Fibromyalgia Awareness Day, 2013

Today is not only Mother's Day 2013, but it's also Fibromyalgia Awareness Day, which is observed on May 12th each year for the last 21 years.  It is hard to believe that fibromyalgia was talked about, even then, in 1992, because if you think about it, the average person STILL does not know what fibromyalgia is today.

What is fibromyalgia?   Fibromyalgia is an invisible, chronic pain and fatigue condition of unknown origin.  Researchers do not know the cause, and there is no cure.  In order to be categorized as fibromyalgia, the chronic pain must be widespread in all four quadrants of the body, and must last, pretty much constantly, for at least three months.  Typically, people with fibromyalgia "look fine", or "don't look sick".

Someone once said to me, "I think I have fibromyalgia because my neck has hurt for 3 days."  No, that is not fibromyalgia.

Imagine, if you will, pulling a muscle by exercising too hard or lifting something too heavy.  Everyone has experienced this, or lower back pain, arthritis, or even a headache.  That is the same kind of pain felt with fibromyalgia.  Only instead of it being focused on one location and going away in a day or two with a little bit of sore-muscle-ointment, stretching, rest or a couple ibuprofen tablets, the pain is untouchable and lasts a long time, and is in multiple places in the body simultaneously such as shoulders and neck, knees, hips, legs.  The pain can hit several areas all at once, or, more commonly, it will migrate.  That is to say, during the same 24-hour timeframe a person can experience pain in the hips, then that goes away or lessens, but pain pops up in the ankles, or knees, or shoulders, or hands... or a headache.

The syndrome also includes a spectrum of symptoms not limited to: chronic headaches, monthly menstrual-related pain in women, carpal tunnel syndrome, crushing, indescribable fatigue, depression and brain-fog.  (Note the name of this blog, "the Fibro-Fog Chronicles"!)

When I say crushing, indescribable fatigue, it's not like when someone says "Oh, I'm tired, too."  There is nothing like this type of fatigue.  It isn't malingering -- 99.9% of fibromyalgia patients will tell you that they WANT to go to work, they WANT to go to that birthday party, they WANT to go out to dinner, they WANT to keep their house clean, they WANT to travel, but they are literally incapable of doing any activities when the fatigue hits.  There ought to be another name for it other than fatigue, because the feeling defies description, and you never know when it's going to happen.  You can make all the advance plans in the world and it may or may not slam you on the day of the flight you bought tickets for months before.  I will make those plans, because I refuse to be a hostage to this thing, but I generally pay the price afterwards.

Perhaps the worst symptom of fibromyalgia syndrome is the brain-fog.  In my particular case, I did not develop this problem until many years into my fibromyalgia journey.  But each fibromyalgia patient is different. Some have brain fog straight from the beginning, and very little fatigue.  Some can't walk, and others can run in 5Ks.  Each case is different.  My brain fog started a couple years ago.  "She who has a mind like a steel trap" (at work they called me a savant because I could remember customers' addresses without even looking them up!) feels like she has lost her mind.  I no longer can remember ANYTHING unless I write it down.  I mix up words when I speak, or forget what word I was trying to say.  I substitute a similar-sounding word for the words I am looking for, which actually is quite humorous -- you have to be able to laugh at yourself!  The ability to concentrate is a thing of the past.  Just trying to write this blog post, my concentration has been broken 17 times.

In my particular case, most traditional-medicine treatments have failed, miserably.  If one more doctor says the word anti-depressant to me, I just may lapse into catatonia!  I have instead relied on daily management.  For me, personally, managing the symptoms one-by-one is the only thing that works.  But again, remember every person with fibromyalgia is different -- what works for me may not work for another, and vice-versa.  For me, everything is about scheduling and planning.  If my schedule gets thrown off, it can throw me into a tizzy.  If I've pre-planned an event, I must rest the day before, and the day after (or, for shorter events such as dinner out with friends, rest for an hour before and have the entire rest of the evening free after).  I have to schedule in the rest periods.  Otherwise, I am totally screwed and will be on forced rest, which is worse.  In other words, to stave off the fatigue, I actually PLAN for it ahead of time.  I take Advil for pain, and if I get a headache (I've had chronic migraines since age 10) I take the tried-and-true (for me) Excedrin, a large iced coffee, a full glass of water, and a half hour nap.  I try to exercise whenever possible, mostly riding my bike or walking (with or without a dog or two or three).  It is SO important to MOVE.  I cannot stress this enough.  Sitting still if you have fibro is a sentence of doom.  You do not need to run a marathon, but you need to walk up and down your driveway, or from your living room to your kitchen and back, or up and down a corridor at work. Again, every case is different, but for me if I sit still or lie around too much, I feel worse, not better.

It takes a few years to figure out how to manage the symptoms, but once you've gotten a handle on it and gotten into a routine, you CAN live with this ailment.  I always tell myself, it could be worse.  This is NOT a life-threatening disease, but it can and does mess with one's quality of life.  Those of us with fibro need to fight against that and not let it win.  Yes, this is life-altering, but it is not cause for complete defeat.  Sometimes, I think fibromyalgia is Mother Nature's way of getting our attention.  Most of us are high-energy, Type A, over-achievers -- "human doings" instead of human beings.

So that,  dear readers, is what fibromyalgia is.   Be aware, be informed.  Thanks for listening.