I have alot of tightness in my back and neck causing pain and stiffness. What kind of treatment is appropriate with MG? I would love to sit in a hot tub, but know that I will become jello. My primary doc wanted to give me a muscle relaxant and I questioned that and she changed her mind. My Rheumy said Botox if I didnt have MG and then mentioned possibly a cortisone shot. Would that be ok? Also, I am wondering if Massage Therapy would be ok or would that be a problem?
Any thoughts?

I use heated bean (or rice) bags. That way I get to control the amount of heat by location. If you want 'wet' heat, soak a towel and then wring it out. Put that closest to your body, then something waterproof like saran, then the hot bean bag on top.

To make a bean or rice bag - take an old sock (no holes!) and fill about 1/2 to 2/3 with any kind of uncooked bean or whole rice. Tie it off and heat in microwave to desired temp. I usu. go for 1 minute or on high to start and go from there. You can reuse over and over if you keep the contents dry.

I'm sorry you're having so much muscle pain. It can happen a lot with MG.

The important thing is to take care of the pain as soon as it occurs. Usually you can find a knot/sore spot in a muscle that is in pain. I have found that kneading out the pain with my hands and/or a massager works the best.

If you begin with a heating pad, you can control the heat and amount of time (i.e., the back). That will help to relax the muscles. Then you can use a hand-held massager to dig into the areas that are really bad.

It might help to have a physical therapist evaluate your situation, and to help you know how to take care of it yourself. Sometimes, especially with really bad or hard to reach areas, it's best to go to PT.

I have an old Panasonic massager, that is similar to this first one. It might be noisy but it really needs to be a strong massager to dig into any area! You might need to do this a few times a day in the area. Do not do it too close to the neck, however! Again, that's why seeing PT is a good idea. They can give you some direction, since it will probably be an ongoing issue.

I've had this problem for years, and the only thing that helps is heat (not too much), massage (ultrasound at PT if necessary), rest, and Tylenol. I have gotten to a point where, if I take care of it right away, I can get rid of it within a day or two.

BTW, have you had your electrolytes or vitamin D checked lately? That can cause pain, too.

Good suggestions, Sue!

I hope your pain gets better soon.

Annie


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Thanks for the ideas. Heat is an ok thing with MG? I am always very hesitant to use any as I thought it can cause added weakness.
My back is so knotted and tight. One of my doctors said that its hard enough to pound a nail in it and hang a picture. Ugh! Not a pretty visual, but quite accurate.
Digging the knots out sounds like torture, but a necessary thing to do. I will definitely look into a hand held massager and talk to my doc about PT. Great idea, thanks!
Oh, and why is this common with MG? Just curious....

It's common because our muscles get weak. Think of a marathon runner, and how they have calf cramps. We just get the cramps/tight muscles a lot sooner! So it's basically an "overuse" thing.

And once that pain cascade gets going, it can make things worse if you wait.

It's a "secondary" symptom of a lot of the NM diseases, like MS.



Oh, and heat is okay as long as it's not for a long period of time and if your MG is "okay." I usually don't need to have it on the area for longer than five minutes to make a difference.