The operation I had done is not related to Myotonia Congenita. I had Transcatheter Aortic Valve Replacement due to Scarlet Fever. The strep stayed in the valve.
My question concerns cardiac rehab. I was told that a good portion of it consists of going on the treadmill and going faster and faster. There is another exercise where there is a wheel for the arms and you have to go faster and faster also. I cannot do these exercises. I know these exercises will cause me a lot of muscle pain and possibly a break down of the muscles. What is recommended for a person with Myotonia Congenita concerning cardiac rehab? Thank you
Sue, the typical cardiac rehab using leg and arm cycling will definitely make myotonia worse becaues the motion stresses the larger muscle groups like calves, quads, biceps and triceps which are more affected by MC. Stair steppers are disastrous for us!
I think the best way to get into aerobic metabolism but spare your muscles is a treadmill (flat, not a slant) or walking outdoors. It may take a little longer but it will be much better for you in the long run. The usual protocol is 10 minutes 3-4 times a day or 45 minutes at one time.
Rehab also often uses light weights which are okay to hold while you're walking (1-2 lb) to add a little more stress, but once you start doing things like curls you're going to provoke myotonia more.
Most therapists don't understand this at all. You will have to be the one to stop on your own as soon as you feel ANY "burn." You might even try some gentle rocking on a balance ball. I'm not sure bouncing would be a good idea this soon after surgery but just rocking from side to side should be okay.