Hi Nikole:

About 14 years ago I had gained a significant amount of weight fairly rapidly and my myotonia was at it's worse. I started going to the gym, and did 20 minutes of walking on the treadmill, followed by weights. I would usually have to wait 15-20 minutes for my mother to pick me up afterwards, and in that 15-20 minutes of rest, my myotonia would go from bad, to worse. My whole body would stiffen when I tried to pull myself into my mother's van. But I just lived with it, and over the months as I continued this, and the weight came off, the myotonia began to subside.

Type of Myotonia: Becker

Country: USA

Mik and Nikole,

Many things can influence the stiffness as we get older including hormones, exposure to pesticides and herbicides, medications (including one prescribed for asthma and high cholesterol) and elevated insulin from eating simple carbohydrates.

I have been able to control my stiffness with diet and am able to exercise with very little stiffness (there's a link on my website). I have found that eating foods high in capsaicin like hot sauce, salsa or red pepper flakes will relieve severe stiffness, especially when I have trouble swallowing or moving my eyes.

On a daily basis I take Acetyl-L-Carnitine and licorice root (one capsule of each). These seem to help quite a bit with exercise tolerance.

In general the more you can focus on the red fiber/slow twitch muscles, the better. That means more stretching, walking, biking, etc. If you do weights it's better to do fewer reps and sets and focus on the movement away from your body. Weights should be done very slowly and deliberately, not in jerks. The muscles that will be affected the most are calves, quads, abs and biceps. So if you work those muscle groups it's important to cover opposing groups, too, and don't spend too long on any one group. Sometimes drinking a little baking soda in water before a workout will help since it displaces chloride and reduced acidity. Jenna and I have both found that drinking milk helps us recover more quickly (I use skim).

Mik, the increase in muscle size comes from tissue damage (we get a "burn" a lot quicker than normal people) so if you exercise more slowly and don't push a muscle group until it hurts, you won't get as much hypertrophy.

Jan

Type of Myotonia: Thomsen's

Country: US