Pain
 

Hello I am new here, I know how forums go and I know I should introduce myself first :) but I will be doing that later.
My Girlfriend was diagnosed recently with MG and now she is on Mestinon, Ofcourse she is depressed as hell , but what bothers her a lot is the pain , muscle pain especially that in her eyes and other parts.
So I was wonder is there anything , anything at all she/I can do in order to get rid of it or at least reduce it any tips?
:)

Hi Tabun! Welcome to the group! I hope that you will convince your girlfriend to join us, too. Talking about your problems is VERY cathartic!!

Hmmmmmm -- things I do for MG aches and pains:

• Tylenol almost daily (usually at night so that leg cramps won't keep me awake)

• stretch almost hourly -- especially my neck and shoulders (I can hear my spine POPPING :eek:)

• roll my eyes clockwise, then counter-clockwise -- this seems to get rid of some of the discomfort

• exercise when I feel able (and even sometimes when I don't :))

• try to focus on OTHER things -- like prayer, reading, computer, hobbies, TV, etc.

• get on the inversion table and stretch ALL sorts of ways to relieve the discomfort in my lower back, neck, and shoulders (this was some of the BEST money I EVER spent -- Sam's Club -- under $200, if I correctly recall)

This is all I can think of right now -- will post more later if my brain "pops" into action :D

Well, she really needs to avoid any muscle relaxants (robaxacet etc.) Tylenol, Advil etc to reduce the pain should be fine.

Doctors will tell you that pain is not a symptom of MG (because what it does does not in itself cause pain.) However, when you're using different muscles to compensate for those effected by the condition they're bound to get tired and sore too. I found that when I was able to work out my pain was greatly reduced - build up the muscles that have to compensate for those being shut down. If she's able to or going to do work outs, make sure she does them at a gym where she can stop as soon as she's feeling fatigued. It sucks when you go for a long walk outside and your legs decide they're done for today. And unfortunately with the up&down nature of the condition, a "long" walk can vary from day to day.

Did she have eye pain before she started taking Mestinon? I ask because Mestinon gives me eye pain. I've read that it can also cause muscle cramps. I was taking way too high a dose of Mestinon for a while, and it was making me weaker.

As for the other muscle pain, it's true that myasthenia can cause sore and strained muscles, but if pain is her most troublesome symptom, I think it bears looking into some more. Does her neurologist believe that her MG is the cause of the pain? Even if the pain and the weakness started at the same time, it's important not to just assume it's the myasthenia.

Can she see a neuro-ophthalmologist, or at least a regular ophthalmologist (eye doctor--not just an optometrist, but an M.D. who specializes in eyes)? Some MG patients with double vision that causes eye strain have been helped by prisms.

Is she getting any treatment for her myasthenia besides the Mestinon? There are a lot of other treatments that might help.

It's great that you are so supportive. Myasthenia is such a rare disease, and it's invisible and variable, so it's common to feel very alone, like no one understands what you're going through. Having a boyfriend who's reading up and asking questions is a gift.

Abby