Hands

[Guest guest]

Rob,

I, too, have 'hand' problems. I use a Remington Spa Therapy Paraffin

Wax Heat Treatment System for hands, feet and elbows. (That came off

the Use & Care Guide.) I bought it for $20 a couple of year ago and

it does help with the flexibility issue. I also use " Super " Blue

Stuff which, as long as I use it properly, helps the pain and makes

it easier to exercise them..

I hope this can help you. For me, it's all I've found so far.

suzanne

>

>

> MY hands are seriously screwed,I cant even touch my palms with the

> tips of my fingers. I cannot make a fist....Does anyone have any

> suggestions on some home remedies?......do hot wax treatment spas

> work?.....Im going to try some physical therapy as soon as my pre

> existin clause runs out on my insurance....thanks guys...I really

> appreciate any suggestions.

[Guest guest]

My hands were like that, before diagnosis, and also after, until I was

put on some good medication. I was sent to physical therapy, and the

assistant would give my hands the hot wax treatment, then massage them

until I could almost make a fist. But then the next day they were back

the way they had been.

I bought my own hot wax machine and used it at home. It provided

temporary relief; in other words, it felt good at the time but had no

lasting effect.

What medications are you on? Do you have a good rheumy?

I sympathize with you, because I know how it feels. My hands are almost

back to normal now, but it's because of the meds.

Sue

On Tuesday, February 8, 2005, at 05:30 PM, Rob X wrote:

>

> MY hands are seriously screwed,I cant even touch my palms with the

> tips of my fingers. I cannot make a fist....Does anyone have any

> suggestions on some home remedies?......do hot wax treatment spas

> work?.....Im going to try some physical therapy as soon as my pre

> existin clause runs out on my insurance....thanks guys...I really

> appreciate any suggestions.

[Guest guest]

Rob, I'd talk to your physician about this. What meds are you taking? Maybe

you need a change.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] HANDS

>

>

>

> MY hands are seriously screwed,I cant even touch my palms with the

> tips of my fingers. I cannot make a fist....Does anyone have any

> suggestions on some home remedies?......do hot wax treatment spas

> work?.....Im going to try some physical therapy as soon as my pre

> existin clause runs out on my insurance....thanks guys...I really

> appreciate any suggestions.

[Guest guest]

gina... i so much wanted to ask a question at the support group, but i did

not... this is it:

even when i am on enbrel and my hands are not deformed, yet... will the get

deformed or will the medication keep them straight?? i was thinking that if the

pain is gone then the things that do the damage are not there and so my hands

will not get deformed... there were ladies that with deformed hands and are

only taking mtx... i wondered why they are not taking something else... oh

well... thanks gina.. you always have so much info for us.. i love it.. these

ladies were older than me and hve had it for a long time...

rae

[ ] HANDS

>

>

>

> MY hands are seriously screwed,I cant even touch my palms with the

> tips of my fingers. I cannot make a fist....Does anyone have any

> suggestions on some home remedies?......do hot wax treatment spas

> work?.....Im going to try some physical therapy as soon as my pre

> existin clause runs out on my insurance....thanks guys...I really

> appreciate any suggestions.

[Guest guest]

Rae - As I have noted here before ...I have been dealing with this along time

(16 year since positively diagnosed as RA - and long before as an " inflammatory

disorder " - which affected the joints)...and my hands may become swollen and

stiff and have some characteristic puffiness over the joints...but my fingers

and joints are NOT crooked. That is why agressive treatment early is important.

I do finger and hand excercises; treat myself to occassional manicures which

involves massages- when I can afford - which isn't too often; I have done

physical therapy and parrafin baths ( don't own one- but mostly because of

curious black persian named

Clancy) and I use my hands. The Remicade has done great things for me- I can

even make a fist- something I hadn't been able to do for a long time. Each case

is different - but severe crippling isn't a given. My feet and ankles- well I am

still working on that but some of the swelling is down. You do what you have to

do- and trust in God and the docs- which sometimes take practice. Do not borrow

trouble. The pain and the disfigurement can be controlled - which is an

important part of the physical therapy and the medication- to keep things from

progressing.

