Looking for advise on excercise and diet
 

Hi Im new to the forum and found it because both me and my husband need some help with understanding my Myasthenia Gravis condition better and get ways to help improve my lifestyle and health and wellbeing.

I have had myasthenia for a long time now and was diagnosed with it at 8 years old. I'm now in my late twenties. I have used quite a few different medications over the years and am looking for adivse on how best to help myself further.

I would like to help improve my health and exercise but I know that even walking a few blocks can tire me out, so wanted to know what kinds of exercises other people with mystenia do to help keep them healthy and trim.

I also wanted to know if there is any diet advice that I could follow so that it goes well with my excercise or something that would give me more energy and less fatigue.

I hope someone can help with any information.

Sorry about any bad english or grammar, typing on a phone isnt great.

similar systems
 

You don't mention medications so all I can pass on to you is my own experience . I also had trouble walking any kind of distance . After a long period of testing I was finally diagnosed with LEMS . I was presribed an experimental medicine , diaminopyridine and later mestinon . I have been able to build up my endurance with stationary bike work , low speed treadmill and later some weight work . If you live in an urban area try to find a Y.
I wish you luck in your search , I know how frustrating in can be finding answers.
jim

My neuro recommended water aerobics - though you must make sure your instructor knows about your MG!

Their reasoning was: the water helps to keep body temp in check during exercise, the water acts as both support and resistance (so you can work your legs while your trunk and arms are more buoyant), calorie burn is quite decent.

Shes curently taking Azathioprine and Pyridostigmine I believe, not sure about the dosage. But she wants to get off the Azathioprine as its found to be harmful for a baby.

Will look into the Water Aerobics, thanks for the advice.

Are there any other things you would recommend.

NewlifeS's husband

I find that light weight lifting at the gym is good for me. I have never been able to keep up or make it through an aerobic class or to make it more that 5 minutes on a treadmill, but I can lift a weight 10 reps and then rest for a minute. I worked with a personal trainer for a few months to learn different exercises and the proper posture for workouts. A workout that would take someone else a half hour, usually takes me an hour, but I get a great workout and my muscles are toned. I also like the easy yoga classes.

Swimming has been the best feeling for me. Didn't tire me out as much as I thought it would, and the wTer feels great on aching muscles. Biggest problem for me was having the ability to make it out of the house and to the pool. Good luck!

I may upset some people here, but FWIW, I get REALLY upset with doctors who "recommend" exercise for patients with MG - it tells me that they truly don't get it. Our problem isn't that our muscles aren't "strong" enough - our problem is that the receptors that take in the chemicals that make our muscles work have atrophied.

All the exercise in the world is not going to change that.

For people with MG, exercise can - quite literally - KILL THEM.

If we exercise, we are requiring our muscles to use up all of the "juice" in them. Since our receptors are unable to pull in ACh at the same rate as everyone else, once our muscles have used up the ACh that is there, that is it - our muscles shut down and we collapse.

The frightening part is that one set of those muscles is the group that allows our lungs to expand and contract. If all of the ACh in our system is used up, those lung muscles CEASE TO FUNCTION. If our lungs can't expand and contract, oxygen cannot get to our brain and WE WILL DIE.

The only way to save someone with MG whose lung muscles quit working is mechanical ventilation.

It is vitally important that our doctors understand this - I get so upset with my neurologist when she starts to tell me what "exercises" I should be doing to prevent my muscles from atrophying. My muscles are plenty strong - I can tell that just by flexing my arms (a gluten free diet helps keep muscles strong).

Exercise isn't ever going to build up our endurance, because the problem isn't our muscle tissue - our problem is the neuro-receptors which are ON our muscles; they don't work. All the exercise in the world will never change that.

I don't know about you, but I do not want to find myself on a ventilator. I am unwilling to meet someone else's expectations of what I SHOULD be doing, because unless you have lived in a body with MG, you really and truly cannot understand how tiring the least bit of exertion can be.

We have to learn to give ourselves permission to take it easy. If the ones we love don't want to lose us, they HAVE to understand that we cannot do the things that other people take for granted.

We aren't lazy, we aren't "out of shape", and it isn't that we don't have the drive/willpower/desire to do more - I rail against the limitations of my body every single day. But I have learned to accept the fact that there isn't anything that I can do to change those limitations.

Teresa, I completely understand and agree with what you are saying.

I never meant to indicate that my neuro was suggesting exercise would improve MG. I was the one asking for what I might be able to do to stay active. (Example: I had already given up horseback riding and jogging - - cause I ended up short of breath and REALLY weak!)

