Navigating the Confusing Information Online Regarding Supplements

Jill Price avatar

by Jill Price |

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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.

***

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.

Comments

Brenda van der wielen avatar

Brenda van der wielen

My son (cmt1a) uses pure keratine.
This helps against fatigue of the muscles.

Reply
Jill Price avatar

Jill Price

Thanks, good to know.

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Oliver De Battista avatar

Oliver De Battista

thank you Jill, your Post is very helpful. good work . Oliver D

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Jill Price avatar

Jill Price

Thank you!!

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Caroline Ramirez avatar

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.

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Jill Price avatar

Jill Price

Thanks for the information!!

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I Ali avatar

I Ali

Thank for information. I couldn't understand how much exact quantity you take.

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Jill Price avatar

Jill Price

You are very welcome. I am no expert but hope it helped a little bit.

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Daniel Ronay avatar

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

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Maria avatar

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.

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