Originally Posted by teresakoch

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.