I'm happy to find this forum. I'm still playing "Name That Disorder," myself, but hoping to find some answers soon. The best guess at the moment, after ruling various other things out, is that I have some sort of metabolic myopathy. I'm going in for a referral at a specialist institute but not until December.

Until then, I'm trying to cope with how to deal with my fatigue, which is my main symptom. I find it hard to explain to people, when I can do just about anything, but I can really only do about one thing per day (a choice between a few errands, a little work, or the gym for some absolutely crucial weight-training). And of course I look fine. In fact, I look great, because I've been lifting weights!

The hardest for other people to understand, though, and the one that makes me feel the loneliest, is that I get really tired smiling at people or even looking interested in what people are saying. My facial muscles just can't keep up. Though, I also can't completely blank out my face when I get tired; the social instinct to express things in my face is just too strong. Anyone else have this one?