That is a very good question about the exercise. I suppose the best answer would be that we do what we can, without over doing it, since doing too much can lead to a couple of very bad days. Try spacing your exercise out. Do a little, then rest until the muscles have recovered, then do some more. Spread your exercise out through a whole day, little at a time. That might keep muscle tone up, but hopefully won't fatigue the muscles or bring on a worsening of MG symptoms.
Anybody else got a better idea? I'm open to suggestions.
:hug:

Yep Im open to suggestions to, I went to the physio, and it went well, she said to start of on 10 minute walks(I love walking thru the bush) but no more than 10 minutes, so I went for my 10 minute walk, but think I will have to cut it down to 5, ahh well, little steps, one day I may be able to go bush walking again.

Hi
I think the amount of exercise is very individual for MG. I'm trying to walk, but when I'm going to worse, I walk just 1 or 2 minutes and my strenght is gone. I didn't find yet how to balance the fatigue x exercise. I used to swimm, but now it's not possible.
I read one article about myasthenia and exercises:
http://www.mgfa-mgnet.org/html/exercise.htm
and, although it's not recent, it has things to think...
Hope everybody is well.
Bluestone

I haven't been diagnosed with Fibromyalgia, but my Cardio said he wondered if I didn't have it. He said that it was an inflamation of the fibers of the muscles. Since I have Raynauds, he seemed to think that they sometimes go hand in hand. He seemed to take fibro very seriously. I also have nerve damage-bi-lateral, so I'm not sure what is causing what sometimes.
Oh, and I do know several mg'ers who have fibromyalgia as well. It seems to stand to reason the way we have to work tired muscles.

Have you ever check out Stan Way's site about his personal excercise program. One has to be very careful. I was told walking was the best for us, and has to be done under a care of a doctor.

MG and Fibro
 

:grouphug: I too have MG, since 1991, I have been in remission since 1992. In 2008 I was sprayed by a fire extinguisher and my MG is now out of remission, and I also suffered lung damage, I saw my neuro yesterday and he said I also have Fibromyalgia. I can't take any medications for any of my illnesses due to the fact that I am hyper sensitive to medications. I also am Alpha-1 deficient. I have gone from riding my bike 22 miles and bowling and working to sitting around praying that the pain that has subsided 10 min ago doesn't come back. But I still smile because I know I am alive and have a wonderful family to support me. :grouphug:

Hey Rumpled!
 

You need a rheumatologists' opinion.
 

Hey Kate,

I'm sorry these docs are piling more frustration on you!

My old neuro, whom I felt was generally pretty good on MG and such, kind of jumped to the fibromyalgia dx on me about my pain. I knew some people with fibro, though, and disagreed so off to the rheumie I went.

Fibromyalgia is actually one of their diseases, and it took her all of 5 minutes to say NO - not fibro. The next possible explain for my pain and other additional problems was leftover problems from a cord compression.

This new neuro, however, believes I have one of the polyneuropathies - and some of them are seen also with MG and are autoimmune conditions as well. There are so many different ones caused from all kinds of different things - some B12, Vit E and or Copper deficiences that are reasonably easy to treat.

The one we're looking at on me, however, is a chronic, progressive form that could have been possibly halted had it been caught early. Since I've had it for at least 14 YEARS! now though, it looks like I have some permanent damage to nerves and muscle wasting.

Please ask to see a rheumatologist to either rule out or confirm the fibro, and if it's ruled out, don't let them just throw you into some classification.
It could be something that with early identification you could halt it!

Take care, keep us updated.

Hi Becky,

I have just learnt to live with the pain, as I'm sick of doctors telling me to basically "get over it" Its something that isn't too bad, but frustrating as I'd like to know what it is.
thanks for your response

Personal experience - don't let them put you in the position of "just living" with something you know isn't right!

If my new neuro is right and they had dx'd this second condition on me years ago, I wouldn't be "wasting" as I am now. There comes a point with this that they can't do anything to stop it, but can only slow the progression.

I am loosing muscle mass in several places at a rather rapid rate, and loosing feeling in hands and feet. In the beginning 14 years ago it was just a nuisance, but now it's become the number one threat to my future.

I tell you this not to scare you or give you more stress, but just so you and others understand how vital it is to your health that your docs take ALL your symptoms as seriously as they did when they got your dx of MG. Autoimmune's rarely come alone, per my doc and lots of information on the web.

LOL, and DON'T overdo! Exercise is always important, but I was given a distance of 200 ft total walking distance for when I'm doing fairly well - not when I'm having problems. Go for maybe 25 ft out (50 ft round trip), then wait a day and see how that worked out. As you tolerate the very baby steps, increase until you find your new limit which you will have to test from time to time, as it will get to be further as you go along.

You'll get back to your bush walking as long as you approach it slowly!

Hey Becky?
 

What r the symptoms of fibromyalgia? My reg dr says that @ 50 mgs I shouldn't have any pain, but I always do........I know it isn't in my head.........

I am so confused!

Any help would be appreciated!

Hope you are doing GREAT today!

Can't wait to hear from you!

:hug:Erin:hug: