Chronic Lyme Disease Summit 2

Walking Wounded

Over the years, I've made a routine of traveling in the winter, first to Europe for our company's annual "yuletide" convention, followed closely by a two-or-three week trip to the unspoiled Caribbean island of Tobago. During these trips, I have had a strong susceptibility to catching horrific colds that almost feel like a foreign virus has overtaken my body. These travel-related episodes have become an inside-joke between me and my traveling companions: K2 always gets sick when she travels!

It will come as a surprise to some when I tell you that I am plagued with a chronic disorder called fibromyalgia. I hide it well, and try not to "lay it on people" if at all possible. I hear "You look fine," or a host of other very typical comments including "It's peri-menopause," "you're depressed," and "you're just doing too much," among others, when I try to explain fibromyalgia to most people, so up until now I've chosen to just keep this information relatively private.

Fibromyalgia is a condition so closely resembling Chronic Fatigue Syndrome that many physicians are beginning to consider the two disorders as one. It is extremely difficult, and at times impossible, to be diagnosed with fibromyalgia or chronic fatigue syndrome. The two conditions are very similar to many other illnesses such as lupus, multiple sclerosis and Lyme disease. Oftentimes a patient is mis-diagnosed with one, only to discover that they've really "got" another of these "great imitator" illnesses. Some doctors err on the side of caution, and refuse to make the diagnosis altogether. This has been my unfortunate and very frustrating, personal experience.

My goal in writing and posting this piece to my web site is to educate and bring awareness to anyone who may be unaware of, or may misunderstand, this pervasive and annoying conundrum which affects hundreds of thousands of people -- many of them right under your nose.

Before I continue, here's where I insert the disclaimer. I'm not a doctor, I'm not a professional medical person. I am a person afflicted with a chronic disorder, and I have done a ton of personal research on Fibromyalgia, Chronic Fatigue Syndrome, Lupus (SLE), Multiple Sclerosis and Lyme Disease. None of the information posted here is intended to diagnose or treat any of these conditions or illnesses. If you suspect that you or someone you love has one of these disorders or diseases, please consult a medical professional.

Personally, my experience with fibromyalgia can be summed up with the phrase, "I am the Walking Wounded." The condition affects my life every moment of every day. Mainly, I am in chronic pain and I live with a constant and indescribable tiredness almost like a "burnt-out" feeling that comes over me in waves, as well as countless other symptoms such as chronic fatigue, muscle pain, unrefreshing sleep, cognitive dysfunction, mixing-up words while speaking or typing, dyslexia, brain fog, malaise (particularly following exertion), a chronic flu-like feeling without fever, lack of stamina, chronic sore throats, difficulty swallowing, dizziness and balance problems (particularly upon standing from a seated position), strange sensations of tingling or the feeling of an electrical current traveling up my spine and throughout my body, joint pain without swelling or redness, numbness and tingling of the fingers and feet, shortness of breath, painful and tender lymph nodes, irritable bowel, ear itch, TMJ, sensitivity to odors and noise, extreme sensitivity to drugs and chemicals, anxiety, mild panic attacks, occasional mild sleep apnea, jaw pain, earache, headache, unexplained weight gain, bloating, gas and swelling of fingers.

I go to work every day, and still sometimes work 10-12 hours a day, 7 days a week. My vacations are always "working vacations". In nearly 30 years of working professionally, I have rarely, if ever, missed work due to illness. I am an energetic, goal-oriented, high-achiever known for having an extraordinary memory and I'm told I'm quite the comedienne. I take care of my household pretty much single-handedly, and I try to take care of my boyfriend, and pitch in with my elderly Mom whenever I have the time. I have a small group of very close girl-friends whom I've known my whole life, with whom I try to spend as much time as possible, despite long-distance separations and differing lifestyles. I own two dogs who are the light-of-my-life (see my web site http://www.k2k9.com or my blog http://k2k9.blogspot.com for more info on that topic), and they keep me going when it sometimes seems easier to just "veg out".

