pain meds for CMT

[Guest guest]

Rob,

It took me until age 35 to learn how to describe my CMT pain (the

terrible buring feet) to a neurologist, even though I first felt that

pain when I was about 7. At 35, I started taking Elavil for the pain,

and then also learned about using ice packs, cold lotions, walking on

tile, cold soaks, etc. (interestingly Elavil also works on my tremors

too)

Growing up with CMT and on the beach, I was always walking barefoot

in the water (Pacific Ocean is always cold) I would also love to soak

my feet in icy streams, or just " fall into " them lol In my childhood

home, our family room had a wonderful tiled floor - nice and cold. So

I think on one level, I was intuitively seeking cold for relief. I

remember going to high school dances (and dancing all night) only to

come home, take my shoes off (dead tired) and try to get my feet to

stop burning. After my senior prom, I filled the bathtub with

icecubes and literally let my feet almost freeze.

Same thing with work in retail sales in HS and college, my feet

burned so much I thought they would bleed (but I loved the jobs!)

My 12 step program helped me express " feelings " in general. From

there, I started opening up and communicating when I felt pain to

others including my doctor. Up until age 35, I did not know how to

communicate the pain I felt, and doctors, in their frustration, (and

mine) just supplied me with Valium (which did little for pain and

just helped my addiction along)

Several years ago I was experiencing intermittent electrical sparks

type pain in my arms - at rest, so my Internist prescribed Neurontin

and that helped greatly; I no longer have that arm pain and no longer

take Neurontin.

But I am on a steady, small dose diet of Elavil just to keep my feet

happy, in addition now when the burning does come,ice, Biofreeze,

lotions, and I have a standing order for Naprosyn if I need it. I

still use cold soaks, the garden hose, and the ocean's not far away.

I consider what pain I have minimal, but I do feel it. And in the

years I have been moderating this group, I have met many more people

with CMT who have REAL intense pain, whether intermittent, or

constant, whether burning, aching or some other kind.

There is a 10 point pain scale that my doctor and I use to discuss my

pain - 10 would like be, for me, in the ER needing narcotic IV

relief, crying and screaming (like when Rheumatic Fever got in my

joints) - whereas, now my daily activities and life is mostly about a

2 (it's there, but I can manage it and go on.) Take a look at this -

it describes that scale. http://home.tampabay.rr.com/lymecfs/pain.htm

Here is a link that has Pain and CMT info - articles from the former

CMT International. Perhaps you can read up on pain and CMT and

educate your doctor. Remember, too, there are other doctors out there

who are more compassionate to a patient's pain needs.

http://www.lindacrabtree.com/cmtnews/pain/Painsubtitles.htm

Here's something else on pain and with CMT.

http://www.cmtworld.org/epublisher/publish/article_00139.php

I will also say that, for me, regular exercise helps keep my burning

pain at a low level too.

+++ Gretchen