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New To Forums-wondering About Contracture Treatments

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#1 Curt



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Posted 04 October 2007 - 10:04 AM

Hi everyone, I'm fairly new to the forums and I'm still getting to know my way around. I have found some great discussions and lots of useful information, but there is one topic I haven't found alot of information on. Is there ANYTHING I can do about contractures of the hands?

I was diagnosed with diffuse scleroderma in october of 2005, I was 16. I had little signs of the disease for the first year or so, but I'm now 18 and in the last 12 months I've developed severe contractures in my hands and I feel the loss of flexibility in ever joint in my body. I can no longer use my hands for much more then one could use hooks, and I can no longer reach my feet to put on shoes or socks. I am currently not on any treatment for the disease itself, though I take many other medications to treat the disease symptomatically. I am hopefully starting low dose cyclophosphamide treatments in the next few months, but in the meantime, or as a suggestion for an alternative, or something to do in conjunction with the cyclophosphamide treatments....

What can I do?

Thank you all for your time and care,

#2 janey


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Posted 04 October 2007 - 11:28 AM

Welcome to the forum! I'm so sorry that you are here due to having SSc and at such a young age! It does sound like you have been handling it quite well, until recently. I wonder what set it off again. Are you seeing a rheumatologist or even better, a scleroderma specialist? Please do, it you aren't.

In reference to your contractures, we do have a section on joint contractures that you might find helpful. Since you have it in your hands, you might also want to puruse the section on Sclerodactyly. My hands were affected at first, but lots and lots of hand exercises everyday, really helped. I hope this information helps you.

Again welcome! We hope to hear from you often.

Big Hugs,
Janey Willis
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#3 Sweet


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Posted 04 October 2007 - 04:19 PM

Hi Curt,

Welcome to the Sclero Forums. I'm so glad that you found us and glad you are now posting. You've received a couple of great links Janey, I hope they are helpful to you.

I look forward to knowing you better.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#4 Margaret


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Posted 05 October 2007 - 07:01 AM

Hi Curt ,

I just wanted to welcome you to the forums. My son, Gareth, was diagnosed last fall with sclero type issues. He was 19 in May. His are internal (esophagus, lungs, vocal cords, fatigue) not his hands or Raynauds. I can't offer you any advice. Gareth was started on Plaquenil June 1 and is slowly returning to 'normal'.

Take care, Everyone.

#5 jefa


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Posted 06 October 2007 - 06:32 AM

Hi, Curt and welcome to the Forums. I am so sorry to hear that you have been one of those for whom contractions are more aggressively presenting. Are you being seen by a rheumatologist or are you seeing a scleroderma specialist? While it must be painful, I agree that whatever exercise you can manage will be good. Is it possible to get someone to do some massaging and stretching with you? When I am stiff, I find it very soothing to have my husband rub the stiffened joints with warm oil - it is too painful to do it myself at times. I haven't tried a paraffin bath, but others swear by them, too. Hugs to you.
Warm wishes,

Carrie Maddoux
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#6 rlbrussell


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Posted 06 October 2007 - 07:09 AM

Hi Curt,

So sorry you are having so much trouble. I was in a similar situation last year. I have since regained all of my flexibility back in my joints except my hands. I had a physical therapist that would do a lot of passive stretching for me and I take 3000mg of Cellcept. Although my hands have not improved physically, I have regained function because I have learned to use them differently and I have adaptive tools. I continue to work on my hands through a Hand Occupational Therapy center and hope to see some progress soon but time will only tell.
Diffuse Sclero
dx Jan 2006

#7 WestCoast1


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Posted 06 October 2007 - 02:13 PM

Welcome to the Forums Curt. I am sorry to hear about all of your symptoms. It sounds like you are receiving the appropriate treatments for your symptoms.

Let us know if you find a treatment that works for your hand stiffness.


#8 epasen


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Posted 06 October 2007 - 09:57 PM

Curt, welcome. I'm really sorry to hear that you're not able to use your hands normally, that makes me really sad. I'm also sorry that I have no answers for you, just wanted to say that we're here for you.


#9 MicheleM


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Posted 07 October 2007 - 01:49 PM

Hey Curt. I have just recently re-entered the forum myself! You will find a tremendous amount of support and information here. You might try some parafin wax treatments. The wax coats your fingers/hands and the warmth feels really good and might give you some relief for a few minutes - might even be enough to help you stretch some and in time get back some of the flexibility. Your doctor would probably be able to prescribe a drug to help the muscles relax, don't know if that would help, but the doctor would! Hope you're doing better now! Warm hugs your way, Michele
Soft hugs your way,


#10 emmie


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Posted 07 October 2007 - 04:30 PM

Hi Curt and Welcome,

Well, doesn't it just stink that this hit you so young. I suppose there must be a reason, but to have to try to figure it out when you're 18 just seems like a pretty big load to me. Any time you have a question or want to just dump a big load of complaints, this is the place to come. We all "get it" and will try to help or just listen.

Now, another suggestion for your hands. This one came from the surgeon who did the surgery to help my Raynauds. Along with the parafin bath that you've already heard about, he also suggested squeazing a wash cloth or sponge while in the shower. The warmth of the water helps to keep the hands more flexible. Squeeze the sponge as tightly as you can followed by opening the hand as far as you can. Repeat as frequently as you can. Do this every day.

Good luck and hope we see a lot of you around here.

xoxo emmie

#11 Curt



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Posted 14 October 2007 - 03:17 PM

Thank you everyone for all of the replies. I really do appreciate it!

The last few months have been the toughest for me, I really don't have much energy to do normal day-to-day things. It just seems like every few days I wake up and realize things have only gotten worse. I have recently acquired splints to wear during the day/night to achieve more stretching than physical therapy alone could give me. They are too uncomfortable to wear and I just seem to be having a lot of issues with them and stretching manually seems to get me nowhere. Pretty much every other muscle in my body is tightening as well. Is there nothing that can just help me loosen up?

I am, as I have stated before, just 18 and I really don't have a lot of ambition in life. This disease caught me at a crossroads. I was in the middle of making decisions that would affect the rest of my life and having this on top of that has just taking away any and all motivation I may or may not have had. I could certainly be doing a lot more exercising/stretching at home, and be in much better contact with my doctors, but most of the time I find it hard to really even care? I just need SOMETHING to show me some sign of getting better, something to at least get me started and get the ball rolling, but what?

My list of medications are as follows:

-zanaflex (Muscle relaxant)
-Trental (Bloodflow)

I had previously tried low dose cyclophosphamide infusions once monthly, but stopped after two months because I didn't see any changes. I was informed afterwords it takes up to 6 months to see if its workin or not. hopefully I will resume the treatments sometime in the next few months.

Thank you again for all of your help and suggestions