Exercise improves MG?
 

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!:winky:

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!:grouphug:

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!:D

Hugs,
Pat

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

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. ;)

Hey,

No, you are right, Annie...Tyson actually came to mind when I started my post and I was a bit worried about it (sorry Tyson!:o)...If you've got diaphragm weakness, I definately think that you have to be very careful with exercise, avoid it, or be careful in general, no matter where the weakness is...We have to listen to our bodies, and know when to give it a rest...

My sister got this 20-min. aerobic video of the woman from 'The Biggest loser.' She's going to bring it over on Thursday, and we're going to try it out...

Do any of you guys know what is a good exercise for the back of the thighs? The front of my thighs have developed some muscles, but the backs are sorta dumpy...lol...I'm able to exercise my butt, thighs, calve muscles, but those back of the thigh muscles are begging to be uplifted...Also, what's a good one for back fat....I think that the Cushing's introducing itself in the lipodystrophy depot, and it hasn't been welcomed! lol

I so agree, Pat! But the net will have to do, which is okay!:)
Nicky

Nicky

I just received two Yoga DVD's I ordered from Amazon.com at a very resonable price. 'Yoga For Inflexible People' and Yoga for Weight Loss...beginners & beyond. Now I need to get an exercise/yoga mat, because my Mickey Mouse beach towel just doesn't cut it!;)

Hugs,
Pat

I went swimming this morning, with my Mum and Aunty. I use to go on my own, but driving afterward is a struggle. It was soooooo very nice to be in the pool, which was all but empty. I walk half the length of the pool and very slowly swim the other half.
Whew I am tired, but damn I feel good mentally. So I think I will be shoofing off with Ma and Aunty 3 times a week from now on. But don't fear, I won't push myself, if I'm tired I shall simply relax, it just seems to have a soothing affect on me, wish I had a pool in my back yard.

Hey Nicky,

Romanian deadlifts are really good for the backs of your thighs (hamstrings). Just be sure to watch the video well before doing it so you don't pull something. Your lower back gets a workout with it also.
http://www.bodybuilding.com/exercise...anian-deadlift


Keep up the good work (when you feel up to it)! It is great that you are feeling well, and with the exercise I hope you get even stronger in the coming days.

:hug:
Kristy

When I first saw this, i intially thought, sign me up! Of course. But yeah. I agree with some people, whom (not to downsize their mg atall) can excersize without going into crisis, or having breathing difficulties, I think it's a great idea. Especially mentally, as you can get very down on yourself. Yet pushing yourself too much, like annie said could lead to a devistatinh abyss of symptoms that are hard to come back from


Yet i wish I was one of those persons who could excersize, I'm
not and need to deal w it.

Thanks for thinking of me though:)

Hi Tyson,
 

Hang on in there its early days. You will get there in the end. Someone once told me MG is a marathon not a sprint. Its hard but you will get there.

Love
Rach

Redtail- I love swimming...I haven't actually gone in ages, but even with long lapses between swims, I feel at home in the water...The best is swimming at the beach (as opposed to a pool)...The bright, warm sun, the breeze, the cool sand...Just floating is so nice...:)

Thanks, Kristy...I exercise at home, so I'll have to get some small weights and try out those exercises...My sister said that squats should work for those muscles, but I don't feel it when I do them in my hamstrings, only my upper thighs and butt.:wink:

Tyson- Don't worry- when you find the right meds., or they start kicking in to full potential, you'll be back to exercising in no time...I came across posts from other guys around your age with MG on other forums, and they also take either Imuran/Cellcept/prednisone and they were back to their exercise routines once their meds. kicked in and their symptoms were minor (compared to before)...Don't worry, time is your friend- listen to Rach.:hug:

Pat- Yoga is fantastic, especially for strengthening the muscles around the joints, which is what we really need...Not sure if you're taking prednisone, but the yoga will totally help with counteracting its osteoporosis effects.

I think that the breathing exercises are also good for getting to know your breathing...Even if you're weak in that area, it'll help you increase your abilities by strengthening other muscles maybe not used as much for breathing, making them better back-up...It also just makes you feel calm/relaxed...I'm not very good at the meditating part, though...hehe

Nicky

I know i know. Time time time. Thats all anyone says, and yet that seems to be the only thing that works. you all have had this much longer than I. So ill trust that. Can you show me these posts you talk of? Id love some hope.

