Quote:
Originally Posted by Nicknerd
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 |
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