BIG hugs,

--------- [ ] HANDS

>

>

> >

> >

> >

> > MY hands are seriously screwed,I cant even touch my palms with the

> > tips of my fingers. I cannot make a fist....Does anyone have any

> > suggestions on some home remedies?......do hot wax treatment spas

> > work?.....Im going to try some physical therapy as soon as my pre

> > existin clause runs out on my insurance....thanks guys...I really

> > appreciate any suggestions.

>

>

>

[Guest guest]

thanks, karen for the response.. i always massage my hands, because it feels so

good and i am a manicurist so i have a hot wax unit so i am going tostart using

it daily if not a couple of times a day... and the enbrel is taking some of the

pain out of my hands, too... it has taken a lot of pain and stiffness from this

old body... haha ha ha ha ha... i am eating very healthy, trying to lose some of

this weight, i have gained on the prednisone.. so far so good, lost 4

pounds...)

and it will help my knee! too

rae

[ ] HANDS

>

>

> >

> >

> >

> > MY hands are seriously screwed,I cant even touch my palms with the

> > tips of my fingers. I cannot make a fist....Does anyone have any

> > suggestions on some home remedies?......do hot wax treatment spas

> > work?.....Im going to try some physical therapy as soon as my pre

> > existin clause runs out on my insurance....thanks guys...I really

> > appreciate any suggestions.

>

>

>

[Guest guest]

Rae, first, not everyone will develop deformities. Unfortunately though,

nobody is able to predict exactly who will. Even if you have no pain or

swelling, erosions can occur. And there are no guarantees that the

medications will prevent deformities, but DMARDs are the best defense

against them.

So, the approach is to form a partnership with an excellent physician,

preferably a rheumatologist, who will treat and monitor you aggressively -

not wait until the damage has already happened. Some rheumatologists argue

that there should be no evidence of disease, neither outwardly nor via labs

or imaging studies.

Methotrexate is an excellent drug, but it doesn't work for everyone. The

biologics don't work for everyone either. Sadly, there may be a lot of trial

and error before the right combination of drugs is found for a given

individual.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] HANDS

>

> gina... i so much wanted to ask a question at the support group, but i did

> not... this is it:

> even when i am on enbrel and my hands are not deformed, yet... will the

> get deformed or will the medication keep them straight?? i was thinking

> that if the pain is gone then the things that do the damage are not there

> and so my hands will not get deformed... there were ladies that with

> deformed hands and are only taking mtx... i wondered why they are not

> taking something else... oh well... thanks gina.. you always have so much

> info for us.. i love it.. these ladies were older than me and hve had it

> for a long time...

>

> rae

[Guest guest]

thanks, gina... i will talk to both of my doctors, they are both really great...

so we can watch for these things...

rae

Re: [ ] HANDS

>

> gina... i so much wanted to ask a question at the support group, but i did

> not... this is it:

> even when i am on enbrel and my hands are not deformed, yet... will the

> get deformed or will the medication keep them straight?? i was thinking

> that if the pain is gone then the things that do the damage are not there

> and so my hands will not get deformed... there were ladies that with

> deformed hands and are only taking mtx... i wondered why they are not

> taking something else... oh well... thanks gina.. you always have so much

> info for us.. i love it.. these ladies were older than me and hve had it

> for a long time...

>

> rae

[Guest guest]

In the mid-70's I bought a house 2 blocks away for my mother and moved her

into it. In the meantime she lived with me and my family. Naturally, family

can't live together for any period of time without problems. Most of the

problems we had were products of her pain and suffering. Back then the best

pain relief she had was prescription Motrin. Her right leg was almost at 45

degrees from straight and she couldn't close her hands, among other things.

I walked into her house one evening and she was using a cigarette lighter,

trying to burn the cap off a medicine bottle! She couldn't get easy-open

caps or anything else to make her life better. She didn't last too much

longer, her body was not in a position for operations she needed, and there

was a doctor that operated anyhow. He botched it! I count my blessings every

day because I can get out of bed most mornings and type with both hands,

among other things. When I'm feeling low, I remember people that are worse

off than me.

