Hi there -

I was searching for threads on this same subject. While my myotonia has been pronounced since my early teens, it became much worse when I was pregnant with my daughter in 2007 - I had a fall which resulted in being referred to a neurologist specializing in neuromuscular disorders and was officially diagnosed after an EMG in 2008. I have not yet tried any meds for symptom management, and would like to avoid that, if possible.

Growing up, I was pretty athletic - running and playing basketball and soccer - and I always managed. Looking back, it seems my myotonia was pretty mild then. When I experienced multiple miscarriages, my doctor advised me to stop exercising - and then my myotonia became much more pronounced with my pregnancy with my daughter. Since then, it has stayed much more pronounced than it ever was before pregnancy.

Since my daughter's birth, I have tried exercising but I have trouble managing my myotonia when I do this. I am fine after an initial warm-up, but after exercise, my stiffness is so pronounced that it makes tasks of daily living challenging. If I rest for a couple of days, the stiffness subsides significantly. I have gained about 20 lbs since my daughter's birth and I desperately want to exercise and lose the weight, but I'm not sure what to do. Exercising in water does seem to be the best option. Even walking causes pronounced stiffness afterwards, lasting for several days. When I have tried more intense exercise (like running or weight/resistance work), my body is extremely rigid, moving is incredibly difficult, and I start having problems swallowing, etc.

I am wondering if others have found a good exercise rhythm or ways to manage this post-exercise stiffness? I am very open to supplements and management through diet.

Thank you,
Nikole

Type of Myotonia: Thomsen's

Country: USA

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