Could It Be Myasthenia Pain or Something Else?

Once you discover you have myasthenia gravis (MG), there are a lot of learning and adjustments to be made. Then just when you think you’ve got it, you learn something new. It isn’t that you have a new symptom, but you learn that what you thought was one thing, turns out to be something else.

What is the cause?

I’m referring to myasthenia pain. I had extreme edema and weight gain from prednisone. Once I changed medication and was weaned off prednisone, I lost over 100 pounds with the help of diuretics.

Once some of the edema was gone, I noticed muscle pain pretty much all over my body, even my back. I just thought it was because of the edema, but now I’m finding out I may have been wrong all this time!

I sometimes yell out in pain when someone touches me. They would be so shocked about a simple touch. I don’t know if that part of the pain is from myasthenia or not. But I always thought it was either because of all the arthritic nerve pain or edema, which I still have.

Is there a connection?

Learning many other people have experienced myasthenia pain makes me wonder if some of the pain I have is because of myasthenia. That sure would explain things. I have had left arm pain for years now.

At first, I thought I had laid on it wrong and maybe pinched a nerve when I slept. Mornings seemed to be when the pain usually was the worst. It would subside after a while until maybe the next morning or even a few weeks. It always returned, though.

As time went on, the pain in my left arm became worse and lasted longer. Still, I hadn’t connected it to myasthenia! I guess I’m a slow learner, but I never imagined the two could be associated.

Unable to use my arm

Later, the pain worsened and my neck began hurting. The pain wasn’t severe in my neck but it was bothersome, and my arm pain increased, yet again! The longer it went on, the worse it became and the more it prohibited me from lifting and using my arm.

Still, I didn’t connect the dots! After all, I had arthritis, so why couldn’t it be in my neck, as well as my back? Why couldn’t the pain, and the fact I couldn’t lift my arm to even put deodorant on by myself, be arthritis? I’d not heard about pain with myasthenia until recently.

Discussing with my doctor

The left-arm pain is so bad that it’s impossible to lift my arm much without help. My husband has to hold that arm for me to perform simple tasks. I can’t even use that arm to style my hair. When reaching for something above my head, I use my right arm.

My right arm isn’t affected much and I can still use it as normal, but I am concerned that it will eventually be affected, too.

Once it does, my reach will be totally compromised and it seems even the medication I take for nerve pain doesn’t make it go away. This is a great topic to talk about with my neurologist at my next appointment.

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