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Re: Working Out With Myotonia

I have Thomsen's, and while I plateaued in a way that normal people don't, I also bulked more (even as a woman) and lifted a TON more with my lower body than other women could. Upper body, not so much. I plateau FAST there--85lbs, and that's it for bench press. It's like a wall I can't get past.

But lower body--I'm not even sure how much I used to do with calf raises, but it was more than anyone on the football team. And I could squat 300lbs, though I did it slowly and carefully and quickly decided that 250lbs was safer on my joints. I could do more on the abducted machine, a back extension machine, and the crunch machine than the football players, too. The summer I hit the high school gym a lot, they spent a ton of time bench pressing and doing bicep curls and pretending that half the equipment didn't exist as long as I was in the room. LOL.

All that said, I have always been a shockingly slow sprinter, as in morbidly obese girls beating me, and in long distance, my muscles just work too dang hard to keep it up for long. So I can't ever run more than 3.5 miles. EVER. With endless, excellent training. My body just won't do it. And I can't go faster than 6:50 for a single mile and 7:00 for two miles. Body just can't. An average girl with enough motivation could beat that in a few years of training. I can't, ever.

So exercise is GREAT for you. Don't try to work a spasming muscle with lots of resistance--work the spasm out first. Then you won't hurt yourself. Overexertion can cause rebound myotonia, at least for me, but exercise tolerance increases with training.

Type of Myotonia: Thomsen's

Country: USA

Re: Working Out With Myotonia

I used to be able to walk forever but run, no. I once worked up to a slow, cumbersome walk jog of a distance of 1.5 or two miles and only bad things came of it.

Recently I've managed to walk jog 1.5 miles home. But it's down hill and during the cooler part of the day. I would say I'm bad at running because I'm an endomorph and most of the mass is in my legs, but my mother is a petite mesomorph with skinny legs and could never do more than 1.5 miles either. I just don't have the genes.

Type of Myotonia: Becker

Country: USA

Re: Working Out With Myotonia

The tightness of my knee ligaments don't let be run anymore. I can't seem to get them to relax no matter what I do! Not enough. And PTs just say, "Huh. Sucks to be you." Nice.

I always had very high proteinuria when I exercised heavily--I think because it was SO much more work for me than for other people. I've done a 5k. It my best, I could run 3.5 miles--ok, slowly jog 3.5 miles! But I've walked more than twenty miles in a day several times, and at quite brisk pace.

Type of Myotonia: Thomsen's

Country: USA

Re: Working Out With Myotonia

I have to say that as a personal trainer and rehab therapist I saw a lot of "normal" people who had issues with tight tendons and other muscle/ligament/tendon issues. We tend to blame everything on MC, but the general population deals with many of these things, too.

I think genetics plays a big role in how much and what kind of exercise we tolerate and how we respond to the wear and tear over the years. Not just MC, but many other inherited tendencies which can affect how we heal from injuries, surgeries, etc.

I have poor exercise tolerance because I have low phosphorus levels from another genetic disorder...I can't make enough ATP to keep up with the demand. I still stay as active as I can, but pushing too much is actually life-threatening for me because it affects my heart.

So I do encourage exercise but realize that each person has a unique set of genes that are going to determine how they react to it, especially when they have myotonia.

Jan

Type of Myotonia: Thomsen's

Country: USA