Leg and body pain @ nites

[PRgirl53]

Originally Posted by PRgirl53

How do you control MG the pain in your body and specially in your legs during the night. I believe that is from all the walking and errands done during the day. What should I do? How much aches or pain can you or I tolerate? I take mestinon only twice a day.

Do you all know that if you have Myasthenia Gravis you can get support from Muscular Dystrophy Association. I found out last week. The web http://www.mdausa.org I have an appointment with them nov. 5 and I am going to ask about what medicines I should not take.

[southblues]

I would be nice if you would share with us what they tell you about medications.

[PRgirl53]

Originally Posted by Ashleigh

Thanks for posting this topic! I have just been a very interested observer on this site so far but I had to comment on this one!

I suffer leg pain at night. It's so frustrating. Mainly the lower leg and usually when I've done a little bit of walking. I'm lucky unless I'm really fatigued I can walk about 1/2 hour without problems. My symptoms are upper body, mouth and eyes. But my problem is that while I can walk ok without problem I seem to pay for it at night. Why??!! I try and walk as its good for me mentally, keeps my weight stable and as I'm on Prednisolone other nasties away. I used to love long, long walks and accept that maybe I won't be able to do that again but I so want to walk at least 30 mins a day.


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Do you take mestinon? They increased for me so I got more energy to walk and do things, but BUT @ night I pay with the pain. I told my doctor that not even a shot of toradol has worked, so I tried flexeril (which is strong and you can buy it here without prescription in Puerto Rico) now my doctor prescribed to me but I can't take it in weekdays cause I take my son to school and it's hard to drive all drowsy. I am using neurontin @ night even that some people with MG say that it's a blocker.

[neutro]

Hi Steph C and PRgirl53,
Yes, I'm beeing treated for MG since 2007, presently with 5x60 mg Mestinon and 8 mg Pred every day (still tapering), stopped Cellcept 7 months ago for lack of results.
The more I drink during the day, the less leg pain I have during the night.
I drink preferably water and cranberry juice (Ocean Spray) plus one glass of wine (french of course!) every day...
Maurice

[StephC]

Interesting, i usually try to drink 3/4 to close to gallon of water day but never noticed if correlation. I will pay attention to that

[PRgirl53]

Originally Posted by neutro

Hi Steph C and PRgirl53,
Yes, I'm beeing treated for MG since 2007, presently with 5x60 mg Mestinon and 8 mg Pred every day (still tapering), stopped Cellcept 7 months ago for lack of results.
The more I drink during the day, the less leg pain I have during the night.
I drink preferably water and cranberry juice (Ocean Spray) plus one glass of wine (french of course!) every day...
Maurice

Neutro, prednisone causes cramps every where in your body plus I was swollen and I gained 60 pounds. I have lost 33 with a doctors diet and I keep going because I know I would be on pred again someday cause I have a lung disease too. My ache/pain is like when you are having a bad bad "flu" or when you are running fever. I am just trying to forget until I fall asleep, since I cant take pain killers during the week.