequency of my visits to Cape Cod. Ticks are also rampant in Worcester County as well. The way I figure it, if I don't have Lyme disease, it would be a miracle! While I have, to my knowledge, not seen the typical bull's-eye rash, I have often found ticks on myself, although I am not aware specifically of an actual bite. I check myself and my dogs for ticks constantly, and I'm more than vigilant about doing so. We are over-run with ticks here on Cape Cod, and it's not unusual to find one crawling up my leg! The dogs, who often sleep with me, are always loaded with ticks. I spend a good part of our post-walk routine picking ticks off everybody.

Since neurologists are the specialists most often dealing with chronic Lyme, it is more than ironic that these two newsworthy developments would occur just days before my upcoming introductory appointment with a neurologist.

I intend to discuss both issues with her: Lyme and Fibromyalgia.

Stay tuned!

Countdown!

2007-07-18T20:19:00.000-04:00

If anyone had ever told me a few years ago that I'd be looking forward to an appointment with a neurologist with the same anticipation as attending a Bon Jovi concert in the past, I would've thought they were nuts.

Here I am, counting the days until I can tell this neurologist about all of my symptoms. Nine more days.

I've been keeping a symptom diary. It doesn't make good reading. If anyone ever saw it, they'd never believe it. I hide it all so well. The invisible, mysterious whatever-this-is.

My PCP made the referral for me in late May, around Memorial Day. I had to wait that long for the appointment -- over two months.

Had I waited just four weeks to make that demanding phone call to my PCP, I might have made a different call, for on June 21st, the FDA finally approved a drug (Lyrica) to treat fibromyalgia. And, as a consequence, fibromyalgia is now "recognized" by the medical establishment. Why, there are even ads on CNN for Lyrica and a special web page on Phizer's web site directing people to "fibro" information. Un-believable! To how many doctors have I suggested that I have fibromyalgia? I've lost count. Six, maybe seven. And I was dismissed as a crazy loon, "there's nothing wrong with you" -- well, I've gone into all that before, so I won't again.

During the second month of waiting for the neurology appointment, and due to keeping my symptoms diary, I have figured out that something happens to me about 30 minutes after I eat. I get intense burning pain in my shoulders and back (the usual places that I've always had the pain), and bone-crushing, indescribable fatigue. I never connected it with anything until this past month. True to form, I've looked up everything on the internet. The fatigue reaction is something called reactive hypoglycemia, and it is very common in people with fibromyalgia. But I can't find anything that relates this to the pain. It is literally like my upper back is on fire. Even my skin feels hot to the touch when it happens. It is very bizarre. I certainly will mention it to the doctors.

If nothing comes of the neurology appointment, my next step is to talk to my PCP about the Lyrica ads. I don't want Lyrica, I want a diagnosis, but if a discussion about Lyrica has to be the catalyst to get diagnosed, then I'm definitely going to bring it up. My appointment with my PCP is just a few days after the neuro.

I have started a group on Yahoo Groups called "undiagnosed". Fellow suffers of mysterious, unexplained pain and fatigue syndromes who are frustrated by being unable to get a diagnosis, please join the group! It will be up and running soon.

Stay tuned!

K2
Click to join undiagnosed

Fibromyalgia Finally Recognized!

2007-06-30T14:58:00.000-04:00

The following is courtesy of the Fibromyalgia Research Blog. Great news... a step in the right direction!!!

Of particular interest to me was the FDA link at the end. Please, if you are reading this and don't know what fibromyalgia is, please click on the link below and read. We need to promote awareness of this invisible and debilitating condition that affects so many!!!!

Posted: 22 Jun 2007 11:00 AM CDT
June 21, 2007, will is a major landmark in the history of fibromyalgia treatment. Yesterday Pfizer, Inc. won federal approval for Lyrica as the first treatment for fibromyalgia. This means that Lyrica will be the first drug that can be marketed specifically as a treatment for fibromyalgia patients, unlike the many drugs that have been prescribed for fibroomyalgia patients for "off-label" uses. This also will have implications for the insurance industry and the potential for policies to cover this medication for insured patients.Lyrica is an anti-convulsant that was previously approved by the FDA for the treatment of seizures, post-herpetic pain and diabetic neuropathy.According to CBS, the "FDA warned that common side effects of the drug included mild-to-moderate dizziness and sleepiness. Also, the agency said that Lyrica reduces pain and improves daily functions for some patients with fibromyalgia, but that not everyone derived benefit from the drug in studies."In the wake of this groundbreaking news, the FDA has published a page on their site about the debilitating affects of fibromyalgia and ways for patients to cope with it, including information about the new "fibromyalgia medication." You can see this page at: http://www.fda.gov/consumer/updates/fibromyalgia062107.html

Well, Looky Here

2007-06-26T09:32:00.000-04:00

In July of 2004, exactly three years ago, I was diagnosed as having a lifelong blood disorder called hereditary spherocytosis. The oncologist who diagnosed me did so very quickly, and prescribed Folic Acid 1 mg daily (prescription). He said I'd have to take 1 mg of Folic Acid for the rest of my life. For the past three years, that is exactly what I have done.

For two of those three years, and most recently during the past six months, I've been experiencing worrisome neurological symptoms, as I've described in previous posts. My seizure-like episodes that occur at the onset of my monthly menstrual period have become extremely severe.

About three weeks ago, I stopped taking ALL vitamin, mineral and herbal supplements, including the Folic Acid. I was concerned that something I was taking may be causing these symptoms. I think I've pretty much cleansed my body of everything now, and I have to admit I do feel somewhat better. I also am not eating dairy except for very small amounts.

While I patiently await my appointment with the neurologist a month from tomorrow, several people have suggested that I may simply have B-12 deficiency. I started researching this, and I stumbled upon something this morning that astonished me. If an adult takes large doses of folic acid, it can actually TRIGGER symptoms of B12 deficiency. Permanent nerve damage can occur if B12 deficiency goes untreated. Since I'm a semi-vegetarian AND have a history of alcoholism (sober 19 years!) AND have spherocytosis which can cause anemia, I am not only at high-risk for B12 deficiency but also did not have my B12 levels checked prior to being prescribed Folic Acid.

If a doctor checks a person's B12 levels while that person is taking large doses of Folic Acid, the Folic Acid masks the B12 deficiency, resulting in a "normal" test result.

And guess what else? High levels of Folic Acid can trigger seizures in people with seizure disorders.

Here are some quotes I've taken off various web sites this morning:

Caution About Folic Acid Supplements
Beware of the interaction between vitamin B12 and folic acid
Intake of supplemental folic acid should not exceed 1,000 micrograms (μg) per day to prevent folic acid from triggering symptoms of vitamin B12 deficiency [10]. Folic acid supplements can correct the anemia associated with vitamin B12 deficiency. Unfortunately, folic acid will not correct changes in the nervous system that result from vitamin B12 deficiency. Permanent nerve damage can occur if vitamin B12 deficiency is not treated.

It is very important for older adults to be aware of the relationship between folic acid and vitamin B12 because they are at greater risk of having a vitamin B12 deficiency. If you are 50 years of age or older, ask your physician to check your B12 status before you take a supplement that contains folic acid. If you are taking a supplement containing folic acid, read the label to make sure it also contains B12 or speak with a physician about the need for a B12 supplement.

A word of caution: Folic acid can correct the nonneurologic signs and symptoms associated with vitamin B12 deficiency while masking the neurologic symptoms, allowing them to progress. Neurologic signs of vitamin B12 deficiency, normally reversible with B12 injectable supplements, may become permanent if left unchecked for too long. Any patient taking folic acid supplements who may have a vitamin B12 deficiency should be assessed for this possibility and treated if indicated.

What is the health risk of too much folic acid?
Folate intake from food is not associated with any health risk. The risk of toxicity from folic acid intake from supplements and/or fortified foods is also low [65]. It is a water soluble vitamin, so any excess intake is usually excreted in urine. There is some evidence that high levels of folic acid can provoke seizures in patients taking anti-convulsant medications [1]. Anyone taking such medications should consult with a medical doctor before taking a folic acid supplement.

The Institute of Medicine has established a tolerable upper intake level (UL) for folate from fortified foods or supplements (i.e. folic acid) for ages one and above. Intakes above this level increase the risk of adverse health effects. In adults, supplemental folic acid should not exceed the UL to prevent folic acid from triggering symptoms of vitamin B12 deficiency [10]. It is important to recognize that the UL refers to the amount of synthetic folate (i.e. folic acid) being consumed per day from fortified foods and/or supplements. There is no health risk, and no UL, for natural sources of folate found in food. Table 4 lists the Upper Intake Levels (UL) for folate, in micrograms (μg), for children and adults.

Caution: Folic Acid and vitamin B12 deficiency
Folic acid can correct the anemia that is caused by vitamin B12 deficiency. Unfortunately, folic acid will not correct the nerve damage also caused by vitamin B12 deficiency [1,36]. Permanent nerve damage can occur if vitamin B12 deficiency is not treated. Folic acid intake from food and supplements should not exceed 1,000 μg daily in healthy individuals because large amounts of folic acid can trigger the damaging effects of vitamin B12 deficiency [7]. Adults older than 50 years who take a folic acid supplement should ask their physician or qualified health care provider about their need for additional vitamin B12.

Upper Limit for Folic Acid Intake

Folic acid is water-soluble, which means excess amounts are usually excreted in the urine. However, the federal Office of Dietary Supplements (ODS) notes that the Institutes of Medicine has set an upper limit of 1 milligram per day for adults aged 19 and older. Almadori's study used a much higher dosage of folic acid, but it did not address any side effects.

Getting more than the upper limit of folic acid could trigger symptoms of vitamin B12 deficiency, states the ODS. Signs of vitamin B12 deficiency include anemia, fatigue, weakness, constipation, loss of appetite, weight loss, numbness or tingling in the hands and feet, and depression.

Such symptoms are also seen with other conditions, so check with your doctor about any concerns.

Toxicity Symptoms

What are toxicity symptoms for folate?

At very high doses greater than 1,000-2,000 micrograms, folate intake can trigger the same kinds of nervous system-related symptoms that it is ordinarily used to prevent. These symptoms include insomnia, malaise, irritability, and intestinal dysfunction. Primarily for these reasons, the Institute of Medicine at the National Academy of Sciences set a tolerable upper limit (UL) in 1998 of 1,000 mcg for men and women 19 years and older. This UL was only designed to apply to "synthetic folate" defined as the forms obtained from supplements and/or fortified foods.

Tips & Warnings
Ask your doctor for advice on how to safely add the recommended amount of folic acid to your diet.
Folic acid should not be taken in excess, since it can trigger symptoms of B12 deficiency.
Avoid foods that are fortified with folic acid if your diet includes a high amount of folic acid naturally.

What an Attack Feels Like

2007-06-05T10:10:00.001-04:00

It happened again last night, 2:12 a.m. It has taken many years, too many, but I have finally realized the doctors are right. There is not anything gynecologically wrong with me.

These attacks are two-fold.

On the one hand, there appears to be an inner ear problem which causes the room to spin, the kaleidoscope to appear over my right eye's field of vision, the intense buzzzz and ringing in my ears, followed by the need to lie down lest I fall down. The whole thing ends in vomiting and occasionally fainting and sometimes temporary hearing loss and a migraine.

