Hi guys,

I came upon a discovery- Exercise seems to be improving my MG- even short-term!

Since I started reducing my dosage of prednisone, I've felt increased strength in the muscles that weren't really affected by MG. My cognitive abilities have improved as well, as well as energy levels. So I have all of this pent-up energy at times, and I've wanted to burn it somehow, so decided to do some aerobic/dance for a few hours the last few days.

What I've noticed is that when my heart rate goes up, if I was having weakness in my tongue/palate previously, it goes away for the duration of the exercising. Is that weird, or what? It's like I'll barely be able to move my tongue, then I'll start jumping jacks or something else that I don't know how to describe (bad at exercising terms), and I'll be able to move it again.

I trolled around the net and other MG forums, and found that others had a similar experience. One person theorized that because the heart's pumping harder, this increases blood flow much more and maybe spreads out the antibodies, almost diluting them. I don't know if that's true or not, but it seems to work. I also notice that when I start the exercising, I'm weak, but then my overall strength/endurance increase throughout the remainder of the exercising. I don't really get weaker as I progres, but get stronger at first, and maintain the same level of strength throughout (in the other muscles, like top of arms and legs).

I'm really excited about this because I feel great that my ability to exercise is increasing the more I'm doing it, thereby improving my health, and it also seems to help the MG.

I hope that after a few months of this, maybe I'll get much better, and who knows. All I know is that it's making me feel better mentally, emotionally and physically.

I hope you guys are doing well!
Nicky

That sounds very encouraging. I really miss exercising but I might try to ease back into it!

That is wonderful to hear! I am so glad it is helping you, anything that makes us feel better is great and I hope you get stronger and stronger!

Nicky,

This is great!

My experiences are similar to yours, although I can't do to much aerobic exercises for some reason, I have noticed that exercise does seem to help my MG.

I think it does have something to do with blood flow. My worst days are the days when I sit around a lot or if I work too much at doing any one thing. My best days are when I mix in small amounts of exercise with relaxation between.

Thanks.

I don't want to be a downer ladies, but please take it slow. This disease can sometimes turn around and bite you in the butt!

Big Hugs,
Pat

Thanks, guys!

I wish that we all lived closer to oneanother so we could exercise together at our own 'MG' pace.

P.S. Wouldn't it be cool, though, if we could all somehow meet in person? I think that it'd definately help with the isolated feelings, and even beating the severity of the sx just knowing that you could meet other sufferers like once a month or something.

Nicky

I would love that Nicky! We've all become so close, even if it is just over the internet. We sure do share a special bond that others couldn't begin to understand. If it weren't for this horrible economy, we might have been able to pick a state to all get together for a weekend. Of course that wouldn't help our members in other countries though or those too ill to travel. Oh, well it sure would have been fun!

Hugs,
Pat

Sorry, guys, I'm going to be a bit of a downer.

Exercise in general is good for MG because a stronger muscle helps. But people like Tyson (sorry, you are a good example right now) should NOT exercise when their MG is bad.

I'm just concerned that someone might read this and think they can get their autoimmune disease better by exercising. I know that YOU guys "get it" but what if someone hasn't done all the research?

On a more positive note . . .

If you haven't tried the "Body Blade," it is simply amazing. I did a bunch of research before I got it. It is simple. You can use it sitting or standing. You get more bang for your buck/time. It exercises more than one muscle at once (which could be bad for people with MG). It's fun. And it's relatively inexpensive (shop NBC has a good price).

I'm jazzed about it. It's a lot of fun to use and, therefore, motivating.

Sorry to be a downer, Nicky, but I don't want anyone out there going into a crisis. I think exercise may be one of the most frustrating things about having MG.

Annie

Yes, it would be VERY cool if we lived in a housing area built by Warren Buffet or Bill Gates (for free) that included free transport to anywhere, including MG experts.

Hi Nicky,

I have been researching this question of MG and excercise ever since I became ill. I have read ( I believe) everything that has been written about it (very little really), I have consulted sports physicians, I have used various techniques ( such as movement notations) to try and find the optimal excercise plan for me. I have tried inferring from marathon runners, and consulted a marathon trainer. (as the issues are similar in many ways, only for them it is 40+ km and for us possibly 400 meters). I even had a formal excercise test done to marathon runners to assess my VO2 max. (he did it twice within a month, because he couldn't believe the results), and almost forced him to give me a training plan, based on my abilities. ( I have to admit that he was reluctant to do it, seeing the results of my excercise test, and the way I collapsed after 5 mintues or so of doing it, and warned me to rest the moment I feel even the slightest shortness of breath).

I realized with all my experiements that excercise (like many other things in MG) is a two sided sword. it can make you feel much better (just like you describe) but can also rapidly and almost unexpectedly make your condition much worse.

I think that the best advice I got on that matter, was from my neuromuscular pulmonologist. she said to me that any activity that requires more then an hour to recover from is too much for me at that given moment. and this level of activity can change significantly from one day to the other, or even on the same day. this rule of thumb really helped me pace myself.

of course its not scientific, and there are times, when I could probably do more and end up doing less, and vice versa. but, overall it gives you some sense of what you can and can't do, and how to maintain your activity level without crashing.

of course this is totally different if someone is in remission, or has a very good control of his/her illness, which is not the case for me, and has never been for more then a few brief days every now and then. but, I belive that even a healthy person should not exauhst him/herself beyond a certain point. and probably recovering within an hour is a reasonable rule of thumb for everyone.

alice

Hi Nicky
we all have a different story and our MG effects us in different ways .
but to feel good mentally and the other things has to be great and as a ex marrathon runner its about finishing no matter how differcult it gets its not just the excercise that makes us feel better but even when something special hapens to us like good news that to can have a positive reaction on our syptoms i see your still on predisone that must help as well
when i have a bad day not able to do anything i just know its going to be for a little while and will past the key is knowing your limits but anything that makes you feel good is as good as a drug and i to think it would be great if bill gates could help us to all meet lol
don't give up when you have a bad day as the next can be good
alan