The Importance of Physical ActivityAlthough there is no cure for CMT at the present time, the right amount and types of exercise can greatly improve life and function for CMT patients. The general advice for patients seeking assistance is to look first for the least invasive way to correct their problems. There are many questions regarding exercise and CMT. Advisory Board members Amy Warfield and Sabrina Paganoni both believe that the right amount and types of exercise are critical to CMT. Read more from Dr. Warfield or read more from Dr. Paganoni. It is important for people with CMT to maintain what movement, muscle strength and flexibility they have, but it is impossible to build up muscles already atrophied by CMT (neurogenic atrophy), so the best program works on strengthening unaffected muscles that can help do the work of those that have atrophied because of CMT. Hence, physical therapy and moderate activity are recommended. Overexertion, however, should be avoided. A physical therapist can design an exercise program that fits a patient’s personal strengths and flexibility. Exercises like the following that do not put undue stress on the joints are strongly recommended:
- Walking with balance walking poles – learn how to this is beneficial for CMT.
- Exercises you can do at home – for examples, watch exercise videos with Rebekah Lee, a physiotherapist living with CMT.
- Tai chi
- Exercise and Physical Therapy for Inherited NeuropathiesNEW! CMTA Board Member Steve O’Donnell realized the tremendous need for a CMT physical therapy-centered exercise video series and partnered with renowned Physical Therapist/Neurologic Clinical Specialist Mike Studer to create a comprehensive fitness program.Read more ...
- Let’s Move!In sketching a framework for exercise for people with CMT, we are looking at the person as a whole with the goal of making gains in mobility, independence and overall well-being.Read more ...
- Physical Therapy and Exercise: Getting the Right DoseBecause CMT affects each person differently, exercise has to be tailored to the specific impairments identified and dosed effectively. As a mobility expert, a physical therapist can provide guidance in finding the optimal program.Read more ...
- Balance Walking Stick Exercises for CMTThe Balance Walking for CMT Video Series demonstrates how using balance walking poles can dramatically increase the confidence, fitness and mobility of people living with CMT.Read more ...
- The CMT Exercise Video SeriesCreated by physiotherapist Rebekah Lee, the CMT Exercise Video Series focuses on functional improvement for those living with CMT.Read more ...
Nutrition & CMT
Are vitamins, antioxidants, and supplements good or bad for CMT?
There is little research on the effects of vitamins on CMT.
alpha lipoic acid
Alpha lipoic acid is an antioxidant that has been studied mostly in patients with diabetes. There is some objective evidence that it reduces painful symptoms, but it is not clear if it prevents nerve damage. The agent has not been studied in CMT, to our knowledge, and it is important to know that the mechanisms of nerve injury differ between diabetes and CMT.
L-histidine is an essential amino acid that is supplied in adequate amounts in any good diet. To our knowledge, there are no studies using L-histidine in patients with neuropathies and none in hereditary neuropathies.
Taking too much B6 is bad. Other than B6, the B vitamins have no known risk. There is no known association between biotin and neuropathy. The only B-vitamin clearly known to cause neuropathy from excessive use is pyridoxine (B6). However, all vitamins should be taken in conventional doses unless otherwise directed.
As far as we know, collagen peptides should not pose a problem.
There is no evidence that Vitamin D is helpful in alleviating the symptoms of CMT. However, if you are Vitamin D deficient, discuss supplementation with your doctor.
There is no known risk of taking other vitamins as long as you don’t take megadoses of these supplements. A megadose is 10 times or more the recommended daily amount.
In August 2018, it was reported that the dietary supplement lecithin improved the myelination of diseased Schwann cells. The study showed a modest improvement in the rat model of CMT1A but has not yet been duplicated.
Ultimately, if you choose to take a lecithin supplement, you would be wise to consult your doctor in order to establish a safe dosage. The CMTA at this point does not recommend lecithin supplementation, but there are reputable web sites that give approximate doses for treatment of other conditions, like high cholesterol. Care should be taken if there are any allergies to eggs or soy, as these are often sources of lecithin supplements.
We know of no suspicious or theoretical problems with magnesium citrate or calcium lactate. There were a few reports of sudden neuropathy with St. John’s Wort in the late 90s, but very little since then. Podophyllin resin is clearly neurotoxic and is contained in certain roots used in Chinese herbal remedies, but it hasn’t been used in Western supplements since the 1980s. One problem is that the full ingredient list in some herbal supplements is not available, accurate or required.
What is the best diet for someone with CMT? I’ve read about the Wahls protocol, the paleo diet, a high fat diet and Keto, just to mention a few. I’m so confused!
At this point, there is no diet that has been proven to show improvement in CMT symptoms or disease process. However, everyone has unique diet needs related to energy levels, weight maintenance, etc. The best possible diet you can be on to manage your CMT symptoms is one that is nutritionally balanced in a way that your muscles receive all the necessary macro– and micro-nutrients to optimize their function. Weight maintenance is also important in order to maximize your ability to move your body pain-free and with as little fatigue as possible.