Once that's over, the muscle spasms begin. These are not confined to the abdominal/uterine area, although that is the feature presentation. Spasms occur in my extremeties and even my face. The spasms bounce around for between 1 and 2 hours, during which time I try to stretch my muscles as best I can, and can do nothing else but lie there and "take it." My joints all crack repeatedly during these episodes, every time I move.

When the muscle spasms subside, the pain sets in. It is mainly concentrated in my lower back, shoulders and neck, and it's difficult to take a deep breath as my upper back area feels like something constrictive is there. The muscle pain feels like fire deep inside my body. It lasts for most of the day following these episodes, and sometimes into the next day, too.

I lose an entire night's sleep during these episodes, which puts me back into a sleep deficit and will take several days to be "right" again. This just makes the muscle pain flare up even more, and of course extreme fatigue.

The good news is I have an appointment with a neurologist in July. I wish I didn't have to wait so long, but she is one of the best in our area, and it sounds like I have finally been taken seriously. She also runs a sleep disorder clinic, which is something I should have done a long time ago, so we will get it all fixed up now. One-stop shopping, so to speak.

This inner ear thing makes a lot of sense. For one, I have great difficulty walking down stairways as I am constantly afraid I will fall and I'm always dizzy. This is especially fun at the beach when I have both dogs on-leash! When I drive in the car with all the windows shut, I feel incredibly fatigued and have to constantly try to pop my ear, almost like when you're flying and you have to clear your ears. Only my ear never clears. I find myself trying to clear my left ear almost all the time. It has become an involuntary habit, basically. I never realized it, but there is a constant "hum" in my ears. Thankfully I have no hearing loss to speak of. I couldn't imagine not being able to hear music, Ben's laughter, Gil's voice, Maggie's meow, Hobie's BARK! or Hector's howl. The ocean and the birds. It would be horrible, and I hope that never happens.

Speaking of flying, it makes a lot of sense that I become so ill on airplane trips if I have an inner-ear problem. And the same is true for rock concerts -- I always get sick after rock concerts. The loud noise can exacerbate inner-ear problems (duh).

The muscles spasming and the constant numbness and tingling of my fingers and toes is worrisome, but I am on the road to getting some answers, so I will try to keep good notes and see the positive side of it for now.

More Commenters! We Like Comments!

2007-05-26T21:20:00.000-04:00

When several people told me I should start an online blog about my experience with fibromyalgia or whatever-the-hell this thing is, I had doubts that anyone would participate. But looky here!! Two comments on the Dairy Free = Pain Free (For Me) blog posting.

I am thrilled beyond belief! Thank you thank you.

Please continue commenting. I really welcome the feedback, and would like to see more participation.

As for an update on my health, I've lost 10 pounds since stopping dairy. The pain is a LOT less than it was. But I continue to have vague and strange neurological sensations. A couple people suggested MS, and one suggested vitamin B-12 deficiency, which "mimics" MS (don't all of these things mimic each other? jeeesh!)

Doctor is getting a phone call this coming week. I asked her for a referral to a neurologist, and she poo-poo'ed me. Here we go again.

Summer's here! I always feel better in the summer.

Excellent article on fibromyalgia

2007-04-21T09:53:00.000-04:00

This is long, but well worth it for those who want a better understanding of fibromyalgia, and in particular "tender points as diagnosis" controversy (a major bone of contention with me!)

Here is the article, which I received from the fibromyalgia blog:

Fibromyalgia: Update on Mechanisms and Management[Rheumatology Grand Rounds at Rush]JCR: Journal of Clinical Rheumatology:Volume 13(2)April 2007pp 102-109Clauw, Daniel J. MD From the *Division of Rheumatology, Chronic Pain and Fatigue Research Center, †Clinical and Translational Research, University of Michigan Medical Center, Ann Arbor, Michigan. From Rheumatology Grand Rounds at Rush University Medical Center, Chicago, IL, USA. Editors: Robert S. Katz, MD, and Joel A. Block, MD.Reprints: Daniel J. Clauw, MD, Director, Chronic Pain and Fatigue Research Center, University of Michigan Medical Center, Ann Arbor, Michigan 48109. E-mail: [log in to unmask]PMID: 17414543THE ACR CRITERIA FOR

