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Re: very bad stiffness- Annoying!

Paige,

You're at an age now where your female hormones (primarily estrogen) are going to begin to affect your myotonia. This will be much worse the middle of the month when you ovulate, and again just before your period. This is normal and I believe part of it has to do with the effect of estrogen on thyroid hormones (it binds them). You might want to get an appointment with a gynecologist and see if there is some safe treatment you can use to try to minimize hormone fluctuations.

It is also possible that you have another condition besides MC that is affecting your muscles. For instance I have a genetic mutation unrelated to myotonia that causes me to lose phosphorus. That means I have less available for muscle fuel and exercise and cold weather can cause a lot of cramping and pain because my muscles just run out of energy sources.

It can be very difficult to pin down other contributing conditions, but it's important to be persistent and find a doctor who will recognize the possibility and do comprehensive testing.

Jan

Type of Myotonia: Thomsen's

Country: USA

Re: very bad stiffness- Annoying!

I had fairly severe myotonia through much of my teenage years, though I could stand without falling. My low center of mass gives me a little more stability than most I think, and I've always been cautious with my movements.

As Jan said, it's probably hormones. Gaining weight might also make the myotonia worse. I would try walking regularly but be prepared for the myotonia to get worse before it gets better.

Type of Myotonia: Becker

Country: USA