Neuro suggested the water activity and resistance work with those stretchy bands...at a pace I could handle.

So I do those things and I still golf (ride cart, and rarely can make 18 now) 3 or 4 times a week and work in the garden / yard when I can.

None of this activity is with the hope that I am doing anything to improve my MG. For all I know, I may be wasting the receptors I do have! But I'm doing what I can, when I can, as I can for ME....so I don't go bonkers!

I'm in 100% agreance with you. It's very irritating having to explain to people and drs. That excersizing isn't the healthiest thing for us Mgers. Luckily my Nuero told me straight up that excersizing on my own or with a physical therapist is the opposite of good for me and he would not recommend it. However he did tell me that if I'm feeling strong and I want to excersice, make sure I'm supervised.

To the original question. The only way I've found that I can lose weight without excersizing , is by eating lots of whole grains, drinking only water or tea, and eating veggies and fruit. It's kind I common sense, but eating processed/fast/sugary foods really packs on the pounds. Whereas whole natural foods don't tend to add extra that my body doesn't need. It's tough as a lover of food but it's possible to do it without excersize and without starving yourself.
Jess

I don't really know what to do about exercise. My doctor told me to give up horseback riding, but I am not going to do it. I don't ride as long as I used to. I don't jump any more. But my horse is one of the main things that I live for. I had no problem giving up jogging. I hate jogging and always did.

For real!! I have people that keep telling me to exercise, or start lifting weights so I can become stronger. I have explained this, and explained this, but they just don't get it. Thankfully my MG specialist that works at the MDA hospital near here understands. He has told me numerous times on how dangerous exercise can be for MGers. Many more doctors need to be more knowledgeable on this issue. It is extremely important!
:hug:
kristy

I seem to find that my extended family is not very understanding. They can't understand why I don't want to go and do all the things that I once did. I seem to be lazy and not wanting to participate in family activities. Then when I do try to do things and I get extremely short of breath, they tell me it is because I don't get enough exercise.

Use a mounting block to get on. I get my husband to saddle the horse. Once I get up, I'm ok, that is unless I fall off. It only happened once as a result of sudden weakness. Once we start going, it's not that hard. If you just ride along slowly it is not that much exercise. I don't think that I am up for jumping any more.

My horse and I grew old together...but when it got to the point where just grooming before tacking got me so exhausted I didn't have the energy to ride, I started the journey of trying to figure out just what was going on.

We retired and I spoiled her for 3 more years - until she was 28. What a wonderful 25 years we had together!

I hope I didn't come across as "anti-exercise" in my mini-rant the other day; if it makes you feel good, by all means do it!

I just don't want people to feel guilty if they find that they don't have the energy to exercise - I tell my family it's kind of like a phone battery or a laptop battery; the more you use those devices, the faster they run out of juice. You can't do "condition training" on a phone battery; when it's dead, it's dead. If you don't recharge it, you can't use your phone.

MG'ers are the same way - only "dead" might really and truly mean DEAD. No recharge, no do-over, nuthin. If our batteries run out, we're pushing up daisies.

And then they'll feel bad, huh?
*does best imitation of sulking 5-year-old*

P.S. Don't think of it as "lazy" - think of it as "conserving energy".... :D

horses
 

I refuse to give up riding, even if just walking! Last week all I could do was brush her but it sure was nice to get out and see her and give her and her pal some apples. :)

It seems that there are several horse people here. Cool!

thank you for this!
 

I just wanted to thank you for putting into words everything I have tried to explain to close friends, my EX, and family who can't or refuse to get how exercise can affect and exacerbate my MG. They are quick to tell me how much stronger I would be if I went to the gym or worked out. I use to be active and social and my MG was pretty much controlled with medications and treatments I was diagnosed in 1999. However the last 4 years despite increase in meds/txs/new meds, I've been unable to ever get that "second wind" that I use to be able to get and maintain. I appreciate, appreciate your eloquence of this subject.

exercise
 

Some days I feel like walking a mile or so and other days I am just "tired." One doctor told me to "just stay active." My husband thinks the more exercise the better. Advice please.

I'm new to this, and have certainly gotten it seriously wrong at least once, but I think the best approach is to listen to what your body is telling you. On the days you feel good, do what you can. BUT - make sure you leave a large reserve of energy/acetylcholine. I recently had a really bad day, but was still somewhat active. I ended up in the ER having difficulty breathing. If I have another day where I feel like that, I'm going to rest as much as I possibly can. If you become completely sedentary, that is going to be detrimental to your overall health.