Hands

[Guest guest]

I am interested to hear from any of you who have/had issues with your

hands and swelling and pain. As I guess is pretty normal for CMT I

have quite a bit of muscle loss and atrophy. I had carpal tunnel

release surgery about a year ago and though I consider that surgery

to have been successful, have now been dealing for quite awhile with

swelling of my fingers, wrist and portions of the palm of my hand.

There is a lot of stiffness and pain also. I have been going to

physical therapy and that helps some, but now have been directed to

see a specialist and have more tests, etc., etc. ANYHOW...I would

like to know if anyone else experiences anything like this and if it

is CMT related or from the surgery or something else. Thank you!!!

Deb

[Guest guest]

Hi Deb,

The only thing I have a problem with do to the CMT in my hands is I call it a

dead thumb on my left hand. If I try to pick up a phone book or anything heavy

or thick with just this left hand I can't. My thumb just has no strengh. My

right hand seems to be ok though.

Take Care.. Elaine

[Guest guest]

Hi Deb,

When I lost all feeling in my right hand (I'm right handed) and had to use

my left hand all the sudden, I thought the swelling was because I had to use

it so quickly. That's not the case with me. My left hand at the base of my

thumb is always swollen and hurts and seems like it's strained. My hands

are so ugly, I hate it. I'm only 44, but if you looked at my hands they

seem like a 80 year old. People even think I'm only 30 something....IF I

keep my hands covered. I guess that's just another pitfall. Yes, they hurt

alot and my feet are getting wider it seems. I don't have the money to keep

getting tests done. I know what I have with the nerve conduction test, and

have been to many a foot doctor, but that was years ago, and at that time I

was told I had bone spurs in the heels of my feet. The weird thing is I

did, but the doctor, instead of getting rid of the bone spurs, gave me an

injection of cortozone on the top of my foot (my high instep) and kept

selling me all types of orthodics. That's a whole other story. Anyway, I

guess hands come into play with this also, Gretchen would know lots more

about this.

Take care...

[Guest guest]

I have problems with my hands/arms as a result of CMT. I have pain

and numbness in my hands/arms and occasional tingling in my hands.

However, I have never had swelling in either my hands or arms.

EMG/NCV tests showed an 80% loss of strength and 95% loss of

sensitivity on my hands and arms. My neurologist said this is a

direct result of CMT.

I am good at altering the way I perform tasks to compensate for the

lack of strength. The numbness doesn't bother me too much, even

though it is present. What does bother me is when I lay down and end

up asleep on my arm, the pain really kicks in. It seems to help if I

try to keep from leaning or pressing on my arms much. But I can't

help it when I'm asleep.

To complicate the CMT, I have a pinched nerve in my right arm. This

was discovered through the EMG. It's like carpal tunnel, except it's

in the elbow. I can't remember the name of the nerve tunnel in the

elbow. If you haven't had a recent EMG, it may help discover some

other problem that hopefully can be corrected.

-Rob

[Guest guest]

Hello and Sue,

I also fight the numb fingers and weak hands, drop things daily and is so

frustrating. My arms are also getting very weak and my therapist at the MDA

clinic said it is actually coming out of the shoulders which is CMT.

Well I take Lodine 500 mg 2 x a day and I have found it does more for

me than Neurontin, it is actually a medication for Arthritis but it works, I

also take the generic version Etodolac.

in OK

[Guest guest]

Hi Sherry-My hands are also affected due to CMT. My right hand is the worst.

My fingers curl/bend almost completely if I'm not paying attention. I am

VERY self conscious about that. I even wake up in my sleep to make sure I'm

somehow keeping my fingers straight. What a pain in the drain it is too! Luckily

I can flex my left hand very well. I had thumb surgery on my left thumb back

in 1992 and as I later learned it was the wrong type of surgery for me. I was

casted for over 3 mos and from that time on I gradually lost the function of

my right hand. Even as I'm sitting here typing I only use the pointer finger

of my left hand.

Then in 2000 I took a chance with another hand specialist and had surgery on

my left thumb.....MISTAKE again. But I can at least use my hand. My hands

were already weakening due to CMT. Not sure what or if anything can be done to

regain strength and use. Boy, I'd be a happy camper if their is. It is very

frustrating to me. But I'm happy still to be able to do what I can.

Barb

[Guest guest]

Hi Sherry,

My hands/wrists are very weak and hurt a lot. Sometimes the wrist support gloves

help. I've also taken Vitamin C to help the strength in them. Hope this helps.

Debbie

[Guest guest]

Hi Debbie

I have read alot about taking Vitamin C on this site. It is good

to know that it does help with hands. I have never heard of wrist

support gloves where can they be found? Thank-you very much for your

help.

Sherry

[Guest guest]

Hi Barb,

I can relate to alot of what you are saying.I find myself all day

trying to keep my fingers straight.Even go to bed with one hand under

my pillow and fingers straight in hopes in the morning it has worked.

(LOL) But guess what I'm still working on it.(LOL) One of these days

my brain and my hands will get together.It's like I'll do my thing you

do your thing and lets see if she can keep up.(lol)So far so good I'm

staying right with them. I go to the doctor in May and I was going to

ask if there is any type of surgery that could help.Thank-you very

much. Hope to hear from you again.

Sherry