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Pain Questions

  1. I have recurring, pulsating electrical shock-type pain in various areas of my feet. It occurs about 3-4 times a month. It lasts at least 24 hours with a zapping pain every 30-60 seconds. I cannot sleep during this time period. Of course, I am exhausted afterwards. I take amitriptyline (25 mg at night), which has helped a little.
  2. A study published in the November 2001 issue of the journal Neurology reported a significant reduction in the severity of neuropathic pain among patients taking an antidepressant called buproprin, which is marketed by GlaxoSmithKline under the name Wellbutrin. In the study, patients with neuropathic pain, but not depression, were given either buproprin or a placebo, and 71% of those given buproprin reported a decrease in pain, as compared with 10% of the patients taking the placebo. Some of the patients described mild side effects, but buproprin unlike trycyclic antidepressants normally prescribed for neuropathic pain, appeared not to pose the risk of causing irregular heartbeats in cardiac patients. Would buproprin be of any benefit in reducing nerve pain associated with CMT?
  3. 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, numbness in my right leg, 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?
  4. Would you please comment on the possible neurotoxic effect of Tylenol, aspirin, or Advil as over-the-counter pain relievers for CMT patients?
  5. I am currently taking Tylenol Arthritis Pain formula, but the directions say that it should not be taken for more than 10 days. The same direction applies to Aleve, and there are now concerns that Advil and other NSAIDS may lead to complications similar to those caused by Celebrex and Vioxx. Is there a recommended drug for the control of chronic pain due to arthritis that would not cause undue complications for someone with CMT?
  6. I am a 25 year old who was diagnosed with CMT by EMG. My doctor also diagnosed me with Charcot joint, osteoarthritis, and lumbar disc syndrome. I have a severe crippling disease that has gotten progressively worse. I have had numerous fractures and sprains throughout my lifetime, and a few years ago I had a deformed bone taken out of my right foot and screws put in to tighten my ligaments. My doctor has me on 20 mg of methadone for long-acting pain relief and Vicodin for breakthrough pain. I also take Valium for anxiety. The pain has gotten a lot less, but since starting the methadone, I have been waking up with numbness in my hands and my hands in a clawed position. The doctor says that in order to stop this medication, I must be slowly weaned off of it. Could the medication be making my CMT progress, and how safe are narcotic treatments for long term use? I have tried Neurontin with little or no relief.
  7. I noticed on your medical alert page that you put amitriptyline in the negligible to doubtful risk category. I definitely had a very bad reaction to it. To date it was the worst of any other meds I have taken for CMT nerve pain. I have CMT and have tried many medications to ease the neuropathic pain. I have had little success. Vicoden is the most manageable without any major side effects or thought-process disruption. Neurontin caused me to break out with very painful cysts on my face and did little to ease the nerve pain. I recently was prescribed amitriptyline. The very first dose of 5 mg caused some weakness in my legs and increased back pain. On the fourth day, when I increased the dose to 10 mg, I suffered such severe back and leg pain that my daughter took me to the emergency room. By the time I returned home (7 hours later), my pain had eased quite a bit, so I went ahead and took the amitriptyline as prescribed when I went to bed. Within an hour I was in horrific pain again, lasting about 6 hours. Needless to say, I will not be taking this drug again.

Pain Answers

1. I have recurring, pulsating electrical shock-type pain in various areas of my feet. It occurs about 3-4 times a month. It lasts at least 24 hours with a zapping pain every 30-60 seconds. I cannot sleep during this time period. Of course, 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 earlier this year in the CMTA newsletter. 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 3-4 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 a day dose. Gabapentin has fewer side effects, but is usually taken 3 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.

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2. A study published in the November 2001 issue of the journal Neurology reported a significant reduction in the severity of neuropathic pain among patients taking an antidepressant called buproprin, which is marketed by GlaxoSmithKline under the name Wellbutrin. In the study, patients with neuropathic pain, but not depression, were given either buproprin or a placebo, and 71% of those given buproprin reported a decrease in pain, as compared with 10% of the patients taking the placebo. Some of the patients described mild side effects, but buproprin unlike trycyclic antidepressants normally prescribed for neuropathic pain, appeared not to pose the risk of causing irregular heartbeats in cardiac patients. Would buproprin be of any benefit in reducing nerve pain associated with CMT?

That is correct. Buproprin probably works for some patients with neuropathic pain, but it remains to be seen whether it works better than traditional tricyclics, or Neurontin.

