Hi everyone I was just diagnosed with congenital myotonia today and I was wondering if it's dangerous to lift weights and/or play sports with this condition? I'm 23 and I was very active before this started breaking me down (I've lost 15 pounds in 3/4 year). Thanks

Type of Myotonia: Congenital

Country: US

Welcome, Matt!

Did you have a DNA test to determine the type of myotonia or just an EMG that showed myotonic discharges?

The chloride ion channel myotonias (Thomsen's and Becker's) don't seem to cause permanent muscle damage in response to strenuous exercise, but the sodium ion channel myotonias like Paramyotonia Congenita do and you have to be much more careful.

Myotonia Congenita should not cause weight loss or a progression of muscle atrophy. This is usually caused by either myotonic muscular dystrophy or another health condition along with MC.

If you do continue to exercise regularly I would suggest taking Acetyl-L-Carnitine to help protect the muscles. I haven't seen evidence that creatine helps that much. Certain inherited mitochondrial diseases that may not produce symptoms in some people may be much more pronounced in MC. Carnitine supplementation and other supportive supplements like CoQ10 can help minimize the stress on the muscles.

In general, it's good to exercise to your tolerance. For us if we "feel the burn" then we're probably tearing some muscle cells and will be sore and stiffer. We don't seem to be able to maintain Type IIB muscle fibers which are what help us adapt to stress.

Jan

Type of Myotonia: Thomsen's

Country: USA

Matt, With Myotonia Congenita you get very large muscles and you do not generally lose weight. At your age I had a body that looked like the statue of David because the muscles got real huge and defined from working out and t they stayed that way. I was a wrestler and that was perhaps the most difficult thing I could have done in school with MC. You tire way, way faster than everyone else because you are not only fighting the other guys muscle tension but also an abnormal amount of your own. it was like wrestling two people at once. The whole notion that warming up the muscles with MC makes you not stiff is not always true, I'm sorry. My experience was that it helped but it did not solve the problem. If you are noticing your muscles getting weaker and smaller despite exercise you most certainly don't have Myotonia Congenita. As the moderator told you, its really, really, REALLY important for you to get more extensive testing to determine exactly what you have. Once you know, then you can tailor something very specific to that condition. You need to live a long and productive life. I would be real careful about running my engine full throttle until I made sure all the engine parts are where they should be. Its risky business right now for you until you get some real answers. Knowledge is power. Stuart

Type of Myotonia: Thomsens

Country: USA

Matt:

As Jan said, you should get the genetic testing if you haven't. There are a few different conditions that cause myotonia and they can't always be distinguished by EMG or clinical symptoms alone.

I have Becker MC, which was pretty bad by the time I was 10. Are there any sports that are/were dangerous for me to do? Yes. Anything that involves acrobatics, like gymnastics, free style skateboarding....heck, skateboarding down the street, parkour, snowboarding, BMX biking...essentially most sports I ever had any interest in doing.

I did used to lift weights though, and basically what I found was that while I do make some strength gains, I don't make as much progress as others, some muscles groups I can't isolate at all, I have to wait longer between sets, and I have to start out with very light weights when starting a new program. If I start out with weights that make me feel like I'm actually doing something, I will lose strength. I have to start with weights I can do 15 or so reps with where I just feel the burn on the last 4 to 5 and I increase it after a week or two.

I couldn't really give you an explanation for this with respect to the biophysiology of MC because it's not completely understood, different mutations cause MC in different ways, and there is high variability in severity of symptoms between individuals.

I'm also a woman though so of course I'm never going to build pounds and pounds of muscle by my own natural graces.

Type of Myotonia: Becker

Country: USA