I drive by every few years, and I'm back again. :)

First of all, exercise is CRUCIALLY important to managing myotonia congenita. YES, excessive exercise can cause a sudden, acute attack of pain and stiffness that can last for several days. But for management of day-to-day symptoms, NOTHING works as well as regular, moderate exercise.

Over-bulking muscles does NOT worsen pain. Pain isn't really related in any way to muscle size. When I was the "biggest"--and for a woman I was QUITE big--I had some of the least pain that I was ever in. In high school, I was in track and cross country, and I hurt on vacation days when I didn't exercise, when I got my period, and on race days (when I worked out harder). That was all. (Now, I wasn't GOOD at even long distance running because of the myotonia congenita--no matter how much I train, I can run only about 3.5 miles at a stretch, and not very fast because my muscles just won't get any more efficient. But that's another issue.)

The ideal amount for minimizing pain and stiffness is probably 30-45 minutes of moderate exercise per day. Every other day works, too. If you are starting from scratch, I recommend only adding 5 min per day if you're not willing to gut through three days of an acute attack. :)

Avoiding exercise only makes chronic pain worse and makes your muscles tighter and makes you more vulnerable to sudden attacks of pain and cramping. You may thing you're avoiding pain, but really, you are making it WAY worse.

Try to start out slowly and not trigger an "extra" cramp, which can lead to injury.

PAIN FROM STANDING: People with MC can get intense leg and back spasms from standing for extended periods of time. I've discovered that foot problems are a major source of this. All the cramping in our feet can mess up our foot anatomy over time, leading to additional stress on our legs and back. Custom insoles from a podiatrist made all the difference in the world!

JOINT PROBLEMS: I've found out that a lot of "joint" problems are actually due to muscles pulling on the joints in question and the chronic pain from knees, hips, and even hands can be alleviated by figuring out WHICH muscle is pulling on the joint wrong and releasing it. Sciatica can be caused by muscle cramps and cured by releasing the muscle.

PAIN CONTROL: There are four things that can help control pain. 1) Exercise. (Yeah, that again. I really do mean it!) 2) Massage--as in the deep-tissue, trigger-point-release type. Shortening the muscle positionally rather than the more typical lengthening of it works best for stubborn MC cramps. This relieves pain and restores range of motion and the proper function of the joints. 3) Heat. Heating pads, heated blankets, hot tubs, and hot water all work together to help lower pain levels. Dressing warmly when it is cold outside is important. Even in the spring and summer, evening dips when you are wearing shorts can cause problems. 4) Medicines. I refuse to take prescription anticonvulsants because the side effects are terrifying. For pain relief, I prefer 3 ibuprofen when needed and, if required, half an opiate on top of that. I am considering botox injections for two particularly stubborn muscles that haven't un-spasmed in my back in years.

Type of Myotonia: Thomsen's

Country: USA

Reya:

Yes, you are right, a moderate level of exercise seems to be the most effective way to control some of the symptoms outside of medication....at least in my experience, and that of a few others. It doesn't seem to do much for the cramping/pain I get in my back unfortunately though.

Type of Myotonia: Becker

Country: USA

It seems to only help the large muscles that get the workout. So running and walking do NOTHING for your back but help your arms and legs.

But I've found one exercise that does help the back!

This guy does it: http://image.tradevv.com/2010/11/22/frefitness_1690634_600/fitness-machine-45-degree-back-extension-k09.jpg

Back extension machine. You hold a weight against your chest (depending on how much you need) and go from your upper body hanging down to it being arched.

http://www.youtube.com/watch?feature=player_embedded&v=ZQ3RPHfY5iQ

But hand weights limit the range that you have resistance--I recommend hugging a weight against your chest, instead. For me at least, my default hypertrophy means I need a good 20lbs to make this work my muscles hard enough to make them LET GO.

Unfortunately, this is impossible in pregnancy!

There are a couple of other back extension machines that have weight systems. They work, too. But I've seen this most often in the gym. It takes about 3 days to start making a real difference--and then it really, really does!

Type of Myotonia: Thomsen's

Country: USA