Mel:

I have Becker MC, which tends to manifest more in the legs or in a more generalized way than in the upper body, like Thomsen MC, and I only started developing problems with my hands later in life. There are a few different aspects of the disorder. The most notable is the myotonia itself, which is the delayed relaxation of the muscles. Personally I've found walking regularly helps minimize that symptom.

The difficulties I have with my hands, however, seem to be worsened with use. If you find something that helps him, please let me know!

Concerning other aspects of exercise and physical therapy, he might have to rest longer in between exercises, or even reps, because his muscles can't relax properly, and he probably gets a lot of waste build up in them. A lot of people with MC feel that stretching really helps them....I'm not one of them. For me, stretching as an exercise is generally counter productive because I have a bit of percussion myotonia and the tension causes my muscles to contract when they should be relaxed. I can get a little more flexibility but it makes the myotonia aspect worse.

I also have a lot of core body (torso/back/shoulders) stamina issues. This will eventually result in painful cramping, and muscle fatigue to the point of failure, if I don't rest the muscles when I should. I went to PT for hip/posture problems a while back and I was given core strengthening exercises to do, and while my core body strength did increase, and my abs were starting to look quite nice, my stamina in those muscle groups, with respect to doing every day things, didn't increase one bit.

Type of Myotonia: Becker

Country: USA

Type of Myotonia: don t know

Country: egypt

Maha,

The pain is caused by damage to muscle cells. By taking a medication that lessens the myotonia, you can stop some of the pain. But you also have to learn not to push against the stiffness. Wait for the muscles to relax if you can.

Here are some of the medications that have helped myotonia:

Mexiletine
Flecainide
Lamotrigene
Acetazolamide
Phenytoin
Carbamazepine (I don't recommend this one)
Quinine Sulfate

Ask your doctor about trying one of these. Also it can help reduce the inflammation from the muscle damage to take ibuprofen regularly.

Jan

Type of Myotonia: Thomsen's

Country: USA