Early in my experience, I had a hard time with my hands and was prescribed

to use a wax bath with plastic gloves and I carried it a step further by

also wearing heavy gloves with the wax. It didn't seem to make much

difference at the time, but I think it did make a difference long-term. I

even used it on other joints, like elbows, feet and knees. I was desperate

enough to try anything back then. For body parts that wouldn't fit, we

spooned it on, and that worked almost as well as dipping. If your hands are

that bad, I think you'll need more than a wax bath. If you haven't seen a

doctor for it, you should, and as soon as possible. There are much better

treatments than before, and you still might have a good chance.

Dennis

[ ] HANDS

>

>

>

> MY hands are seriously screwed,I cant even touch my palms with the

> tips of my fingers. I cannot make a fist....Does anyone have any

> suggestions on some home remedies?......do hot wax treatment spas

> work?.....Im going to try some physical therapy as soon as my pre

> existin clause runs out on my insurance....thanks guys...I really

> appreciate any suggestions.

>

[Guest guest]

Bree Anne,

I do not have problems with weak hands, never have, but wanted to

suggest you read about the 4 stages of CMT hands in Paolo Vinci's

book " Rehabilitation Management of CMT " . He also writes about the 7

stages of feet/legs of CMT. The book is available with membership from

aicmt.org - you may also get it from inter-library loan - I know

there's a copy in the Santa Barbara Public Library system, because I

donated one. There just may be a long wait for it.

~ Gretchen

[Guest guest]

Hi Bree-Anne,

I'm Kenny from Louisiana. I'm 34. I too have experienced a decline in hand

strenght in the last year. It's kind of scary of how fast that it happened.

I'm right handed, and my thumb on my right hand is VERY weak. I own a farm and

I'm starting to have problems doing my every day chores. I carry simple tools

with me, like channel-loc pliers, to grab things that my hands can't. I am not

planning on slowing down, but I am trying to work smarter to keep what little

strength that I have left.

Good Luck!

Kenny K

[Guest guest]

Hello Kenny,

I agree that it is pretty scary. I can only pray that it won't

always be this fast. I wondered if I was " crazy " and making it seem

worse than it is, but I really don't think so. I can really notice a

difference in the way they function.

I'm thankful that I have this avenue to others who are experiencing

the same things as myself.

Do you think that the decrease in your hand strength is related to

anything? Like stress or overuse?? I guess I'm trying to grasp for

ways that I can do something to slow down any progression. This is

all still so new to me as I was just diagnosed in December,

alothough I have had symptoms before then.

Bree-Anne

[Guest guest]

,

Thank you for posting. I am so glad that you did. I thought that I

was crazy. I have had alot of pain for a while then it subsides then

have more numbness and less strength. I'm so excited about your

post that I can hardly type. It's not just me! It's not just me!

yes, I'm excited but still it is pretty scary. I'm just so glad to

know that I haven't " convinced " myself of something that isn't

really happening. It is happening.

Bree-Anne

[Guest guest]

Bree-Ann,

I'm pretty sure that overuse is the reason for my hands getting

weaker. It's kind of tough not to work hard on a farm. I'm going to

have to hire some full-time help pretty soon.

I was diagnosed 2 years ago, so this is still a learning process for

me, too. It is nice to have a website that you can look through and

see what advise other CMT'ers have to offer.

Kenny

[Guest guest]

,

Thanks for the kind words. Its sad what CMT does to a person, but

it's nice having people like you to talk to about it.

Kenny

[Guest guest]

Bree-Anne,

YEAH!!!!!!!!

Re: Hands

,

Thank you for posting. I am so glad that you did. I thought that I

was crazy. I have had alot of pain for a while then it subsides then

have more numbness and less strength. I'm so excited about your

post that I can hardly type. It's not just me! It's not just me!

yes, I'm excited but still it is pretty scary. I'm just so glad to

know that I haven't " convinced " myself of something that isn't

really happening. It is happening.

Bree-Anne

[Guest guest]

Bree-Ann and Kenny,

I feel like we three are following in the same progression. I was diagnosed a

year and a half ago.

Please let's always keep in touch.

Re: Hands

Bree-Ann,

I'm pretty sure that overuse is the reason for my hands getting

weaker. It's kind of tough not to work hard on a farm. I'm going to

have to hire some full-time help pretty soon.

