Re: CMT Pain

[Guest guest]

In a message dated 1/18/00 5:02:44 PM, Marlari9@... writes:

<< Many of you are talking about medication for pains, chronic and sharp

pains..... are these something that got worse or happened due to surgery? The

burning nerves etc??? >>

About 50% of CMTers do have significant nerve pain whether or not they have

had surgery. For years, many doctors did not believe this, and told CMTers

their pain was in their heads. Now CMT pain is more apt to be recognized.

CMTers who do not have pain are fortunate. Sometimes they don't understand

what the rest of us are coping with. I imagine some types of pain may be

from surgery, but often it is not - it's just CMT nerves protesting their

death, or something like that.

I am not a medical person. This is my opinion based on reading and listening

to others, including my neuro, and on my own unrelenting pain.

Kat in Seattle

PS, there is a CMT pain study available for anyone who needs documentation to

convince his/her doc that the pain is legitimate.

[Guest guest]

In a message dated 8/30/00 1:08:14 PM, jross56922@... writes:

<< What I cannot understand for the life of me my doctors tell me that with

CMT1A, I should not have pain, my pain keeps me home 90% of the time! >>

Your doctors are lost in the Dark Ages.

There is a site that refers to pain and CMT, carried out by CMT doctors.

I suggest that you print it out or send for the complete article to present

to your doctors.

http://www.archives-pmr.org/abs79_12/v79n12p1560.html

Reprint requests to

T. , MD,

1809 Cooks Hill Road,

Centralia, WA 98531.

  Results: Of 617 CMT subjects (40% response rate), 440 (71%) reported pain,

with the most severe pain sites noted as low back (70%), knees (53%), ankles

(50%), toes (46%), and feet (44%). Of this group, 171 (39%) reported

interruption of activities of daily living by pain; 168 (38%) used

non-narcotic pain medication and 113 (23%) used narcotics and/or

benzodiazepines for pain. The use of pain description was similar for CMT,

PHN, CRPS-1, DN, and PNI in terms of intensity and the descriptors hot, dull,

and deep.

  Conclusions: Neuropathic pain is a significant problem for many people with

CMT. The frequency and intensity of pain reported in CMT is comparable in

many ways to PHN, CRPS-1, DN, and PNI. Further studies are needed to examine

possible pain generators and pharmacologic and rehabilitative modalities to

treat pain in CMT.

[Guest guest]

Yes....Love that one when they tell you it isn't that bad or its in

our head...They aren't in our bodies and they sure in the heck no

noting what we go thru.

Also has anyone ever heard of cmt effecting the nerves in your ear

causing you to loose hearing. Since I had the vertigo i have gone to

specialist who wants to run tests b/c wants to rule out some things

but he thinks that the cns damage from the CMT is the cause of loss

of hearing???

Any thought on that one......

[Guest guest]

I also have that deep pain, sometimes electrical type shocking in my feet.

My pain is in my hands mainly, burning all the time, and yet numb. Sometimes

I feel as if I have an ant bite and scratch but it never relieves the itch.

I have been taking tramadol or ultram to ease the pain. It does not make me

feel as sick as some others. Heat from rice heated gloves helps bath my

hands and feet. I place the pad in the microwave for 2 minutes and it holds

the heat in the pad for almost 1/2 hour and maybe it will give you some

relief.

Joyce

[Guest guest]

Oddly enough, I am just the opposite. I have such a high pain tolerance

that it has caused me to hurt myself and not realize it. I have blistered

the bottom of my feet standing barefoot on concrete that was too hot. I

have had infections in my toes because I didn't realize my foot had slipped

forward in a shoe until 8 hours later (this was back in the days when I

still insisted on wearing heels). And most recently, I had an ankle fusion,

which resulted in a morphine pump after surgery because the dr. expected me

to be in great pain. It made me extremely sick to my stomach and I had to

beg for them to disconnect it. Everyone kept insisting I wouldn't be able

to handle the pain without the drip. After crying and pleading, they

finally unhooked me. Once the nausea was gone, I had no pain at all in the

ankle. I have always attributed my lack of pain to the lack of feeling in

my extremities. I wonder if others with CMT are like me? I know my son,

who has symptons of CMT, has a high pain threshold. Or is really stubborn

(not sure which yet!).

[Guest guest]

Sharon:

I have never talked to my doctors about avoiding heavy pain

medication after surgery because I'm always afraid that will be

the one time I will experience what everyone expects. But

after this last time, I think I will start advising them from

now on. Being so nauseated was horrible, and the nurses just

couldn't seem to get the picture. They kept bringing me heavy

food (sausage and eggs, fried chicken, etc.) I finally just

laid there and cried until I got their attention. And I hate

to cry!

[Guest guest]

,

Concerning pain:

I have had 2 root canals done recently, various cavities filled and

years ago a broken foot set without anesthesia or painkillers. I have

broken 2 collarbones in the last 2 years and experienced little pain.

However, I experienced severe sciatic nerve pain 3 years ago. My wife

thinks I am a masochist and enjoy pain but I am convinced it is CMT

related. I am very sensitive to hot and cold in my extremities and

develop Raynaud's Phenomenon (abnormal contraction of small blood

vessels feeding the skin) when skiing (particularly this winter)!

I am type 2 phenotype-no genetic testing. I am convinced these

symptoms are characteristic of some CMT mutations and should be

investigated.

JD Griffith

[Guest guest]

JD:

Thanks for the response. So far that makes three of us from this

site who seem to be totally opposite of most pertaining to pain. I

know what you mean about being a masochist. My husband is constantly

telling me to lighten up and quit trying to be so tough. It's not

that, I just don't feel what others do. Sometimes I think that has

resulted in some serious injuries because I don't get the warning

signals from my body before it's too late. Sounds like you may do

the same. I am very sensitive to hot/cold in my hands, although I

don't have any other symptons of CMT in them. Except maybe a little

more weakness as I get older. Nothing major, just can't get the lid

off the pickle jar quite so easily anymore!

[Guest guest]

I agree these should be investigated as I am able to have dental work done

without anesthesia. Sometimes I have a minimal amount. I too am Type 2, no

genetic testing.

P.

[Guest guest]

Sorry, I didn't respond to the hot/cold phenomenon in extremities and sciatic

pain both of which I also experience.

P.

[Guest guest]

What I really hate is stepping on something sharp, like a

tac and not feeling it until it is well embedded in my foot.

That and walking until I get a blister, but not feeling the

blister until it is huge. The ability to tolerate large

doses of pain is counter-balanced by severe pain in my

ankles. Such is the way life goes.