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Hand splints


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#1 Kiwi

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Posted 12 November 2009 - 05:37 PM

Hi there,

Can anyone give advice on exercises to stretch out the fingers. I wear uncomfortable splints to bed and use a "power web" elastic contraption to stretch them. I also try to squeeze grip matting under the fingers while sitting to try and give them a stretch.

I simply can't keep up.

Does anyone have any ideas to help straighten fingers?

Thanks,
Kiwi

Diagnosed 2006 - Diffuse Scleroderma
Skin and lung involvement

#2 Shelley Ensz

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Posted 13 November 2009 - 07:07 AM

Hi Kiwi,

Did you see an occupational therapist to set you up with the hand splints and exercises? If not, that would be an excellent thing to do, right away.

I went through a year of occupational therapy for my hands, as soon as they started being troublesome. I was set up with both daytime and nighttime custom splints (molded to my hands), as well as splints for some of my fingers that were twisting sideways. The daytime splints helped with carpal tunnel and ulnar drift; the nighttime ones were the full hand up to my elbows, in case hardening progressed anyway then my hands would harden in the most useful shape so that I could still grip things.

I very faithfully did all the exercises, as many times a day as my O.T. prescribed them. I didn't have a "power web" contraption so I don't know what that is. But I did have a series of stretching exercises -- and measuring -- exercises for both my hands and my mouth. Key to all the exercises is warming my hands first, usually with a warm wax machine (which my O.T. taught me how to use properly, before I was prescribed one), as well as meds intended to help reduce the swelling, pain, and inflammation.

So first of all, if you are doing this unsupervised, be sure to get professional advice as soon as possible. With scleroderma, we need to have O.T. at the very first initial signs of hand involvement, period. You'll find several of us on the board who have clearly benefited greatly from an early, pro-active approach to reduce the impact on our hands.

My other tip would be, whatever they prescribe, continue to do it even after the sessions are over -- no excuses, nothing else in life more important than this -- until you are clearly out of the woods and can safely reduce to a lesser schedule. The warmth and pain relievers are critical to me before doing O.T. exercises, as otherwise, my hands would hurt too much to want to continue exercising them.

Also, keeping my hands very busy helped a lot. There is an urge to just avoid all pain and thus not use our hands at all, if we can help it, when they are inflamed. I found it is very important to fight through that phase, in fact I used that year to work an hour or two every day on this website, which is what got it off the ground. Even with the carpal tunnel and twisting fingers and custom splints. I was just very careful, certainly slowed down a lot from my old typing speed, and paced myself with lots of rest breaks, but I think of it as valuable therapy.

Which, overall, it certainly is.
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#3 Sweet

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Posted 13 November 2009 - 07:20 AM

Shelley,

Thanks for sharing your story. I didn't realize you had that much hand involvement. How are your hands now?

Warm and gentle hugs,

Pamela
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#4 Jeannie McClelland

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Posted 13 November 2009 - 08:08 AM

Hi Kiwi,

I'd agree that working with a good occupational therapist is crucial. I was sent to see one right after my diagnosis. Because I have the 'sine' scleroderma form, the only hand problems I had then were swelling and some aches and pains. I still have little skin involvement other than wicked Sjogren's that causes very sore finger pads and deep splits all winter. The joints and muscles are being affected, though, and of course there is always the fun of Raynaud's.

The OT gave me a tub of putty to use as a resistance device when doing the hand exercises she prescribed, which I can get more of when the old stuff goes from minty green to grubby gray. It seems to have an oily component, so working with it helps the dryness, as well as keeping the joints and muscles well worked. I do spend a fair amount of time at the computer keyboard and work with my hands knitting, spinning, or weaving every single day. Because I depend on my hands for many of the things that give me great pleasure, I also don't slack off on the exercises or the things I need to do because of the Sjogren's and Raynaud's.

It's a use it or lose it situation for most of us, I guess. I hope you find a combination of things that work well for you.

Warm hugs,
Jeannie McClelland
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#5 Joelf

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Posted 13 November 2009 - 09:07 AM

Hi Kiwi

Before I started on my medication my fingers were very swollen and stiff and my wrists were extremely painful. I had bi-lateral Carpal Tunnel syndrome which was operated on but I still used wrist supports on my hands every night. That was until I went on an anti-inflammatory and thereafter all the swelling and pain disappeared so I no longer need to use wrist supports except when I'm in the gym and then I put light weight supports on my wrists and knees.

When I was referred to a rheumatologist at The Royal Free Hospital they gave me a whole pamphlet of exercises to do with my hands which I do try to do, although not probably as much as I should!! ;) :blush: As Shelley said I think the important thing is to keep the fingers moving; mine were always much more painful first thing in the morning.