FIBROMYALGIA: THE GOOD AND THE BADThe American College of Rheumatology criteria have been both bad and good for fibromyalgia.1 When they were published in 1990, this is what we thought fibromyalgia was: chronic widespread pain and the 11 of 18 tender points. If this is your view of fibromyalgia, then fibromyalgia is really no different than other rheumatic diseases like osteoarthritis or rheumatoid arthritis or lupus-a discrete illness. In 1990, we also thought that the tenderness was confined to certain areas of the body, or at least more accentuated in certain areas of the body, which we refer to as tender points. Finally, another misconception that exists to this day in many people's mind is that psychological and behavioral factors are always present in people with fibromyalgia and always make them worse.A more contemporary view of fibromyalgia is that rather than being a discrete illness, it is a part of a huge continuum of pain and somatic syndromes. It happens to be what we, as rheumatologists, are most comfortable calling it. But these individuals have pain throughout their entire body that isn't due to damage or inflammation, and there's a great deal of scientific evidence that this is one large spectrum of illness that includes fibromyalgia, irritable bowel, and temporomandibular joint (TMJ) syndrome-as well as a number of other conditions that I'll talk about later. Even if we use the American College of Rheumatology (ACR) criteria to diagnose fibromyalgia (i.e., on the basis of widespread tenderness and pain), people don't just have tenderness and pain. They have a lot of other somatic symptoms besides pain and tenderness. And, again, psychological and behavioral factors only play negative roles in some individuals.We also now know that the entire individual with fibromyalgia is tender, and that there is nothing magical about tender points. These are merely areas where everyone is more tender. But fibromyalgia patients are also much more tender wherever you apply pressure, including areas previously considered to be control points. In fact, in our research group, when performing sophisticated imaging studies, we push on the thumbnail because we found that the thumbnail is just as tender (relative to that same region in a healthy control) as any of the tender points. Fred Wolfe was the first to point this out. He suggested that we should abandon this old term that used to be called control points and call them high-threshold tender points; areas like the forehead and the thumbnail and the anterior tibial region are just areas where all of us have a higher pain threshold.These are many other problems with ACR criteria and specifically with tender points. We didn't know any of this in 1990, so I'm not being critical of the people who were involved in developing the ACR criteria because they have been wonderful in standardizing research into fibromyalgia. But we didn't know that tender points are actually not a very good measure of tenderness. In 1997, Wolfe published an article where he looked at some of the data that he collected in population-based studies. He had found that the number of tender points an individual has is highly correlated with the number of measures of distress-of anxiety, depression, and distress.2 What he said in that article was that tender points are a sedimentation rate for distress. Since then, our group and others have shown that other more sophisticated measures of tenderness, such as where you give people stimuli randomly when they can't anticipate what the next stimulus is going to be, are just as abnormal in people with fibromyalgia, but these are not at all related to the level of distress of the individual.3 So people with fibromyalgia are indeed much more tender, or they have what we would call a left-shift in their stimulus-response function with respect to pressure. So the take-home message is that fibromyalgia patients are much more tender even using more sophisticated measures that are not confounded by distress. However, tender points are not a very good measure of tenderness. Tender points are part a measure of tenderness and part a measure of how anxious and depressed an individual is.I might be the first author that I know of that's been able to get away with writing a chapter in textbook regarding fibromyalgia without having an illustration of a woman with 18 dots on it, because I think that the longer that we highlight the ACR criteria and highlight these 18 areas of the body, the longer physicians are going to think that there is something uniquely wrong with those 18 areas of the body rather than realize that this is a diffuse, central problem with pain processing. This gives an inappropriate impression about the nature of fibromyalgia when you put those 18 dots and they all happen to be located over muscle-tendon junctions and people sort of think, Well, that's where the problem is, rather than realizing that this is a problem in the central nervous system with the way people are processing pain or sensory information. Our group hypothesizes that this is actually a more global problem with sensory processing, not just pain processing, because people with this spectrum of illness are sensitive to a number of different types of stimuli rather than just somatic pain.I think one of the other disservices that the ACR criteria has done is that they've deluded us into thinking that fibromyalgia occurs almost exclusively in women. If you use the ACR criteria, 92% of the people in the population who are identified as meeting those criteria are females. But if you break down the criteria into the 2 elements, (1) chronic widespread pain and (2) 11 of 18 tender points, women are only 1[1/2] times as likely as men to have chronic widespread pain, but women are 11 times as likely as men to have 11 of 18 tender points. So what we've done with the ACR criteria is take an illness that is probably only about 1[1/2] times more commonly in women and make physicians think that this occurs only in females. This is similar to what we did a couple of decades ago when I was trained as a rheumatologist, when we were taught that ankylosing spondylitis only occurred in males. When that's what we were taught, then we only thought of the diagnosis of ankylosing spondylitis in men, even though later data showed that the prevalence of AS is very similar in men and women.The same thing happens now with women versus men in chronic pain. Men who come in with the same exact symptoms and physical examination as women with fibromyalgia are more likely to be labeled with regional pain syndromes such as osteoarthritis, because if you do X-ray after X-ray (or worse yet MRI after MRI) you will always find something wrong. I used to have a diagnostic test called the X-ray jacket sign because when we went to the VA clinic, they would pull the X-ray jackets on all patients (before the X-rays were digitalized). I joked that if you could pull 10 consecutive musculoskeletal X-rays out and none of them were abnormal, that was a diagnostic test for fibromyalgia. And we had many men in the rheumatology clinic that we were seeing who had been labeled as osteoarthritis or chronic low back pain, who clearly had fibromyalgia. But the diagnosis carried for years and years in their chart was a regional pain syndrome such as osteoarthritis, even though there were inadequate radiographic findings to support this, and they typically did not respond very well to treatments for peripheral pain.Then the last thing that people should be aware of with tender points, and that is that 11 is a totally arbitrary number. Robert Katz has published articles recently talking about how different types of criteria function equally well. And he and I, and almost everyone in the fibromyalgia field, agree that the ACR criteria should not be used in clinical practice to diagnose fibromyalgia. They never were intended for that purpose. They were intended to standardize research studies. And they don't function very well at all when you use them in routine clinical practice.Every subspecialist that I know, except perhaps radiologists and pathologists, sees patients that was as rheumatologists call fibromyalgia and has one or more names for the symptoms in the area of the body they are responsible for. It is not until you realize the entirety of the problem, like the pharmaceutical industry now does, that you understand that this is one large problem that needs to be addressed in primary care, rather than something that's just been bestowed upon us in rheumatology because we have to deal with these fibromyalgia patients.MECHANISMS IN FIBROMYALGIASo to summarize, there's nothing wrong with thinking that fibromyalgia is a discrete disorder. But I'm going to talk of it as being more of the end of the continuum, or the way the pharmaceutical industry is viewing this right now, which is that it is the prototypical central pain state, where people can get pain and other somatic symptoms without having anything really wrong in their peripheral tissues that would cause a nociceptive problem.Regarding the underlying mechanisms in this spectrum of illness, we didn't know in 1990 what we know now about pain sensitivity. In 1990, the thought was that there were sort of 2 groups of people in the population: a small group of people who were very tender and thus met criteria for fibromyalgia, and the rest of the population, who had a normal pain threshold. But in the last 15 or so years, there have been a number of different studies of pain sensitivity in the population. And we now know that pain sensitivity in the population occurs over a wide continuum, a classic bell-shaped curve, just like almost any other physiologic variable. We're also learning that genetics have a lot to do with where you are on this continuum. I am quite comfortable saying that in 5-10 years we will have gene chips that will have been developed that will predict with a reasonable accuracy where people are on this bell-shaped curve, because polymorphisms and a number of different genes that involve the breakdown and metabolism of neurotransmitters involved in sensory transmission will predict with a fair amount of accuracy where someone is going to sit on this curve. And if you happen to be in the top quartile or tertile of that bell-shaped curve, on the far right where you're very sensitive to pain, you probably can develop pain without having any inflammation or damage in your peripheral tissues; and that can either be regional or widespread pain.So this is really the emerging notion of what's going on in these fields like fibromyalgia, TMJD, and irritable bowel. People, because of a combination of the genes they are born with and the environment that they grew up in, move to the right end of this bell-shaped curve and can develop pain and other somatic symptoms because of what's going on in their central nervous system rather than because of any damage or inflammation in their peripheral tissues.The best work showing the genetic and familial nature of fibromyalgia has been done by Lesley Arnold and her colleagues.4 They showed that if someone has fibromyalgia, the risk of one of their first-degree relatives having fibromyalgia is 8-fold greater. To put it in context, in lupus and rheumatoid arthritis, the odds ratio is 2 to 3; and we think of those diseases as being somewhat familial. But fibromyalgia is incredibly familial. And one of the nice things about this study is that it somewhat challenged an earlier notion that Jim Hudson, who was actually a coauthor of this study, published in the mid 1980s where he called this an affective spectrum, because he felt that depression and anxiety coaggregated strongly with fibromyalgia. The new studies, which he was also involved in, partially proved his theory, but the coaggregate between these disorders and fibromyalgia is weaker than previously suggested by studies done entirely in tertiary care centers. So there is a weaker coaggregation with mood disorders genetically, whereas there is a very strong coaggregation with other pain syndromes like fibromyalgia and irritable bowel syndrome and TMJ syndrome, and other psychiatric disorders such as obsessive compulsive disorder and bipolar disorder.One of the best studies looking at the precise genetic cause of conditions related to fibromyalgia was done by Luda Diatchenko and Bill Maixner at the University of North Carolina.5 They looked at a large cohort of women who were pain-free and followed them for 3 years to see who developed the TMJD syndrome, and showed that how tender an individual was at baseline, and polymorphisms in the COMT gene, predicted who went on to develop the TMJD syndrome over the 3-year period. That's just one single polymorphism, and there are a number of different polymorphisms that are probably playing a role in pain.There probably will be 20 or so genes that end up predicting with a reasonable amount of accuracy where someone is on this continuum of pain processing. But where I think it's going to be incredibly useful in 5 to 10 years is to figure out what drugs to give people who have this spectrum of illness because if I see that one person might have developed fibromyalgia because of an abnormality in catecholamine synthesis because of COMT or ß-adrenergic receptors, then these individuals might respond very well to, for example, a mixed reuptake inhibitor or low doses of a ß blocker. Whereas individuals who have different polymorphisms might be more responsive to drugs like pregabalin or gabapentin, or other classes of drugs, which will be developed in the future, that act on other neurotransmitters that either increase or decrease an individual's pain sensitivity.Given that nearly all illnesses are due to some combination of genes and environment, we also are beginning to better understand the environmental factors that seem to be important in triggering fibromyalgia. Most may be acting as stressors. One stressor that is clearly capable of causing fibromyalgia is to begin by having a peripheral pain syndrome (i.e., pain due to damage or inflammation of peripheral tissues). I'm not sure what percentage of rheumatologists are aware of this, but 20 to 25% of people with RA, lupus, and ankylosing spondylitis, have comorbid fibromyalgia.6 I see young and old rheumatologists who make the diagnosis of an autoimmune disease and then hone in and inordinately focus their treatment on autoimmunity. Every time that patient has pain or fatigue, we raise their dose of immunosuppressives because we think that's what is causing their pain and their fatigue. But if a quarter of the people with autoimmune diseases have comorbid fibromyalgia, maybe they need a low dose of amitryptiline or some aerobic exercise rather than a cytotoxic drug or 10 more milligrams of prednisone.Another stressor that can trigger this spectrum of illness is infections. Four different infections that have been shown in case-controlled studies to trigger either fibromyalgia or chronic fatigue syndrome: Epstein-Barr virus, parvovirus, Lyme disease, and Q fever.7 There are 2 studies published in the Lancet showing that the common cold isn't capable of triggering either chronic fatigue syndrome or fibromyalgia. Now, in almost all of my talk, you could substitute the word IBS for fibromyalgia and give the exact same talk, and it would be accurate. But this is one area where fibromyalgia and IBS would differ. The infections that trigger irritable bowel syndrome are virtually any infections that cause acute infectious colitis-nearly all have been shown in case-control studies to lead to the subsequent development of IBS. Likewise, a number of different genitalurinary infections have been shown to be capable of triggering the development of interstitial cystitisSo depending on where in the area of the body responsible for one of the syndromes, different infections that attack that area of the body seem to be capable of triggering it. But only about 4 to 7% of people with these infections go on to develop fibromyalgia, IBS, or interstitial cystitis, whereas the overwhelming majority of individuals that have these same infections recover fully and go on to their baseline state of health. So, again, it's probably some interplay between the genes the people are born with and the infections that they get.Physical trauma is another stressor that is capable of triggering the development of fibromyalgia. But one of the fascinating things about this is that this occurs much more frequently in some countries than others. In Lithuania, motor vehicle accidents trigger almost no chronic regional or chronic widespread pain; whereas in the United States, they trigger a fair amount of it.8 It's not the patient's fault. It has little to do with the insurance systems because this happens in no-fault and in other insurance systems. And it probably doesn't even have much to do with the disability and litigation systems. It may have more to do with what we as physicians (and the healthcare system) lead people to expect what will or won't happen after acute musculoskeletal trauma.In Lithuania, when you come in after a motor vehicle accident, and you see an emergency room physician, there is no expectation that there will be any chronic symptoms after that; you are given a few days worth of anti-inflammatory or analgesic medications, and told to go back to work. In the United States and many other countries, we give people opioids, tell them they might develop chronic pain, and tell them to rest. We haven't learned our lesson from good research in conditions such as acute low back pain, where we now know that the worst thing to do with someone with low back pain is to make them expect they might develop chronic pain, and tell them to stop moving and rest. So it may actually may be our health systems and the expectations that we as physicians set up with our patients when they come in with acute pain rather than being litigation or disability.With respect to stressors, there's actually weak data that psychologic stress and distress directly causes fibromyalgia. One of the fascinating things is I'm always surprised, being a scientist, at how often my clinical judgment ends up being wrong. When I was first doing research in fibromyalgia, I, like many of you, was always smacked in the face by the psychologic comorbidity that a lot of fibromyalgia patients come in and express. But the data suggest that many types of psychologic stress don't seem to trigger or worsen fibromyalgia. We were doing a study in Washington, D.C., where we were beginning to work with a company that was doing clinical trials in fibromyalgia, and they wanted to do more innovative outcome measures of fibromyalgia patients. So we were having fibromyalgia patients in Washington, D.C., wearing Palm pilots that beeped 5 times a day and they had to record their pain, their fatigue, their stress levels 5 times daily. As is not unusual in research, some of the best things that happen to you are serendipitous; and the 9/11 attacks on the Pentagon happened right smack in the middle of the study. So we had about 20 people who had been recording their pain, their fatigue, and their other symptoms, before and after the Pentagon attack, miles away from where all of these patients were living.We expected that we would see pain, fatigue, and stress levels go sky high in people with fibromyalgia after 9/11, but there was absolutely no change. Karen Raphael was doing a population-based epidemiologic study in New Jersey where she had collected baseline data in people right across the river from the World Trade Center in New Jersey, and similarly found no increase in symptoms.9 So you have to be very careful about attributing emotional stress to the development of fibromyalgia. It likely is very important what type of stress, and interpersonal stress may be much more likely to exacerbate or trigger fibromyalgia than the type of stress seen after 9/11.Finally, war is another thing that triggers the development of this spectrum of illness. The Department of Defense provides funding for our research group and many others because of the recognition that after the first Gulf War and, in fact, maybe after every war, one of the major postdeployment health problems is the development of chronic pain, fatigue, and what we would call either fibromyalgia, chronic fatigue syndrome, IBS, etc.10RELATIONSHIP BETWEEN NEUROBIOLOGICAL FACTORS AND PSYCHOLOGICAL, COGNITIVE, AND BEHAVIORAL FACTORSOne of the most controversial questions in this illness is what is the relationship between physiologic or neurobiologic factors and psychologic and behavioral factors. If you do research in this area, you quickly realize that the old dualist notion of organic versus functional illnesses needs to be abandoned, because everything that is psychologic or behavioral likely has neurobiologic and physiologic underpinnings, and psychologic and behavioral factors play significant roles in even the most biologic of illnesses. In fact, I think that one of the big tragedies regarding this spectrum of illness is that 30 or so years ago, fibromyalgia was on had equally poor credibility as a real disease with mental health disorders such as bipolar disease, major depression, and schizophrenia. But now these latter conditions are more credible than fibromyalgia, in large part because scientific studies have shown that there are strong biologic underpinnings to these illnesses. The research showing strong biologic underpinnings is equally strong in this spectrum of illness, but most physicians and the lay public are not yet aware of these findings. This will likely change rapidly in the next few years as new drugs are approved specifically for fibromyalgia, and the companies marketing these drugs will do a thorough job of educating both physicians and patients about these conditions.Until then, though, these patients are shunned and inappropriately treated in our current health care systems. Everyone is averting their eyes and acting like they're not part of the problem here. But we are. Rheumatologists don't want fibromyalgia. Gastroenterologists don't want IBS. None of the subspecialties want this. So there never has been an advocacy campaign like the psychiatrists and other mental health professionals mounted to legitimize psychiatric conditions.Having said that I'm not a dualist, it can actually be very helpful when you're sitting across the examination room from a fibromyalgia patient, to be a bit dualistic, and ask yourself how much social, cognitive, behavioral, and psychological factors are playing a role in symptom expression. Not all fibromyalgia patients are the same. Some of them respond very well to a little bit of a tricyclic drug and a little bit of education, and they never come back because they do fine. Others don't get better no matter what we do. We did a study published in Arthritis & Rheumatism a couple of years ago where we tried to develop subgroups based on 3 different domains. One domain was neurobiological; that was how tender people were using these more sophisticated measures of pressure pain threshold. One domain was whether they were depressed or anxious. And then the third domain was cognition, how they think about their pain. There are 2 particular cognitive patterns that are known to be very negative in pain. One is catastrophizing, which means that people have a very negative, pessimistic view of what their pain is and what it's doing to them. The other is an external locus of control, which basically means that people feel as though they can't do anything about their pain, so they can't control their pain. This study that I referred to earlier looked at 97 patients that we had been seeing at Georgetown, and 50 of them fell into the group we refer to as primary-care fibromyalgia patients.11 These people all met ACR criteria for fibromyalgia, but this subgroup was not depressed, they weren't anxious, they weren't very tender. They had enough tender points to meet the ACR criteria, but they weren't very tender using more sophisticated measures of pressure pain threshold. And they didn't have