Could It Be Myasthenia Pain or Something Else?

Once you discover you have myasthenia gravis (MG), there is a lot of learning and adjustments to be made. Then just when you think you’ve got it, you learn something new. For me, it isn't that I have a new symptom. But I learn that what I 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 are so shocked about a simple touch. I don’t know if that pain is from myasthenia or not. But I always think it is either because of my arthritic nerve pain or edema, which I still have.

Is there a connection?

I have learned that many other people experience myasthenia pain. It makes me wonder if some of the pain I have is because of my MG. That sure would explain things. Especially because I have had left arm pain for years now.

At first, I thought I had slept on it wrong and maybe pinched a nerve. The pain was usually worse in the mornings. But it would subside after a while, and I would have some relief until the next morning. Sometimes the pain would go away for a few weeks. It always returned, though.

As time went on, the pain in my left arm became worse and lasted longer. Still, I had not connected it to myasthenia! I guess I’m a slow learner, but I never imagined the 2 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. Why couldn’t the arthritis be in my neck, as well as my back?

Discussing with my doctor

The left arm pain is now so bad that it’s impossible to lift my arm without help. I can't even put on deodorant or style my hair by myself. My husband has to hold that arm for me to perform simple tasks.

When reaching for something above my head, I use my right arm. It currently isn’t affected much and I can still use it as normal. But I am concerned that it will eventually be affected, too.

If pain starts in my right arm, 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.