To help make sure my condition doesn't overtake my life, I walk my dogs every day and try to stay active physically and socially. Some days it is harder than others, but most of the time I make a good go of it. I always try to look presentable, which is difficult since I've gained over 20 pounds since the flare-up that began in 2004, and I can't dye my hair because of the chemicals. I can't wear jeans most of the time because of my stomach problems, so I have to wear sweatpants or elastic-waisted pants. I can't wear dresses because I'm always freezing to death, or I have bruises on my legs. My rings either don't fit because of my swollen fingers, or jewelry just feels icky and I can't tolerate wearing it.

Social obligations are tricky, and become more anxiety-producing as my symptoms become more chronic. For example, it is hard to make advance plans of any kind because I never know how I'm going to be feeling on any given day, and sometimes even moment-to-moment. Just thinking about this produces anxiety, and then it becomes a vicious cycle. Every time I have a social engagement, I look at it as something I have to "contend with" -- and 99% of the time I consider canceling out of the event altogether. In the end, I always wind up attending the event, but under great duress.

Nevertheless, I always do what my Mom told me: wear a smile! Some of my difficulties have caused me great embarrassment, like the time I was in such a brain-fog I almost drove through my own garage door because I forgot to open it before backing the car out of the garage! A lot of times, the digestive problems get me, or IBS as it is called. Having to run to a bathroom constantly is difficult if your friends want you to join them for lunch or dinner. I've had to leave the room mid-sentence at business meetings -- talk about embarrassing! I try to see the humor in the situation, perhaps not while it's happening, but certainly afterwards. It makes good fodder for the keyboard.

But some fibromyalgia sufferers are not as lucky as me. While the disorder is purported to be non-progressive, many people with fibromyalgia are disabled, unable to work due to physical pain and debilitating fatigue, among other things.

Some of my symptoms have been present for my whole life. As far back as 10 years of age, I can remember having chronic migraine headaches, fainting spells and painful menstrual periods with severe cramping, fainting and delirium.* As a result of a car crash in 1980, I dislocated my jaw and had severe whiplash. After that, I have always had severe muscle pain in my neck and shoulder on the right side, as well as lower back pain, jaw pain, knee pain and hip pain.

*My girl friends will remember the time when we were 14 years old, and my period hit me while we were having lunch at the Burger King. I went into the bathroom of the BK, passed out on the floor and crying in horrible pain from "cramps". The manager of the BK saw me in there and told my friends she thought I was on heroin!

The unexplained fatigue began, and the widespread pain syndromes escalated, following two overseas trips which occurred in December 2003 and February 2004.
The first trip, to Ireland, had to be cut short due to irritable bowel difficulties and the time zone change wreaking havoc with my internal clock. My flight home to Boston was memorable, as I spent most of it in the lavatory.
Several weeks later, I traveled to the Caribbean where I spent a lot of time in the sun and ate food prepared by locals as well as swam in a hotel swimming pool. Gil made a video during that trip. The very last frame of that video is a shot of me, sitting in a chair at the sugar cane factory. IBS had flared up, and I was taking a moment hoping it would pass so I could enjoy our morning excursion. That moment, captured forever on video shows my face -- mouth drooping, looking depressed and uncomfortable. When I realized the camera was on me, I smiled. I laugh when I see that footage of me "putting on a good face for the camera." It about says it all.

Upon my return to Boston from that trip, I became ill with what I can only describe as "the worst cold I've ever had." Sinus and ear pain eventually migrated to a tooth, and I visited a dentist who determined (incorrectly, I would discover later) that I required a root canal. In preparation for the surgery, he prescribed the antibiotic Clindamycin, in large doses. Having never taken antibiotics in my entire lifetime, I did not know at the time that I was very sensitive to them. After taking two doses of the Clindamycin, I developed severe diarrhea and vomiting. In a period of 24 hours, I lost 9 pounds. I called the dentist, who was on vacation, and spoke with his emergency on-call replacement. That person, as well as the pharmacist at CVS, instructed me to stop the Clindamycin immediately. I was out of work for 6 days, and was ill for 21 days. (My version of being out of work for 6 days is to go to work for an hour or two, do the bare minimum, and return home. It's not possible, in my line of work, to stay home for 6 days.) Following this experience, I could not tolerate foods of any kind other than the "brat diet" for approximately 10 days. The root canal surgery was cancelled.

I have basically "never recovered" from this episode.

