Paige,

You might want to try some capsaicin cream or roll-on liquid on your back. You can find it at any pharmacy.

Was your MC diagnosed by DNA testing? You have a lot of symptoms that are not typical for myotonia congenita so you may have another condition in addition to MC. What you're describing with the rings on your legs sounds like a circulatory disorder like Raynaud's Phenomenon. I would suggest trying to see a rheumatologist to determine if there is perhaps an autoimmune condition affecting your circulation.

I would not accept a doctor saying that it's just the myotonia causing all the pain and disabling symptoms. That's what happened to me for over 20 years and now we know that it was actually four different genetic conditions causing the various symptoms.

Jan

Type of Myotonia: Thomsen's

Country: USA

Paige:

I agree with Jan that the cold feet might be due to Reynaud's. I have this. It's caused by an overreaction to the cold, which causes blood vessels to spasm shut. It can also be brought on by stress. It most often affects the fingers, toes, feet, and I've heard it can affect the nose.

Once your feet get cold, socks probably won't work because socks and blankets can only work to warm a person up if warm blood is flowing. The socks or blanket slows the flow of the heat away from the body. With Reynaud's, once the blood vessels close, there isn't any heat to retain. When my feet get cold, the only way for me to warm them up is to usually stand in the bathtub and run hot/warm water over my feet and lower legs for a few minutes. Then I have to dry them off before they get cold again, and then get under some warm blankets.

Occasionally I can warm them up by making my upper body hot, but it takes a lot longer. Last night, I had a fever and was burning up from the waist up, but my feet were still ice cold.

Type of Myotonia: Becker

Country: USA