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Use of hands and fingers


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#1 greypilgrim256

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Posted 11 January 2016 - 03:50 AM

Hello all.  I know this disease is highly variable for each person, but how long did it take to severely affect your hands to the point where you couldn't effectively do everyday things?  This will be about 2.5 years since my first symptoms and my fingers are still very stiff, but I can still move them and type with no problem.  Wondering if anyone went from full functionality to contractures or disability of hands over a long period of time or was it a sudden onset?  



#2 Joelf

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Posted 11 January 2016 - 08:46 AM

Hi Greypilgrim,

 

I'm very fortunate as I don't suffer with Sclerodactyly in my fingers. However, they are very stiff, probably not helped by osteoarthritis in all my joints.

 

I can type with them (but then my typing skills are pretty bad anyway; nothing to do with my hands! I'm still a two finger typist, one for typing and one for capitals!  :wink:


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#3 Shelley Ensz

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Posted 11 January 2016 - 12:27 PM

Hi Grey,

 

It's very important to see your scleroderma expert and to also get occupational therapy at the first sign of any scleroderma hand involvement, even if all you are experiencing is finger puffiness and/or stiffness.

 

It's actually fairly uncommon for things to progress all the way to frozen, curled hands in systemic scleroderma, especially if you receive proper care early on. I had a year of occupational therapy nearly two decades ago and resume the steps I was taught (measuring, warm wax treatments, and hand exercises) as needed. 

 

My fingers still have varying puffiness and stiffness, but are still quite functional, with just some reduction in grip (making things like filling the gas tank or opening jars challenging or sometimes impossible.) There are varying results with UVA1 for sclerodactyly, but I have found UVA1 treatments particularly helpful, as well.

 

Avoiding and promptly treating attacks of Raynaud's is thought to also help avoid or reduce disease progression in scleroderma, so becoming an absolute pro at avoiding attacks, and having an arsenal of ideas for responding to them promptly, may also help preserve scleroderma hands.

 

With the occupational therapy, I had special splints made for daytime and nighttime. The point of them was to mold my hands into the most usable position, should the hand inflammation/fibrosis progress. Every once in a while, it feels like I should go back to using them again, but then things typically relent after a spell.

 

I also get "trigger fingers" and that can go in spurts of being very troublesome for awhile, and then improving. For example, my fingers can quickly get stuck in a position, often when carrying a bag or trying to use a knife or scissors. When that happens, I merely stop what I'm doing and wait for it to relax (without ever trying to force it, which can be harmful). And I pay very close attention to ergonomics to reduce the impact of carpal tunnel (and in my case, ulnar tunnel.)

 

The most important thing is to try to prevent scleroderma hand involvement, because once it has a good foothold, there is currently very little that can be done for it -- although there are some very hopeful clinical trials in progress right now, aimed specifically at this, such as the Cytori STAR trial.


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#4 greypilgrim256

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Posted 12 January 2016 - 07:33 AM

Thanks for the replies.  What exactly does the UVA1 therapy entail?  How does it work? 



#5 Joelf

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Posted 13 January 2016 - 10:21 AM

Hi Greypilgrim,

 

I've included a link to an article explaining all about UVA1 therapy and also a link to our medical page which I hope you'll find helpful and informative.

 

Kind regards,


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#6 greypilgrim256

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Posted 13 January 2016 - 03:59 PM

Thanks.  I'll speak to my sclero specialist next week when I see her. 

 

Is there anyone here that has personal experience with UVA1 therapy that can share their experiences,  positive or negative with it and what it entails?



#7 Shelley Ensz

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Posted 13 January 2016 - 05:53 PM

Hi Grey,

 

UVA1 phototherapy is done in a dermatology office that has UVA1 phototherapy equipment. It is like a vertical tanning booth, and the major side effect is that you get a sun tan. You wear equipment to protect your eyes and/or face, and minimal clothing. The sessions take literally just a few seconds and are entirely painless.

 

Normally people are prescribed a certain series of treatments, such as, 2 or 3 per week for 3 months. Then the treatments are assessed and regular skin surveillance is done by the dermatologist. It has been proven to be effective for morphea scleroderma (also other ailments like lupus and psoriasis) and there are reports that it has been helpful for some people with systemic scleroderma, especially with skin involvement. The biggest trick is finding a dermatology office that has the right equipment, so it is usually found in larger metropolitan centers.

 

Please review this information with your scleroderma expert to see if it might be appropriate or worth a try in your particular case. For example, some people are on medications that necessitate sun avoidance (like methotrexate).

 

:hug-group:


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#8 Tully

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Posted 04 March 2016 - 10:25 PM

Hello GP,

 

My first symptom was the tightness and slight curving of the last joints of my fingers. Within two years, they were fully curved. I was fitted with splints to keep the straight at night, they didn't help. They may have slowed it down, hard to tell. I was working and lived alone, so I could not wear them all the time

 

Tully



#9 dimarzio

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Posted 10 March 2016 - 09:54 AM

My hand involvement is limited by the Raynaud's.  When it sets in, my hands are so cold and still that I can't do anything with them.

 

At the moment, I'm in a warm room and typing away like mad - hands feel completely normal, but in an hour or two ??

 

It was the Raynaud's in the hands that prompted the ANA test a few months back.  I had cold hands and feet for a few months before but it was my fingers suddenly turning white on a regular basis that prompted my visit to the Doctor and the ANA test and result.

 

For me, the worst thing is that I can't stand any contact with water, as the Raynaud's immediately sets in and my hands go stiff.  Even rubber gloves don't help much so washing up is a no no and going to the loo is horrible as hands must be washed - even worse in a public loo where there is only cold water or the hot air dryer is blowing out cold air.



#10 Amanda Thorpe

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Posted 10 March 2016 - 12:31 PM

Hello All

Let me give you a "hand" with this thread...well someone had to say it!

I did wax baths at home for my hands and feet for about 18 months and stopped when I suddenly became unable to tolerate the heat.

I had a splint to try as well and...forget it! I was in to much pain and discomfort, as well as having poor mobility, to cope with two splits at night. As it happens, it is easier to function with my hands as they are now than when they were completely straight.

My experience is that sclerodactyly marches on unapposed regardless. I still have tight skin on my hands some 9 years on, no way could I have worn a splint that long and as I say my hands function better bent. At least I can grab and grip now, before I couldn't even open a door.

Take care.
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