In the spring of 2004, I visited a new dentist, and it was determined that I suffer from TMJ and chronic muscle pain in the shoulders and lower back, due to the injuries suffered in that car crash back in 1980. There was no evidence that any of my teeth needed root canal surgery. Instead, it had been determined that I was grinding and clenching my teeth, as well as having blocked sinuses due to the severe head cold, and this had resulted in the tooth pain and severe earache and ear itching I was experiencing. I was fitted with a mouth guard which I wore while sleeping for approximately 18 months until I managed to train myself to stop clenching and grinding my teeth.

During the spring and summer of 2004, my symptoms were so unbearable that I was only able to work approximately 4 hours a day, was unable to go for my daily walks with my dogs or do any chores or housework without having to rest in between activities. Thinking I was not getting enough sunlight, I began sitting in the sun while my dogs swam in the lake, but each time I did so, I would become more and more fatigued. Each day, I would work at my office for an hour, go out to lunch, go back to work for two hours, and then try to sit in the sun with the dogs for an hour or two. Each of these activities increased the fatigue. But then, at about 6:00 pm, I would "rally" and have a burst of energy. I would use this time to try to "get everything done". These energy spurts would last until 11:00 pm or so. I would go to bed, and never get a good night's sleep -- having mysterious and unexplained multiple awakenings throughout the night. Each morning, I would wake up unrefreshed, in a complete fog, and would attempt to carry out my day totally debilitated. This "push-and-crash" syndrome is typical of people with fibromyalgia and CFS. In our attempts to get everything done on our "good" days, we pay the price the next day in spades, with the classic disordered sleep figuring prominently in the equation.

In July of 2004, when my symptoms were flaring so badly I could barely function, I visited a doctor who diagnosed me as depressed and even laughed when I made the suggestion of fibromyalgia or chronic fatigue syndrome. She prescribed psychological counseling and dismissed me. I requested that she perform tests for Lyme disease. She did, but the tests came back negative. In that doctor's report, she erroneously stated "patient [that would be me] denies any tick exposure." In actuality, I explained to this woman that I had been exposed to ticks constantly, since I'm always out in the woods with my dogs, particularly on Cape Cod where ticks are rampant. What I "denied" [I detest that terminology] is a tick bite. This would be the first in what became a "comedy of errors" from some half-a-dozen doctors who did not take me seriously due to my good-natured disposition -- a curse at times. These doctors also did not listen, and thus did not take careful notes, and demoralized me by snickering at my suggestions that they determine a physical diagnosis, not a psychological one.

Anyone who knows me knows that I'm a very happy person. Runner-up for "Class Clown" in high school, always the funniest person in the office or factory throughout my working years. Recently, a co-worker whom I don't know very well stopped me in the hallway. She remarked, "You are always so happy. What's your secret? It's infectious!" If that doesn't prove that I'm not depressed, I don't know what we need -- an act of congress? I haven't a thing to be depressed about. I would never think of committing suicide, yet you wouldn't believe how many doctors have asked me that question. I guess it's on the "list" of things they have to ask. They should be more observant, more imaginative. The closest I've ever come to being "depressed" is during my alcoholism days, and a few times I've wanted to "escape" my highly-stressful life by running away to Cape Cod, or God-forbid work-at-home instead of going to the office. Other than that, there is absolutely no evidence of depression, and to suggest that to me when I am clearly hurting from a physical condition is an utter insult.

Nevertheless, to appease Ms. Doctor-lady, I figured I'd take a "let's see" approach, and talk to a psychologist. In late 2004 and early 2005, I began seeing a psychologist weekly. During our sessions, somehow things got off-course and our sessions focused on my relationship with my boyfriend as well as dissatisfaction with my job, and this person began trying to help me end my relationship and my job (two things I had no intention or desire to do!). This person criticized the way I dressed, and never provided a diagnosis of depression or anything else. Her agenda, it seemed, was to belittle me and treat me as though I was wasting her time. About the eighth week of counseling sessions, I arrived for my regular appointment and the psychologist did not show up. When I asked the secretary where she was, the secretary checked the schedule and said that the psychologist had no appointment scheduled for me that morning. I had the secretary try to reach her by phone, but she was unavailable. I waited another 30 minutes, had the secretary try one more time, and then I went home. A few hours later, the psychologist called me, horrified that she had forgotten our appointment which had indeed been scheduled and written in her book, but not in her secretary's book. I ended the counseling sessions.