Thanks.

http://www.mga.superbuilder.net/boar...516/551708.htm

^Not sure if this guy has breathing weakness, but he's running a really long marathon-kinda awesome (he's 26)

http://pages.prodigy.net/stanley.way...a/stanstor.htm

^This one is the most inspiring for me...I really think that his exercise has helped him manage his MG so that the severity stays at sorta a 'tolerable' level

http://www.medhelp.org/posts/Neurolo...is/show/896598

This one gives advice from a neurologist's point of view on exercise and MG...I think that this guy's healthy life-style has prolly helped him manage the disease too...

It's hard to say about all this, especially considering you're young and have been so active...So I'm sure that living a sedentary life style doesn't predispose to getting it, and even being super healthy doesn't help in preventing it, but how you carry on after makes a big difference, I think...Besides, if mood has anything remotely to do with it (or emotional stress), exercise helps maintain a healthier base line in terms of mood, I think, so that's to our benefit...

You'll back get there...Try and find things that give you the same pleasure through work -reward...Like buying a big bag of chips, then eating it! Just kidding...Maybe doing something creative, then sharing it with others...This can provide a lot of pleasure too...Even catching up on reading, listening to music, playing music, all kinds of things.

Nicky

Whew, over did it with the swimming, that'll learn me!!! I'm a bit wiped out today, but I feel good mentally. So I think the next swim will be much less exercise more floating about enjoying relaxing in the water, sheesh you would think after 7 years I would know better, I guess I just want to be the fit healthy person I use to be..........................

Redtail,

I know what you mean about wanting to speed things up so you can get back to where you used to be...Then you end up with a really bad Charly horse, or just feeling plain wiped out...Don't worry, though...If floating makes you feel good, then you've reached your goal...Before you know it, you'll be able to move around more easilly, and you'll get closer to your target!

:hug:
Nicky

Yes Nicky you are so right. I need to stop myself and slow down, cos that way I will get there sooner than if I just rush on ahead!!!!
Am spending the day with my niece cooking and generally having fun, which is always good for my well being.
Kate

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

excercise inproves MG?
 

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:grouphug:

marathon
 

this is something I wrote a few years ago, when I was still able to walk on my own...
and I think it is still true...

The marathon run

I joined my husband when he went to run in the marathon. Like everything that he did, he did it well. He managed to run within the time frame that he planned and he looked quite refreshed considering the fact that he ran 42 km.
I felt very comfortable walking with the marathon runners. They looked and felt just like me. It is true that they have just finished running a long distance and I have walked very slowly a few hundred meters, sat on a fence and took some pictures of my husband, but apparently our effort was quite similar.
My husband went to have a massage, but I preferred to go back to the hotel. I "stole" his medal from him, because I felt I deserved it after all my "marathons" in the last year. As I was walking I saw one of the runners fall down just a few meters before the finish line. My instincts as a physician made me stop. I could see he started to vomit and appeared some what short of breath, his wife stood helpless next to him. Someone suggested calling an ambulance, but he refused and then started talking again and again about his terrible failure. I leaned down and held his hand. "I am a physician" I said and don't be embarrassed if you need any help, I told him that I do not understand what kind of failure he is talking about. He has just finished running 40 km, and I am sure that if I tried I would fall after the first few meters.
After a few minutes he felt well enough to get up. He looked at me and said "thank you" he then leaned on his wife and walked with her to the finish line.
I thought that my biggest accomplishment in the last year, was to give up accomplishments. Just do what I can, in the best way that I can, and not hesitate to lean on someone if I need to in order to do that.
Maybe I was able to transfer this feeling to the marathon runner and help him and maybe I just thought that I did.

alice

hi alice isnt it funni that 1000's run a marathon and every one is a winner
and most will have gone throu a difficult patch when it would be easy to give up the end is to far!!! then so many will give words of encouragement
then slowly your back able to carry on and finish then many years later
youknow if it gets tough you can see it throu even when its hard to walk just a few feet
alan:)