Navigating the Confusing Information Online Regarding Supplements
There is so much conflicting research online about supplements that can help relieve the symptoms of Charcot-Marie-Tooth disease (CMT). How do I know which is valid and which is just hype? I have even asked my doctor, but he is not confident enough in this area to give advice about which supplements to try.
Supplements I have considered
CoQ10
I hear a lot about coenzyme Q10 (CoQ10). A clinical trial completed in 2013 tested CoQ10’s effects on CMT, hypothesizing that “daily supplementation of CoQ10 taken as a 300 milligram wafer twice a day for 3 months will produce a statistically significant reduction in weakness, fatigue, and pain, along with a significant improvement in QOL [quality of life] as indicated from scores in both standardized physiological and scale measures.” However, the results do not appear to have been published yet.
Many anecdotal claims of CoQ10’s uses exist, such as the supposed ability to boost energy and speed up muscle recovery. But not enough research exists yet to prove these claims, so I’ll pass.
Melatonin
I read a 2017 study that said high doses of melatonin could be beneficial in children with CMT between the ages of 8 and 10. The researchers found a decrease in levels of the enzyme associated with oxidative stress. The children took 60 mg of melatonin at night and 10 mg during the day. But this study only looked at three children. How does that make it a valid study? Also, much conflicting information is online about whether melatonin is even safe for children. What does all of this mean for adults?
Vitamin C
A 2015 study looked at vitamin C’s potential benefits and harms for those with CMT. Vitamin C is needed for myelination (the development of myelin, or insulation around nerve fibers), which is impacted by CMT. But researchers found no improvement in the symptoms of CMT type 1A with vitamin C supplementation. So, I guess vitamin C is best for your immune system rather than disease symptoms.
Turmeric
Turmeric is a supplement said to help with:
- inflammation
- reducing pain from arthritis and muscle pain
- skin care
- weight loss
- lowering bad cholesterol levels
- constipation or irritable bowel syndrome.
I am most interested in its supposed ability to soothe muscle pain and inflammation. The other benefits make turmeric sound like a wonder supplement. It seems perfect … almost too perfect. Turns out, it does not always absorb into the body easily. Additionally, it could interact with prescription medications. Therefore, it is probably best to talk to my doctor before taking turmeric.
I’ll stick to tweaking my diet
There’s so much conflicting or inconclusive research online regarding supplements. It is overwhelming to try to sort through it all. Instead, I’ve turned to researching which foods can be helpful for muscle recovery. I can get on board with drinking a glass of chocolate milk after exercising — it might even give me an incentive to go to the gym! I also can probably manage to eat eggs more often and add some spinach to them.
It seems that a healthy diet is key to feeling better. I know that when I watch my carbs and junk food, I do feel less joint pain and fatigue. Maybe that is a wiser route to relieving my symptoms than taking risks with supplements. When there is more research, I will revisit the idea of taking supplements.
Have you had any success with supplements? I’d love to hear about it.
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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.
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Comments
Brenda van der wielen
My son (cmt1a) uses pure keratine.
This helps against fatigue of the muscles.
Jill Price
Thanks, good to know.
emily
I wanted to ask what type of cmt you and your son have? I have type X my son was diagnosed via amniocentesis. How are yours and his symptoms?
Oliver De Battista
thank you Jill, your Post is very helpful. good work . Oliver D
Jill Price
Thank you!!
Caroline Ramirez
I started taking tumeric in February. I am now able to care for myself more and walk better. Just try it. I take a about 8 a day 2 to 3 at a time throughout the day. It is just a spice and your body will use what it needs.
Jill Price
Thanks for the information!!
I Ali
Thank for information. I couldn't understand how much exact quantity you take.
Jill Price
You are very welcome. I am no expert but hope it helped a little bit.
Anna Vitale
Hi. I was diagnosed with CMT last year, although it is genetic, and probably had it all my life. I am curious about how you take the Tumeric you recommend . Is it in pill form, or powder?
Daniel Ronay
I was diagnosed with CMT in my teens, My Father had it, my brother has it but not as bad. My sister does not have it. I do have AFO braces for years since it was just in or out of high school. Lately in the past few years the muscles on my hand near the thumbs have atrophied and I get by with less use us my fingers. about 7 weeks ago I had CABG. Bevore the surgery my creatinine was elevated, with mostly raw diet , fruit and vegtables I can lower it somewhat. I started taking CoQ10 to help lower my creatinine and one month was lower to 1.6. I also have been taking Vitiming D3. My last blood test said mt Vitiming D wasa on the high side and my neuphrologist said to cut back every other day.I would like to get your opinion and keep in touch with other CMT people
Maria
Please somebody can helping me. My son is 18 years old and he has cmt,he telling me he has a lot pain in his legs.
Somebody know what vitamins helps for pain.
Sorry my English is not good.