By November of 2004, when there was no improvement in my physical symptoms, I requested that my then-PCP refer me to a rheumatologist to test me for fibromyalgia or Chronic Fatigue Syndrome. I visited the rheumatologist a few days later. After performing the requisite tests for FM and CFS, she determined that I did not have enough "tender points" to be diagnosed for FM, but that I did have a lot of other symptoms consistent with the condition. (Please note: today, many of the leading experts on fibromyalgia are no longer using the criteria established by the College of Rheumatology back in the 1990s: i.e., "patient must have 11 out of the 18 tender points", but instead base their diagnoses on the symptom history and its chronic nature. As long as the patient has some tender points, and other chronic symptoms consistent with the disorder, the diagnosis of FM or CFS is made. In addition, while doing the tender point test, the rheumatologist's finger must "blanch" due to the pressure applied to the patient at the 18 tender-point locations. The examiner is supposed to apply nine pounds of pressure to each tender point. The woman who examined me barely touched my tender points. It is my opinion that she took one look at me, the always-smiling K2, and decided then and there that I was not sick. She, too, treated me like I was wasting her time.) She gave me a pamphlet of exercises and home therapies normally provided to FM/CFS patients, stating that the self-treatments would be good for me. She stated that disordered sleep was the one and only reason for all of these symptoms, and instructed me to get my sleep straightened out. Anyone who knows anything about fibromyalgia knows that disordered sleep is a symptom of fibromyalgia! At the conclusion of the exam, the woman looked at me and remarked "Your cheeks are pink." A thought crossed my mind, "Lupus?" but I did not ask the question. In her written report, the rheumatologist recommended ANA and CPK tests, and mentioned the possibility of lupus*, although, her opinion was that I did not have symptoms consistent with lupus.

*It would be two years later that I would return to the same doctor, requesting that I be tested for lupus. She was very dismissive of me during this second appointment. She took one look at me and said, "I doubt you have lupus." I reminded her of the "pink cheeks" comment from two years earlier, and her suggestions that ANA and CPK tests be performed (they never were done by my primary care physician, despite the fact that the rheumatologist advised her to perform those tests). The rheumatologist reluctantly accommodated my requests, ran the tests, which came up negative, and concluded in her report, once again, that my symptoms are only and exclusively due to disordered sleep. In her report, she erroneously states that I sleep only 4 hours a night. In actuality, I reported to her that I sleep 4 hours, wake up, and go back to sleep again. However, she did believe that I am in chronic pain, and said calcium and vitamin D deficiency can cause muscle and joint pain. She prescribed 600 mg Calcium twice daily, as well as 50,000 IU Vitamin D once weekly for 12 weeks. I developed pain in my kidneys toward the end of that regimen, and haven't taken calcium or vitamin D since. These supplements did absolutely nothing to relieve my muscle and joint pain.

In February 2005, I traveled again. This time to California. Upon my return to Boston, I once again became extremely ill with what I will describe as "the second worst cold I've ever had." Again, the symptoms were so severe as to have me miss several days of work. This "cold" lasted approximately 16 days. Following this episode, all of the symptoms that had developed a year earlier escalated and I have basically never recovered.

In the spring of 2005, I decided to try an alternative approach, after becoming totally frustrated at hearing so many doctors say "there is nothing wrong with you" or "you're depressed." I switched primary care physicians, and asked for a referral to an osteopath. I received a referral which covered 6 visits through my HMO, but any visits over and above the 6, I would have to pay for myself. I visited the osteopath weekly from April 2005 until April 2006, paying myself for the majority of the visits at a hundred-and-fifty bucks a whack. The osteopath did agree that my symptoms are consistent with FM or CFS, but also said that I "could benefit from counseling." Well, I wasn't about to go that route again. The osteopath treated my pain symptoms with osteopathic manipulation once a week, as well as prescribing hot baths with epsom salts, yoga classes, drinking 64 ounces of water a day and reducing caffeine consumption. At this time, I stopped drinking diet soda and reduced my coffee consumption to 2 cups a day, in the morning only. These treatments did wonders for me, but the fatigue and lack of stamina, as well as the pain had become so chronic as to lead me to "just live with it". I eventually discontinued seeing the osteopath because the distance to drive was actually putting me in danger since I was so excruciatingly fatigued that I had no business being behind the wheel of a car on the highway.