any negative cognitive factors, in that they didn't catastrophize, and had a moderate sense that they could control their pain. So in these people, they didn't have psychologic factors that seemed to be driving their pain to be worse, yet they had fibromyalgia. These people likely do fairly well with the kinds of treatments that we now recommend giving people with fibromyalgia.At the beginning of this talk, I usually ask people to remember a fibromyalgia patient, and when I get to this point of the talk, I say that that fibromyalgia patient that you remembered is in the second subgroup, that we refer to as tertiary care fibromyalgia patients. You, as a rheumatologist, are not well equipped to make this person better, because what's going on in their spinal cord and brain with respect to their pain processing is the least of their problems. In addition to being tender, they're depressed, anxious, they catastrophize, they have no sense they can control their pain. These are people that have very prominent psychological factors above and beyond what might be contributing to their tenderness. These are people that even the best multidisciplinary pain programs have difficulty making better, and they certainly are not going to get better by just giving them a drug that somehow modifies pain processing in the brain or spinal cord. It is naive to think that you're going to make this kind of person better by just giving them a drug, because superimposed on a central nervous system problem with pain processing, these individuals have had significant social, cognitive, behavioral, and psychologic consequences of years or decades of untreated pain and other somatic symptoms.The third subgroup that we identified in this study was very interesting. This group was the most tender of the three, suggesting that there was something quite wrong with how they processed pain. But despite this, these people were not anxious, they weren't depressed, they weren't catastrophizing. They actually had a moderate sense they could do something about their pain. These are individuals in whom psychologic resiliency seems to be buffering them against the neurobiological effects of fibromyalgia. In spite of what's going on in their brain and their spinal cord that is increasing their volume control setting and moving them to the right side of the bell-shaped curve, somehow they're coping and they're dealing with this condition much better than the other 2 groups. Several groups are now exploring whether it is possible to instill this resiliency into chronic pain patients. This is a relatively new thing in psychology; psychologists until recently focused on psychopathology, on anxiety, on depression, on the bad things that happen in psychology.I've noted several times that the fundamental problem with this spectrum of illness is in pain processing or sensory processing. One of the things that you should be aware of is that in fibromyalgia, as well as in IBS and most of the other conditions in this spectrum, it is not just painful stimuli to which these people are more sensitive. They are more sensitive to auditory loudness, bright lights, odors, and other sensory stimuli. In fact, accounts for the overlap between multiple chemical sensitivity (which is a misnomer) and fibromyalgia. Thus, it is appearing that this is not multiple chemical sensitivity; it is really multiple sensory sensitivity. People are just sensitive to a lot of different sensory stimuli.Back to talking about the sensation of pain, there are a number of different ways that people can theoretically move to the right end of this bell-shaped curve, and have an increased volume control in pain processing. Some of these mechanisms by which this occur involve peripheral nerves, whereas others are central mechanisms, involving the brain or spinal cord. One of the primary problems in fibromyalgia patients appears to be not that there is too much input coming from the pressure nociceptors or the thermal nociceptors, but rather that there is inadequate filtering of that activity, perhaps because of decreased activity of descending antinociceptive pathways.12,13 These pathways begin in the brain and brainstem and descend into the dorsal horn of the spinal cord and are normally responsible for inhibiting the upward transmission of pain. It appears that these pathways are not working properly in individuals with fibromyalgia. So a lot of nociceptive information that may be filtered out in normal individuals may not be filtered out in fibromyalgia patients.In addition to these studies that have used experimental pain testing to elucidate some of the underlying mechanisms in fibromyalgia, one of the other tools that you can use to look at pain processing in conditions like fibromyalgia is functional imaging. Our group, led by Rick Gracely, has performed many functional imaging studies in fibromyalgia. One of the big advantages of using functional brain imaging is that, because of animal and then later human studies that have been going on for the past 3 decades, we now know the regions of the brain that are involved in pain processing. Thus, we can give people painful stimuli under different conditions and image the neuronal activation patterns to infer how pain processing is different in fibromyalgia patients and controls. The areas of the brain that are involved in the sensory dimension of pain, which is basically where the pain located, and how much it hurts, are the primary and secondary somatosensory cortex and thalamus.There are other regions of the brain that are more involved in the affective dimension of pain or the emotional valance of pain, or in how they think about their pain, and these include regions such as the insula, anterior cingulated, amygdale, and prefrontal cortex. In the first study that used functional MRI to study pain processing in fibromyalgia, we gave fibromyalgia patients a 2.5 kg stimulus to their thumb and asked them how much it hurt on a 0 to 20 visual analog pain scale. We knew that they would experience moderate pain at the same level of pressure that nonfibromyalgia patients, healthy controls, experienced no pain. So we put the fibromyalgia patients in the scanner and gave them the low amount of pressure, which in them led to moderate pain, and then gave a group of healthy controls the same amount of pressure (which they rated as barely painful), and then the same amount of pain (by giving them twice as much pressure).The hypothesis was very simple. If we saw similar neuronal activation patterns in fibromyalgia patients getting the low pressure (which they felt as moderately painful), and the controls getting the same amount of pressure (which they barely felt), then that would indicate that fibromyalgia is some type of a perceptual problem, because although the fibromyalgia patients were having the same brain activation patterns, they were perceiving it differently. In contrast, we saw that the fibromyalgia patient's brain activation patterns were very similar with 2.5 kg of pressure as the controls getting 4.5 kg of pressure. This was the first objective evidence that there is augmented central pain processing in people with fibromyalgia.14 We published another functional MRI study a couple of years ago that showed that the level of depression that a fibromyalgia patient has doesn't at all influence the level of pain in the sensory areas of the brain.15 That suggests that depression and pain, when they are present simultaneously, are really somewhat independent constructs. We also have seen evidence of this in the clinical trials of drugs that are mixed reuptake inhibitors or tricyclics in that whether someone is depressed or not doesn't predict at all whether they're going to respond to one of these drugs as an analgesic.16In contrast, how people think about their pain might actually influence the sensory processing of pain. In another fMRI study, we showed that fibromyalgia patients that catastrophize actually have augmented neuronal activation in the secondary somatosensory cortex.17 Dave Williams in our group is just finishing a NIH-funded study that does functional imaging at baseline in fibromyalgia patients who have an external locus of pain control and then gives them several brief interventions to increase their locus of control. We hypothesize that changing patient's cognitions (in this case locus of pain control) will change the processing of pain in the brain, even in brain regions thought to be involved in the sensory processing of pain. Finally, we performed another fMRI study showing that individuals with chronic idiopathic low back pain (low back pain with normal lumbar MRIs) were indistinguishable from fibromyalgia patients with respect to their pain sensitivity at their thumbnail and with respect to their functional MRI findings.18 In aggregate, these and many other studies in this spectrum of illness suggest that there is neurobiological evidence of augmented central pain processing, and that in this setting, individuals can experience pain even without appropriate peripheral nociceptive input.TREATMENTNow that I have outlined some of the underlying mechanisms in fibromyalgia and related conditions, I'll finish by discussing treatment. Clinical-based evidence advocates a multifaceted program emphasizing education, certain medications, exercise, and cognitive therapy.19 However, the overwhelming majority of fibromyalgia patients are not being appropriately treated at present. Market surveys suggest that the no. 1 class of drugs currently used to treat fibromyalgia in the United States is NSAIDs, whereas opioids are no. 3 or 4, even though there is no evidence that either of these classes of drugs works in fibromyalgia. Moreover, most fibromyalgia patients are not being adequate education about their disease, nor are they given access to exercise and cognitive behavioral therapy programs. So it should not be surprising that these patients are frustrated and trying to prove that they really have something wrong with them when they come in to see us.DIAGNOSIS AND EDUCATIONOnce a physician rules out other potential disorders, an important and at times controversial step in the management of fibromyalgia is making the diagnosis. Despite some assumptions that being labeled with fibromyalgia may adversely affect patients, a study by White et al. indicated that patients had significant improvement in health satisfaction and symptoms after being given this label.20 Nonetheless, in certain selected individuals, i.e., adolescents, or individuals who may use the label as an excuse for maladaptive illness behavior, I prefer not to use this label but instead recommend the same type of treatment I would for a fibromyalgia patient. Regardless of the label used or not used, although the diagnosis of this condition should be coupled with patient education, an intervention shown to be effective in many randomized controlled trials.PHARMACOLOGICAL THERAPYThe most frequently studied pharmacological therapy for fibromyalgia is low doses of tricyclic compounds. Most tricyclic antidepressants (TCAs) increase the concentrations of serotonin and/or norepinephrine by directly blocking their respective reuptake. Despite tolerability issues, the use of TCAs (particularly amitriptyline and the biologically similar cyclobenzaprine) to treat the symptoms of pain, poor sleep, and fatigue associated with fibromyalgia is supported by several randomized, controlled trials.21 The tolerability of TCAs can be improved by beginning at very low doses (e.g., 5 to 10 mg of the above compounds), giving the dose a few hours before bedtime, and very slowly escalating the dose.Because of a better side-effect profile, newer antidepressants, i.e., selective serotonin reuptake inhibitors (SSRIs), are frequently used in fibromyalgia. The SSRIs fluoxetine, citalopram, and paroxetine have each been evaluated in randomized, placebo controlled trials in fibromyalgia, and in general, the less selective drugs are effective at high doses. The newer highly selective serotonin reuptake inhibitors, e.g., citalopram, seem to be less efficacious than the older SSRIs in both animal and human studies, perhaps because these latter compounds have noradrenergic activity at higher doses.22Because TCAs (and high doses of certain SSRIs such as fluoxetine and sertraline) that have the most balanced reuptake inhibition are the most effective analgesics, many in the pain field have concluded that dual receptor inhibitors [serotonin-norepinephrine and norepinephrine-serotonin reuptake inhibitors (SNRIs and NSRIs)] may be of more benefit than pure serotonergic drugs. These drugs are pharmacologically similar to some TCAs in their ability to inhibit the reuptake of both serotonin and norepinephrine, but differ from TCAs in being generally devoid of significant activity at other receptor systems. This selectivity results in diminished side effects and enhanced tolerability. The first available SNRI, venlafaxine, has data to support its use in the management of neuropathic pain, and retrospective trial data demonstrate that this compound is also effective in the prophylaxis of migraine and tension headaches. Two studies in fibromyalgia have had conflicting results, with the one using a higher dose showing efficacy.Two new SNRIs, milnacipran and duloxetine, have undergone recent multicenter trials.16,23 In the phase II trial evaluating milnacipran, statistically significant positive differences were noted in overall improvement, physical functioning, level of fatigue, and degree of reported physical impairment. In the trial of duloxetine when compared with placebo, participants treated with duloxetine had decreased self-reported pain and stiffness and a reduced number of tender points. In the 2 above studies as well as most studies that have used antidepressants as analgesics, the benefits on pain and other symptoms were independent of the drug effect on mood, thus suggesting that the analgesic and other positive effects of this class of drugs in fibromyalgia is not simply because of their antidepressant effects.Antiepileptic drugs are widely used in the treatment of various chronic pain conditions including postherpetic neuralgia and painful diabetic neuropathy. Pregabalin is a ?-aminobutyric acid (GABA) analog and approved for the treatment of neuropathic pain. A recent randomized, double-blinded, placebo-controlled trial demonstrated efficacy of pregabalin against pain, sleep disturbances, and fatigue in fibromyalgia.24 Similar results have also been recently noted with gabapentin, a compound with similar pharmacology to pregabalin.Sedative-hypnotic compounds are widely used by fibromyalgia patients. A handful of studies have been published on the use of certain nonbenzodiazepine hypnotics in fibromyalgia, such as zopiclone and zolpidem. These reports have suggested that these agents can improve the sleep and, perhaps, fatigue of fibromyalgia patients, though they had no significant effects upon pain. On the other hand, ?-hydroxybutyrate (also known as sodium oxabate), a precursor of GABA with powerful sedative properties, was recently shown to be useful in improving fatigue, pain, and sleep architecture in patients with fibromyalgia.25 Note, however, that this agent is a scheduled substance due to its abuse potential. Pramipexole is a dopamine agonist indicated for Parkinson disease that has shown utility in the treatment of periodic leg movement disorder, and a recent study suggests that this compound may improve both pain and sleep in fibromyalgia patients.26 Tizanidine is a centrally acting a2-adrenergic agonist approved by the FDA for the treatment of muscle spasticity associated with multiple sclerosis and stroke, and a recent trial reported significant improvements in several parameters in fibromyalgia, including sleep, pain, and measures of quality of life.27There have been no adequate, randomized controlled clinical trials of opiates in fibromyalgia, and many in the field (including myself) have not found this class of compounds to be effective in anecdotal experience. Tramadol is a compound that has some opioid activity (weak mu agonist activity) combined with serotonin/norepinephrine reuptake inhibition. This compound does appear to be somewhat efficacious in the management of fibromyalgia, as both an isolated compound and as fixed-dose combination with acetaminophen.28 Nonsteroidal anti-inflammatory drugs (NSAIDs) and acetaminophen are used by a large number of fibromyalgia patients. Although numerous studies have failed to confirm their effectiveness as analgesics in fibromyalgia, there is limited evidence that patients may experience enhanced analgesia when treated with combinations of NSAIDs and other agents. This phenomenon may be a result of concurrent peripheral pain conditions (i.e., osteoarthritis, tendonitis), which may be present in some individuals, and/or that these comorbid peripheral pain generators might lead to central sensitization and worsening of central pain.NONPHARMACOLOGICAL THERAPIESThe 2 best-studied nonpharmacological therapies are cognitive behavioral therapy and exercise. Both of these therapies have been shown to be efficacious in the treatment of fibromyalgia, as well as a plethora of other medical conditions.29 Both of these treatments can lead to sustained (e.g., greater than 1 year) improvements and are very effective when an individual complies with therapy.Alternative therapies have been explored by patients managing their own illness, as well as health care providers. As with other diseases, there are few controlled trials to advocate their general use. Trigger-point injections, chiropractic manipulation, acupuncture, and myofascial release therapy are among the more commonly used modalities, which achieve varying levels of success. Two recent randomized, sham-controlled trial of acupuncture in fibromyalgia showed no difference between the efficacy in active treatment and sham groups.30,31 There is some evidence that the use of alternative therapies give patients a greater sense of control over their illness. In instances where this sense of control is accompanied by an improved clinical state, the decision to use these therapies is between physicians and patients themselves.SUMMARYChronic pain and fatigue syndromes such as fibromyalgia represent a part of a clinical spectrum of overlapping disorders that afflict a significant portion of the general proportion. Data suggest that there is a familial tendency to develop these disorders, and that exposure to physical, emotional, or environmental stressors' may trigger the initiation of symptoms. Once the illness develops, the majority of the symptoms are likely mediated by central nervous system mechanisms.Management strategies are similar to other chronic illnesses, where empathetic health care providers should develop a partnership with their patients. At one end of the continuum, there are some individuals with fibromyalgia that respond to a single medication or a graded, low-impact exercise program. At the other end of the continuum is the tertiary care patient with high levels of distress who has no sense of control of their illness, little social support, and has looked toward disability and compensation systems to try to solve their problem. For this individual, and many in between, multimodal programs that integrate nonpharmacological (especially exercise, CBT) and pharmacological therapies are required.REFERENCES1. Wolfe F, Symthe HA, Yunus MB, et al. The American college of rheumatology 1990 criteria for the classification of fibromyalgia. Report of the Multicenter Criteria Committee. Arthritis Rheum. 1990;33:160-172.[Medline Link] [CrossRef] [Context Link]2. Wolfe F. The relation between tender points and fibromyalgia symptom variables: evidence that fibromyalgia is not a discrete disorder in the clinic. Ann Rheum Dis. 1997;56:268-271.[Fulltext Link] [Medline Link] [Context Link]3. Petzke F, Gracely RH, Park KM, et al. What do tender points measure? 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Widespread pain in fibromyalgia is related to a deficit of endogenous pain inhibition. Pain 2005;114:295-302.[Medline Link] [CrossRef] [Context Link]14. Gracely RH, Petzke F, Wolf JM, et al. Functional magnetic resonance imaging evidence of augmented pain processing in fibromyalgia. Arthritis Rheum. 2002;46:1333-1343.[Medline Link] [CrossRef] [Context Link]15. Giesecke T, Gracely RH, Williams DA, et al. The relationship between depression, clinical pain, and experimental pain in a chronic pain cohort. Arthritis Rheum. 2005;52:1577-1584.[Medline Link] [CrossRef] [Context Link]16. Arnold LM, Lu Y, Crofford LJ, et al. A double-blind, multicenter trial comparing duloxetine with placebo in the treatment of fibromyalgia patients with or without major depressive disorder. Arthritis Rheum. 2004;50:2974-2984.[Medline Link] [CrossRef] [Context Link]17. Gracely RH, Geisser ME, Giesecke T, et al. Pain catastrophizing and neural responses to pain among persons with fibromyalgia. Brain. 2004;127:835-843.[Fulltext Link] [Medline Link] [CrossRef] [Context Link]18. Giesecke T, Gracely RH, Grant MA, et al. Evidence of augmented central pain processing in idiopathic chronic low back pain. Arthritis Rheum. 2004;50:613-623.[Medline Link] [CrossRef] [Context Link]19. Goldenberg DL, Burckhardt C, Crofford L. Management of fibromyalgia syndrome. JAMA. 2004;292:2388-2395.[Medline Link] [CrossRef] [Context Link]20. White KP, Nielson WR, Harth M, et al. Does the label fibromyalgia alter health status, function, and health service utilization? A prospective, within-group comparison in a community cohort of adults with chronic widespread pain. Arthritis Rheum. 2002;47:260-265.[Medline Link] [CrossRef] [Context Link]21. Arnold LM, Keck PEJ, Welge JA. Antidepressant treatment of fibromyalgia. A meta-analysis and review. Psychosomatics. 2000;41:104-113.[Medline Link] [CrossRef] [Context Link]22. Fishbain D. Evidence-based data on pain relief with antidepressants. Ann Med. 2000;32:305-316.[Medline Link] [Context Link]23. Gendreau RM, Thorn MD, Gendreau JF, et al. The efficacy of milnacipran in fibromyalgia. J Rheumatol. 2005;10:1975-1985.[Medline Link] [Context Link]24. Crofford LJ, Rowbotham MC, Mease PJ, et al. Pregabalin for the treatment of fibromyalgia syndrome: results of a randomized, double-blind, placebo-controlled trial. Arthritis Rheum. 2005;52:1264-1273.[Medline Link] [CrossRef] [Context Link]25. Scharf MB, Baumann M, Berkowitz DV. The effects of sodium oxybate on clinical symptoms and sleep patterns in patients with fibromyalgia. J. Rheumatol. 2003:30:1070-1074.[Medline Link] [Context Link]26. Holman AJ, Myers RR. A randomized, double-blind, placebo-controlled trial of pramipexole, a dopamine agonist, in patients with fibromyalgia receiving concomitant medications. Arthritis Rheum. 2005;52:2495-2505.[Medline Link] [CrossRef] [Context Link]27. Russell J, Michalek JE, Xiao Y, et al. Therapy with a central alpha-2 adrenergic agonist [tizanidine] decreases cerebrospinal fluid substance p, and may reduce serum hyaluronic acid as it improves the clinical symptoms of the fibromyalgia syndrome. Arthritis Rheum. 2002;46(9 suppl):S614.[Context Link]28. Bennett RM, Kamin M, Karim R, et al. Tramadol and acetaminophen combination tablets in the treatment of fibromyalgia pain: a double-blind, randomized, placebo-controlled study. Am. J. Med. 2003;114:537-545.[Medline Link] [CrossRef] [Context Link]29. Williams DA, Cary MA, Gronerr KH, et al. Improving physical functional status in patients with fibromyalgia: a brief cognitive behavioral intervention. J. Rheumatol. 2002;29:1280-1286.[Medline Link] [Context Link]30. Harris RE, Tian X, Williams DA, et al. The treatment of fibromyalgia with acupuncture: effects of needle placement, needle stimulation, and dose. Arthritis Rheum. 2003;48(Suppl 9):1811.[Context Link]31. Assefi NP, Sherman KJ, Jacobsen C, et al. A randomized clinical trial of acupuncture compared with sham acupuncture in fibromyalgia. Ann Intern Med. 2005;143:10-19.[Medline Link] [Context Link]© 2007 Lippincott Williams & Wilkins, Inc.

