CMT Type 1A and gabapentin for restless legs

Posted by msamm2 @msamm2, Mar 3, 2023

Anyone dealing with CMT Type 1A disease and taking gabapentin?

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Hello @msamm2 and welcome to Mayo Clinic Connect. Are you taking gabapentin for restless legs or as part of your treatment for CMT Type 1A? I'd like to connect you to the right group of members, either who have CMT Type 1A or who have experience with restless legs syndrome.

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I had begun to develop RLS symptoms but I found if I stretch at night before I go to sleep I have no issues. I especially stretch my feet and leg muscles with so I know they’re limber and less likely to cramp.

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I had have had restless legs for several years. A year of riding a bicycle on a virtual program (ROUVY) for about an hour a day eliminated it. After an operation which was followed by a six week liquid diet, I lost six kilos and became thin and very weak. The restless legs started again, usually in the evening, I was taking ondansetron, metoclopramide and cyclizine for nausea and they were aggravating it, particularly cyclizine. There was no problem with ondansetron. The restless legs would wake me about an hour after going to sleep and the only relief was to walk around until it wore off. I found a hot shower before bed to be helpful. A friend gave me a tub of Athelite Pain Away for sore muscles and joints and I found rubbing this in to my legs allowed me to sleep after about half an hour. The heat of the ointment masks the urge to move the legs. I tried magnesium oil a couple of times without success but after reading a web site I tried rubbing the oil into the legs during the day and leaving it on for at least 20 minutes, washing it off and repeating just before bed time, with a hot shower has virtually eliminated it. A large dose of cyclizine will still wake me but the Pain Away ointment still works even then.
I hope this is of some help, it is a terrible affliction.

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@amandajro

Hello @msamm2 and welcome to Mayo Clinic Connect. Are you taking gabapentin for restless legs or as part of your treatment for CMT Type 1A? I'd like to connect you to the right group of members, either who have CMT Type 1A or who have experience with restless legs syndrome.

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Before bed, I take three 300 mg capsules of Gabapentin. In addition, I take two 500mg tablets of extra strength Acetaminophen and one tablet of 100 mg Trazadone, a sleep aid. For about 5 years, I had periodic Restless Leg Syndrome (RLS) associated with sciatic pain and numbness. Nine months ago, I had knee replacement surgery on my right leg. Shortly after the surgery, I began to experience painful RLS in my left leg. This usually occurred in the evening and especially during sleep. Many nights, I got little to no sleep. I had been taking one 300 mg capsule of Gabapentin for several years, but that did not help my more severe RLS. I got relief from RLS only after my primary care doctor recommended I increase my dose of Gabapentin. I did that, and I have had RLS only a 3 or 4 times since the change in my dosage to 900 mg of Gabapentin before bed.

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