What MG Pain is to Me and How I Deal with It

I know there are many of us with myasthenia gravis (MG) that suffer with muscle pain. I don’t necessarily want to talk about how much pain I have, since pain and pain tolerance is very personal. I want to talk about the type and location of pain I experience, including what I do to try and tolerate or relieve it.

My pain with MG

I have neck, shoulder, arm, and hand pain. The pain is located mostly in my neck on both sides. It radiates to the shoulders and arms. Usually, the pain stops at the elbow, but sometimes it does involve my forearms, hands, and fingers, too.

What increases my pain

I hand wash my dishes, which usually doesn’t bother my hands. But when it does, it’s all I can do to hold a plate to wash it. Then when my hands and/or fingers start cramping, I have to stop to rest and massage them. Sometimes it takes a while for the pain and cramping to subside enough so that I can finish.

Usually, my arms hurt more than my hands when I’m washing dishes. I’m in a power chair, so to wash dishes, I flip the footplate up on my chair and get as close as I can to the sink. However, I’m still low enough I have to raise my arms and shoulders in order to wash the dishes. Raising my arms causes more pain in my neck, shoulders, and upper arms. At least I can rest my arms on the edge of the sink, which helps – until I have to rinse the dishes and place them in the dish drainer or put more dishes in the sink.

So why don’t I use a dishwasher? I don’t have one in this house. But I can guarantee you if and when I move again, I WILL have an electric dishwasher! Not only would that save me from a lot of pain, but it would also free up a lot of time for me, too.

Pain and my emotions

When my neck, upper back, shoulders, and upper arms hurt all at the same time, I’m miserable. That’s when I am short tempered and I tend to cry. The pain is generally sharp, but also a nagging ache. It will also stop me suddenly from reaching. Not much helps that pain, short of taking some pain medication that has been prescribed for me. But I don’t like taking drugs, so I tend to let the pain get to the point of intolerance. There’s only so much pain I’m willing to tolerate.

Daily activities

Since I have trouble raising my arms, I have trouble putting on deodorant and getting dressed, but I do it anyway. I go to a doorway and walk my hand up the door casing so I can apply the deodorant – and I can still dress myself.

Washing my hair isn’t bad because I can keep my arms mostly down and close to my body. But washing my back, and combing and styling my hair (at least the back), is impossible. Therefore, styling doesn’t get done. It’s a wonder I can comb it sometimes.

Subtle differences in leg cramps

I don’t have a lot of leg pain associated with MG, as most of the pain is from the nerve damage in my back. But I do have some pain that is different. I’m finally paying better attention to the differences in the pain I have in my back and legs and I think I have found there are some subtle differences, but I’m still trying to figure that all out.

I also have leg cramps, especially when I strain them while cleaning house, such as cleaning the tub. I’ve even tried a little heat and massage to prevent the cramps, but it hasn’t helped. If I make those muscles angry, they revolt and I pay for it.

Since I have trouble walking, I have found if I put my foot on something sturdy (such as a door jamb, cabinet, or even the car tire) and I push, the cramp lessens and then goes away. If you try this, just don’t push on the sheetrock or a weak area or you may end up fixing a hole in your wall!

I generally get the leg cramps when I’m sleeping. When do you suffer most with leg cramps?