Fibromyalgia Overdiagnosis

Many of the patients I know, myself included, went through living hell to get a diagnosis. First there was the round of new doctors who didn't believe I needed anything more than an antidepressant and a hobby. Then once I found one who didn't think I was a crackpot there was the year or so, while my delicate grasp on life was slipping through my numb and wobbly fingers as I rapidly lost the ability to function, of testing to rule out every other illness that could cause my symptoms. Finally came that cold reluctant diagnosis of exclusion. Which basically meant, "We don't know what is wrong with you, and your symptoms fit the profile, so you have Fibromyalgia. But there is no treatment or cure, and we really don't know much about it, so you girl who is falling head first into the swirling abyss of hades, just go figure out how to live with it." That was 2006.

I am glad things have changed. A year later Lyrica was granted FDA approval for the treatment of Fibromyalgia. The community rejoiced. Finally someone in the modern American medical system acknowledged it was a real illness and offered some relief. But not all patients responded to Lyrica, or the side-effects were worse than the disease itself. Then along came Cymbalta and a few years after that Savella. I have taken two of those and lets just say I ain't no more, and I am not alone in discovering the side-effects were not worth the benefit. It is now five years after the introduction of clinically approved pharmaceuticals to the Fibromyalgia community and the jury is still overwhelmingly out. Some patients get relief, others don't. Ultimately, as much as those medications have helped many patients, they have also compounded the confusion as to what Fibromyalgia actually is. Modern medicine is still unable to offer a standard of care to successfully treat all patients. 

So what happened? The American College of Rheumatology changed their diagnostic criteria. There has never been a blood test or scan to prove Fibromyalgia. Doctors relied on the tender point test, with other symptoms including fatigue and confusion, to conclusively rule some pretty disabling problems as Fibromyalgia. Not anymore. It is purely based on symptoms now. I recognize the need for a, simply put, more humane way to diagnose this illness. I am not the only person who went to hell and back to get an answer as to why I was living in level 10 pain at all times. But I fear things are going in the wrong direction. A controversial illness doctors don't know much about anyway, and startling numbers still dismiss as invalid, the last thing this illness needs is an increase in the "wastebasket" diagnosis reputation we are all working so hard to change. So I sit on the top of the fence not sure which side to jump to. Yes people suffering and in pain need better access to a diagnosis so they can begin to learn how to manage this horrible illness. But a diagnosis of Fibromyalgia cannot become a sloppy way for doctors to skirt their due diligence, either. A place to just shovel patients they don't know what is wrong with or what to do with. So stay tuned friends. If there is one thing life has taught me so far, it is things never stay the same for long.

Thanks for joining,
Leah