Adjusting My Diet to Better Manage CMT
Column by Young Lee
September is CMT Awareness Month, and my social media feeds have been flooded with inspirational quotes and infographics related to Charcot-Marie-Tooth (CMT). It’s rare that one of these posts gives me information I hadn’t heard before, but one infographic caught me off guard.
It featured an image of a body and its nervous system, surrounded by words and images representing CMT symptoms — 27 of them. I know CMT affects folks in many ways, but seeing the list of symptoms was shocking. It reminded me of one of my takeaways from the CMTA Patient/Family Conference I attended earlier this month.Â
When managing a chronic illness with as many symptoms as CMT, there’s not going to be a quick and sexy solution to addressing all of them. Raghav Govindarajan, MD, a neuromuscular physician at the University of Missouri, said at the conference that although he works at a CMTA Center of Excellence, many factors outside the clinic affect how well a person lives with CMT.
A holistic approach
According to Govindarajan, perhaps the answer to living life richly and fully with CMT includes considering a holistic approach.Â
After the conference, I took a second look at certain aspects of my life that I had never considered as important to addressing CMT. One of those is diet.
I’ve thought a lot about diet now that I’m in my late 20s. I try to eat fewer calories and, for environmental and health reasons, I’ve started to limit my consumption of red meat. But I never looked at food and diet as a treatment until Govindarajan highlighted foods that CMT-ers could consider.
CMT can cause a lot of pain and inflammation. But, Govindarajan said at the CMTA conference, the typical American diet encourages inflammation with calorically dense foods and an abundance of sugar and carbohydrates. Those, he said, can make CMT symptoms worse.
He suggested CMT-ers focus on foods high in anti-inflammatory components:Â
- Green leafy vegetables
- Bok choy
- Celery
- Beets
- Broccoli
- Blueberries
- Pineapple
- Salmon
- Chia seeds
- Flax seeds
- Coconut oil
- Turmeric
- Ginger
- Walnuts
Taking the challenge
I turned the doctor’s suggestions into a shopping list. I enjoy cooking and was familiar with ingredients such as ginger, bok choy, celery, beets, salmon, and broccoli. Chia and flax seeds were new to me.
I’ve been trying new recipes and reviving old ones since returning from the conference.
My go-to breakfast for the past week: chia seeds, coconut milk, pineapple, blueberries, toasted walnuts, and honey. (Photo by Young Lee)
With blueberries, pineapple, walnuts, and chia seeds on my shopping list, making chia pudding was an obvious choice. My brother loves chia pudding but I had never made it.
After making it regularly for the past week or so, I’ve learned a few things. The ideal ratio of chia seeds to liquid varies based on personal taste, as does the choice of liquid. My brother likes his pudding thicker than I do. I use one part chia seeds to a little more than four parts liquid. And I prefer vanilla coconut milk — regular milk is too thick.
I grew up eating bok choy, garlic, ginger, chicken, and broth. (Photo by Young Lee)
A dish with bok choy is comfort food for me. I don’t have a recipe. It is adapted from something my mother taught me.
Sous-vide salmon, spinach, arugula, flax seeds, tomatoes, celery, toasted walnuts, and roasted beets. (Photo by Young Lee)
A salmon meal is another that is well within my comfort zone. I used to eat it regularly, except I didn’t include celery, flax seeds, or beets. My go-to dressing is a base of two parts lemon juice to one part honey mustard, blended with olive oil and any herbs or spices I have on hand. Because you need to grind flax seeds to reap their health benefit, I added ground flax seeds to the dressing and sprinkled toasted flax seeds on top.
Looking for recipes
I have yet to figure out what to do with turmeric. I made a broccoli curry with turmeric, but I wasn’t happy with it. I also tried making turmeric tonic.
Does anyone have great recipes that use turmeric? Has anyone had success managing CMT symptoms with changes in diet?
***
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.
About the Author
Linda Burrus
I have many symptoms of CMT after a grandaughter was diagnosed with it at Shriners Hospital in St. Louis. How do I find out if I have it also, as my deceased Mother also had some symptoms that we have read about. Is there anything to be done to lessen the neuropathy in my feet and legs, or how to change my diet to help. I was hoping there would be genetic characteristics to watch for with my grandchildren in the future. We had never heard of this before. Thank you!!
