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Old 10-16-2016, 09:26 AM #1
winic1 winic1 is offline
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Default Does exercising work?

Will exercising ever improve things?
My PT and doctor keep telling me to "do my exercises" for my back and knees, etc. I do. They don't believe me, because I never seem to make any progress.

Is it reasonable to expect improvement? Or is their massive ignorance showing?
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Old 10-16-2016, 05:48 PM #2
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I've been gaining a lot more strength in the last few months but the JOINT pain seems to be also gaining grounds!!!

My knees are the worse if I sit for more than 15 minutes I have a lot of pain trying to get up but once I've walked a dozen of steps it wears off and as long as I keep moving things are in good shape, no pain is felt, I also have a FROZEN shoulder, elbows, wrist, fingers and muscle also ache but with constant movement I'm OK! If I happen to rest for a while things get PAINFUL again...

I've tried exercising a bit more with no signs of PAIN improvement, I'm not sure if it's being off Prednisone since mid June but the pain seems to be getting worse as time goes by!!! I'd have to say that excersising in my case doesn't seem to make things any better, I think it's a good thing for us to exercise within our limits or capacities don't over do it or you will end up paying the price.

My Neuro has told me that over doing things will.make our symthoms worse, we can be our own worse enemy!!! so just get to know what are your limits and respect them. Every week/month I try to do a little more and seem to be getting better, for example I use to have to nap mid day and now have stopped, I use to need 10 hrs plus of sleep, now I get away with 8 or so...so just listen to your body.
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Old 10-17-2016, 08:25 AM #3
winic1 winic1 is offline
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If I listen to my body, it's saying, "Curl up and die already."
I keep telling it it has to last at least 3 more years so I can get my daughter out of high school. It's not happy with that idea. I don't care. Maybe it knows that if we make it to the end of high school still moving, I'm going to try to renegotiate for four more years to see her out of college.

On top of everything else, i am just tired of being treated like a deadbeat when i am working harder at everything than probably anyone else they have ever known.
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Old 10-18-2016, 04:11 PM #4
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Quote:
Originally Posted by winic1 View Post
If I listen to my body, it's saying, "Curl up and die already."
I keep telling it it has to last at least 3 more years so I can get my daughter out of high school. It's not happy with that idea. I don't care. Maybe it knows that if we make it to the end of high school still moving, I'm going to try to renegotiate for four more years to see her out of college.

On top of everything else, i am just tired of being treated like a deadbeat when i am working harder at everything than probably anyone else they have ever known.
IGNORE THAT'S PART OF YOUR BODY. Just do what you can and try one more rep then forget the rest. You know how much pain you can take.
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Old 10-20-2016, 12:09 AM #5
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I had one physical therapist tell me that the goal of exercise is to slow down the downward progression, which was a pretty depressing thing to say,and probably not true for everyone. I just do what I can, which only decreases slightly over time
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Old 10-20-2016, 01:31 AM #6
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winic1, I get what you mean by "curl up and die already." MG can be relentless and overwhelming. There are days when it's impossible to do anything. I'm truly sorry you are feeling so down. That's why finding things in your life to treasure and love are so important. It may seem trivial, but even enjoying birds coming to a feeder can brighten one's day.

This is the part of MG that many don't talk about. It isn't like other diseases that are "static." Pushing them doesn't result in needing a ventilator to breathe!

Making life easier with paper plates or whatever else is necessary to create "me" time. So much time is spent just keeping up with daily tasks that we often forget to shore ourselves up with good things or stuff that makes us happy.

Exercise is a double-edged sword. On the one hand, muscle atrophy isn't a good thing. But to keep muscles toned, we have to do something. Exercise does help with overall muscle strength, but it can't be done the way most people do it, nor does it have the same impact.

Where I used to live, I had to walk up stairs a few times a day. It was hard to stand to do dishes. Now that I don't have that issue of stairs, I can stand to do dishes (most of the time). In that particular case, exercising on stairs made my legs worse.

The best exercises for MGers are those such as swimming or using a rower (on the lowest tension). They are "fluid," use more than one muscle at a time, one doesn't have to do it for long, and are aerobic as well.

But everyone is different. There are days when lifting a glass to drink is all one can do to exercise.

There really is no other disease like the NMJ ones. It's beyond difficult to exercise if an MGer is not doing well. There are some people on drugs who can do it more often.

You can only do what you can do. And those physical therapists have no frame of reference. You could always ask them if they could do knee bends while coming out of anesthesia (it has a similar effect on muscles).

Try not to focus on what you can't do. Focus on the fact that you are doing what you can as best as you can. Enjoy what you can. Otherwise, MG wins.


Annie
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