Pain/ I may have figured out why
 

I think that I may have figured out what is causing a lot of my pain. The pain is always the worse when I wake up. My right arm and shoulder hurt really bad. I went to a rheumatologist, and she could not find anything wrong.

This is what I think is going on.

When I sleep, I absolutely don't move at all because my muscles only move when I really ask them to because of my MG.

I sleep on my right side.

I am crunching my arm and shoulder.

I am trying to make myself sleep on my back. I actually felt a little better today.

Has anybody else experienced anything like this?

Yep. A memory foam mattress helps immensely.;) Don't you need a new bed for Valentine's Day?

Can't afford it with all the doctor bills.

I have a similar problem. It is so hard to turn over in bed, I only turn once or twice a night with great effort. I often wake up with cramp in my neck and numbness in my arm. To help alleviate it, I got a 2 inch memory foam pad to but on the top of the bed from walmart. I also have several bolster type pillows to prop up my legs and arms to make it easier. It helps some.

kathie

South blues

I have a different neurological condition (CRPS with dystonia, myoclonus, tremor, muscle spasms - you get the general picture of body failure!!)

I struggle both with movement in bed because i have some difficulty with voluntary movement and lots of involuntary movement. I also have a great deal of atrophy because I can't walk - I can manage shuffling around in the house but have to use a wheelchair for everything else. That amount of walking isnt enough to preserve muscle and whilst I have movement problems, I have full sensation and chronic neuropathic pain so the lack of padding really hurts especially over my hips and sacral area where I get a lot of searing pressure pain.

I tried a memory foam mattress topper and it was a disaster for me - it gets extremely hot because it traps all your body heat. Some of the fancy mattresses are supposed to remove that heat but I don't know if they work or not. I also found that with limited movement and some weakness it was impossible to move, roll over, slide over the mattress topper and getting out of bed was an ordeal! It seems to 'grab and trap' you and it was so hard to move.

I found a solution which works better for me. I use a spare duvet (mine are feather filled but man-made fibre is fine too) I put a cover on and lay it over the mattress. If its not enough to be comfortable and relieve the pressure and pain, I put 2 duvets inside one cover to make it a really thick pad. I then sleep on top of that. It costs me nothing because I have spare quilts and duvets in the house, its not too hot and its easy to move around in bed. It makes a thick, soft pad over the whole mattress which i can vary the thickness of so that it effectively relieves enough pain and pressure.

It might be worth a try if you have spare quilts/duvets - it won't cost you anything so theres nothing lost if it doesn't work.

I'm glad you posted, I've been thinking to post with the same question.

Especially my right side is affected when sleeping on that side. It might cause a limp for 1-2 days, my eye is droopy waking up and my arm is so weakened, the fingers curl into the palm. Ditto but much less when sleeping on my left side.

What kind of tests did the Rheumatologist do? Did you have an MRI of the neck and shoulders? I have a breathing issue if I lay on my back, so I have to lay on my side. I will get pain that radiates into my shoulder and neck sometimes so I take my pillow and fold it on the edge to support my neck. I have a bulging disc and a bone spur which gives me problems sometimes.

Seishin, many days I wake up with my face drooping and a weak upper back, so weak that when I walk it jiggles. I think it's because while sleeping I get overheated. The droopiness fades a while after getting out of bed because the air is much cooler throughout the house. :cool:

Thanks for all the answers and suggestions!

The rheumatologist only did blood tests and a physical exam. That is all she is going to do. She is one of two in town. I went to the other one several years ago, and he put me on drugs that made other problems worse. He seems to ignore the patient as a whole; he just does joints.

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! ;)

:hug:
Annie

None of the blood tests came back positive. I know they checked for rheumatoid arthritis and lupus.

She really had very little interest in my problems.