Dairy-free = Pain-free (for me)

2007-04-01T11:29:00.000-04:00

Well, folks, I have been dairy-free for one week. I have not had to take even one Motrin. (After three years of eating the stuff like candy!) Bloating is pretty much gone, and I've lost three pounds. I no longer look four months pregnant, but I've still got a ways to go!

Before I go any further: may I remind you I am not a doctor, not a medical professional. I'm just a person who has been suffering in excruciating, widespread muscle pain, mental incapacitation and bone-crushing fatigue for three years, with no diagnosis and hardly anyone believing my symptoms.

Since going dairy-free, I have more energy than I've had since all this started in 2004. I've been able to walk the dogs, do housework, write, and go to work. Instead of having to pick just one activity, I can once again do them all. I can drive my car without feeling like I'm going to fall asleep. I can handle the stresses at work and at home with relative ease, instead of falling into a funk and wanting to "drop out".

But the best part is the absence of pain. For the first time in three years, I have hardly any muscle or joint pain. There is the ever-present shoulder/neck thing, but I've had that for so long, I doubt it has ever had anything to do with this mysterious thing that overtook me in 2004, and for which not one doctor has provided a diagnosis. I have an occasional twinge in a knee, wrist, fingers or lower back. Sometimes it lasts an hour or so, but no longer wipes me out.

My sleep is still disordered, no matter what I do. But if I go back to sleep after lying awake in the night, I feel well-rested enough to get on with my day when I do awaken. This was something impossible when all that lactic acid was rooting around in my system.

I remember describing to a couple of different doctors that I felt as though something was literally coursing through my veins and blood. I described it as a feeling of electrical current, or some foreign substance running through my veins. It would sizzle and burn. The sizzling would root around system-wide for a while, and then land in one spot -- generally my lower back right where the two FM "tender points" are located just above the hip bones in the lumbar area. But it would "land" or "settle" in other places, too. Many times the lower abdomen, so that I felt as though I had menstrual cramps. My neck and shoulders, always. My jaw, knees, wrists, ankles, feet and hands. After the sizzle-burn settled in one (or multiple) spots, it would last hours and hours. Of course, the more dairy foods I consumed (and I consumed a lot), the longer it would last. I didn't know this at the time, but looking back it all makes perfect and absolute sense. The dairy consumption was creating an over-abundance of lactic acid, which rumbled through my system producing widespread pain, digestive disturbances, brain fog and extreme exhaustion.

