Sensational

One of my first symptoms was an indescribable sensation in my legs. It felt awful, and the only thing that helped it even a little bit was walking. Of course, once I stopped, the feeling was unbearable, and there was nothing I could do about it.

At night, I'd sleep with my legs up on a huge pillow, and I'd take both Aleve and Benadryl so I could sleep.

Heat made it infinitely worse. So much worse, in fact, that I dreaded the next summer, because I was so unable to deal with it.

Now that I think about it, I wonder if I had RLS, or something like it. I still get the feeling sometimes, but not ever as bad as it was that first summer.

I had some transitory numbness and tingling in my hands and feet, some pain with no cause (which I still have). I was often afraid of burning my hands because I couldn't tell if things were hot--but only sometimes. It came and went as it pleased.

Since then, things have changed a lot. Now, my body is overly sensitive to the strangest things.

I love the way clothing feels. I can waste an hour rubbing my hands over and over a pair of socks. It sounds ridiculous, but it feels awesome.

I can't wear turtlenecks anymore, even though I used to love them. I can't handle the feeling of something on my neck.

I get cold a lot, though I'm usually hot. I get cold at weird times, too, and for no apparent reason. (Migraines and nausea and lack of sleep make me cold, but that used to be it.) I happen to be freezing now. Go figure.

Sometimes, for no reason I can understand, singing annoys my body. Singing is one of my favorite things, and when I can't sing, it scares me. I worry that I'll never be able to sing without making every hair on my body stand on end. I worry that my dream of doing something with music will never come true. I worry that everyone will ask me to sing and I won't be able to--and they'll all wonder why.

At those times, singing makes my skin crawl, it feels like metal is screeching in my ears, it brings tears to my eyes. It isn't the sound, it's the vibrations through my body.

The other most annoying sensation? Long hair.

I've donated my hair twice--once when I was 14, once when I was 17, and now, at 20, I'm going to do it again.

The second time I'd donated it, I'd been living with fibro for a year. My hair was annoying, but it wasn't physically uncomfortable.

By the second year after I'd donated it, it had crawled past my shoulders and was growing down my back. And it itched.

No one I know has ever heard of anything like it, and I'd never experienced it before. To this day, my back itches when my hair touches it. This has been going on for two years. I'm ready to get rid of it. And I don't think I'll be able to do this again.

I love donating my hair. I think of all the kids with cancer who had long, curly hair and get short, curly wigs. The longer I grow my hair, the longer their wigs will be. Additionally, my hair is a weird color, and I can't imagine that many people donate curly hair with my coloring. I hate that fibromyalgia could keep me from doing it again.

Regardless of fibro, I happen to be very, very, VERY happy that I'm donating my hair next week. I like it better short.