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Hand Weakness


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#1 peanut

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Posted 30 November 2006 - 05:51 PM

My right hand started hurting a week or so ago. Every time I move my hand the joints especially my knuckles ache. Today, I noticed my grip has softened and when I make a fist it's noticeably not as tight as my left. I asked my rheumatologist about it and he says its the scleroderma - the tendons are tightening.

Later in the day I put socks on my feet and strained my right hand just pulling my socks up. My hand really hurt when it shouldn't have. Even now as I type I feel my hand ache when it didn't before. I'm right handed, I'm an artist; I draw, use the computer, use my right hand for everything. I'm nervous because I don't know what's going on. My rheumatologist has me on prednisone, cytoxan and a number of other things he says in hopes of slowing this all down. I have one finger that slightly curls. Will they soon all curl? I’m really worried.

peanut

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my HMO makes me wear a helmet...

#2 janey

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Posted 30 November 2006 - 06:37 PM

Peanut,
The problems you are having with your hands were some of the same ones that I had during year one. I was very persistent in doing hand exercises and working through the pain. I continued to type even if resulted in lots of misspelled words and play the piano even though it sounded like I was a beginner. All my fingers were curling, the skin was getting tight and I was dropping everything I picked up. I had lost all strength. I feel that the right meds and daily exercises helped to turn that around. Two years later I have a very slight curl in the fingers, no pain, soft skin, and full use. They are weaker, but there are tools to help get jars open and I still drop things occasionally.

Here's a study I found on ISN on The Efficacy of Self-Administered stretching of Finger Joint Motion. This is just one of the things you can do. I did this alot. Just don't stop using them and if you feel like they are getting worse, ask your rheumatologist for a referral to a physical therapist.

Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#3 Claudia-DR

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Posted 01 December 2006 - 02:17 AM

Hi Peanut!

I'm so sorry to hear about your hands hurting.

Janey gave you some great advice to keep 'em moving. Have you considered purchasing a small parafin wax bath? The heat can be really soothing.

I was also in a lot of hand pain last year. My Dr. gave me ibuprofen for it. Like Janey, after a while, the pain just seemed to go away.

I do hope the meds you're on give you relief soon!

Healing hand wishes,

Claudia

#4 peanut

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Posted 01 December 2006 - 05:05 AM

Thanks for the support. I have been stretching my hand since it cramps so easily now. And ibuprofen definately helps. My doctor also gave me this great fat pen to write with. I wish pencils could be this big. Those skinny stick pens just wobble in my weak grip.

Thanks everyone,
Peanut

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my HMO makes me wear a helmet...

#5 kelowna52

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Posted 01 December 2006 - 05:49 AM

Hello Peanut, boy do I know where your coming from. My hands, elbows and arms ache off and on all day long. I keep opening and closing my hands, because I am also worried about what will come next. Take care of yourself and remember we are all in this together.

Jackie S.

#6 peanut

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Posted 01 December 2006 - 11:15 AM

I've been reading up on Sclerodactyly and it says that it is very important to have treatment and physical therapy starting in the initial stages. Maybe my hands will not become fully curled and I am getting treatment but not physical therapy. Should I inquire about PT? I just saw my rheumatologist yesterday and he didn't say anything about PT. My own hand stretches may do the trick and I'll definately have to treat myself to some parafin wax treatment. I love parafin! It's the best!

Thanks every one & Stay warm!

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#7 peanut

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Posted 01 December 2006 - 07:32 PM

Tonight I was packing my car when my arm cramped hard. It has felt weak ever since - very much like my hand feels. Several hours later my arm feels like my hand losing strength. I'm not sure what's happening. Is what is happening to my hand can it also affect arms? If my arm feels weird still by Mon I think I may call my rheumatologist...

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#8 Shelley Ensz

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Posted 02 December 2006 - 11:18 AM

Hi Peanut,

Ask your doctor for a referral to an Occupational Therapist (they help with hand involvement, not job placements) right away.

I started OT at the first sign of hand involvement. I had fingers twisting and curling, ulnar drift, carpal tunnel, aching and burning, calcinosis, swollen fingers, and muscle wasting. My OT taught me hand exercises and showed me how to measure my hands and my mouth every day. She also taught me how to use a wax machine, which my doctor prescribed so that I then had it for home use.

