Current mood:

drained

Huh.
Hypermobility syndrome: Wikipedia
Hypermobility syndrome and pain
Central pain syndrome

I sat down on the examination table, and without warning Dr. B grabbed my thumb and bent it all the way back until it touched my forearm.

"Ow! Fuck!" I said.

"Ah-ha," Dr. B said. He then grabbed my pinky and bent it way the hell back until I thought it was going to snap off. "This is why it pays to read," he said. "A whole bunch of articles just came out about people like you. Something about the way you move was bothering me, but I couldn't put my finger on it until now."



So as far as I can tell, it goes like this:

I am floppy-bendy. I have always been floppy-bendy. Many of my joints can bend quite a bit farther than they are really supposed to. This is all well and good; I have always been a little injury-prone, but not too much. Apparently a lot of bendy people can go their whole lives without anything worse than that.

But. I've been involved in some kind of activity since kindergarten, whether it was soccer or volleyball or martial arts. I've always been pretty fit. About a year ago I stopped going to karate because I wasn't getting along terribly well with the sensei and work was driving me crazy. I figured walking back and forth to ML was enough exercise in the short term, and I'd go to a real gym after college. Slowly but surely, I became actually really Out of Shape for the first time in my life.

And then in late January I hurt my ankle for no apparent reason, and the injury didn't go away, and the pain spread from one joint to all of them in less than 48 hours. And I've been miserable ever since, and every blood test and x-ray and MRI has been a big fat negative.

Tendons aren't just supports holding the joints together: they are also dense bundles of nerve endings, and are quite sensitive. When tendons are congenitally weak, even a microscopic injury can be very painful. The joint is then favored, used less, and the muscles and tendons around it become even weaker, exponentially increasing the chance of further injury and greater pain. In some cases, this makes the central nervous system freak the hell out and snowballs into chronic pain all over the body. It spreads from the joints to the muscles and bones and makes even everyday tasks extremely difficult and painful. I don't quite understand how it happened to me, because I'm not a doctor, but the human body is an amazing, wonderful, stupid, stupid thing.

So. What to do? I'm tapering off the steroids; they likely won't help anything. I'm staying on the arthritis meds for the moment because they might still be useful. I'm starting a new pill called Neurontin, which was apparently developed as a (mostly useless) anticonvulsant but controls chronic pain quite well. I'm going to start physical therapy to strengthen my joints; the muscles I need to beef up are just the ones that have been atrophying the most through my enforced immobility.

Best-case scenario, all I have to do is get back in shape and exercise regularly, and everything will be fine; worst-case scenario, I have to stay on Neurontin or one of its cousins and come to terms with the fact that I may experience some level of chronic pain for the rest of my life. Either way, it's a damn sight better than no diagnosis. But I am NOT looking forward to the next few weeks, as I will be in a world of hurt no matter what. *cringe* Suck it up, girl. No pain, no gain, and all that jazz.