The more dairy I ate, the lengthier the pain episodes became, until they were daisy-chained together into a continuous life of pain, crushing exhaustion, debilitating cognitive problems and having to live in very close proximity to a bathroom at all times.

Not one doctor ever asked me what my diet was like. Not one!! Amazing.

Once I Googled "lactic acid+fibromyalgia" I found a ton of information on this topic. It is a known fact that fibromyalgics have an impaired ability to process lactic acid as compared to
non-fibromyalgics. There's a ton of information online about this. I just ignored it or overlooked it in the past, not really knowing what lactic acid was, or that it might be produced by consuming excessive amounts of dairy products.

Now comes the "I'm pissed off" part of the essay: Most fibromyalgics are women. As we all know, women are constantly encouraged to consume dairy products to avoid osteoporosis. All the ads on TV and magazines for yogurt and milk tout the importance of eating dairy to maintain healthy bones, ladies. Some go so far as to suggest that eating one serving of dairy per day will result in weight loss! (Don't even get me started on those Boniva ads with Sally Field -- if I told you what happened to my mother as a result of taking Actonel every week, you'd steer clear of that shit like it was poison!)

Ladies, I caution every one of you. If you suspect you have FM, or have been diagnosed with FM (or even CFS), keep a journal of what you're eating. Are you eating a lot of dairy? What happens to you after you eat dairy products? Do you feel listless and in pain within the next couple of hours? Do you get gas and bloating? If you do, then consumption of dairy products could be contributing to or exacerbating your fibromyalgia. (Footnote: the same could be true of wheat products -- don't think that only pet foods have wheat gluten -- just about every processed food we Americans eat is made with wheat gluten or milk! Do your homework!)

Let us not forget that FM and CFS symptoms exacerbate after exertion. For me, this happens after both physical and/or mental (emotional) exertion of any kind. The slightest exertion, and I am down for the count. Lactic acid is a substance that builds up in the muscles after exertion. It is most common in athletes, say marathoners for example, who "feel the burn" in their muscles, and may feel that burn for a day or two after exercise. Sound familiar? If you have FM or CFS, you know that if you exercise you pay the price for days afterwards. But what about cutting back on dairy? Could that help? Well, it did for me. That's all I'm saying. I don't recommend this for everyone, but it worked FOR ME.

For me, I am swearing off dairy for good. I take calcium supplements, and I exercise (and I am able to exercise again!!), so the worry about osteoporosis is not so great as to risk feeling like crap every day of my life. I don't recommend this to everyone. I know that I was over-consuming dairy. It was my favorite food. Too much of anything is not good for anyone. Because I have been a lacto-ovo vegetarian since 1980, my main source of protein has been CHEESE. I put cheese on everything. I ate cheese with yogurt. Heck, I even ate cheese with cheese! Milk? I was not so hot on milk, except that I did put it in my coffee every morning. I now order my Dunkin' Donuts black, and use soy milk at home (which I've always done anyway -- the soy milk, I mean). It's been tricky deciding what to put on my pasta, but I love a challenge in the kitchen, and I'm pretty good at working with what I've got when it comes to culinary creativity. Some of my best meals were created using whatever I had on-hand at the time.

I will not say that I am cured. I have all 18 of the "tender points" consistent with fibromyalgia. It's too bad that the day I went to a rheumatologist to be evaluated for the tender points was a "good day" and I only had four that were tender enough to count. But, she also didn't press hard enough to blanch her fingernail (which is what they're supposed to do), so the jury is still out on that topic. I have also started taking MSM and glucosamine. I started that about a week before swearing off dairy, so I think the combo of all of these has produced a veritable "cure". I'll take it, no matter how temporary it is. I feel alive again for the first time in years.

To think that I was focusing on early retirement due to illness, trying desperately to get a doctor to diagnose me so that people around me would believe me when I told them I felt sick every day. And to think it was all just because of my favorite food.

I remember when I stopped drinking diet soda, I started calling it "evil." Well, I will not call cheese and yogurt "evil" -- they've been treasured friends my whole life. But what I will say is that the media and health industry's insistence that adult women consume dairy so as to protect our fragile, brittle bone health may be a crock of shit. Between that and the pet food recall and other such things, we should all BEWARE of the bullshit we are being fed (psychologically) by these outlets. Watch out for yourselves, don't mindlessly believe everything you hear. Consumption of dairy products could be the "mysterious" cause of fibromyalgia. Oh, they say, "No one knows what causes it." Well of course not! If it could be caused by dairy products, then the dairy industry would go sour.

Don't be so sure they "don't know" what causes it. I think I may have a pretty good idea.

Love and peace to you all.

K2

I Eat a LOT of Cheese, and Crackers

2007-03-25T10:03:00.000-04:00

As we know, I have never been diagnosed with anything resembling chronic fatigue syndrome, fibromyalgia, or any of the other suspected syndromes or conditions that have been afflicting me for the past three or four years.

On Friday, I was down for the count again with severe menstrual cramps, diarrhea, vomiting and violent muscle spasms so intense I considered calling 9-1-1. Were it not for the fact that I was totally alone, no one to help, and two big dogs who would probably escape the house when the ambulance arrived, I would have dialed. But the phone was over there, on its cradle, and I was over there, on the bathroom floor, sweating and freezing at the same time, testing myself for stroke (since the whole left side of my body went numb and pins and needles). My sense of smell so acute, I thought our propane gas supply was running low, and could smell the bathroom cleaner bottles through the closed bathroom cabinet.

The whole episode lasted exactly one hour, and occurred shortly after I had a cup of coffee with milk in it, and a few spoonfuls of plain yogurt. The night before, I had had pasta with red sauce.

I didn't eat much that day, but before I took my anti-depressant at bed time, I had some cheese and crackers. Thus, all I ate all day was coffee with milk, yogurt, a piece of bread with peanut butter, and the largest "meal" of the day: "cheese and crackers". I had the cheese and crackers approximately two hours before bed time, and took my pill about an hour after eating.

I awakened three hours later with intense muscle spasms, diarrhea, and severe pain in the abdomen. Again, this lasted approximately one-to-two hours, at which time I was able to go back to sleep, having taken some Motrin.

About two weeks ago, I called the doctor once again, disgusted that no matter what I did, I continued to have chronic, widespread muscle pain and irritable bowel symptoms. I asked for a stronger pain killer, and she prescribed Vicodin. Something I don't want to take, and haven't taken yet. I have also been having migraines a lot.

Friday, I started thinking about what I ate, and realized that, because of my semi-vegetarian state, I tend to eat a lot of cheese as my main source of protein. I eat a lot of wheat bread, whole wheat crackers, pasta. I also take calcium supplements. Since these have to be taken with food, and most of the time I have cheese at almost every meal, voila! I am probably afflicted with lactose and/or gluten intolerance. I started wondering, does lactose and/or gluten intolerance produce other symptoms other than digestive ones, such as: skin problems, muscle and joint pain, fatigue, headaches, numbness and tingling of extremeties, indescribable fatigue and lack of stamina, constant runny nose, anemia, easy bruising?

Guess what? Bingo! A thorough search on Google produced many, many articles confirming that lactose intolerance does produce those very symptoms. Here is a quote from just one article that I found on lactose intolerance:

"What are the signs of lactose intolerance?As soon as the production of the lactose-converting enzyme, lactase, falls below a critical threshold, a noticeable intolerance results. The reduced lactase production leads to the fermentation of unconverted lactose in the lower parts of the intestine. In this case, intestinal bacteria degrade lactose into lactic and acetic acid as well as carbon dioxide, methane and hydrogen. This results in the increased influx of water into the intestine and an increase in intestinal movements. The generated gases bloat the abdomen, are able to permeate the intestinal wall and reach the blood stream, leading to the gradual over-acidification of the entire organism. Some typical discomforts accompanying lactose intolerance include:- gastro-intestinal problems such as: abdominal fullness, bloating, nausea, diarrhoea, abdominal colic and vomiting.- side effects such as: dry mucous membranes, headache, joint pain and eating disorders.- but also: skin problems, chronic fatigue and depression. Usually, these problems disappear as soon as milk products and lactose-containing food items are avoided."

On gluten intolerance, here's what I found:

A partial listing of non-intestinal symptoms:
Anemia (low blood count)
Bone and joint pain
Bone disease (osteoporosis, kyphoscoliosis, fracture)
Breathlessness (due to anemia)
Bruising easily
Dental enamel defects and discoloration
Depression
Fatigue
Growth delay in children
Hair loss
Hypoglycemia (low blood sugar)
Irritability and behavioral changes
Malnutrition
Mouth ulcers
Muscle cramps
Nosebleed
Seizures
Short stature, unexplained
Skin disorders (dermatitis herpetiformis)
Swelling, general or abdominal
Vitamin or mineral deficiency, single or multiple nutrient (for example, iron, folate, vitamin K)

I also read that people are often misdiagnosed as having "nothing wrong with" them, "it's all in your head", "you are depressed". When, in fact, they are lactose intolerant or wheat gluten intolerant. Or both.

Cripe! If that's all that has been going on with me all this time, I am inclined to sue someone. How unfair of these doctors not to suggest a food intolerance, or even ask what I am eating. I am totally disgusted.

Shopping bag injuries

2007-03-10T23:44:00.000-05:00

How is it possible that the mere act of lifting a grocery bag can result in a days-long, or even months-long muscle or joint injury? It's called myofascial pain -- trigger points in one muscle can cause pain in another. Just moving the wrong way, even several days before the pain is felt, can result in this.

I had a guest staying in our cottage this week, and had bought her some staple groceries, such as milk, bread, butter, coffee. When she left this morning, I decided I'd go retrieve the stuff, saving me a trip to the grocery store, since I'd very inconveniently run out of milk and had resorted to mixing vanilla ice cream into my coffee! I gathered up all the items in a paper grocery bag with handles, the kind you'd get at Trader Joe's. In fact, that's exactly where the bag, and the groceries, came from. Carefully, I packed the paper bag, and carried it in one hand down at my side. In the other hand I carried a half-gallon of OJ. On the way back to my house, walking slowly to avoid slipping on the melting ice, I picked up one of the dogs' toys and carried it in the same hand as the paper bag. Arriving in the kitchen at home, I very carefully hoisted the bag up onto the counter, and wham! promptly threw my back out. Now, when this happens to me, it always happens in the same spot. Oh no, not the lower back, like most people. This is the upper back, just between the shoulder blades. The pain is excruciating, and literally takes my breath away. Afterwards, I am down for the count. If I'm lucky, the pain will last hours, but I'm usually not so lucky, and it will last days.

