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lizzy

hand and feet

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I suffer with my hands and feet not only with the cold but most of the time. Although my hands are worse, I get pains in my fingers and they're not very strong anymore, they are swollen bent and twisting. I do try to keep them as straight as I can but they just go back, normal hands can lie flat on a table mine arch. My palms and fingers don't lie down and instead of my finger nails pointing up they are going sideways left to the left and right to the right. My feet are sore especially my heels and my little toes get sore as they are bent. I seem to walk on them because they're turning under my feet, especially the right one.

 

Be well everyone,

 

liz

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Hello Liz

 

Yes hands and feet can be casualties of scleroderma. I have diffuse, the fast moving type of scleroderma and now have sclerodactyly hands. Many people have found stretching exercises and physio helpful.

 

My feet are constantly painful, I have mechanical pain - pain caused by standing and walking, nerve pain - pain caused in response to nothing just the nerves firing off for the fun of it, skin pain - skin so tender and sore I can hardly touch it and finally rheumatic pain - that lovely ache familiar to rheumatic diseases. My feet give me so much trouble that I often go out with slippers or slipper boots on because I can't tolerate shoes. Some people find that they loose the fat padding on their feet which makes it feel like you are walking on pebbles. I'm afraid that sensible footwear becomes a necessity!

 

Take care.


Amanda Thorpe

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Hi Liz,

 

I have the beginnings of finger/hand curling, I can straighten the fingers out but then they recoil to a loose fist when I'm relaxed or upon awakening in the morning. I've been fitted with "resting splints" - to wear on alternate nights to extend the fingers, has been about a week, so it's too early to tell how much they are helping. After a night with the splints, my fingers are quite stiff, but are straightened more than they would be without them. I've also been taught hand exercises that I do at home, I am hoping to keep my hands as flexible as possible for as long as possible, but I've lost quite a bit of strength in both hands. Also have had surgery on both wrists for carpal tunnel syndrome, so the loss of strength could be a result of that as well. My feet are stiff too, have bunions, but the toes are not curling as yours are. I've tried orthotics - padding and shaping inserts for my shoes - but didn't really help. They are recommending surgery for the bunions but I'm putting that off - I'd need to be in a wheelchair for at least 2 weeks if I have surgery -- I wouldn't be able to use crutches with my hands, wrists, etc.

 

Have you been to physical or occupational therapy for your hands? Perhaps a surgery consult for your toes? Hopefully you can get some relief soon.

 

Thinking of you and wishing you well,

 

red

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Hi Liz,

 

I didn't have my toes curl under, but other than that you describe what I experienced in the beginning with my hands. I had occupational therapy for a year. Like Red, I had my hands splinted, but mine were splinted 24 hours a day, with special splints for daytime (and carpal tunnel and ulnar drift) and other fuller splints for nighttime, as well as some finger splints and hand exercises to get twisted/turned fingers back into proper position.

 

Along with that, I was taught how to use a wax machine at home as well as a series of exercises and measuring for my hands and mouth, and given anti-inflammatories to reduce pain and inflammation. I don't want to think what shape my hands would be in now, if it weren't for all that!

 

If you haven't already, please see your doctor and ask for therapy for your hands. Then follow all their advice, to the letter.

 

There is no reason to let them get worse, when there are so many things that can be done to prevent the damage. Untreated, these sort of things are likely to lead to significant and sometimes lifelong disabilities. But I must say, nearly everyone I've heard from who has scleroderma and successfully fought back hand involvement, they were the ones to ask for a referral to hand therapy from their doctors. Perhaps some doctors leap forward and suggest it themselves, but I sure wouldn't sit around and hope they get that great idea, somehow. If it were me, I'd be camping on their doorstep this week.

 

In your case, there are also your feet to attend to, as well. I had a lot of foot pain in the beginning and nearly drove my chiropractor nuts trying to find relief. Then it magically went away, only to recur occasionally. I wear exceptional orthopedic shoes with custom arch supports now, which help a lot.


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.

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Hi Lizzy

 

Sorry to read that your hands and feet have been so painful and uncomfortable; as the others have said I'm afraid it seems to be part and parcel of having Scleroderma.

