Thank you, Annie and Alice! I want you all to understand that this discussion doesn't upset me or make me anxious. I find it energizing.

I have two main symptom-groups. First, is a feeling of heaviness and tiredness in my arms, and a feeling of tiredness in my neck. This is pretty consistently there, though it's worse as the day wears on.

Second, I get spells of weakness. I feel them coming on. I say to my husabnd, "Oops, I'm getting weak," and he knows what that means! Usually I don't have enough time to get up the stairs to bed before I'm so weak that it's hard to get up the stairs. Then, after some time (20 minutes to an hour) I feel it lift, and then I can walk, though I'm tired.

So, it occurred to me that any time I'm so weak that it's hard to walk, I'm having a "spell." If I have four "spells" between, say, 5:00 and 11:00 p.m., I might not notice they're individual events, especially if I'm sitting on the couch through them. But if I pay attention, I think I can feel them coming and liflting.

If I'm having a good day--less heaviness, and no spells--I can go walk around the mall for two hours and not wear out. I'll be tired than a normal person, but it won't necessarily bring on a "spell." Then again, if I do too much, I think it triggers a flare-up, in which I have more frequent, and more severe, "spells."

So, I want to distinguish between fatiguability, which builds up, and "episodes," which come on suddenly, and may be unrelated to how much I've been using my muscles.

Does that make sense?

Abby