This afternoon, I re-typed and posted a story on my web site, and dredged up a comment or two about a wrist injury I sustained early on in my fibromyalgia experience. The wrist was injured when I hoisted a six-pack of bottled water into the hatchback of my Subaru in a hasty maneuver, designed to hurry me into the car. I paid for that hasty move for months after, the aching wrist a constant reminder -- the regrettable souvenir (along with an unresolved credit card bill) of a weekend getaway that went bad. Read about it if you wish at www.k2k9.com/song/ptown.cfm

I've been doing a lot of reading about chronic myofascial pain lately. And, of course, with all the various injuries I've sustained in car accidents and minor spills walking the hounds, sitting at my desk for hours on end, or watching TV curled up on the couch, I know my posture and musculoskeletal system is completely out of whack. A few years back, at the onset of my chronic pain, I went to a doctor of osteopathy once a week for about six months. She'd do "adjustments" to my body, in much the same way as a chiropractor, minus the cracking. It would do me good, but a week later, I'd be out of sync again. The osteopath told me that my hips were twisted -- one higher than the other, and one in front of the other. She would readjust them periodically, and I would even have a different gait afterwards. Eventually, they'd fall back into their twisted place, only to have to be adjusted again. She did the same for my neck, a useless cause since it was so badly injured in the infamous 1980 car crash. The osteopath prescribed yoga, which I still practice as often as possible. It helps because it forces me to align my spine correctly, something I previously had no clue how to do. "Shoulders down!" I'm constantly telling myself!

Earlier this week, I broke down and called my PCP and requested pain medication. I didn't want to do this, and have been putting it off for years. In fact, I filled the prescription (Vicodin) but still have not taken any, even with this horrific pain in my back. I'm scared to take it because of my body's over-reaction to drugs in general, and the fact that I am a recovering alchy and shouldn't take narcotic drugs to begin with. My fear holds me back from getting pain relief. But I have it there, just in case.

Another thing I got this week, while I was waiting for the doctor to get back to me was some MSM I picked up at the health food store. I remember giving Timba MSM when she was about 14 years old. At that point, Timba was in agony and pain constantly, and was basically unable to move at all. She could no longer take walks with me, and I had to pick her up to put her into the car. A co-worker who is also a horse handler brought in a big plastic tub of MSM and told me to sprinkle the powdered substance on Timba's food. This resulted, eventually, in Timba being able to actually run again -- and I truly believe added four years to her life, bringing her to the ripe, old age of 18. The only drawback was a urinary incontinence, apparently brought on by the MSM.

I had stopped at the health food store this week on a whim. Not knowing really what I would buy, if anything, I happened to see MSM on the shelf. I remembered Timba's situation, and bought a bottle of MSM tablets immediately. It will take a while to see results, which haven't occurred yet.

Being an Intuitive Empath

2007-02-28T09:34:00.001-05:00

Here is a very interesting piece on being an intuitive empath: i.e., a person who empathetically intuits other people's feelings, energies, problems, and moods. This is something that happens to me, only I was never able to put it into words. The author suggests that some people develop FM/CFS as a result of being sucked down by this process.

http://www.drweil.com/drw/u/id/ART02754

Looking For A Patient-Recommended Doctor?

2007-02-28T09:27:00.000-05:00

LOOKING FOR A PATIENT RECOMMENDED DOCTOR?

Contact Betsy at Kindness@fibrobetsy.com. Her service is unique, because she recommends only patient recommended, fibro-friendly doctors.
Tell Betsy exactly where you live, and if yours is a small town, DO give her the names of larger cities or towns nearby. She'll not only only send you a list of doctors in your area, but she'll also send a bunch of FM info including a short resource list, a treatment modality list, comments about FM from major FM doctors, and a list of coping strategies.
Betsy welcomes names of doctors, but only from their satisfied patients. She doesn't take self referrals or 2nd hand recommendations. They have to come from the "horse's mouth." Give her the name of the doctor, her/his degree, her/his city & state and phone #. Any comments about the doctor would also be helpful.
She's been doing this since 1991, and she looks forward to helping you!

Another good, but short, article

2007-02-20T09:32:00.000-05:00

http://www.wcsh6.com/news/article.aspx?storyid=52697

Two Recent Articles: One on FM one on CFS

2007-02-17T09:01:00.000-05:00

Here is an article on fibromyalgia, where the wonderful Dr. Daniel Clauw is interviewed:

http://fmsglobalnews.wordpress.com

And this is an article about a study on Chronic Fatigue Syndrome. It turns out there is a celebrity willing to talk about this condition: Laura Hillenbrand, the woman who wrote the book "Seabiscuit":

http://tinyurl.com/24xb5z

We need to get the word out there on these insidious conditions, people. It is possible that one in 25 humans may have fibromyalgia, and more than one million Americans have chronic fatigue syndrome, according to CDC estimates.

People in your life, every day, could be Walking Woundeds. We are terribly misunderstood and in many cases not believed.

Walking Woundeds "look fine", but they are in constant pain and utter physical exhaustion.

While there may not be a cure, or a definitive cause, for either of these conditions, those who live with these syndromes need compassion, support and recognition.

It seems that finally the media and government may agree with the Walking Woundeds: it is not all in our heads.

Chronic Fatigue Syndrome defined -- a video

2007-02-15T09:47:00.000-05:00

You can watch a free video about M.E. / Chronic Fatigue Syndrome here...

Dreaming and Cleaning

2007-02-12T10:00:00.000-05:00

My doctor said it'd take a couple of weeks of a higher dosage of Trazodone before I saw results with my sleep. It's been three nights now, and I have actually had dreams. Prior to this, I cannot recall the last time I had a dream. This means I have arrived into stage 5 sleep.

Now, I wonder how long I will have to keep taking Trazodone.

After we had the stove delivered and installed on Friday, I decided to spend Saturday shopping for new kitchen gadgets, pots and pans.

Rearranged the whole kitchen on Sunday, and then proceeded to clean the whole downstairs of the house. There was dust and crap, especially in the bedroom, that hadn't been cleaned in the three years since this pain and fatigue condition afflicted me. I crawled around on my hands and knees with the vacuum hose, sucking up dust bunnies and assorted pieces of paper and things. There were objects that had fallen behind furniture that we just hadn't bothered to pick up at all.

One might say this was a sign of depression. Perhaps it is. I am now wondering if I'm bi-polar or something, having spent the weekend on high-energy for the first time in years. Seeing the neglect of the house, coupled with this surge of energy, and going on a shopping spree, it has me curious.

But then again, having three good nights of sleep... it may be a simple as that.

During the cleaning process, I did something new. I have always been a person-in-a-hurry, rushing through tasks at high speed, becoming breathless. This time, I paced myself. Vacuumed a little bit, then watched TV for a while. Sorted laundry, then rested on the freshly-made bed for a bit. Stuff like that. I managed to get it all done. I got fatigued as I usually do around 3:00 on Sunday afternoon. I usually take a nap on Sundays, and so I did for about 20 minutes.

By the time dinner time rolled around, I was in a good amount of pain but not too, too bad. I took a couple of Motrins and it went away. This is truly remarkable. This morning, I have good energy.

I have still not taken the dogs for a walk or gone swimming at the gym.

I have definitively decided to quit the big online support group I belong to. It is taking up way too much of time, and with busy season starting at work I need to spend my time more productively. I posted a notice saying I was leaving, and not one person responded to with me well. Many other members have left, and they always get tons of responses. Well, I have stirred up some controversy over there, and with the creation of this blog and it's first couple of postings, so it doesn't surprise me that I won't be terribly missed. I like the smaller groups, and will remain a member of those.

Re-naming Chronic Fatigue Syndrome

2007-02-05T09:55:00.000-05:00

This was sent to me at at online support group:

New Name for Chronic Fatigue Syndrome~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~An announcement from ProHealth Founder Rich Carson:The CFS Name Change Advisory Board - whose combinedresearch and clinical experience totals more than 150 years -met in Florida January 12, and reached a consensus agreementthat a new name should be adopted for Chronic FatigueSyndrome. While it is certain that no name will please allpatients, the group feels that the new name they propose willimprove the legitimacy of the disease, and remove the stigma ofhaving a disease with 'fatigue' as the primary descriptor. Theirreport follows.A group of noted CFS researchers and clinicians met January12 in Florida to discuss whether 'Chronic Fatigue Syndrome'was an appropriate name for the disease, and to suggest analternative name if necessary. Patients and CFS clinicians havelong held that 'chronic fatigue syndrome' trivializes the seriousnature of the disorder, and have called for a change of the namefirst adopted by the CDC in 1988.The impetus for assembling the group was the belief that a panelof the world's leading experts could provide legitimacy andscientific credibility to patients seeking a new name.The committee, called "the CFS Name Change Advisory Board"by its organizer, CFS patient Rich Carson, included Drs.Lucinda Bateman, David Bell, Paul Cheney, Charles Lapp,Nancy Klimas, Anthony Komaroff, Leonard Jason, and DanielPeterson. Dr. Peterson was unable to attend the meeting, butwas consulted via telephone afterward.Committee members agreed that CFS downplays the severity ofthe disease and is hurtful to patients, and discussion focused onalternative names. The majority of attention was spentdiscussing 'ME' - the name first used to describe the illness in aneditorial published in The Lancet in 1956 by Sir DonaldAcheson, MD. 'ME' has been used in many countries, includingGreat Britain.'ME' has historically been used to describe 'MyalgicEncephalomyelitis' (nervous system inflammation involvingmuscle pain) - a term that does not accurately describe thedisease process in all patients. Committee members preferred'Myalgic Encephalopathy' (nervous system pathology withassociated muscle pain), which is also abbreviated 'ME'. Thissatisfied the researchers that this form of the term 'ME' isdiagnostically accurate.Recent scientific advances point to the usefulness of the MElabel, as brain pathology with often painful consequences,especially in muscle, is increasingly documented in patients withthis condition.The group recognized that dropping CFS completely from a newname could cause problems with disability and medicalinsurance claims, and recommended that 'CFS' shouldaccompany any new name, at least for a period of time. It wasacknowledged that CFS currently has some name recognition,though according to the CDC, less than 20 percent of thepatients have been diagnosed.The researchers expressed their belief that the term 'ME/CFS'(or 'CFS/ME') is diagnostically accurate and, unlike CFS, is notpejorative to patients. It was also noted that this move isconsistent with events occurring in different countries, such asCanada, where 'CFS' was recently changed to 'ME/CFS'.In a recent related event, the board of directors of theInternational Association for CFS (IACFS) voted to recommendthat the name of that organization be changed to the IACFS/ME.This motion is currently being voted on by its members, and ifapproved, the name of that organization will soon be changed.

Wish I had written this!

2007-02-02T19:23:00.000-05:00

(Note* This was a forward sent to me by a fellow fibromite. If you
know anyone with this syndrome you might want to read this. If you have
this syndrome yourself you might want to print this out and give it to
everyone you know who thinks you're just lazy, etc. Fibromyalgia is real and I
wouldn't wish it on anyone.)

1. FMS is not the newest fad disease. In fact, it isn't a disease at all, and it isn't even new. In 1815, a surgeon at the University of Edenburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together.

Rheumatoid arthritis and lupus are also syndromes.

2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. In 1987 the American Medical Association recognized FMS as a true physical illness and major cause of disability.

3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.

WHAT YOU SHOULD KNOW ABOUT ME

1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness - Those of us who suffer from it call it fibro fog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, and odors. FMS has been called the "aggravating everything disorder."

6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body that has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the Internet have many good books and articles on fibromyalgia.

Author's note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes...or their bodies. "

Good grief!

