Phantom feelings?

General General CMT Discussion
1

Hi, I was just wondering if anyone else experiences something similar, and if so have they found a way of combating it?
When this initially started happening a few years ago, it was a very minor problem but has gotten considerably worse and now keeps me from getting to sleep at nights.
I experience the sensation of tiny little bugs crawling on my face and I'm continuously having to "wipe" them away which as you can imagine is a very unpleasant feeling.
By far the worse though is the feeling in my toes which is kinda hard to explain. I get this feeling on the tips of my left toes and across the knuckles of my right toes and this is the one that really keeps me awake at night. It's as if I've developed super sensitive nerve endings and can feel every single individual fibre of anything that comes into contact with them. It's one of those really intensely unpleasant sensations like fingernails down a blackboard. When it first began, I was able to simply put my feet outside of the bedclothes and the problem was solved, but now even if I know that my feet aren't in contact with anything, I can still feel the same sensation and there's absolutely no way of escaping it. It's so bad I feel like I'd be happier with my toes amputated, it's making me so miserable.

My doctor said that he's never had this complaint before so is unsure how to treat it, and he's given me Amitriptyline which only seems to make me really groggy in the mornings. Has anyone else experienced anything similar?

2

Scottish…this is JohnKemp…i have really got to talk to you. I was diagnosed with CMT 6-7 years ago. The problem i have with pain…for the past 25 years, dozens of Drs…nobody has helped me, the pain usually comes at night, my right toe on the top or my left toe on the side, about 4 nights in a row then i am ok for a week or 2. I have taken Lyrica, Cymbalta, etc., there is not a Dr. That knows why i get pain, like you some nights i could tear off my toe, toe it feels like 50 or so BEE STINGS. I have got to talk to you more, more things to tell you, and am curious of more things you can tell me…very interested John K

3

Hi John and thanks for the reply. To be honest, I wouldn't describe this as pain, just an incredibly unpleasant feeling.
I did used to have pain across my toes, within a few years of being diagnosed (30 years ago) I had a burning feeling across my toes which was extremely painful.
Nowadays the pain I feel on a daily basis is like a dull but nagging toothache in my thighs and arms. The most effective painkiller I use for this is a combination of Tramadol, gabapentin and paracetamol.
Hope this helps,
Steve