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Re: Working Out With Myotonia

Increased size doesn't mean increased stiffness at all.

And your muscles will probably grow faster than normal.

Type of Myotonia: Thomsen's

Country: USA

Re: Working Out With Myotonia

Hi Stephen,

I have recently joined the forums again after being away for a few years. I'm not a physician or dietician in anyway but if you don't mind I just want to offer you one little bit of advice.

Getting bigger muscles is fine.....but just don't get fat down the line. A lot of people who lift weights (and get bigger) need to maintain that in order to look fit and to be healthy. What happens after you spend a good amount of time doing that and then stop (due to laziness or fatigue or anything else that could happen). All that extra weight can easily turn to fat. Suffering from the myotonia is one thing but suffering with it while being overweight is aweful. I say that because at one point I was 18 like you and back then was around 160 pounds. Now I'm 33 and up to two years ago I weighed almost 200 pounds. I was borderline fat which made the myotonia MUCH worse and more difficult to deal with. Now I'm back to 170 and though I'm not 18 I feel MUCH better than when I was 200 pounds.

Just giving you a little perspective my friend:)

Type of Myotonia: Unsure (Becker's or Thompsen's)

Country: USA

Re: Working Out With Myotonia

Stephen:

I have Becker MC and while I used to be very strong when my myotonia was pretty severe, before the onset of the myotonia part of the disorder, I had some "weakness", and as I got older I developed muscle weakness/stamina issues. That kind of corresponded with the myotonia dropping off, though it isn't always one or the other. I've had days where I had myotonia and weakness.

I spent much of my early 20's at the gym, and at the time, my legs were still very strong...I could do multiple reps/sets of 180lbs on the interior hip abductor, and 400lbs on the donkey calf press machine. But I couldn't seem to do as much as other women on the leg press, ironically, and my ability to build upper body strength was limited with the exception of my interior deltoids. I got up to 20 or 25lbs dumbells on that at one point, which seemed to be about what most guys did.

But the most I've ever managed to bench was about 65lbs including the bar, which almost went wrong, and I recall a woman much smaller than me doing 75lbs multiple times.

I'm now in my early 30's and have been going to the gym again. I've lost a lot of muscle mass and strength, and while I'm sure some of that is from not having done strength training for a number of years, I believe a lot of it is also due to MC.

In my 20's, I focused on free weight exercises. These days, I've been focusing on core body strength exercises like plank, side plank, wheelburrow, and superman. I also do some twist punches on the double cable cross over machine to work my core body and upper body muscles simultaneously. I use weights I can do 15-25 reps with because if I start with weights that are too heavy, or if I increase the weight too fast, I will lose strength. So I keep the weight the same and increase the reps before increasing the weight. This is actually what I did with the incline interior deltoid press years ago.

I don't feel I make nearly as much progress as most women would make and it can be a bit frustrating at times. Also working against me is the fact that I'm an endomorph. I have a great body type for surviving famines, but not much athletic.

Still I feel I've made at least some progress over the past few months, though probably not half the progress most people would make for the same effort.

My advice to you would be, try first before you conclude that something doesn't work for you. You might very well be able to build strength just as easily as others using standard routines.




Type of Myotonia: Becker

Country: USA

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