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Living With CMT2CHome

Treatment and trials

Pain and mental health

At a glancePain is common in CMT, but it is often missed and undertreated [264]. In a survey of 617 people with CMT, 71% reported pain, and about 4 in 10 of them said it got in the way of daily activities [263]. In the TRPV4 registry, about half of participants (49%) reported arthritic-like pain [3], but pain in CMT2C has not been studied in depth. Looking after your mood is part of treating pain, not separate from it.

Know which kind of pain you have

CMT pain can come from the nerves themselves (neuropathic pain: burning, tingling, shooting or electric pain) or from joints, feet, the back and overworked muscles (musculoskeletal pain). Many people have both. In a small study of people with CMT type 1A who had pain, half had only musculoskeletal pain and 44% had both kinds [265]. The two respond to different treatments, so describe your pain to your care team. The symptom tracker can help.

Medicines

For nerve pain, international guidance, updated in 2025, recommends three groups of medicines to try first: tricyclic antidepressants such as amitriptyline, the antidepressants duloxetine and venlafaxine, and gabapentin or pregabalin [267]. Benefits are usually modest: in the 2025 review behind this guidance, about 5 to 9 people had to take one of these medicines for one extra person to get real relief compared with a placebo [267]. In the earlier 2015 review, more than half of the trials were done in people with diabetic nerve pain or nerve pain after shingles, and it reports no trials in CMT [266]. Ask your doctor or pharmacist to check doses, side effects and interactions with your other medicines.

If your breathing muscles are weak, say so before starting gabapentin or pregabalin. Their US prescribing information, for gabapentin [304] and for pregabalin [305], warns that both can cause serious, even life-threatening, breathing problems in people whose breathing is already impaired, or when they are taken with opioids or other medicines that cause drowsiness. It advises a low starting dose and watching for slowed breathing and sleepiness in these cases.

Non-drug options

  • Physical therapy, well-fitted braces and footwear, heat and paced rest. In a survey of 399 members of a CMT support group, rest was the most common way people eased their pain (60%), and 39% used heat [268]. The movement guide covers braces and exercise.
  • Mindfulness-based stress reduction (MBSR): see below.
  • Cognitive behavioral therapy (CBT) for pain, which in trials helped about as much as MBSR [269].
  • Dry needling for tight, painful muscles: see below.

Mindfulness-based stress reduction (MBSR)

MBSR is an eight-week course built around mindfulness meditation. Jon Kabat-Zinn created it in 1979 at the Stress Reduction Clinic of the University of Massachusetts Medical School [274], and some of its earliest research was done in people with chronic pain [275].

What the evidence says. In a review of 21 trials in people with chronic pain, mostly musculoskeletal pain such as fibromyalgia and back pain, MBSR and CBT both improved physical function, pain intensity and depression compared with control groups (usual care, a waiting list or an attention control), with no clear difference between them [269]. In fibromyalgia, a 2026 review of 11 trials found that MBSR eased pain only in the short term and only compared with no treatment, but it did improve quality of life, with a small benefit still seen at long-term follow-up [276]. MBSR has not been studied in CMT.

Tips for CMT2C. If the course includes gentle yoga or other movement, tell the teacher about any weakness or balance problems so you can do it seated or with support, as you would with any exercise plan [65].

Dry needling

In dry needling, a trained clinician, usually a physical therapist, inserts thin needles into tight, tender knots in muscle (trigger points). A review of 42 trials found that dry needling by physical therapists reduced musculoskeletal pain more than no treatment, sham needling or other treatments, though the evidence was mostly low quality [277]. A 2025 summary of eight reviews found short-term relief, but too little data to show a long-term benefit, and the certainty of the evidence was very low [278].

For CMT2C. It may suit muscle pain from muscles working overtime, rather than nerve pain. It has not been studied in CMT. Tell the practitioner about any areas of reduced feeling and any weakness in your breathing muscles. Needling over the chest wall, upper back, shoulders or lower neck carries a small but real risk of a collapsed lung (pneumothorax), and symptoms can start hours or even days later [279]. If you feel short of breath or have chest pain after a session, seek urgent care.

Compassion meditation

Loving-kindness meditation, a form of compassion meditation, means silently offering kind wishes, first to yourself, then to people close to you, and eventually to everyone. In a small pilot trial, 43 people with chronic low back pain were randomly assigned to an eight-week loving-kindness program or usual care. Pain and distress improved in the meditation group, and on days people practiced more, their pain was lower [281]. The study was small, and none of this research was done in CMT. Still, the practice is free and gentle, and you can do it lying down. I describe my own approach in Self-compassion: what helps me.

Mental health support

Chronic pain often comes with low mood, anxiety, distress and poor sleep, and the link runs both ways: these problems can also make pain worse [271]. In a Serbian study of 51 people with CMT type 1A, those with nerve pain were more often depressed and more disabled than those without it [272]. Consider seeing a psychologist or counselor, ideally one who works with chronic pain or long-term illness, and joining a CMT support group. Why CMT2C is so hard to live with explains the hidden side of living with it.

If you ever feel hopeless or unsafe, contact your doctor or local emergency services straight away. The emotional health guide lists crisis lines you can call or text.

Next: Practical tips