cmt pain

[Guest guest]

Is that doctor correct or other people with CMT have pain too? Mine is

deep.......like in my bones........and sometimes my skin burns.

[Guest guest]

I HAVE HEARD OF PEOPLE WHOS SKIN BURNS BUT MINE DOESN'T... BUT I KNOW

WHAT YOU MEAN ABOUT DEEP PAIN IT'S LIKE MY PAINS I GET IN MY HIPS

THEY ARE SHARP AND HARD AND IT FEELS TO ME LIKE THEY ARE DEEP IN MY

BONES BUT THE DOCS NEVER THINK THAT YOUR PAIN IS THAT BAD OR THEY

THINK IT'S ALL IN YOUR HEAD BUT IT'S NOT TO US THE DOCS ALWAYS ASK

ME TO TELL THEM ON A SCALE OF 0-10 HOW BAD IT IS AND I TELL THEM IT A

15... JUST HANG IN THERE IT WILL GET BETTER AND THERE ARE THINGS YOU

CAN DO ABOUT THE PAIN THE BIGGEST ONE BEING NOT TO OVER DO IT.

[Guest guest]

I, too, have a high threshold for " exterior " pain, as I call it. My CMT

pain (surface skin burning feeling and deep pain that seems to emanate from

the very marrow of my bones) is quite painful (on the Mankoski scale it is a

range of 7-8), but pain caused by outside factors (hot pavement, needle in

the back of my hand, etc.) is very light to nonexistent and usually takes

awhile before I feel it. In fact, before I had to close my business and

apply for disability, I was an electrician, I would be getting shocked for

several seconds before I " felt " it and realized it and jerked away from the

source (another big reason I quit).

Anyway.......I want to thank KathleenLS for the research article and

Mankoski pain scale you had sent me. I printed them out, circled my pain

range and wrote the disability examiner the next day after my " exam " with

their own " physician " . This is a copy of what I wrote to the examiner:

" I had an exam with your physician on Saturday, January 18th, and it left

me with concerns regarding your physician's knowledge of my CMT

(Charcot-Marie_Tooth) disease. He stated pain is not associated with CMT.

That is ridiculous. Enclosed are printouts of just one of many studies

regarding CMT and pain. Also enclosed is my pain level on the Mankoski Pain

Scale. If benefits are denied based on this physician's lack of knowledge, I

will require a qualified neurologist for the exam (and here I wanted to add

but didn't.....not this self-serving bozo with his med degree from some

island school). Dr. Holli Horak, my current physician, is the assistant

professor of neurology (EMG Section) at the Indiana University School of

Medicine and she is far more qualified than your physician. She is treating

me for the pain she knows can and does accompany CMT.

Thank you for your time.

Sincerely, "

So I urge any of you going thru the disability application procedure to take

an active role and not sit by passively.......allowing them to do whatever

they please. We paid for this disability over the course of our careers and

how dare they deny us when we need it.

OK.......I feel better now. :-))

Thanks to everyone for sharing with me their advice and experiences!

Bob Weidman in Indy

[Guest guest]

:

I also have a high pain threshold which I always thought that

everyone else had too! Even as a child but especially in adulthood

--I have not had a problem with the Drs giving me pain medication

because I have always explained to them what happens if I get

anything stronger that Advil. My children have no pain tolerance--

that is actually how I found out that I wasn't " normal " . It's nice

to know that I'm not the only one.

Sharon

[Guest guest]

Bob,

Wow! I never realized that the pain you describe as

being deep and seemingly from the marrow of the bones

was or could be a part of my CMT. I have had this pain

since I was 12 years old, at its worst I would call it

a 6 on the scale, but once it starts it never goes

away until I move. The pain is in both hips right

where by butt contacts the chair and starts after

about 15 minutes. My burning pain is usually a lot

less but can interfere with sleep and concentration.

That pain, I have attributed to the CMT as well as an

electric shock pain that is quite severe but lasts for

such a short time I don't really notice pain, I just

jerk like a damn fool! Until now, I never thought

about having a different threshold for different pain

but I think it to be the case. THAT'S INTERESTING!

Thanks;

Jim Nash in Ohio

[Guest guest]

Bob:

I understand what you mean about surface pain, I think that is probably

common amongst most of us with CMT due to the damage of the nerves. But

what I mean IS the deep pain. I have had many Dr.'s amazed at what I don't

feel as far as deep pain goes. Not that I'm complaining, I wouldn't want to

go thru what you describe. But I just wonder if others have experienced

things like ankle fusions with no post surgery pain (bone deep),

endometriosis - which can be very debilitating to most women; my GYN said I

was the " poster child " for the disease and shouldn't even be able to walk

upright due to pain. I never experienced even a twinge. That's certainly

not normal, so does it relate to the CMT? My son broke his fibula and

didn't realize it. He continued to play basketball for months before he

observed an " odd " knot on the side of his leg. The bone had shattered into

fragments due to continued running and jumping. The doctors said this

should have hurt long before it reached that stage. So this could be

interesting to see how many of us fall in the opposite category of

" comfortably numb " .