I was diagnosed 2 years ago, so this is still a learning process for

me, too. It is nice to have a website that you can look through and

see what advise other CMT'ers have to offer.

Kenny

[Guest guest]

Yes, I do. I have carpal tunnel and have to wear wrist splints at night

so my hands don't go to sleep. Here's more info about it:

http://www.umm.edu/patiented/articles/how_carpal_tunnel_syndrome_diagnose

d_000034_7.htm

>

> Does anyone else have this problem...my hands are tingling and

> numb a lot when I wake up. I don't know if I sleep on them strange

> or what.

> Joy

>

>

>

[Guest guest]

Ok, it seems like I'm replying to my own message here; just editing. I

went back to type in that my hands ARE affected now but they are still

usable. It's just that they are not like they used to be and I am

considering the hand surgery if the insurance will cover it.

Dawn

[Guest guest]

Hello Beverley,

May I ask what type of CMT you have if you know?. I ask because although I have

high arches and as a kid I sprained my ankles often I had no other problems

until age 45 when I noticed my calves were wasting. I can still walk w/o any aid

or braces but my hand function began to deteriorate rapidly late 08'.

I have found some things that helped me with manipulating things which I posted

last week. I am 60 now and really wondering how this is going to play out.

Sometimes I feel I live with flappers instead of hands.

Take Care.

[Guest guest]

Get checked out by a 'hand' doctor.. I just found out I have carpal tunnel

plus pinched nerves in both hands. I have HNPP and my neuro said I may not

be a candidate for hand surgery because of my nerve deterioration, So I'm

going to a hand specialist next week to find out. So make the appt., it's

worth a shot.

Jeanne

[Guest guest]

You sound like me, I have CMT 1.

Geri

[Guest guest]

Jeanne,

It seems to me that hand surgeons almost always want to do surgery. That is what

they are trained to do. I'm leery of this type of operation with my CMT. It has

been suggested to me before for my hand problems and I have gotten so many

varying opinions - carpal tunnel-not carpel tunnel just CMT - that it drives me

bonkers.

>

> Get checked out by a 'hand' doctor.. I just found out I have carpal tunnel

plus pinched nerves in both hands. I have HNPP and my neuro said I may not

be a candidate for hand surgery because of my nerve deterioration, So I'm

going to a hand specialist next week to find out. So make the appt., it's

worth a shot.

>

> Jeanne

>

[Guest guest]

I understand, but right now my dishrag hands are preventing me from driving,

typing and writing, basically preventing me from doing my job and negatively

impacting my quality of life. So I am up for talking to a specialist to see

what csn be done. If I don't like his answers, I just say no thanks.

My neuro is the one who said I have carpel after an EMG. Since my legs don't

work, I would love at least my hands to work.

Jeanne

[Guest guest]

I have had gradually increasing numbness, tingling, parasthesias and shooting

pains in my hands over the last several years. IMHO I believe that carpal tunnel

is a component. I think that my CMT predisposes me to it and exascerbates it. I

have been offered surgery on my right hand but so far I've held off. I think I

will need to be sufficiently miserable first. Right now it is merely annoying

and sometimes painful at a moderate level (one of the benefits of the numbness I

guess!).

It's more what I avoid than what I do. I almost exclusively type in favor of

writing. I can write but my handwriting is getting bad (I know, I know -- what

do you expect from a doctor?) and it becomes painful by the time I finish about

a page. So far typing is fine, but I do get clumsy. I'm careful to use oven

mitts to avoid burning myself inadvertantly when cooking. I avoid those plastic

grocery bags or at least loop them over my forearms instead of resting the

weight on my fingers.

I have a really cool tool to slide all those bags onto and carry with a big

rubbery grip but I never have it when I need it. At night when I'm asleep I am

careful to flatten my hands between the pillows to keep my wrists straight,

sometimes I use a wrist brace if I keep waking up with my hands curled under. I

am pinching nerves at the shoulder as well because of old rotator cuff injuries

so I also position myself carefully at night to keep the shoulders neutral.

It's quite the ordeal, my husband says I sleep like the dead, because once I'm

in position I don't move. And then some days, like today, I just suffer because

I over did it painting the trim on the house over the weekend -- but it feels

great to know I still can! And the trim looks SOOO much better!

Holli