Re: pain

January 27, 2000

I've read about all sorts of nerve pain from CMT and other peripheral

neuropathies, and I experience many of them every day.

Some descriptive phrases of how the nerve pain may feel:

burning

freezing

wrenching spasms

cramping muscles

zapping electric jolts

firecrackers under the skin

bee stings

shooting, stabbing pains

being electrocuted from inside

hot electric wires stinging

Neurontin or other meds may reduce the various pains (or not), but most

CMTers who have pain learn they must live with it at some level. It won't

normally be eliminated, but may become tolerable. We are all different in how

much we may be helped as well as by how much we can or will tolerate. The

scale doctors use for evaluating pain is helpful for an individual, but it's

still subjective. My 10 (worst pain) will probably not be the same as your

10.

Pain is very subjective. What doesn't seem too bad to me may seem to be

almost impossible to bear for someone else. Or vice versa.

Speaking subjectively, women who have given birth are more pain tolerant than

people who haven't. The pain may be comparable, but moms are more apt to know

that they can tolerate more (usually! - in life I have learned absolutes are

rare).

Some CMTers have no significant pain, or only have it occasionally. Even that

is quite different from the CMTers who have it 24 hours a day, every day.

We are all so different.

Those are my thoughts on the matter (subjective, I know)

Kat

January 28, 2000

Gretchen -- FYI -- I did some reading on CMT and blood sugar levels.

Diabetics deal with peripheral neuropathy, but the cause is different from

CMT. However, some research has been done that indicates people with CMT

may also be intolerant to high sugar intake. I don't have diabetes, but

when I've been over-indulging (the holidays!!) it seems that the burning

pain in my feet increases. While my experience isn't as a result of

" scientific study " , I know that my foot pain is less when I eat a

well-balanced diet with minimal refined sugar. nne

-----Original Message-----

From: Gretchen Glick <liliwigg@...>

Date: Thursday, January 27, 2000 10:54 AM

Subject: [] pain

>From: Gretchen Glick <liliwigg@...>

>

>Hi Becky and Dimitrios, I also wonder about pain. Anyone who doesn't

>have CMT can't possibly know it DOES mean pain! (probably most of the

>researchers/doctors) etc. My pain has gotten better, tho, but standing

>on my feet (in one place) for any length of time will bring it back

>quickly, and then the pain is in my feet and back. If I keep moving, I

>mean, moving my feet, the pain doesn't come back. The Neurontin works

>well for me, also helps with sleep. I used to take Elavil (also known as

>amitriptyline) which helped also. My feet still can do that " burn " at

>night, for no reason, but if I lie on the floor, with knees bent on the

>couch, then cross my feet, so feet are higher that knees and hips, this

>burning goes away. In the summer I ice my feet.

>Gretchen

>

>---------------------------

January 28, 2000

Hi all, Ruth warren here,

I am fascinated hearing about the hot, burning pain that some of you

experience. My 9-yr-old Katey complains constantly of being hot or

" burning. " This is not a kind of pain that I experience with my CMT so I am

not always very sympathetic. Now I have a better reference to understand

what she may be trying to tell me. Thank you!

Ruth

>From: Gretchen Glick <liliwigg@...>

>Reply-onelist

> <onelist>

>Subject: [] pain

>Date: Thu, 27 Jan 2000 10:49:18 -0800