Saturday, November 28, 2009

Fibromyalgia

People ask me all the time "What is fibromyalgia and what does it feel like?"

I never can describe it. I actually don't like talking about it much because then you see my disability instead of me (except I was in one ward where I told the Relief Society sisters, and they were SOOO kind--they offered to send sisters over to pick up toys, never ever ever judged me for my messy floor, supported me in my weird sleep schedule, etc. I was overwhelmed with love and understanding instead of labled "strange").  Fibro is a weird disability because it is invisible. I look normal and act mostly normal (just a little squirmy and just a little quirky), and then I'll have a messy floor, cry easily, or totally lose my mind over something and nobody can understand it!

So I'm putting up a little information here.

For one, there is always the look on people's faces when I mention pain. They look a)like they don't believe me because I seem pretty normal and don't wince when I walk or move or b)like they have deep concern and pity for me like I need to be coddled and not allowed to move for fear of tolerating immense pain. And I have never successfully helped anyone understand what I mean by "pain" (just like it's really hard to describe to people what labor and childbirth feel like). But, thankfully, this lady described it:
http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibromyalgiapain.htm  When I read that, I first laughed and then cried. It's me.

Also, here is a list of symptoms many people have. With fibro, the symptoms "cycle", meaning sometimes I'll have them and sometimes I just won't. I haven't had all of these symptoms, but I've had enough that I laughed when I read this list.
http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibrosymptoms.htm

And, if you recognize yourself in these lists, here is some more heavy-duty information:
http://homepages.sover.net/~devstar/

If this is you, then you might want to read this, too:
http://chronicfatigue.about.com/od/copingwithfmscfs/a/10things.htm

1 comment:

Unknown said...

So basically, someone sneaks up on you regularly and hits you with the Crazy Symptom Bat. Never a dull moment!

(On a side note, today's Word Verification is: cavolo.)