She also made custom plastic splints for my twisting fingers and for my hands, one type for daytime and one for nighttime. I followed through with all of the advice. Between the OT, very faithfully following her instructions, and some meds, and perhaps just from the natural course of the illness, my hands settled down after the first 18 months from when they started acting up.

Today you wouldn't really know there was anything ever wrong with them. Whenever they act up, I simply start right in with the whole at-home routine again until they settle down. And I measure my hands by a simple notch on my keyboard when I fire it up in the morning. If my stretch isn't entirely to the mark, I do more finger stretches for a few days (which only take a few seconds).

Not everyone is this lucky, but there are a few of us who have done very well by tackling hand involvement immediately with good O.T., helpful meds, and terrific at-home follow through and we are still enjoying functionality (knock on wood.)

The thing with hand involvement is that it is extremely hard (perhaps impossible) to reverse damage that is already done. So trying to prevent the damage is of supreme importance.

And I agree with Janey that it was extremely important to keep using my hands, and not coddle them. It is very tempting to give in and avoid using them due to the pain and perhaps in hopes that it will make them last longer. But it is really a case of use it or lose it.

To be fair, many people have tried to fight back very hard but have still suffered severe hand curling and hardening. So it is not fair to assume that everyone with sclerodactyly just sat by and passively watched things worsen, either! The disease is different for all of us. But I think everyone would agree -- don't just sit there observing them, hightail it to an O.T. and do everything you can to retain as much function as possible, for as long as possible.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#9 barefut

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Posted 02 December 2006 - 03:59 PM

Thank you for this post and all the good replies. I have been experiencing the same and wondering if I should ask rheumatologist for a referral to a PT. I am wondering no more. I'm calling her first thing Monday. Thank you all again.

Barefut

#10 jlf

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Posted 03 December 2006 - 06:21 AM

Hi peanut,

When I went to my neuro last week I asked him about my left hand weakness along with little finger and ring finger going numb. I would have never connected this with scleroderma. To my surprise, ulnar nerve compression is associated with scleroderma along with neuropathy. His parting words to me were not to ignore it - hmmm. Don't know about that - so the question will be - is this another symptom to cope with and watch get worse, or can it be 'fixed'?

You could also read up on Guyon's syndrome which is a fixable problem.

Have a great day,
JLF

#11 Marie W

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Posted 03 December 2006 - 08:11 AM

Dear Peanut:
I was recently diagnosis w/ scleroderma, although I have had symptons on and off for about 2 years. It just became very aggressive the last 4-5 months. I too have a lot of difficulty with my right hand and right foot. Some days the pain, stiffness and weakness is so bad in my right hand, I can hardly hold a pen. All the joint pain and stiffness has always been more prominent on my right side. I understand your frustration. I have too work everyday regardless and I am right-handed. I wish I had some advise for you, but all this is new too me. I don't know anyone personally with scleroderma, so this website is a god sent. I also have sjogrens which I have had for at least 25 years. It is all pretty frightening to me. I am starting all the additional testing that goes along with the diagnosis this week.

MARIE W

#12 peanut

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Posted 04 December 2006 - 04:22 AM

Thank you everyone for your posts. My hand has relaxed a bit which is encouraging.

I was wondering if anyone knew if there's a difference between Sclerodactyly and Hand Contractures?

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#13 janey

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Posted 04 December 2006 - 04:33 AM

Peanut,
I may be mistaken, but I believe that contracture of the fingers joints is part of sclerodactyly along with the swelling and skin tightening. Here's our section on Joint Contractures.
Big Hugs,
Janey Willis
ISN Support Specialist
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International Scleroderma Network (ISN)

#14 WestCoast1

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Posted 04 December 2006 - 06:28 AM

Peanut,
I am sorry to hear about your hand. As a fellow artist that is one of the symptoms that scares me also. I sure hope that you find some relief and that this symptom will pass!
*WestCoast*

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#15 hopefulnessa

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Posted 06 December 2006 - 03:02 PM

Hey there... I do sometimes have that problem and some of my fingers curl a little too and they are tightening as well so I know how ya feel..your not alone.

Just wanted to tell you that they have these hand heat warmers that you can buy.. They are pretty inexpensive. You can put them inside your gloves or on your hands. This does wonders with the pain relief and sometimes when you keep your hands warm it increases the mobility. .
Hope I was able to help out some how....Take Care!