Arty,

Everyone seems to react differently so sometimes you just have to experiment with diet, exercise and medications to see what works best for you.

I become very stiff if I eat sugar (and after the stiffness peaks then I get extremely weak). I also get stiffer if I eat foods high in potassium or potassium additives. Others say they don't notice any difference. Some of that will depend on the particular mutation or mutations that you have.

Most people have hypertrophied or overdeveloped muscles like a weight lifter. That's because our muscles are "ripped" by our own resistance when we push against the stiffness. This usually happens when we're going up stairs or walking after we stand up because it's embarrassing for others to see us walking funny so we force our muscles to move.

Jan

Type of Myotonia: Thomsen's

Country: USA

Hello Arty,

I endured severe MC symptoms when I was at school but I got through it okay, I was lucky to have some good friends.

I have no reaction to sugar but as Jan says, one of the maddening things about Myotonia Congenita (MC) is that no two people seem to experience the same symptoms!

I had very enlarged muscles before I started on Mexitil, a drug that helped lessen the MC, unfortunately it is no longer available. I now take Flecainide but I have to have frequent reviews with a neurologist because it is a heart drug and although it allows my muscles to behave almost normally there is a risk involved in taking it.

There are a lot of very knowledgeable people using this forum so if you have any further questions post them here and someone will give you an answer.

Type of Myotonia: Becker's

Country: England