I’m back to blogging after taking month or so off preparing hour long talks on fibromyalgia and chronic fatigue syndrome for doctor groups at our local hospital (one talk for the pediatricians, one talk for the Ob-Gyns). The talks took alot alot alot of preparation on my part (I wanted what I said to be compelling and interesting). I the doctors who attended were very interested in learning how they can more easily recognize a patient with FM/CFS. And after both talks I was approached by doctors who knew they themselves had the illness, but had never done anything about it. This gave me the opportunity to let them know I could care for them, with education and treatment options.
What I don’t understand are doctors that see FM/CFS and still think it is does not exist as a syndrome, and that the symptoms are all in our heads. The hard scientific data is compelling (I will post that next), and you would think our symptoms would be compelling as well. Do they think we are all so crazy we make our symptoms up? I know that anxiety and depression can be part of the syndrome complex, but they are with many other syndromes and diseases. Besides, if I was going to “make up” symptoms, I think I could be A LOT more creative–the common symptoms of fibromyalgia are no fun.
I know one of the stumbling blocks is the lack of a blood test to diagnose fibromyalgia. Dr. Charles Argoff, Neurologist at Albany Medical College and Director of the Comprehensive Pain Center says “clinicians should be accustomed to being faced with managing conditions for which absolute knowledge regarding the conditions and there etiology and pathophysiology is not yet known. In fact, this is true for most medical conditions we encounter including many non pain conditions such as hypertension, various cancers, and diabetes.”
Those of us with fibromyalgia and CFS need to say strong. I feel confident that in time our syndrome will be recognized as a disease, and we will start to get the respect we deserve. Until then, we need to stay organized and find a compassionate and informed doctor.