Fatima Riley
Maria I have CMT for pain I message castor oil with pike root and comfrey root I mix all 3 together let it stay for about 3 days it helps with the pain and pressure also I do not eat no sugar as I am a type 2 diabetic I keep my sugar in control it really works wonderful the castor oil and the roots with castor oil it is like a miracle cream
Katie
Maria, everyone is different. In our family, CMT nerve pain is often caused by too much sugar in the diet. We have cut sugar as much as possible, which has solved 90% of my son's pain for now anyway. For my son, who is under 10, when he is hurting, we do a combination of a snack of protein first (something quick and easy like cheese and crackers, chicken nuggets), then if he is really hurting, also give him children's Tylenol. If he is still hurting, we give him hemp oil, which is legal in our state and always works. We also have a 504 plan with the school that allows protein bars to be kept by his teacher in case he needs one. I buy a box at the beginning of the semester. Good luck! There are great CMT groups on Facebook that would be helpful for you too.
Alex Segal
There was difinitive evidence for coq10 supplementation in a 1995 study by Folkers and Simonson. I was quite debilitated at that time, and started taking it. It was a revelation. I was able to function almost normally for years after and have never gone a day without it. It is essential in the energy cycle and normal people produce it in normal amounts. Due to some error of metabolism some cmt sufferers do not. I take 1200 mg a day dose suggested by my neurologist. It made my life worth living
DANIEL TAYLOR
I have read that COq 10 is an enzyme that your body produces naturally throughout your life . Supposedly it helps your cholesterol (good &bad ) flow freely through your arteries to prevent clogging . The problem arises as you age your system slows down the production of COq10 . I take it daily, I'm overweight but my cholesterol is at an ideal level. I'm 74 yrs old and my resting pressure is 120/ 70 ! I attribute this to COq10 and turmeric.
William Boehm
Hi. I am 83 years old. I was diagnosed at Mayo Clinic in 2009 with having CMT2 MFN2 Gene Mutation. Since then my CMT has steadily worsened. The muscles in my legs are probably 80% gone. My right foot is slightly a drop foot. I have high arches and hammertoes. A couple of years ago I started losing feeling in the tips of my fingers and losing some strength in my arms. I have terrible balance. Inside the house and walking to and from the pole barn I can walk without a cane but I use one to maneuver to and from social activities. I take Lyrica for CMT. I have COPD, Emphysema in my left lung. Barrett's disease. High blood pressure. High cholesterol. Stage 3 CKD. 2 stents in my heart. Right-hand tremors. I read posts on this site and wonder if turmeric and COQ10 will/would work for me with my other medical issues and prescription medications. I use an inversion bed daily and also a rowing machine. I get on the floor and do stretching exercises. They all seem to lessen the pain I have in my lower back and my right buttock region, right hamstring, right calf, and cuboid in my right foot. I would like to hear from people that have the same issues and what they do with regard to diet and vitamins. Thank you to all and speedy health progress to you all.
DR LAWRENCE BBARRY
I WAS AN OLYMPIC LEVEL ATHLETE. DEVELOPED CALF WEAKNESS 7 YEARS AGO. GENE TEST SAID CMT AND TOLD DO NO EXERCISES AT IT WILL NOT HELP!
WENT TO CEDARS SINAI LA WHO DID EXTENSIVE WORKUP. NO PRX DEFECTIVE OR ANY DEFECTIVE GENES. NO KNOWN DISEASE
MY THERAPY: GOLF WEEKLY USING CART, POOL EXERCISE THERAPY 2X/WEEK AT YMCA, BOUGHT SOME CALF BUILDING MACHINES FOR HOME AND USE THEM, WALK MY POODLES REGULARY AND EVEN SMALL HILLS
WEAR OTOBOCK LITE AFO BRACES BOUGHT ON AMAMZON AS CUSTOM BRACES ALL BROKE IN A FEW DAYS.
GLAD TO SHARE ANY CMT INFO AND LEARN ABOUT CMT
[email protected] [email protected] SAN DIEGO
Marvin Einarson
I have CMT2A. I am 79 years old. Ihave taken COQ10(800 mg) for 16 years. The reason for the supplement was to
help adjust for the statins(heart condition), according to my nuerolgist. I feel the COQ10 has helped my energy level over the years
and reduced to bad effects of CMT.
Brian Bustard
Hi, I was diagnosed 3 years ago with hereditary neuropathy, something close to CMT. I'm 78 and have it in both lower legs and 1 hand. I walk funny but am OK otherwise. I've taken Benfotiamine (vitamin B1) 750 mg. (a very high dose) since then. There's been no progression since then (for what that's worth). I found it on YouTube, including some neurologists.
Fatima
For pain Poke Root Comfrey Root and castor oil message every nite before bed and in the morning and if you have severe pain it works they key is to leave sugar alone you find everything on Amazon I have a disliking to everything with sugar also Gumat powder you find it on Amazon please try this you will not regret it.