I’m Happy to Be Back in a Back Brace
There was a time during my childhood when in my mind, I was “Braces Boy” — part boy, part brace.
I was in middle school and already wearing ankle-foot orthoses (AFOs) to help with my ankles, which were and continue to be weakened by Charcot-Marie-Tooth disease (CMT). During that same window of time, I got braces to straighten my teeth and a back brace for scoliosis and to prevent kyphosis from getting drastically worse.
I only needed to wear my back brace at home and when I was sleeping. But it was an interesting period of time for me. And although I like to think I handled wearing three different braces at the same time with good humor, I remember being relieved that I’d be able to leave that time of my life in the past.
And while every now and then I consider wearing AFOs again, I never thought I’d go back to wearing a back brace. After all, the physicians told me that the back brace was to take advantage of the rapid growth and development of my pubescent years. And those years are far behind me.
But things change and here I am, back at it again (no pun intended). Except I’m not following doctor’s orders this time. And I’m actually happy to be wearing a back brace again — at least for now.
It was my mother’s suggestion. She relies on one to get her through long hours of housework and errands and gifted it to me. Though it’s not anything fancy, just a simple over-the-counter back brace, it has helped me to manage the pain I get during long periods of working at my desk, driving, and intense physical activity.
Back problems from scoliosis to kyphosis are common enough among CMTers, and many of us experience additional pain in our feet, ankles, and legs. But I don’t think we talk about it as much for some reason. And I think it’s a topic worth exploring.
I know other CMTers have tried home remedies, medications, or essential oils. I think I’ve found a solution that works for me.
Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.
What brand/type of back brace do you use? I might want to give one a try. I already use AFOs which help with mobility and endurance, but am now experiencing back fatigue. Thanks.
I don't know if you have heard this, but braces have a downside, and that is further, faster degradation of Kyphosis/Scoliosis, and pronation, or unbalanced outward movement of the ankle.
I had a very profound case of CMT caused Kyphosis which I was able to work out using Jill Miller's publications, workshops and having had her for private teaching.
It's likely that your entire back musculature is moving all at the same time, providing no rest and massive straining, which contributes to fatigue and discourages standing up straight, for the muscles are already straining at max, and they simply want to die when forced to stand up straight, even in a stretch.
For me, which can be seen in long form in her book "The Roll Model," which is about pain control using therapy balls, my back is now straight and very strong, and my neck, which at one time in the mid 90s I could not hold up in the evening, moved to the appropriate place.
I do know that every one's case is different, but the same thing happened in my feet, only the exercise allowed me to shed my AFOs after walking with unknown ease over rough ground at my parental home. Normal shoes became the norm now for 10 years.
The AFOs allowed for healing of multiple past injuries.
That set me in a place to do the Inversion/eversion strengthening, almost entirely with exercises on the floor, I am now in a place where I am repairing my gait at a very high level.
I have CMT X1 and am in my 50s, so the prognosis is "Severe disability."
My point is that bracing has its place, but the need can often be overcome with the right, non-brutal exercises.