That feeling when you're in bed, and over the course of two or so hours you feel your muscle strength totally leave your legs and your hands, and your fingers…so you do your usual tests, the ones you've developed over the past 8 months…and you realize you've lost your ability to snap your fingers, wiggle your toes, even moving around in bed to adjust position is complicated, and you know in about 30 more minutes your legs are going to be out to lunch…but you need to be a functional adult in a few hours for work…miles away from a name for whatever this is that robbed you your mobility.

Just finished up at the Neurologiats office. They don’t think this is just Fibromyalgia for a lot of reasons. Chief among them are that many of my symptoms are far beyond the scope of Fibromyalgia. Also, whenever I’m in a flare up/excessive pain, my CK levels are elevated indicating some kind of muscle issue (“It’s not all in your head!”). ”

My doctor was also like “and when you were there you were on high doses of Prednisone” and I reminded them that “Yes, and I was also on two months of resting because I was on disability…” (and I’ve been saying the “hey, I was on high doses of steroids” thing for weeks now. 
Anyway my neurologist is writing a letter to the Mayo explaining his thoughts and observations, and asking them to take another look. He believes, like my primary care physician and I do, that we’re missing a part of this diagnosis and that the Fibromyalgia is comorbid with something.

Back to the Mayo Clinic we go…and if they won’t give us an appointment, to Johns Hopkins.