2007-02-01T20:09:00.000-05:00

I just spent a half hour lurking on one of the fibromyalgia groups I belong to. Good grief! I am thinking more and more of just quitting that group, and the "big" doggie group, too. They're just too big. People are always in-fighting, getting into disagreements and disputes, and repeating the same "advice" (meaning: advice disguised as non-advice so as not to piss off the moderators and their almighty rules) over and over and over again.

Now, let me say that I also belong to a number of smaller groups on the same host platform. These are offshoots of the bigger groups, many times formed by people who left the larger groups. I'm talking about both "doggie" groups and the various FM/CFS groups. The smaller groups are delightful, and I truly enjoy being there. There is never any in-fighting, rarely a misunderstanding, and even though we are virtual strangers there is a sense of friendship. It is the large groups (2,000 - 3,000 members) that I'm complaining about.

Sometimes FM/CFS patients are on so much medication, it just has to be exacerbating their pain and fatigue. I'm a proponent of alternative remedies, home remedies and as little medication as possible. I detest the pharmaceutical companies and their endless television commercials for the latest drug to "ask your doctor" about, followed by a laundry list of side-effects, most of which are also fibromyalgia symptoms! How the hell would you know the difference?! (My favorite is the addition of "death" as a side-effect, as the announcer rattles off his or her list, adding "death" at the end of the list, as if it's just another side-effect, no big deal... and like it's the period at the end of a sentence. A Death Sentence.)

Every prescription drug I've ever taken (and that's not many) has given me such horrendous side-effects, I simply don't know why anyone with a chronic nervous system disorder such as FM or CFS would take such powerful drugs. Many patients take multiple medications besides. Many people report that the drugs don't relieve their pain -- and so, I ask, what is the point of taking the drug then? If the person is in as much pain with the drug as I am without drugs, then why risk all of the side-effects and potential damage to organs, etc. etc.?

Perhaps we are not hearing from the fibromyalgia patients whose drugs ease their pain because they haven't had to join an online group to get help. But since little help is available in the "real" world due to the stigma attached to this invisible and deblitating condition, the online groups appear to be one of the few resources of information available, particularly for people who can't easily leave their houses or even so much as walk.

So, I'm at the Big Group, thinking these thoughts, just lurking, not posting (I hadn't gone there since Monday and there had to be over 1,000 messages) when all of a sudden the message board comes up with "sorry we cannot process your request". Hah! I logged out, and back in again. Same thing! If that isn't a sign, I don't know what is. I'm thinking about dumping that group, and the large doggie group as well. It is so liberating to express myself here, and not have anyone telling me I've crossed a line or broken one of their rules.

But once I quit the group, then what will I write about here? lol

While reading all the postings from the last few days, I'm sitting there yelling (on the inside): "yoga!! drink more water! get extra sleep! listen to music! get off the medication! get on with your life!" (Someone said it to me in an email this morning: Life is too short.) I've seen this phenomenon before -- in AA. Group members would be "stuck" in their disease, not moving forward. Sober 15 years and still struggling with the fact that they want a drink. Similarly, someone diagnosed with FM, no medication is easing the pain, and yet they continue to take it, continue to stay up all night, and remain a member of the commiseration association and wonder why they're so uncomfortable and not getting better. (BTW, I was up all night Wednesday night in excruciating pain, so I am not trying to insult anyone -- I am right there with you.)

Since there is no cure for fibromyalgia or chronic fatigue syndrome, we need to learn to live with the syndromes as best we can, and stop dwelling on the negatives (the pain); stop making ourselves more tired and achy by clicking on a mouse, hunched over a computer for 60 minutes or more each day, increasing our pain because of our posture and ergonomically-incorrect seating and positioning, when we should be trying to feel better.

I have to qualify this by saying that when I first joined the large group, I had so many questions and problems, and everyone there was so helpful and compassionate. I learned a lot, and will be forever grateful, and know where to turn if I need help again. Just like AA -- I will never forget the help I got there all those years ago, and I continue to be a supporter of the AA program. I still "practice the AA principles in all my affairs", even though it's been years since I attended a meeting. But, as with AA, I prefer the smaller "meetings".

I'm not saying that I feel better. I don't. I'm in pain constantly, and a myriad of other symptoms not the least of which is annoying IBS which makes it impossible to eat meals outside of the home most days. What I'm saying is that this is the hand I've been dealt, and I need to live with it, work with it, change some of my lifestyle, the foods I eat, when I eat, how much I sleep, reduce stress, exercise,etc. and develop a positive outlook without making the drug manufacturers rich in the process.

Good grief and good night!

Short-lived Euphoria

2007-01-31T09:23:00.000-05:00

Well, that didn't last long. Worked 6 1/2 hours at the office yesterday without taking a break. I refer to going home as my second job. Lots of chores: taking the dogs outside, walking them if the weather is good, feeding the dogs, light housework, making dinner, and squinching newspapers to start a fire in the fireplace. By the time all of that happened, I was in intense pain, totally exhausted, a sore throat and feeling flu-ey.

Lifestyle changes are my new thing. As I said before, Mother Nature has forced this on me, and I think that's a good thing. It's "her" way of saying "Slow down!" So, where I would normally come home from the office, do all those things I have to do, and then work on the computer some more (either real work for my job or stuff on my web site, or playing around on the groups) I didn't do that last night. I sat on the couch with two blankets and two dogs, and watched TV.

At one point, about quarter of eleven, I dozed off, sitting up on the couch, with Hector in my lap.

(Here's Hector on the couch!)

After getting up and going to bed, I remarked to Gil there's something about that couch, I just go into la-la land. He said that was nice. All this time, I've thought he was worried about me sleeping on the couch. Well, he said no, if sleeping there works then do it. A few years ago, I had told him if I fall asleep on the couch, leave me there! Next time, I'm going to just fall asleep there and see what he does lol!

My goal for January was to get my sleep in order. I am a habitual goal-setter. I set small goals every day, and medium-sized goals for weeks, months, years. And, of course, lifetime goals -- most of those I've achieved. January's goal was to regulate my sleep. It's the 31st of January, and I haven't quite made it yet. After two decades of disordered sleep (that started LONG before my other FM/CFS symptoms), it's not going to be resolved in 30 days.

February's goal (more on that tomorrow!) will now include regulating my sleep. That will skate forward until it's achieved, if it ever is.

So, my euphoria that my friend noticed after my doctor's appointment lasted only a couple of days. This was the first time, ever, that I thought maybe I don't have FM or CFS, just like everybody's been saying. Maybe it went away. Well, it came back last night with a vengeance. This morning I'm groggy, my back hurts, I have a headache, and my stomach's doing flip-flops. So much for being cured!

Nevertheless, I will continue to move forward, think positive, look at this as an opportunity to relax, because Mother Nature is telling me to take it easy.

Encouragement from others

2007-01-30T09:01:00.000-05:00

It was my sweetie, Gil, who encouraged me to publish my collection of essays by creating a personal web site http://www.k2k9.com . Gil had come across some stuff I'd written many years ago, and had suggested that I start publishing some of it. At the time, I was also participating in some online groups about dog behavior, and I felt I was spending too much time doing that, and it had become almost like "work" instead of fun. The idea was borne, and we played around with the idea of k2k9.com as the web site's name. The domain was available, and so began my journalism journey.

Similarly, a few days ago, Joan, a wonderful lady whom I've known for many years, had been surfing k2k9.com and read my essay Walking Wounded (http://www.k2k9.com/song/walkingwounded.cfm ) Joan is a nurse, and knows about fibromyalgia. She sent me an email saying she had read my essay, and thought I might be well-suited to start an online support group for fibromyalgia sufferers.

Little did Joan know, that very morning, I had decided to "take a break from" the various online fibro/pain/fatigue groups that I belong to because, once again, I felt it was becoming a negative experience for me, rather than a positive one.

A few hours later, a new idea came to me, thanks to Joan's encouragement! I already have a blog on blogspot.com http://k2k9.blogspot.com , and have often needed to express myself on the topic of my chronic condition, but felt that the k2k9 blogspot was not the place do to so. The k2k9 blog is for sharing my daily dog escapades, photos of my family, and of course my beautiful grandson, Ben. Time and again, I had thought it inappropriate to post information about fibromyalgia and chronic fatigue on the k2k9 blog. But why not create a second blog, devoted exclusively to fibro and fatigue?! Without hesitation, I did just that.

Interestingly, during my search for a template, I found one called "harbor". The ocean is a big part of my life, and a place where I gain strength and spirituality. I happen to live near a well-known lighthouse when I vacation on Cape Cod. The lighthouse is also a symbol of strength and spirituality for me. Its presence reinforces those attributes and makes me feel grounded and safe, while literally providing a light at the end of the tunnel. Whenever I cruise up Ocean View Drive at the end of my journey to the Cape, I see the lighthouse and breathe a sigh of relief: "I am home."

When I chose the "harbor" template for this blog, I didn't really notice the lighthouse, I just liked the colors -- or lack thereof. It was only after I wrote and posted my "Welcome" message that I saw the faded lighthouse in the upper left corner, and the tiny lighthouse at the beginning of each posting. There are no coincidences, I always say. This was meant to be.

I tend to be a natural leader. I've always excelled at school and work, being promoted quickly, and leading others by my example. I observe how people at my workplace will follow my lead, on both negative topics and positive. I can really get people riled up if I want to, and I like taking charge. But I'm also a behind-the-scenes kinda gal. I prefer to be like the Wizard of Oz, running the show, making it look easy, seamless, effortless and invisible. Much like how I hide the fact that I have this debilitating condition. And so, I get frustrated on the online groups, having to follow others' rules, having to be so cautious, risking misunderstandings and disagreements. It's happened to me countless times on the groups. I go just one step too far, and create controversy in my wake. I've quit and returned to the groups over these incidents, more times than I care to remember.

Having my own blog, where I run the show, is the solution. This doesn't mean that I will abandon the groups where I have received so much help, information and support. The members of these groups are compassionate and kind, and even though we are strangers, some have also become like friends. I wouldn't turn my back on that. But my energy is more precious than ever, and my time is somewhat ill-spent dwelling on the symptoms and commiserating -- which is what I feel I have been doing.

I'm feeling a need to move forward, to live my life anyway, despite the fact that I'm in pain, uncomfortable and exhausted. Lifestyle changes have been forced upon me by Mother Nature. It is important to spend less time in negativity, and more time reinventing my life to accommodate this insidious, invisible, and annoying malady. When we watch movies, Gil always insists on "uplifting" ones. If the movie is not uplifting, he wants nothing to do with it. Life should be the same, shouldn't it?

The same day that Joan mentioned my leading an online support group, one of my employees (and a good friend), Kathi, came to visit me in my office at the end of the day. Kathi happened to be the person who set me up with my new physician, a woman she'd been seeing for several years, and whom she highly recommended. My colleague remarked that she had noticed an incredible transformation in me since my most recent doctor's appointment last week, and she wanted me to know that she noticed. I explained that, thanks to her, I had found a doctor who a) believes me; b) took time to explain my symptoms and their cause; c) validated my condition; d) never suggested for a second that I am depressed or mentally ill; and e) provided the correct dosages of medication for my specific case. My friend and I talked for a while, and once again I felt encouraged by her support.

It is encouragement from others that has led me on this avocational adventure of creativity, recovery, research and exploration... and I am truly grateful to them for their support.

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