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Kiwi

Hand Surgery And Parrafin Baths

11 posts in this topic

Hi there

I've been reading the posts on tight fingers. I've had severe diffuse Scl for 2 years and my hands are curled and almost frozen with vey limited movement.

Does anyone know if people get surgery for this?

Also, do you think a parrafin bath would still be beneficial?. It's sooo hard to move the fingers and the knuckles on my hands are frozen and don't move at all, not to mention that I can't straighten my arms as the skin is so tight now.

Much appreciated, Megan


Kiwi

 

Diagnosed 2006 - Diffuse Scleroderma

Skin and lung involvement

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Hi Megan! I'm sorry to hear your hands are giving you such trouble. Like Barefut says, a paraffin bath can't hurt.

 

In fact, I can tell you from personal experience that they really help. For one thing, the heat stimulates blood circulation in the hands, making it harder for ulcers to form and helps with joint aches. The fact that the treatment also moisturizers helps as well to prevent ulcers and keep skin soft.

 

Good luck,

 

Claudia

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Megan,

I am so sorry to hear about the pain you must be having. My hands have just started tightening and the pain is unreal. I can't begin to know what you are feeling. Have you seen a hand therapist? I have done the parrafin wax when I was in hand therapy and it was awesome. Now I do warmeups on my hands and feet. Wow , it's great! Take care. I didn't answer your question, but I wanted you to know that I was thinking about you.

Nan

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Hi Megan,

 

I am so sorry to hear that you have lost so much mobility and function in your hands. I do remember a while back someone on the board talking about their husband having the hand surgery. I can't remember who it was, but am hoping she might see your post and respond. Here is an article that talks about hand surgery for sclerodactly. Here is another that talks about the Parafin wax bath and how it helps with mobilbity and function.

 

I hope this information is helpful.

 

Warm wishes,

Heidi

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Megan,

Really consider asking your rheumatologist for hand therapy with a physical therapist. PT restored my range of motion quite considerably. Also YES YES YES I do recommend paraffin. It feels lovely and is quite theraputic.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Thank you for all your input - I did do a couple of hand therapy sessions but it seemed to be all about testing the range of motion and gauging whether it had worsened or not instead of excercises. How do they excersise your hands?

They also made me a funny splint that tried to stop my hands curling over while I sleep but I had heard that it isn't proven effective. In saing that they aren't getting any better...

Can I do a paraffin bath if I still have 2 ulcers on my fingers? I have had them over a year but they are not getting any worse.

I have to say the skin tightening and ulcers on fingers has to be the WORSE part of this disease and it feels as though they will never go away!

Will the paraffin bath make them worse?

Thank you again, Megan


Kiwi

 

Diagnosed 2006 - Diffuse Scleroderma

Skin and lung involvement

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Megan,

My therapist has me squeeze sponges and balls to build strength, pick up pennies and other small objects for dexerity and mobility. It sounds silly but I hate sponges. I do 3 reps, 10 squeezes of each of the 3 sponges. My hand gets tired half way through. My hands are quite weak.

 

The paraffin softens the skin and helps relax the hand, but I don't know if its good for ulsers? Good question. I hear nitro cream is good for uslers... although I've never had to use it.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Kiwi,

Are the uncers infected? Are you on antibiotics, tracleer or viagra?

Sydney

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Another drug like tracleer and viagra is Cialis and that's what I'm taking. It has worked miracles for me. My Raynauds is much better and, since beginning the Cialis, I have not had another one of those awful ulcers on the tip of my finger since I began taking it. I had just recovered from one that lasted about a year when I began getting another one. That's when my doctor put me on Viagra, and later changed it to Cialis. At the time I was on Procardia. It seems to help some people, but it didn't do a thing for me. Nitroglycerin cream and another vasodilator cream whose name I can't remember also did no good. I used zilocaine cream for pain on or around the ulcer and it also did no good. The ulcer did finally begin to clear up when a doctor (who had actually treated scleroderma before) prescribed sulfasilvadine cream. I can't say for sure that that's what worked, or if the ulcer was just finally beginning to heal, but anyway, things began to turn around about that time.

 

Are you seeing a scleroderma specialist? It sounds as though you may not be getting the medical help that you need. I think having an expert in the field of scleroderma is key to fighting this disease. New things are coming along all the time and if your doctor doesn't know about them, then you won't have the benefit of new drugs and treatments.

 

It is very hard to be your own advocate when you are sick and in pain, but it is so important to find a good doctor who knows about sclero and how to treat it. Once you find someone like that, you can turn over some of the responsibility to him or her!

 

 

 

Mary in Texas

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Hi Mary and Sydney

Thank you for your response.

The ulcers aren't infected - they are in their "scab" phase, which normally comes off and then I'm left with a hole and the process starts all over again.

Viagra and the like isn't an option for me as it is too expensive and I am not working and have no insurance.

there are no specialists in Nz and my rheumatologist only sees me every 6 months. I do use a ulcer ointment that calms them down when they get painful but it does feel as if they will never go away. Because they are right on the knuckle the skin is just too fine to heal over it seems. I did manage to get rid of one on my pinky but it seems to be flaring up again.

Perhaps I will try antibiotics...

Take care, Megan


Kiwi

 

Diagnosed 2006 - Diffuse Scleroderma

Skin and lung involvement

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