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.
AFOs aren’t the most comfortable sometimes, but persistence with a brace maker gets a pair that will work. I’m 54, have had weekend limbs since high school and am still able to walk 10-15k steps a day without too much fatigue. Braces are amazing.
I am glad the AFOs help you. I just got my first pair and I am not 100% comfortable in them. I am hoping it imporves.
me too Jill mine are carbon fibre very light i get sore calves when i use them I hope i will get better . i am 54 years old
bye the way thank you very much , for your column good job
Thanks. I am working on getting used to them.
I tried AFOs but the experience was horrible.
CMT has made me very weak and they made me too fatigued to use them.
I have the same problem.
I think it takes time to get used to them and find the right ones. I am sill not thrilled with mine but they are better than my other ones.
AFO’s help a lot. I can walk farther and longer when wearing AFO’s. The down side is that since getting AFO’s 2 years ago, I have had a couple of ingrown toenails! So I alternate between orthotic sandals and custom made AFO’s. Exercise is tricky, I love yoga, but I cannot do a real stretch like most do-otherwise my nerves go crazy and I will be in loads of pain! Aside from that my best help is the Fitstick. It’s designed for energy and weight loss. It has caffeine in it and I will not take it past lunch time or I will be too awake at bedtime. But, I have fewer headaches and more overall energy when I use a Fitstick, and it doesn’t make me sick. -My doc once prescribed Cymbalta to help with my symptoms and I git horribly sick.
I have heard of Fitstick, will have to look into it. Glad it helps you. I tired yoga, the balance and coordination just was not there for me.
Bigger shoes solved the ingrown toenails problem for me. My AFOs were taking up more space in my shoes than I realized. Surprisingly, my feet have continued to grow as I age, too. My orthotist said that increases in foot size are not unusual for his CMT patients.
Thanks for the tip!
bye the way thank you very much , for your column good job
Sorry Jill . i doubled up on reply. are you on Face book thanks
Thank you!
See: cmtausa.org/resource-center/treatment-management/breathing-and-pulmonary-care/pulmonary-care
I have CMT type 1a and my right side of my diaphragm has quit functioning. The only symptom I had was fatigue greater than I had normally. It took months for me to be diagnosed. Fortunately the sleep center sent me to a pulmonary doctor who specialized in neurology. My neurologist had no clue what was going on with me, so without my Astral 100 I would be dead by now. The pulmonary doctor sent me immediately to the hospital for a SNIFF test. In 5 minutes I was diagnosed.
I wish you the best and hope you get some answers.
I have severe fatigue. It seems like it came upon me over night. I have had CMT for 40 years and severe sleep apnea for 6 years (I have used a c-pap faithfully) to no availI I was a nurse and was blessed to have worked in the health field for 30 years now presently disabled/retired. I feel I must have lived totally on motivation and it’s gone. My physician has no answers All labs are normal. I long for some slight form of quality of life. Praying you could lead me in the right direction
It is so hard! The fatigue is the hardest part. I hope you find some relief.
I have had CMT since I was born and I am now 56. Over the past year or so, I have been experiencing strength loss in general and weakness during and after exercising. Is the strength exercise helping or hurting my condition? Just wanted to say hello to everyone.
It is not easy to deal with at times. I wish you the best.
I do okay for days and then I just crash for a day ! I just can not get out of bed and sleep off an on thru out the day. This drives me crazy and I question my self worth !
I understand, it is so hard to deal with fatigue. You are not alone!
hi Jill.
I hate being so tired all the time. I am an Early Childhood educator in training {at 52 after being a sahm for many years} in the public school system in Toronto, so I know how exhausting teaching is…sometimes I question if I can do it with CMT1A. I have AFOs but I still have to nap everyday after work. I have three teenagers and I worry they think Im lazy/neglectful, but I am so tired…
I’m just being tested now at the age of 35 for CMT (neurologist thinks it’s pretty likely the cause of my symptoms). I’ve read a study where Modafinil is used to treat fatigue with CMT, I’m wondering if anyone had experience with this?
Anyone here try Modafinil/Provigil?
I’m 62 in good health and proper weight. My only problem is the CMT4J. The somnolence and muscle weakness keeps me on the couch, dozing whats left of my life away. I’m not ready to retire.
Lower legs and arms have that tension/ache that never stops. If I can keep my mind active I can ignore the discomfort. Have life slow down from Pandemic exacerbates everything.