Kind regards x

Jo Frowde
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#6 Shelley Ensz

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Posted 13 November 2009 - 09:49 AM

Hi Pam,

The good news is that I don't have that much hand involvement anymore. Sure, I still have joint pain, and I always need to be cautious with the carpal tunnel and ulnar drift (I use a Kinesis keyboard, for example). I still get occasional bouts of sausage fingers, and frequent episodes of trigger fingers (more like, trigger hand as the whole hand can freeze at once), and Raynaud's of course, too, but I keep that under pretty good control as well.

Also when things act up a bit, I know exactly what to do, thanks to the experience of having had Occupational Therapy (O.T.), so I am able to nip things in the bud. Not everyone can escape the first few years without significant hand damage, but I do think they are a danger point for many of us and that we should run, not walk, to O.T. at the first sign of trouble, such as carpal tunnel, sausage fingers, joint pain in the fingers, or skin tightness there or elsewhere.

I also have skin tightening in other places, worst around my knees in particular, which progressed the most at the same time my hands were acting up. But with my knees I have residual pain, just from the tightness, but they are still functional. Not everyone is so supremely lucky; some of us get permanent contractures in the major joints (with diffuse scleroderma).

I think the more we know about scleroderma, the more we can count our blessings, every day, that it isn't as bad as it could be or as bad as it has been for some others. It's when we get to comparing ourselves with healthy people that we can plummet into despair. Oddly enough, if we simply have to play the comparison game, I have a hunch that it might be more beneficial for us emotionally to compare ourselves against people who have things worse than us, rather than better, in any single respect.
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.

#7 Kiwi

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Posted 13 November 2009 - 10:52 AM

Hi everyone

Thank you for your replies. It would seem that I have one of the worse cases people have seen over here.... my skin tightening the worst in my hands, arms and thighs. My fingers are frozen at right angles and very stiff which makes it very hard to do anything really.

I feel a bit sad that not much attention was really paid to my hands until now (4 years with scleroderma now) and fear it is too late. In saying that my elbows don't straighten anymore either so perhaps there was just no stopping it.

I can only hope that the skin will soften a bit as can sometimes happen and I will carry on as usual and try to stop them curling over completely.

Life is such a battle without hands and I have become so self conscious of how they look.
Kiwi

Diagnosed 2006 - Diffuse Scleroderma
Skin and lung involvement

#8 Shelley Ensz

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Posted 13 November 2009 - 01:47 PM

Hi Kiwi,

I'm very sorry that so little attention was paid to skirting some of your skin involvement. The best you can do now is to try to ameliorate the damage. Keep wearing your nighttime splints, don't ever skip them. Also, have they made some daytime splints for you? Those are smaller, covering part of the hand and forearm. Do every exercise like they say; don't overdo them, either.

Also make sure you have therapy for your major joints, try not to let them get any worse. Sherrill Knaggs had severe contractures in her legs but was still able to work out on an exercise bike; so most importantly, work with your physical therapist to find creative ways to hold your own, as much as possible. Disuse only makes a bad situation worse.

Like I said earlier, sometimes there is just no stopping it. We all just do the best we can; some of us get luckier than others. You can hope that the natural course of the disease, which is to get worse, and then better, will start swinging your way pretty soon. A few people have enjoyed complete remission that way, others a partial improvement. I'm sure you would welcome any sort of improvement you could get, wouldn't you?

Extra warm (and very gentle) hugs for you plus here are some flowers too. :flowers:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#9 Kiwi

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Posted 14 November 2009 - 11:24 AM

Thank you for your reply Shelley. I do try to wear the splints at night, usually one at a time though as I find it a real pain if I need a drink or to go to the toilet.

One is a molded plastic with soft velcro straps and the other ones are a molded putty that plastic rests against and is strapped on. One goes to the wrist and the other two are just the palm.

What do the daytime splints look like? And how do you function with them?
I spend about 1/2 hour a day trying to stretch fingers and go to 2 stretch classes a week and 1 massage.

Are there any pictures of splints on the site? My OT hasn't seen anyone as bad as me and I don't think she really knows what to do. The joys of being in a small country!

Many thanks,
Kiwi

Diagnosed 2006 - Diffuse Scleroderma
Skin and lung involvement

#10 Shelley Ensz

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Posted 19 November 2009 - 10:03 AM

Hi Kiwi,

The daytime splints are just for carpal tunnel (and for me, ulnar drift, as well). If you don't have carpal tunnel, then you wouldn't need them. They cover the area from the thumb up a few inches past the wrist (to keep the wrists straight).
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.