Thursday, April 14, 2011

What Do You Mean Fibromyalgia Is Just A Syndrome?

When I first got Fibromyalgia, the diagnosis that is, I paid little attention to that strange word Syndrome that comes after it, and all my attention on the pain shock-waving through my body. All I cared about was a job I couldn't do but could not afford to lose. My reality was that I was sick as hell but had to keep working, just making myself sicker. It was a no win roller-coaster ride with a crash into a brick wall at the end of it. With no brakes. I never really paid attention to it when I was actively battling another syndrome, the war between terrible viruses and a cancer-causing carcinogenic medication being waged painfully inside my body. No it did not cross my mind as the Chronic Fatigue Syndrome receded into the background of my life as a managed condition, or even possibly considered in remission.  It certainly never occurred to me as I "downgraded" my career from a junior executive position to a 15 hour-a-week part-time night job and it was never even considered when we finally bit the bullet and moved to Arizona. Hot weather and a lower cost of living pulling us out of the cold and expense of big city living. It was here that my Fibro ceased to define me, entirely. The dry heat was of immense relief to the bone chilling foggy year-round wet cold of San Francisco.

Still it did not make one who-ha of a difference to me when I was forced off pain meds by my doctor and put on a stronger dose of Lyrica that caused me to balloon up to epic proportions and completely zone out of my life. And still through all this I did not have any concern over that small little word at the back of this big beast called FIBROMYALGIA that had become the fight of my life. It happened only when I had two strokes, published a very deep and intimate blog about my journey and promoted it for all to read. I did this as a way to give better insight and understanding about what it is like to live with this illness and share with other patients there is a way to manage the symptoms so life was not so unbearable. I was reading Fibromyalgia sites on Facebook left and right. I discovered the state of affairs in the world of Fibromyalgia across the country and was appalled. No one should be blamed for having this illness simply because modern medicine is not advanced enough to know how to study or treat it. Yet I was meeting folks left and right that experienced just that. Bad doctors blatantly stating they do not "believe" in Fibromyalgia. Spouses and partners still insisting that if you would just get up and ________ (fill in the blank) take a walk, exercise more, lose weight, eat better, sleep better or just plain decide to get over whatever is wrong with you, you would feel better! And I saw how badly the battered and bruised patients became, with doctors giving the families and friends all the ammunition they needed to ignore that they are really sick!

And then one day it jumped off the screen at me. For I had been ranting and raving about Fibromyalgia the disease. Yet all my research kept referring to it as a syndrome. Syndrome seemed so degrading to me, like it downplayed the validity, kind of what "Chronic Fatigue Syndrome" does to that syndrome. And then one day it was explained to me. Syndrome simply means "no known origin". They cannot figure out the decisive medical cause. That still did little to comfort me. But then I got to thinking. The condition that caused my strokes is called RCVS, Reversible Cerebral Vasoconstriction Syndrome, that S word again. And I most definitely had 2 strokes, verified by multiple methods of scanning slices of my brain and threading cameras through my body to observe my cranial environment. And sadly I thought of SIDS, Sudden Infant Death Syndrome. There it was again, that S word slapped on a very tragic and very real medical crisis. So I guess I have accepted syndrome as the end word of the illness that is Fibromyalgia. Without offense. But only until a cause for this monster is discovered and I can go back to calling it what it really is, a terrible terrible disease. Now we just have to get the rest of the world to understand.

Thanks for joining,


  1. Ohmigod, your first paragraph about your job just described my life! I was working my ass off for a job I loved but was literally killing me until January when they made me redundant, allegedly for economic reasons but in reality because of my sick record. A horrible process but a blessing in disguise; I've left the horrible environment of London and gone back to live in the country with my parents and it's wonderful! Sadly, whilst redundancy paid off debts that were keeping me working in London, I do still need a job to support myself as obviously I can't live with my parents forever. But I've not felt as well as I do now for a very long time - now if only I could convince the government to pay me to stay at home...!

  2. Have always hated the word syndrom, just seems to make the disease sound so less credible, and enough people dont think it is right now!