Everyday life
Exercise and lifestyle
At a glanceNo exercise or lifestyle measure has been shown to treat, slow or reverse CMT2C, and none of the exercise trials so far were done in CMT2C: most participants had CMT1A [240]. Even so, exercise has the best evidence in CMT generally [56]. The consistent advice is moderate, low-impact activity, tailored to you and guided by a physical therapist who knows neuromuscular disease [65]. There is no special CMT diet, but avoiding obesity is advised in TRPV4 disease [6], and if you drink, moderation is the advice [97].
For a step-by-step plan with pictures, see the movement guide. This page covers how to build a plan with your care team, what the evidence says, and what is known about diet and alcohol.
Build your exercise plan, step by step
The aim of exercise in CMT is to keep the muscles you have working well, protect your joints and balance, and stay fit, without overdoing it. Here is one way to put a plan together with your care team.
Want a real example? I describe my own routine in How I train. It is my personal approach, not a recommendation.
Get a plan from a therapist who knows CMT
The Charcot-Marie-Tooth Association (CMTA) advises exercise tailored to you and guided by a physical therapist who knows neuromuscular disease [65]. The Hereditary Neuropathy Foundation (HNF) suggests asking a therapist, before you begin, whether they have worked with CMT [127]. CMTA's directory lists clinicians with CMT experience [128], and some therapy can be done by video call, often called telerehabilitation [129]. One visit can be enough to design a program you then follow at home or at a local gym. HNF also runs free virtual fitness classes built for people with CMT [130].
Start low and build slowly
Moderate effort with more repetitions is recommended, because high-intensity training is linked with more injuries in neuromuscular diseases [56]. Very heavy or high-resistance exercise can make fatigue and muscle damage worse for some people [66], so typical heavy weightlifting may not suit you and can cause pain. In a trial in children with CMT, moderate training at 50% to 70% of their maximum was safe and slowed weakness in the ankle [60]. No study has tested very heavy lifting in CMT, so avoiding it is a precaution rather than a proven rule.
Choose gentle, low-impact activities
CMTA suggests swimming and water exercise, walking with poles or braces, yoga and Pilates, alongside resistance and balance work, and advises avoiding “high-impact or overly strenuous activities” [65]. In a trial in 40 people with different kinds of neuropathy, water-based physical therapy improved walking and balance as much as land-based physical therapy [132].
Make it a habit
Pick the same time and place, and start smaller than you think you need to. Support from other people is one of the strongest predictors of sticking with a home exercise program [134], and programs built around an exercise partner give a small boost to activity [133]. New habits take time: in one study, a daily behavior took a median of 66 days to feel automatic, ranging from 18 to 254 days, and missing a single day did not undo it [135].
Listen to your body and your team
“Overwork weakness”, the idea that overusing weak muscles speeds their decline, is unsettled: the largest study, in 271 adults with CMT1A, found no sign of it [131], while smaller studies suggested it [64]. Treat weakness or pain that lasts into the next day as a sign to ease off, and tell your therapist. Raise any breathing or voice symptoms with your team before starting aerobic exercise [3].
What the evidence says about exercise
- A Cochrane review found “some evidence that strengthening exercise programmes were moderately effective in increasing the strength of tested muscles,” although it included only three trials and is more than twenty years old [57].
- A 2024 systematic review of exercise in CMT covered 7 studies and 170 patients, with study quality ranging from good to poor [56].
- In a randomized trial in 60 children with CMT, 24 weeks of progressive resistance training preserved ankle strength over the next two years, compared with a sham program [60]. The University of Sydney reported that the training slowed the progression of weakness by “up to 30%” over two years [61].
- In adults, a 12-week home resistance program improved strength [62]. A 24-week interval cycling program improved fitness and reduced fatigue in a small study without a comparison group [56]. A 12-week home balance and resistance program improved postural stability, with 93% adherence [56].
- Intensity matters. The 2024 review states that “high intensity of training is associated with a decrease in performance and an increased risk of injury in patients with neuromuscular diseases,” and recommends lower intensity with more repetitions [56].
- Overwork weakness (the idea that overusing weak muscles speeds their decline) has been proposed [63] and re-examined [64]. It remains unresolved, so it is best to avoid overworking weak muscles, as a precaution.
- What CMT organizations say. The CMTA's and HNF's advice is summed up in steps 1 to 3 above [65].
- The CMT2C caveat. None of these trials were done in CMT2C, and most participants had CMT1A [240]. Shortness of breath is common in TRPV4 disease [3], so it is sensible to raise breathing and voice symptoms with your team before starting an aerobic program.
For a practical plan with pictures, a decision guide and advice on braces, see the movement guide.
Diet: small changes that last
There is no evidence-based “CMT diet.” Patient resources recommend fruits, vegetables, lean protein and complex carbohydrates, and note that weight gain can be a serious issue in CMT because weakness and fatigue make it hard to stay active [84]. GeneReviews, the main clinical summary on TRPV4 disease, specifically advises avoiding obesity [6]. The European CMT Federation also suggests monitoring for swallowing difficulty and respiratory issues [84].
Small steps work better than big overhauls. Rather than changing everything at once, pick one change, such as adding a portion of vegetables to one meal or swapping a sugary drink for water, and keep it until it feels automatic before adding the next. Habits take weeks to form [135], and a change you can keep is worth more than a perfect plan you drop.
Alcohol
No study has looked at alcohol in CMT2C, and there is very little research on alcohol in CMT at all: a 2023 systematic review of potentially harmful medicines and substances in CMT searched for reports on alcohol and found none it could include [36]. The advice that exists is general. Long-term heavy drinking can itself damage the peripheral nerves (alcoholic neuropathy), and that damage is usually permanent [96]. The Muscular Dystrophy Association notes that excess alcohol can cause this kind of acquired neuropathy and so might make CMT worse [83], and the Hereditary Neuropathy Foundation advises drinking only in moderation [97]. Alcohol also impairs balance and makes injuries more likely [98], which matters in CMT2C: in the TRPV4 registry, 79% of participants reported difficulty with balance [3]. If you drink, the cautious approach is to keep it light, and to ask your doctor or pharmacist whether alcohol is safe with the medicines you take.