The other day, I went on a field trip with my fourth-grade class to the Library of Congress in Washington, D.C. We had to do a fair amount of walking from where the bus dropped us off, then we toured the building. When we returned to school, my legs felt like I was walking through Jell-O.

When I finally got home, I sat down on the couch for “just a few minutes.” Soon, or so I thought, my son shook me. “Mom, wake up and go to bed.” My body still aches and my legs feel heavy. This means the weekend plans of visiting friends will have to wait for another time.

This type of fatigue is a frequent occurrence when you have a disease that impacts your muscles and nerves, such as Charcot-Marie-Tooth. The fatigue is a symptom of the muscles working harder to do everyday tasks. This becomes an issue when you have things to do, children to watch, a full-time job, and a household to run.  

An article by Charcot-Marie-Tooth UK shares suggestions of how to manage the fatigue:

• Eat often, exercise
• Get enough sleep
• Drink water
• Lose weight
• Reduce stress
• Cut out alcohol and caffeine

These suggestions seem logical, but are they all achievable if suffering from fatigue due to a disorder like CMT? I would love to follow all of these suggestions, but I am already too exhausted to put in the effort most of the time. Other CMT-related complications also prevent me from following these guidelines.

Exercise can be complicated

There is debate as to which type of exercise is best for CMT patients. The Hereditary Neuropathy Foundation suggests bicycling, swimming, yoga, and resistance exercises. As a CMT patient who has a Harrington rod from the base of my neck to the base of my spine, finding the right exercise is difficult. Bicycling and swimming are probably the two types that are the best for me. I can do some resistance exercises, but need to be careful about my balance and how much resistance I apply. Despite the complications of exercising, I feel better and less tired when I do it.

Sleep disorders add to fatigue

Oh, how I wish I could sleep well! I suffer from insomnia. A 2014 study in the Journal of Neurology, Neurosurgery, and Psychiatry about sleep disorders in CMT patients found that obstructive sleep apnea was present in 37.7 percent of study participants with CMT type 1. That could explain my trouble sleeping and some of the fatigue issues. I am still working on finding effective solutions to getting restful sleep. When I am able to exercise, I sleep better. So perhaps it’s a cycle.

Diet can be inconvenient

The article also suggests eating regular meals, plus healthy snacks every three to four hours. In theory, this sounds like a good way to keep my energy up throughout the day. However, I do not work at a job where I can do that. I am a teacher, and between food allergies and other issues, I can’t always eat every three to four hours.

However, I drink plenty of water and barely any caffeine or alcohol, as Charcot-Marie-Tooth UK recommends. If I do drink any caffeine, it is only in the morning or early afternoon. Otherwise, it will affect my sleep. 

Renewing my fight against fatigue

Fatigue is the CMT symptom that bothers me the most. I find it difficult to do daily activities and spend time with my teenage son. I often need to slow down and take naps more frequently than someone my age should. I am learning to listen to the needs of my body and I’m trying to find ways to handle the fatigue. It is not always easy, and there are many sacrifices along the way. I know that my health is important, but sometimes I do not want to make the sacrifice. For now, I will try to exercise more, eat healthy snacks, rest when my body needs it, and hope life waits for me.

What do you do to combat fatigue?

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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.