Hi,
I guess this really is a rare disorder because I'm always looking for websites or forums out there about this to talk to people about, and there is hardly anything, so I'm glad to know there's someone on this forum too!
I'm a 24 year old female that is self-diagnosed since high school when I started to research my symptoms on my own for a few reasons. I have dealt with it my whole life - my earliest memory being in kindergarten and not being able to get up after sitting for awhile during story time. I remember the teachers looking at me kind of oddly, but I got really good at hiding it. For me it was mostly brought on during school in the morning when sitting for too long in class. I did my best to fidget and fake dropping my pencil just to get out of my seat to prevent an attack from coming on. I never talked about it or made a big deal out of it, it was just "my legs fell asleep" on long drives or sitting for too long. In middle school, I went to the doctor after an episode that caused me to fall, but of course when I went to the doctor, I wasn't having an episode so there was nothing abnormal about me and the doc just called it "growing pains." I went once more in high school and they did some blood tests, but again, nothing. The doc was clueless. That's when I started to research symptoms and self-diagnosed.
The worst triggers for me: going too long without eating, resting after strenuous exercise, sitting for too long, or cold weather. My episodes usually last less than an hour. Sometimes the intensity goes so far as to restrict my breathing/chewing and eyelid motions, but that's pretty uncommon. I do my best when I'm in a routine and I can predict attacks and keep them from developing, but of course life isn't always "routine."
When I'm on my own time, meaning I'm not in school or at my job, I can usually avoid an attack because I'm able to get up and move around and handle the episode, but not always. I recently started exercising, and just today, after working out, I couldn't go up the stairs because my legs were so weak, and I couldn't go down the stairs because if I attempted, I would literally collapse from muscle weakness and not being able to support myself.
When it happens or I think about it, it makes me feel horrible about myself that I have this, but for the most part I am able to manage it without it significantly affecting my life right now. Of course it crosses my mind when thinking about things such as airplane rides when I'm restricted to a seat for hours, doing physical activity that could be dangerous if an attack occurred, or being in a public situation and having a noticeable attack.
My biggest concerns as a young adult is that I do NOT want to pass this on to anyone else, meaning I feel like I won't be able to have children of my own, because a) I would never want to pass on this disorder to another human being and b) I've read that pregnancy can bring on episodes and be quite complicated.
Wow, I don't think I've shared this much with anyone. I really don't talk about it all because I've just come to feel like it's "normal" for me and my friends and family wouldn't understand, and not even a doctor has been able to figure it out.
I'm glad that this community is here, and I would like to continue sharing!
What are some of your biggest daily/common obstacles and how do you deal with them?