Celeste, I think it's so sad that doctors don't seem to get any joy out of solving their patients' problems. Why spend all that time and money studying to do a job when you can't be bothered to do it well?

I wish we could all afford more comfy beds like Sleep Number beds. I can't. I do get hip pain after sleeping, especially when my MG is worse.

All I can tell you is what I do to try and help myself. I sleep with my head slightly propped up, so that my breathing is better at night. Two pillows only. If you elevate your head too high, it can throw off your back. I also have a pillow behind my back that supports it. I already had that in place when the PT I saw suggested it. Our muscles get weaker when we sleep (anyone's do, not only MGers) and supporting our spine really helps.

I also have a pillow between my legs/knees. A longer than normal pillow helps. The pillows I like for my head are Sobakawa pillows and a micropedic pillow. I have a neck injury and they really give my neck such good support, which is good for the rest of my spine.

I massage any "kinks" that do arise from sleeping on a mattress that isn't the greatest (are any of them?) as soon as possible or things end up in a vicious pain cycle. I take acetaminophen when needed. Staying on top of pain keeps it from getting worse. And that's a very complicated issue that I don't have arm strength to type up.

So I set myself up for success, as much as possible. Even then, I still get pain. When muscles are weak, pressing on them while sleeping can cause circulatory and nerve issues.

Did any of the tests the rheumatologist did come back positive? Did she give you any impression of what could be going on? Any tests can be affected by drugs you are on too, so keep that in mind. Plus, just like with MG antibody tests, inflammatory tests/markers can fluctuate from time to time too.

Don't make changes too quickly to anything you might be sleeping on. Try changing one thing at a time to see what helps you sleep better and reduce any pain. And I sound like a broken record but PT can help assess ways to help reduce the pain too!


Annie