CMTA Legacy Society

By investing in the CMTA’s Legacy Society, you can ensure that children with CMT will grow up with the hope of a world without CMT.

For an overview on how to manage neuropathic pain, please read “Managing Neuropathic Pain” by Dr. Steven Scherer.

  • Is there a link between the degeneration of my joints and CMT?

    There are multiple types of pain operating in CMT. Neuropathic pain is typically burning and tingling and often occurs in the feet. And, because joints often have more stress put on them because of weak muscles (weak ankles etc), then knees and hips have to do more work in people with CMT. Therefore, in my experience, arthritic pain and joint as well as back surgery are more frequent in patients with CMT.

  • I have recurring, pulsating electrical shock-type pain in various areas of my feet. It occurs about three to four times a month and lasts at least 24 hours with a zapping pain every 30 to 60 seconds. I cannot sleep during this time period and I am exhausted afterwards. I take amitriptyline (25 mg) at night, which has helped a little.

    None of my CMT patients has mentioned this complaint, but a similar complaint was discussed in The CMTA Report. It certainly sounds like a pain originating in a nerve. Nerve root compression in the back must be considered as an alternate explanation. One hates to give daily medication for a pain that occurs three to four times a month, but the kind of medication that works for this must be taken chronically. Amitriptyline is a good drug, but is rather sedative and has to be used with caution in older people. Several of its cousins, nortriptyline and desipramine, are less sedative. If well tolerated, better pain relief might result from a higher dose. They are all convenient due to a once daily dose. Gabapentin has fewer side effects, but it is usually taken three times a day. One other option might be a TENS unit, which has electrodes placed on the affected limb through which a small electric current flows from a battery. This often alleviates this kind of pain.

  • I was recently diagnosed with CMT following referral to an orthopedist for multiple stress fractures in my foot. I have osteoporosis (-3.5) and began Fosamax treatment. I am now experiencing pain in my legs, particularly my right leg (which had the stress fractures of the foot). Sometimes I feel like needles are all over my legs. I have numbness and a low-grade ache in my right leg about two inches above my ankle. Sometimes my hands hurt a little. I have never experienced these pains before. I am losing muscle in my hands. Could Fosamax have a neurotoxic effect? If so, could I use Evista?

    Non-estrogenic medications to treat osteoporosis have their fair share of adverse effects, some of which are listed below:

    • alendronate: arthralgia (joint pain); bone pain; musculoskeletal pain; myalgia (muscle pain)
    • risedronate: arthralgia; myalgia
    • raloxifene: muscle cramps; myalgia

    You need to discuss your symptoms with your neurologist so that together you can best decide on the appropriate therapy for you.

  • What medications are most commonly prescribed for pain due to CMT? My husband has tried Baclofen, Neurontin, and tramadol so far for pain and none have helped at all. He was prescribed hydrocodone for a tooth problem and found it minimized his CMT pain more than anything else he has tried so far. Does it make sense that the hydrocodone worked for CMT pain and is it prescribed to CMT patients for that purpose?

    Most patients do well with Neurontin because the dose can be increased until it is successful. As for hydrocodone, narcotic drugs are not usually a good choice for extended use as they have addictive issues and so they are not generally used to combat CMT pain except in “flareups.”

  • What causes calf cramps in CMT? What can be done about the cramping?

    According to an article entitled Assessment: Symptomatic treatment for muscle cramps (an evidence-based review) by Hans D. Katzberg, MD, Ahmir H. Khan, MD and Yuen T. So, MD, PhD, “When the motor system is stressed, either by a neuromuscular disease or by a physiologic stress such as dehydration or excessive exercise, cramps become more frequent.”

    As for cramp relief, our CMT experts suggest drinking tonic water. It contains small amounts of quinine, which has been known to alleviate cramps.

  • Does massage therapy help with CMT pain?

    There is not much info on massage therapy and CMT. Deep tissue massage is not approved for those with CMT. However, some people find relief with gentle circulatory stimulus massage. Please consult with your physician before getting a massage to determine if this alternative approach is right for you.

  • Is it common for men with CMT to have daily painful erections?

    CMT does not typically affect the autonomic nervous system. This is not likely to be related to CMT.

  • Can CMT cause sciatica?

    Sciatica is a pain down the back and outside of the leg to the ankle usually caused by compression. The most common cause is from a herniated disc in the lumbar spine. In that sense, CMT does not cause sciatica. However, some patients with CMT have enlarged nerves and nerve roots, a condition that can predispose a person to sciatica.