Re: Pain - was Trial using Night Orthotic

[Guest guest]

<< Someone in the audience asked him about the pain associated with CMT. He

said

that CMT itself does not cause pain, that the pain must come from another

source.

I was feeling quite an objection building up inside of me, bc I was thinking

of so many people on here who would argue strongly that point. >>

Medical people accept that diabetics and other people have nerve pain, so I

wonder why so many don't believe CMTers can have it. I don't have structural

pain, only nerve pain. Twenty-four hours a day my nerves are telling me that

" hot " wires in my legs are electrocuting me from inside. I also have

firecrackers exploding in my feet, especially in my toes. Very painful, but I

know it's nerve pain, not caused by what I'm doing or how my feet are shaped.

Actually, I DON'T have the very high arches, or pez cavus, and my feet aren't

flat. I just have low arches and quite ordinary looking feet. My feet feel

normal to the touch, so I know they aren't actually cold, and my circulation

has been tested and it's fine, yet my feet tell me they are painfully frozen

all the time, regardless of how carefully I keep them warm. That is nerve

pain. By the way, what medical people call tingling for me is electric

shocks. By calling it tingling they can minimize it in their minds. My son

heard the term tingling and assumed my feet/legs alway felt the way a limb

does after it's fallen asleep and tingles. When I explained what it REALLY

feels like, electric shocks and jolts, and wrenching spasms, he was impressed

and realized it's not benign pain.

My neuro and my GP believe me that I have nerve pain. They understand what I

mean because they have heard of it in other disorders. My feet/legs are also

numb to the touch, so all of the pain is inside, from the nerves sending

weird messages. I was told that nerve pain is from the nerves dying. It makes

sense to me. Now my pain is not as intense as it has been in the past, and my

legs are much weaker, so I assume many of the nerves have finished dying so

there are fewer of them to send out pain messages.

Often I quote from sources. None of this is from sources, it's just my

experience. Other CMTers have different experiences. That makes everything

interesting and confusing.

Kat

" A friend is one that knows you as you are, understands where you have been,

accepts what you have become, and still, gently allows you to grow. "

~~~ Shakespeare ~~~

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" It takes a long time to grow an old friend. " ~ Leonard