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Living with Polyneuropathy CIDP, GBS, & CMT

CMT ers I need guidance w/your experience

#1

I just received the AFO’S (braces) for my feet. I love them. I can walk fast and stand up straight while I am walking. I thought I would be embarrassed b/c I had to get sz 10 tennie shoes to fit them in. However, I am not bothered by it at all. Does any one with CMT know what we do for our hands? I just got medical insurance and am taking 1 thing at a time. I also started burping night and day non- stop. Does any one with CMT have this concern? I went for an Endoscopy last Friday. Thank you!!

#2

besides using a hacksaw to cut my hands off you mean? I’m CMT2 and despite the neurologist telling me most people have no pain that isnt the truth in my case. i set my hand pain on a 1 to 5 scale, meaning 1 is no pain/ buzzing/ sweating/tingling/icy feeling. I haven’t been less than a 2 for 2.5 years, some days up to a 4+. stretch your hands and forearms daily so you don’t end up clenching, I am thinking I may soon need night braces for my hands to keep them open at night, i wake up with tight fists. no idea on the burping issue, but each of us present differently with our genetic malware, lol

#3

What the heck is he really saying? “Most others” as some way of questioning the validity of your pain or its relationship to your disease. These comments feel they are invalidating your pain without saying “it suggests there is more to the story”. “Are you trying to get pain killers?” “Perhaps suggesting you are overstating your symptoms”, or they may come right out and question you, it’s time to move on to another doc.

#4

My brother, who has CMT, has had trouble with burping. He found that taking Pancreatin helped him. This is an over the counter supplement.
BJR

#5

As for the hand pain; ask your Dr. about amitriptyline. They often give this to people with diabetic neuropathy pain. I recently told a friend who had severe hand pain and is diabetic and she talked with her Dr. The Dr. gave her a prescription and the next time I talked with her she said “Bobbie, you have saved my life, I am so much better and feel like a new person”.