I was excited to see this article by Maija Haavisto about Joint Hypermobility and CFS/ME. It's the first time I've seen them mentioned together, and I've been wondering about it for awhile.
About five years ago my left shoulder started making loud snapping and clicking noises whenever I moved it. Like my shoulder blade was smacking against my ribs. It was weird. My doctor also said it was weird and referred me to an orthopedic doctor. It was a long drive but I was worried my arm was going to fall off soon, so I went.
I read baseball magazines in the exam room while I waited for the doctor. That's all there was and they were everywhere. I picked one that had an article about the Cleveland Indians on the cover, it made me feel at home.
He came in and I lay down on the table and he put one hand on my shoulder and one on my wrist and moved my arm around to test the range of motion. Apparently he was impressed.
"Look at that! Do you play softball?"
"I did when I was a kid."
"Were you a pitcher? I bet you could throw really hard. See how far your arm comes back?"
"Well, I guess I threw pretty hard..."
"I wish mine went back that far! Were you always flexible as a kid? Double jointed?"
"No not at all! I was always the least flexible person in my dance class. I tried so hard to stretch every day but..."
"Usually this kind of injury happens to people who are hyperflexible."
"Well that's not me. Is there anything I can do about it?"
He said he'd write me a prescription for physical therapy which helped a high percentage of the time. There was also a surgery option but I didn't want to think about it yet. At the time it wasn't very painful.
He gave me a printout briefly explaining my diagnosis of "hypermobility" It said it usually happened to athletes and the elderly.
"So how did it happen to me?"
"I don't know. Why do you have blonde hair and I have brown?"
I asked if it could have anything to do with my CFS, maybe poor circulation, but he waved me off. "No! How could this have anything to do with CFS?"
I thought about asking, "Do you know what CFS is?" but didn't bother.
I never used my prescription for physical therapy. I told him I was at USC, and he told me to go to one of the sports physical therapists there. This made no sense to me. Whatever treatment I got would really for people who had "injuries" as in, you could remember a specific time when you injured it. This had happened gradually and with no outside cause, so I wasn't sure if physical therapy could help any. I was convinced it was some kind of insidious symptom of the CFS.
Now I'm fortunate enough to be working with a physical therapist in my neighborhood who's been through CFS. The click is still there but it's gotten a little better, along with the pain and soreness.
When I got really bad, when I couldn't eat and stayed in bed all the time, all of my joints clicked, my other shoulders, my elbows, my knees, my hips, my neck, and finally I could feel individual vertebrae clicking in my spine when I stood up. It freaked me out. Thank god it's gotten a lot better and now it's mostly just my shoulders and elbows. And sometimes the neck, which freaks me out the most. I make a point never to let my head hang backwards, in case it snaps when I pull it up again. It doesn't really hurt, but it's...weird.