In early 2006, I met with a new primary care physician. She was most helpful and accommodating, but again did not provide a definitive diagnosis except to say that she believed me, and that I definitely had symptoms consistent with FM or CFS. She prescribed Zoloft 50 mg for pain, an SSRI anti-depressant, while assuring me that she did not believe the symptoms were "all in my head" or that depression was to blame, but simply that anti-depressants can help with pain and fatigue. Willing to try the treatment, I took a 50 mg tablet the first day. The effects of this drug were overwhelming. It made me completely oblivious to my surroundings, to the point where I didn't care about anything and just sat in my office staring at the computer screen at work. I called the doctor and explained that the drug was too strong. She instructed me to cut the pill in half, and take 25 mg. If that was still too strong, cut that in half again to 12.5 mg. I did all of the above, and tried to take the 12.5 mg dosage for about a week. When it was clear that I could not tolerate the drug due to its overwhelming effect on me, we discontinued the Zoloft. It's important to point out here that, if anyone once thought I might have been clinically depressed, the fact that this medication threw me so far off my game should be pure and un-refutable evidence that depression is not the problem!

At that point, I decided to go it alone for a while, until the fall of 2006, when once again these symptoms became unbearable. I had been told by my new PCP that things might worsen during the fall months, and she was right. While I liked that doctor a lot, I had been trying to get in with another doctor who had come highly recommended, but who was not taking new patients for quite some time. With the help of a friend, that doctor took me on as a new patient. I visited her for the first time in November of 2006. She took me seriously, and even spent a total of two hours with me in her office listening to my entire medical history, as well as interviewing me about my life. While she still took control of the appointment, she had a very creative way of doing so, which made me feel comfortable and validated. She agrees that I have fibromyalgia, and talked to me about the original write-ups on fibromyalgia coming right from the very hospital where we were sitting, and written by the man who was her mentor. She prescribed a tri-cyclic anti-depressant I'd never heard of before: Trazodone. Only a half-a-pill, at bed time to help regulate my sleep. Scared to death to try another anti-depressant, I was leery. But I took the Trazodone as prescribed. While it did not help me sleep -- in fact, it made my sleep patterns worse! The other results were instantaneous. No longer was I being hit with a debilitating fatigue at 11:00 a.m. each day -- the very time when I'm supposed to be starting my work day! Instead, I am virtually fatigue-and-pain-free all day, until evening, when I am able to relax and take care of the pain instead of having to work through it. I have more energy than I've had in three years. I can actually clean the house and go to work, both in the same day, instead of having to choose between the two. Some say the Trazodone will not work permanently, the effects will wear off. So far, I am happy with the results, although the IBS stuff has escalated (probably due to taking calcium with not-enough food) and I've had more central-nervous-system-type symptoms since starting the Trazodone (more migraines, dizziness, vertigo and that odd feeling like an electrical current is running through my spine), which the doctor says is a side-effect because Trazodone lowers blood pressure.

The jury is still out, and this is not a cure. There is no cure for fibromyalgia. In some people, it goes away after a few years. But most of the time, it's a life-long disorder. Therefore, I will probably always be, The Walking Wounded.



For additional information on Fibromyalgia (FM), Chronic Fatigue Syndrome (CFS/CFIDS), Lyme disease, Lupus (SLE) and Multiple Sclerosis (MS), please visit these web sites:

http://www.fibromyalgia-symptoms.org/
http://www.fibromyalgiasupport.com/fibromyalgia-understanding.htm
http://www.cdc.gov/cfs/
http://familydoctor.org/031.xml
http://www.pediatricnetwork.org/medical/CFS/bell-commentary/ms-cfs.htm
http://www.lymeinfo.net/chroniclymedisease.html
http://www.canlyme.com/fibrocfslyme.html
http://www.immunesupport.com/library/showarticle.cfm/ID/3579
http://www.uklupus.co.uk/
http://www.msrc.co.uk/index.cfm?CFID=1944996&CFTOKEN=89836308

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