Paul Fowler
Hi Young,
Have you checked out Dr. Terry Wahl's protocol? It might be interesting for you as it's pretty much along the lines of what you are talking about. It's been my bible and beacon of hope for managing my CMT symptoms. Right now, I am doing the diet at 100% for the next 100 days. I'm praying it works to soften the nerve pain in my feet and hands and hopefully also to lessen to fine motor coordination that I am losing in my hands. I feel like it's helped before (I was on it for 6 months), but we'll have to see where it goes now. Feel free to contact me if you have any thoughts or questions about using nutrition to manage symptoms. :-)
Dr Mypari
Sorry but a high plant diet will make your CMT symptoms worse. Also this demonizing red meat causes neuropathy and increase in dysfunction
Nancy Hansen
I have CMT. I've found it horrific. My feet cramp. Only. When I sleep. My feet wake me up. This morning I woke up. And. Not even thinking. I was like. How did I go to sleep with my shoes on? But. I didnt have any shoes on. The other day. I jumped out of bed. Because my feet were cramping in and out. It was soo painful. Can anyone help me? Milk
Elizabeth Sinclair
I was diagnosed with CMT1A last year. 😢 cramps in legs and horrific. Tried everything with little to no help. However what I’ve found that works almost instantly is 1/2 tsp baking soda in 4oz of warm water quick stir to devolve and guzzle. Within seconds the cramps releases. No hard rule on measurements.
Laura Quick
Hi
My mom adds it to scrabled eggs and celantro and i have turmric in a almond milk and cinnamon i find the cinnamon complements the strong flavor of the tumeric and i also use tumeric essential oil so j only need one drop
Yvonne Steel
Hi
I have Cmt. I had my first op on my feet
aged 9 yrs and had many more my last one being 4 weeks ago. I am 66 yrs. My hip hurts a lot when I walk. What can I do to alliviate the pain. Also had extensive neck and back surgery as well as knee replacement.
Joann
My daughter is 38 and has CMT he whole life. There is a very strong history in. Her dads side all different degrees. My daughter was diagnosed as a baby and has the worst symptoms in the family. She did have early intervention and Pt that kept her ambulatory for her childhood. She is now mostly wheelchair bound. She has found that chiropractic care has helped with nerve pain and acupuncture helps with pain.she does take medication. We are starting a new exercise program in a warm water pool to see if this will also help maintain muscle in legs.
Dorothy
I am 71 years old now.
I was diagnosed with CMT at age of 19.
I did quite well with it when I was younger.I danced a lot and active with my 2 kids in my early and mid 20s.
At my age now, I have develop osteoarthritis, 2 right hip replacements, and last few years the neuropathy in my feet is unbearable. Along with disc problems and Arthritis in lower back.
My, My, just typing all this is overwhelming.
I suffer daily with chronic pain.
Through the years, I try to take phiysical theraphy, ar least quarterly, and before the pandemic, I was taking aquatic theraphy.
It all helped.
But my weight is out of control.
I am 5' 1" weighing 155 lbs.
I have no energy and stay sleepy
My eating habits are bad.
I eat a lot of microwave frozen. I eat a lot of fruit juices sugar in it.
Any Help for me?
It is hard to.chang.
Sam O. Spiel
Worst mistake of my life was going vegan with CMT. I can barely walk anymore. Minds constantly cloudy and the neuropathy is insane. My digestive system is shot.. the atrophy ..ugh. Yeah, don’t believe the lies. Plants are not our friends.
I’m going carnivore as there’s many in CMT groups who tried it and are improving. Wish I’d of known sooner.
Suzi
I was diagnosed with CMT last September. I’m 63 years old. I went to PT for 6 months. They pretty much did all they could do for me. I have a recumbent bike at home that I ride every day along with other exercises. I’ve noticed the past three weeks I’ve been dropping several items that I grab ahold of..it’s pretty scary. Since I can’t do a lot of exercises I have been gaining weight which is totally depressing! Any suggestions??
Mindy
I have had cmt all my life I'm 45 years old and I have had pretty descent life a few bumps s I need I've turned 40 its gotten unbearable the pain I had to have a foot amputated it's hard and my advice is stay active. Also what's a good shoe cuz my other foots getting worse
Martin Tobin
I am a male of 78 years and have many problems with CMT disease and Osteoarthritis feet and hands being the worst problems I live in Ireland which does not make it better because even doctors here don’t know anything about this disease . There is a product that helps with the muscles but difficult to get and prescription only and it’s Sativex THC 270 mg andCBD 250 mg and would like to hear more about this product . Turmeric and Ashwagandha helps a good bit but not enough .