Cmt Pain

[iainw]

Hello i have type 1 cmt iv have multiple operations on both feet i have had numbness in my hands and feet for years

But in the last 6 months im getting serious pain in both my arms , legs , and neck

i also now get numbness and Muscular pain in my arms and legs

is this normal ?

[Morllyn]

iainw My husband has CMT and has intermittent pain in his feet due to neuropathy, which can cause pain just about anywhere. I would check with your doctor to make sure though.

I have MS and it has caused neuropathic pain down the outer parts of my left side for 40 years and know other MS patients that have many kinds, and places, that neuropathy has caused them pain.

[iainw]

yes iv been to the doctors recently and they said from i may have ME CFS

[spabbygirl]

It sounds like it. I've had that for years, I used to get miffed that I have lack of sensation but I still get pain. I asked my consultant why that should be and he said he didn't know, but it happens. I have Lofepramine, which takes the edge of it a bit. Its a tricyclic anti-depressant but it has nerve pain relieving side effects. They started me on the cheaper version but it made me feel worse so they changed me to a more expensive drug.

Good luck with managing it.

[iainw in reply to spabbygirl]

ok thanks for that ill ask my doctor

[caroleanne2468]

Hi sorry to hear about all the operations that you've had. It was suggested to me about having operation on feet but I decided against it as I had 2 operations years before having my diagnosis of CMT1E only to find it made things much worse.I to get numbness in legs , but go through periods where it comes and goes. I know the numbness is Normal , allthough not everybody with our condition gets it.