Me and my three younger sisters all have Thomesen's disease. My sister just had a boy, and he was just tested and found to have it as well. Its nice to be bringing him into a family that has already learned the ropes.

I too have a good deal of stiffness, but as I have gotten older, I have learned to take my time when getting up, walking up stairs or lifting things. I find I can do strenuous exercise--although I pay for it later, so I avoid it--but the main thing I have found is to move slowly into something, so I allow my muscles to warm up before I try anything real strenuous.

For example, I can lift a good deal of weight, but I try to avoid lifting it quickly, unless I am warmed up. I do find that I tire quicker than other people, but have learned to make myself stop when I know I am really going to pay for it, if I push much further.

I am curious how far people have been able to push their workout routines. I can usually walk four days in a row and then my body gets pretty tired and I have to take three to four days off. I do find that if I come back to it, I am stronger.

I sometimes wonder if my muscles get stronger, faster during those breaks than people who don't have Myotonia, because the doctors have told me my muscles work three times harder than people without Myotonia, and even work when I am sleeping. Has anyone had any experience with this?

It just seems like with the Hypertrophy, more may be going on during those breaks than is usual, so even though working out may bring some pains with it that are more severe, the pay-offs are greater.

Hi Jim
I recently purchased a walking machine (treadmill, I find it great, as I program it with a warm up and warm down and usually goes for 1/2 hour. When i get off I am hopeless for about 6 hours, every step I take is like lifting a 30kg weight. It puts me off wanting to go back on it, but I am like you and know that i bulk up very quickly. So I will keep persisting and may become the next World's Mrs Bulkiest.
Chris

I wish you the best of luck. One of my sisters has the largest calves I have ever seen on a woman who doesn't weightlift professionally. She is embarrassed by them, but I think its great.

One of her doctor's told her that if she is going to have a muscle disease this is the one to get. It definitely does keep life interesting. Outside of the fatigue and occasional embarrassment, I often enjoy the unique perspective this difference has awarded me.

After I wrote this email I read a reply Jan had made to someone about muscle tearing. I've posted it below.

"Yes, you are probably actually tearing the muscles. In weight lifting it's called ripping but it's usually just microtears that heal, and as they heal the muscle enlarges to adapt to a new stress level.

Because movement for us can be equivalent to quite strenuous isometric exercises we can get these microtears in our muscles just by walking or climbing stairs when we're stiff.

A normal person would increase Type IIB fibers in the muscle and motor units would increase to help with the "action potential" of the muscle. However we have a defect in making that type of fiber and muscle biopsies show them as atrophied or non-existent.

So we never truly adapt to exercise or even our normal movements when we're stiff. This tearing of the muscle is what often accounts for our higher levels of CPK, an enzyme that shows up when muscle cells are breaking down or leaking.

It's frustrating to always get sore and stiff from workouts, but many people with MC enjoy the buff look of hypertrophied muscles without ever having to go to the gym :-)"