Chronic Lyme Disease Summit 2

10 Things You May Not Know About Fibromyalgia #May12 #fibromyalgiaawareness #MEawareness

Today, May 12th is Fibromyalgia Awareness Day (or ME Awareness Day in Europe and the UK).

From Mayo Clinic:  Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues.  Researchers believe that fibromyalgia amplifies painful sensations by affecting the way the brain processes pain signals.

Here are 10 things you may not know about Fibromyalgia:

Many thanks to Fibro Music for this meme!

  1. Fibromyalgia/ME affects approximately 10 million people in the United States, and around 5% of the world's population!  Yet many people have never heard of it, or do not understand exactly what it is. 
  2. People with fibromyalgia are not lazy or anti-social.  Most people afflicted with fibromyalgia are "Type A" personalities, mostly women, who balance work, family, recreation and other activities -- or at least they did so successfully until fibromyalgia struck them down in their tracks.  Once fibro hits, many people are not able to function as well as they once did.  Some are completely disabled.
  3. There is no cure.  Symptoms can be managed, but this is a life-long condition that will never go away.  Fibromyalgia doesn't go into remission, although some people with fibromyalgia have "good days", "good months"  or even "good years".  Management of one's schedule and symptoms is the only treatment that helps, but it does not cure the disorder.  Most people with fibromyalgia have already tried basically "everything" to cure the symptoms. Most of us find that prescription medications do not help, but instead cause yet another symptom:  drug sensitivity.
  4. Fibro Fatigue. Everyone gets tired.  This is different.  The fatigue of fibromyalgia is constant, unrelenting, crushing, all-consuming, intense exhaustion that is present almost all the time and is not corrected by exercise, activity, foods, beverages, supplements, medications, rest or sleep.  Those with fibromyalgia or ME exist in a constant energy deficit and are exhausted all the time.
  5. "I would never know it by looking at you; you look great!" If we functioned based on how we physically feel, we would stay home in pajamas every day.  It's not an option.  We are always in some kind of pain, we are always exhausted.  This thing wants to force its victims to give up on life, but most of us fight it, hard.  We try to dress nicely and participate in life because it makes us feel better if we look good and presentable.  Sometimes I wear my pajamas (sweats or yoga gear) to work.... that's when you know I'm having a really bad day.
  6. Fibromyalgia/ME is not mental illness, depression or hypochondria.  People with fibromyalgia/ME can certainly develop anxiety, depression or other mental illnesses as a co-existing condition (who wouldn't be depressed when your life has been ruined?!), but fibromyalgia is not mental illness.  Depression is a life-threatening illness because it can lead to suicide.  If you have depression with fibromyalgia, which is entirely possible, seek help and treatment for depression.  As for hypochondria...no, baby, this is real.  We are not obsessing about our symptoms as a preoccupation.  Believe me, we do not WANT this!
  7. Fibromyalgia/ME is not life-threatening.  But it is life-altering and life-ruining.  People with fibro/ME will not die from the condition, but they will be forced to make major changes in their life, and even give up activities they once enjoyed, because of depleted energy reserves, chronic, unrelenting pain, and digestive or emotional problems associated with the disorder.  
  8. Fibro-fog (aka "brain fog") makes us forgetful and "not the person I used to be".  I might forget something you just told me yesterday; I might mix up words or substitute a same-syllable word for another (which is kinda funny sometimes!);  I may behave in a "spacey" way when I never was a space-shot before!  I used to have a "mind like a steel trap", but not anymore.  Fibromyalgia has stolen that from me.  Fibro-fog is not dementia or Alzheimer's.
  9. What is a fibro-flare?   Living with fibro means that pain and fatigue are almost always present (when a person with fibro has no pain or no fatigue, they are rather shocked and wonder what they did right!); but a fibro-flare is when symptoms worsen.  Generally speaking, this is due to a "trigger" although the trigger may have occurred two or three days prior to the actual flare-up. Sometimes there is no clear trigger, a flare just happens, apparently for no reason at all. This disorder is so insidious -- we never know when a flare is coming.  It makes it nearly impossible to make plans, socialize, travel, work, etc.
  10. Widespread musculoskeletal pain.  As people get older, they'll usually get aches and pains.  The pain of fibromyalgia isn't the same as that.  Fibro/ME pain is severe and debilitating, and bounces all over the body.  One day your knee will hurt, while the next it will be your shoulder or your foot, or a headache, or a backache or menstrual cramps.  Sometimes it's all of those things simultaneously.  Sometimes the pain migrates throughout the body in the same day!  Remember what "body aches" feel like if you've ever had the flu?  That's how fibromyalgia feels... always.
Even though fibromyalgia has been recognized (somewhat) since the 1600s (!!!) doctors are only just now coming around to considering it as a real disorder and not just a "wastebasket diagnosis".  In the 10 years since I started experiencing the crushing fatigue (I have had chronic pain since I was 10 years old) I have seen a huge change in doctors' willingness to discuss fibromyalgia.  They even diagnose the disorder and offer to treat it (with anti-depressants, but hey we're getting there!) whereas my initial experience with doctors was that they were very "dismissive" and would say things like "There's nothing wrong with you" and "All of your tests come back normal.".  I have seen a major shift in doctors' attitude towards fibro/ME in just the last two years.  And I'm just one patient!  So, if I'm noticing it, there is hope for even more acceptance and awareness.

Update:  the NFMCPA just sent this link in email.  I thought it goes pretty well with my blog post!  So, here it is, if you wish to read this as well:

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