CMT and fatigue

Every now and then I get questions about CMT. If I’m not crazy busy, I do my best to answer them. The query below was one I thought I could answer as the topic is a problem for most of us.

Carl Capps of Kent, Ohio writes: I’m seeking info on CMT and Fatigue.  I wear two carbon braces and use a cane and tire easily.  I am 76.  I drive and get around pretty well but by 2 or 3 p.m. I’m ready to call it a day.  I try to take a nap usually around 3 or 4 for an hour or so.  Could you direct me to any info on fatigue and CMT and how to manage it?

I love to read novels, I’m a ham radio operator, volunteer at church for Stephen Ministers and did more volunteering when I was younger.  I have an electric scooter I use occasionally.  Also we have new puppy, Bailey, a mini-Labradoodle, which my wife, Nancy, and I started formal training with recently. Keeping up with a puppy is a job in itself. Whew!

We’ve done quite a bit of traveling in the past ten years that we’ve been married.  Our first spouses both died; mine after 40 years and my wife’s after 34 years. My wife is a great helpmate in so many ways and I know I’d find life so much more difficult without her.

One of my concerns is my weak fingers. I have trouble buttoning shirts, especially collars.  My wife does this for me.  I can’t open most jars without using a latex type jar holder.

I am so blessed that I rarely have nerve pain and when I do, it’s very brief.

I can still walk with the help of braces and a cane.  I have a scooter similar to yours (a Pride Go-Go) which I use occasionally but not in the house.

Nancy and Carl Capps

Nancy and Carl Capps

Our computer and my ham radio station are down several steps to an enclosed porch.

You seem to handle everything so well and I admire you for it.  We must be about the same age if you’ve had it 70 years.  You must have been diagnosed at a very early age.

Thanks so much for any info.

Hi Carl: I admire you and your initiative. It seems that many of us who have CMT have that special drive that means we just keep going. I’m 72 and my CMT showed up at age one. I no longer “do” mornings. I start work on my computer around noon or so and finish up at 5, or before, if I’m really hurting. Some days I read until 1 and start work after that. Why am I still working? Because, the same as you most likely, I can’t think of anything else I’d rather do.

The answer to your question is likely that you are trying to do what a normal person with your drive and involvement would do at your age but you are trying to do it with probably half the muscle mass. It’s no wonder we get tired. We push ourselves because our brain has never really gotten used to the fact that there’s anything much wrong with us that we couldn’t overcome if we pushed. We were always told we could do it if we tried hard enough, weren’t we? So we keep on keeping on and our poor old CMT bodies don’t get stronger, they get worn out. With age and CMT nerve degeneration we lose muscle mass.

I looked up Charcot-Marie-Tooth disease and fatigue on PubMed.  There are journal articles and abstracts printed there on CMT you can read. A lot of them. Here’s one:

Neuromuscul Disord. 2012 Dec;22 Suppl 3:S208-13. doi: 10.1016/j.nmd.2012.10.016.

Exploring the experience of fatigue in people with Charcot-Marie-Tooth disease.

Ramdharry GM1, Thornhill AMein GReilly MMMarsden JF.

 

Abstract

This qualitative study explored the phenomenon of fatigue for people with Charcot-Marie-Tooth disease, while acknowledging the triggers, impact and strategies people have developed to manage this symptom in daily life. A phenomenological approach was used to explore the experience of fatigue. Participants were recruited from a support group. Twenty-five people participated in three focus groups. Group interviews were tape recorded and independently transcribed. Transcripts were coded and emerging themes were highlighted. Four areas were explored and themes identified within them. Fatigue descriptions: energy depletion, overwhelming nature, variations in fatigue and fatigue as an abnormal experience; triggers of fatigue: activity, stress and mental concentration; impact of fatigue on: physical abilities, mood, guilt and frustration, isolation and concerns about how they were perceived by others; strategies to manage fatigue: coping with symptoms; planning ahead; deception; and reducing symptoms. This study revealed that fatigue is an overwhelming experience for people with Charcot-Marie-Tooth disease that impacts on many areas of their lives. People may require significant adjustment that could be facilitated by fatigue management approaches. In addition, exercise may have potential to reduce the symptoms of fatigue in some people.

Copyright © 2012 Elsevier B.V. All rights reserved.

Carl: Read to your heart’s content. Some of it may apply to you, some might not, but you’ll certainly know more about CMT and fatigue when you finish. PubMed is an excellent source of information for people with CMT and so is CMTus. There are more than 2200 people on that private CMT facebook page and we answer questions for each other every day. To become a subscriber of CMTus go to: https://www.facebook.com/groups/cmtus/

Thanks for being in touch, Carl. We older CMTers have to keep on keeping on. I have a sneaky feeling if we stop doing what excites us about life that will be the end of us.

Until next time,

Cheers!

Linda

One Response

  1. My right side of the muscle of my diaphragm has stopped functioning, so see a pulmonary dr. to rule that out. This caused me extreme fatigue for years before I was diagnosed. I still get fatigued, but oxygen and a V-pap helps to get me through the day. Peggy

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