hatman: HatMan, my alter ego and face on the 'net (Default)
[personal profile] hatman posting in [community profile] fibro
I thought I'd start the comm's actual business off by talking about my experience with fibromyalgia.

I developed fibromyalgia as a teenager, back in the early 90s. This was before the term was widely known. It took a couple of years before I was even diagnosed. Before that, I was sent to a series of psychologists because people (various doctors, the school administration, etc.) assumed it was all in my head. Even when it was diagnosed (I reacted rather strongly to 18/18 tender points), the doctor didn't know what to do for me. When I didn't respond to treatment, he grew more and more frustrated with his inability to help. Eventually, he threw me out of the practice, saying that if I wasn't getting better, it was obviously because I wasn't following his treatment regimen.

I got used to being tired all the time. Got used to having my mother literally lift me out of bed every morning. That process left us both breathless for a minute or so. I moved stiffly, with great pain and difficulty. And had more and more trouble with school. Specifically, the school's willingness to accommodate my needs.

Eventually, I ended up switching to the local high school. I was fortunate to live in a very good school district. They allowed me to go on home instruction. They sent tutors to the house. I spent one hour per week per subject with a tutor (two for English Lit.), and did all the work the regular class was doing.

There were days, though, when I couldn't get out of bed even with help. Sometimes, I had to cancel the tutor for that week and catch up later. Other times, I ended up doing the work in bed.

My parents were as supportive as they could be, but no one really understood what was happening or what was best or how to handle it. It wasn't easy on any of us, to say the least.

Junior year of high school, I had to go on medical leave, even from the tutors. I just couldn't concentrate on anything. Trying left me feeling woozy, and like I was thinking through cotton. I was like that for months. I had to redo the year. Next year, though, I took the same classes and got straight As.

I was lucky, in a way. By the time I was ready for college, the symptoms had eased. I was able to walk almost normally, and though I tired easily, it wasn't a huge limit. Even the pain had subsided to the background.

I overextended myself, though, during freshman year. Too excited. Tried to do too much at once. I did well enough, but I exhausted myself. Spent the whole summer sleeping it off.

Sophomore year went better, though I still had trouble with fatigue. And a lot of trouble with my sleep schedule. (That's not just the fibro, though. I've got other sleeping disorders.)

Junior year did not go so well. First, I developed sleep apnea (yet another for my collection). I was forced to go on medical leave to get that fixed. Came back to try again, and... the concentration issues surfaced again.

It was almost 8 years before I found the likely cause. Years of going to different doctors and trying every possible avenue. Until finally at the Mayo Clinic I learned about Fibro Fog.

I still haven't recovered, really. I've lost a lot of processing power. It's been so long since I've been in my "right mind" that I don't even remember what it's like. And I'm still not sure how to deal with my limitations.

These days, I'm generally tired all the time. My joints are tender, and the old familiar pains come and go as the please (though thankfully not with the severity of my teenage years). I walk slowly, with a cane, and stop frequently to rest. I've stopped all attempts at creative writing. Even birthday cards, much as that pains me. I just can't seem to get the thoughts to form.

But I'm taking Lyrica. It's one of the few medications that's helped me. It doesn't do anything for the pain, but it does let me sleep more deeply.

I also got a book of exercises from the Mayo Clinic. Specifically designed for patients with fibro and similar conditions. (See the first post in this comm.) Was working, gradually, with a personal trainer at the local gym. That was going well until other issues forced me to put it on hold.

I'm also going to a "brain rehab" clinic, working on testing my mental limits, finding strategies to work around them, and see what I can do to be productive.

Finally, Dreamwidth has been good for me. The socialization. The creative aspect. Having people to talk to, things to do, something positive to focus on. And people here understand about medical limitations. And doing what you can on your own time and your own terms.

That's an overview, anyway.

How has fibromyalgia affected you? And what about the people around you?
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November 2013

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