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3. 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, numbness in my right leg, 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.

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4. Would you please comment on the possible neurotoxic effect of Tylenol, aspirin, or Advil as over-the-counter pain relievers for CMT patients?

There are no reported contraindications in taking these over-the-counter drugs for persons with peripheral neuropathies.

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5. I am currently taking Tylenol Arthritis Pain formula, but the directions say that it should not be taken for more than 10 days. The same direction applies to Aleve, and there are now concerns that Advil and other NSAIDS may lead to complications similar to those caused by Celebrex and Vioxx. Is there a recommended drug for the control of chronic pain due to arthritis that would not cause undue complications for someone with CMT?

Pain control with the recent Vioxx concerns is a problem for all types of patients, not just CMT patients. The issue really needs to be discussed with each treating physician to weigh the minor risks of these drugs against the need for long-term pain control. Each case must be considered independently. The risks are for many things but not for worsening of neuropathy. Unfortunately, there are no easy answers, and there is no preferred agent for all patients. For inflammatory causes of arthritis there are other agents in use to suppress the arthritis which do not directly affect pain signals.

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6. I am a 25 year old who was diagnosed with CMT by EMG. My doctor also diagnosed me with Charcot joint, osteoarthritis, and lumbar disc syndrome. I have a severe crippling disease that has gotten progressively worse. I have had numerous fractures and sprains throughout my lifetime, and a few years ago I had a deformed bone taken out of my right foot and screws put in to tighten my ligaments. My doctor has me on 20 mg of methadone for long-acting pain relief and Vicodin for breakthrough pain. I also take Valium for anxiety. The pain has gotten a lot less, but since starting the methadone, I have been waking up with numbness in my hands and my hands in a clawed position. The doctor says that in order to stop this medication, I must be slowly weaned off of it. Could the medication be making my CMT progress, and how safe are narcotic treatments for long term use? I have tried Neurontin with little or no relief.

Contrary to public opinion, except in the case of over dosage, oral narcotics such as Methadone are some of the safer medications in use. I know of no evidence linking their use to worsening or causing neuropathy, abnormal muscle cramps or muscle spasm; however, the timing raises the question in this case. Your physician is correct that too rapid of a withdrawal can cause unpleasant symptoms. Intravenous heroin has very rarely been linked to nerve injury, but almost certainly because of toxic and unintended side products in the injections used by some addicts. Methadone and Vicoden pills have no such concerns. Certainly, the underlying problems of CMT, Charcot joint, arthritis and spine disease must also be considered by your physician. Simple carpal tunnel syndrome is common and treatable in patients with neuropathy of any cause, including CMT. There are other medications not mentioned that can possibly cause the described symptoms, especially certain nausea medications and some others. Having your physician see the clawing and examining the hand is needed for specific recommendations, but the narcotics would be a highly unlikely underlying cause.

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7. I noticed on your medical alert page that you put amitriptyline in the negligible to doubtful risk category. I definitely had a very bad reaction to it. To date it was the worst of any other meds I have taken for CMT nerve pain. I have CMT and have tried many medications to ease the neuropathic pain. I have had little success. Vicoden is the most manageable without any major side effects or thought-process disruption. Neurontin caused me to break out with very painful cysts on my face and did little to ease the nerve pain. I recently was prescribed amitriptyline. The very first dose of 5 mg caused some weakness in my legs and increased back pain. On the fourth day, when I increased the dose to 10 mg, I suffered such severe back and leg pain that my daughter took me to the emergency room. By the time I returned home (7 hours later), my pain had eased quite a bit, so I went ahead and took the amitriptyline as prescribed when I went to bed. Within an hour I was in horrific pain again, lasting about 6 hours. Needless to say, I will not be taking this drug again.

The painful reaction experienced is a very unusual reaction to Amitriptline (Elavil). The drug is on the negligible list only because of some very old and unconvincing reports from the 1970’s. There are other common side effects attributable to predictable blocking of autonomic nerve signals that cause dry eyes and mouth and bladder complaints; increased pain and weakness are not typical side effects. Drowsiness is also common. The drug is still frequently used to treat the symptoms of neuropathy as long as the common side effects are tolerable; there are other similar drugs available with fewer side effects. However, the drug appears to be intolerable to this patient and probably best avoided. I have found no other similar reports of this kind in a review of the North American CMT database registry.

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