CMT Blog

You may as well use it if you’re going to lose it anyway.

A recent study of people with CMT who engaged in athletic activities at least once a week (mostly gym workouts) for at least six months showed their pain levels were noticeably lower than another group that didn’t exercise. Depression levels and overall Quality of Life scores on surveys were better for the folks who hit the gym.

Not very surprising.

It’s a tough sell, but it’s really the only deal CMT gives you: Use it and lose it. Avoid pain and gain more pain.

What did surprise me a little is that a pain study of people with CMT discovered many of them avoid exercise and strenuous activity out of fear of injury and strain due to the muscle weakness caused by CMT. Some wrongly think they will lose muscle at a slower rate if they don’t exercise. Others err in the other direction and think intense exercise will slow the progression of their CMT.

It’s true, you do have to be careful, and you can’t get back muscle you’re losing to the disease through exercise. You can’t even slow the loss. But you can keep what you’ve got now in good shape and get all the other benefits of exercise.

I call this “Use It and Lose It.”

Use It and Lose It

The pain study also noted the Catch-22 of how pain drains the energy and will to exercise, providing many disincentives. I’m sure plenty of CMTers also dislike the awkwardness of navigating slippery floors and possibly revealing more of they physical damage to strangers in public than they are comfortable with. Or, sometimes that damage can be pretty well hidden, but then there’s no evident reason why relatively light exercise or certain types of movement are intensely difficult, painful, or impossible. You might fear getting strange looks or having to explain yourself to a trainer.

I relate a lot to that — and what Young Lee describes here:

I was determined to fuel a narrative that CMT didn’t affect me at all. In such times, I’d tell myself, and others, that I had no desire to do something, even though I was actually afraid I couldn’t, or that I’d embarrass myself, or that I’d out myself as disabled before I was ready.

This mindset affected the activities I’d participate in, as well as how fully I’d push myself in physical tasks and sports. It shaped the topics I brought up in conversations with acquaintances and even with physicians, physical therapists, and personal trainers.

Years ago, for example, I worked with a personal trainer, but didn’t tell him what limitations I had with CMT. It hurt our coach-client relationship because I think he could tell something was off. He was right: I was insistent that I wasn’t interested when I was actually scared.

This lack of self-honesty affected other areas of my life. I imagine it affected the level of service I received from some medical professionals, and it likely hampered the development of some friendships.

CMT gives us a lot of incentives to sedentary and isolating activities. But this will lead to more pain via poor conditioning and probably weight gain, which all comes down harder on people with damage in their feet, ankles, knees, and calves. And the worse it gets, the less you’ll want to exercise.

It’s a tough sell, but it’s really the only deal CMT gives you: Use it and lose it. Avoid pain and gain more pain.