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Is pain normal?

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,

Yes, many people with CMT have pain. It is unfortunate that doctors do

not understand this. I have had the " burning feet " pain as far back as

about age 7, 3 years before my actual diagnosis. But my burning feet

pain now is managed by taking Elavil (amitriptyline) and also changing

shoes a few times a day. Sometimes on very hot days, sitting here at my

computer, I will have ice packs under my bare feet to cool them - or also out in

my garden while I am giving my flowers a drink, I love to put the cold hose on

them. My feet also burn in the winter too sometimes - weird, no cold feet for

me. Sometimes even while doing my aquatic circuit workout, I get a slight

burning. For that, I get out of the pool and just walk on the cool tiles. I also

had a year of some other wierd type pain - felt like electric sparks running up

and down my arms. Took Neurontin for that about a year. The " sparks pain "

stopped and hasn't come back.

I haven't been to a pain clinic, so am unable to offer my experience with that.

~ Gretchen

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