Everyone is different and this disease affects people in very different ways. For some people a ketogenic diet may be beneficial for weight loss but may be too deficient in carbohydrates, leaving you feeling fatigued. Wahls protocol is a modified Paleo diet, which may have benefits for some, but again may be too low in carbohydrates for others. Everyone responds differently.
The short answer is there is no one-size fits all. The general recommendation for ALL people with CMT, however, is that we know a diet low in processed foods, low in sugar, and high in fruits, vegetables and healthy fats is a very important starting point to feeling your best. This means cooking from scratch, eating 5-7 servings of fruits or vegetables per day, and incorporating foods like avocados, olives, nuts and cold-water fish into your diet while limiting processed carbohydrates and sugar. That is absolutely the best starting point. Protein is necessary but shouldn’t be consumed excessively, as this can lead to weight gain. Choosing a variety of protein sources such as cold-water fish, poultry, grass-fed red meats and beans is important to get a variety of nutrients.
If you feel you are doing well incorporating these basic dietary guidelinesn but feel lost or are unhappy with your current energy levels or mobility, it may be worth meeting with a neuromuscular registered dietitian to help develop a more customized direction for you to take with your nutrition.
Are there any foods or nutritional supplements to help treat my chronic CMT-related fatigue?
Constant fatigue can sometimes be inevitable with CMT, but making sure your nutrition is optimized will help minimize the controllable aspect of your fatigue. Food provides energy for all cells in the body, and the types and amounts of certain foods can influence the way your body uses that energy. Calories are the specific units of energy found in foods. Calories are provided by the macronutrients which are carbohydrates, protein, and fat. Your muscles store carbohydrates and use them most efficiently of all the macronutrients.
When you have CMT it is important to make sure you’re eating enough carbohydrates for your muscles to have a steady fuel source, but too many simple carbohydrates can make you feel more tired. Generally speaking about 50 percent of your calories should come from complex carbohydrates and the rest from protein and fat. However, this does vary from person to person and you may need to experiment with your own diet to find out the best amount of carbohydrates for you. Simple carbohydrates, like sugar, candy, syrups/honey and refined grains, can leave you feeling more tired. Ever hear the term “sugar crash?” That term comes from the tired feeling you get after eating an excess of simple carbohydrates. These foods digest too quickly and cause a spike in your blood sugar. You may feel energized at first, but once your body burns off that sugar you’re likely to feel more tired. Focusing on food sources of complex carbohydrates such as beans, legumes, fibrous fruits, whole grains, starchy vegetables and dairy is a better way to get your carbohydrates without a sugar crash. Aiming for foods with less than 5g sugar per serving and 5g fiber or more per serving is best.
In addition to complex carbohydrates, micronutrients play an important role in providing your body with usable energy from food. Micronutrients are vitamins, minerals, and antioxidants. B vitamins are the most important players in the energy production game and they are very easy to get from food. The top food sources of B vitamins are leafy greens, salmon, eggs (with yolk), shellfish, poultry, beef, fortified whole grains and sunflower seeds.
There are no specific supplements to take for fatigue. Focusing on a varied diet with adequate carbohydrates and a wide variety of fruits and vegetables will likely meet all of your micronutrient needs. If you feel you may not be meeting all of your vitamin and mineral requirements, a daily multivitamin is the best bang for your buck and will provide all the vitamins and minerals you need without excess.
I have gained a lot of weight throughout the year due to shelter-in-place COVID restrictions, stress, etc. Is CMT making this worse? What can I do about it?
First of all, you’re not alone! This is one of the most common things I’ve heard from patients and clients in recent months. Weight gain during the last nine months or so is very common. For most people it has been a combination of stress, uncertainty, depression, lack of routine, inability to fit in traditional physical activity and lots of free time to eat.
If it took you nine months (March to December) to gain the weight, you can count on it taking at least nine months to lose again. That said, it is most likely going to take even longer because weight loss is inherently more difficult than weight gain. The bottom line is to adjust your expectations and try to exercise patience during the process. The most important thing is to just keep going, stay consistent and try not to let the slow progress derail you. If you have a tough day, making small progress and steps forward is always better than staying off track.
CMT itself is likely not slowing your weight loss, although you may be limited in physical activity which can make weight loss more difficult. When we discuss losing weight, what we’re really talking about is creating a calorie deficit. Calories in must be less than calories out in order to lose weight. Exercise alone is unlikely to be enough to promote weight loss without dietary adjustments. Exercise helps create a larger calorie deficit and has more benefits including muscle health, cardiovascular health, mental health, etc., so it is important to exercise regularly on this path to weight loss. Diet, however, is going to have the highest impact on weight loss. Eating less, but still above the basal metabolic rate, is the target to hit. For most women BMR is 1200-1500 calories per day; men are 1500-1800 calories per day. Eating significantly less than your BMR may actually stunt your weight loss efforts.
It may help to really examine your eating habits during the shelter-in-place and identify the parts that significantly changed from what you were doing before. Those are the parts of the diet to target and try to work on. There is not one general recommendation for everyone to help lose weight; it’s a matter of looking at your individual habits and making adjustments for the most success. Don’t give up! Working on your diet and exercise on a daily basis will yield results over time, but it will likely take longer than you hoped.