 

In the beginning, before I really realised what the problem was, my hands were very swollen and painful and I also had bi-lateral carpal tunnel syndrome for which I had the decompression operation. Like Red and Shelley, I too had splints which I used to wear at night; they didn't really make much difference but as soon as I was diagnosed and put on Prednisolone the swelling went down and my hands and fingers, although stiff, were much less painful. I was given some hand and finger exercises to do by The Royal Free Hospital which I do try to keep doing; I'm probably not as meticulous as I should be about doing them though!! :rolleyes: ;)

 

Like Red I have a bunion-like swelling on the side of my big toe; it can be very painful if I knock it accidentally. :( I don't think it's caused by Sclero though; a few years ago a large horse stepped on my foot and did the 'hokey-cokey' on it and it's never been the same since!! ;) :lol:

 

Perhaps when you next see your doctor or consultant he/she could suggest some exercises for you to try on your fingers and toes; I do believe that keeping them moving does help!


Jo Frowde

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Thanks guys for your input, much appreciated. I was given hand exercises by occupational therapy which I try to do regularly but do forget. I also sit on my hands palms down just to try and straighten them but they always go back. I was given splints for my wrists but they didn't do anything for my hands but I find them more of a hindrance.

 

Lately my fingers have been swelling that much they are bursting slightly round my nails and getting quite sore.

 

At the moment I am waiting to see a new rheumatologist so I can maybe get sorted. I did see a podiatrist for my feet they made me insoles for my shoes but they didn't help, but they didn't do anything to help my poor little toes. Huh.

 

Be well everybody.

 

Love n hugs,

 

liz

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Hi Liz,

 

I agree the splints are definitely a hindrance. But they aren't the sort of thing where you see overnight results. It can take many months for them to help, and some of what they help is to prevent progression. Another thing they do is that if the skin tightening progresses unrelentingly despite everything, then the hands are permanently frozen into the most useful position. This is the difference between being able to open a door, go to the bathroom, get dressed, and eat with utensils or unable to do any of that without assistance, which can happen if the hands freeze into a closed clench or other awkward arrangement.

 

Also with the insoles, they are just to be worn all the time, even if we feel they aren't helping, because they are at least helping with a portion of the problem even if they don't solve it completely.

 

Please don't skip out on your therapy or avoid exercises anymore. There are some of us who escaped permanent hand damage from scleroderma (at least, so far) and all of us sing the praises of doing all the exercises, wearing the splints, taking any anti-inflammatories as advised, and so on and so forth. It is not an overnight project, to be successful it takes dutiful attention despite seeing any significant changes for weeks or even months on end. The process was so gradual for me that it took at least a year before I could see and feel the difference, and longer than that before my doctor let me off the hook on wearing the splints all the time. Now I still return to the exercises or splints, as needed, at the very first sign of trouble.

 

There is no pill that I know of, which defeats scleroderma hand involvement, and although a new rheumatologist will probably be a pleasant thing, they are going to need to be able to rely on you as an active and dedicated participant in your own care. So, no time like the present to dig in and do it all, eh?

 

Please promise us that just for today, you'll do all your hand exercises. Just for today you'll wear your splints. Just for today, you'll take steps to try to prevent longterm damage, even if it feels fruitless and cumbersome and as though it's a waste of time and effort. We understand, having been there, done that! The gratification is little, few and far between, but still very worth it.


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.

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Thanks for that, Shelley, don't get me wrong I do do the exercises, maybe not as often as I should, but I'm constantly using my hands in one way or another even when I find things difficult. As for the splints mine are only for my wrists they don't do anything for my hands and the insoles never did any good at all. I buy my own fluffy ones now to help keep my feet warm and I take my anti-inflammatories every day, can't be without them. But don't worry I do understand what needs to be done and know what can happen, so it's up to me to do as much as I can to prevent it.

 

With warmest regards,

liz :VeryHappy:

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Hi Lizzy

 

I've just been referred to get a splint for my hand which occupational therapy will be made to fit, it will hopefully help to stop issues with my thumb since lifting things like a kettle is hard for me. I also use anti-inflammatory gels along with pain medications.

 

Buttons

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Thank you, Buttons. I'm waiting to see a new rheumatologist at the moment at a different hospital so hopefully I'll get different things sorted now.

 

With warm regards,

 

liz

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