Cannot turn hand "palm up"

I have had SC for three years. After only 6 months while my hands and arms stiffened....I cannot turn my palms face up..like to take change from a sales clerk, etc...(I always have them drop it in my purse or pick it up with my fingers). I have been on this site for about 4-5 months now and have never had anyone say this...does anyone have this problem? I had a nerve test done on my arms and the tightening in my arms is constricting muscles so I cannot turn my wrists. Any info would be great.I always wonder if it will soften enoough to loosen my wrists.
Joanie

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Hi Joanie, my wrist doesn't turn either, I do the same thing. Sometimes at the doctor's office when being examined they want to look at my palms and finger tips and I want to say "wait let me stand on my head". I have started to have a little more flexibility in my wrist and arms. I don't know if they will ever move better I just keep hoping for the best. Keep being strong and positive and good things will happen.
God Bless You
Doe

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Hi Doe
Its good to know I am not the only one..not that I wish this on anyone! You are right about standing on your head!
How long have you had SD? What a crazy disease...it is so hard to explain to anyone that you don't feel well when we are not sick. Each day is different. My arms burn so I take oxycodone every 6 hours which helps but I hate pills and wish I could stop...I always say when the arms soften, the pain will stop...but it never softens...My husband massages them every night with cream which feels good, i can actually feel the blood rush to my fingertips, but they still stay so hard. I have no internal damage...just body aches.
Take care...I love this site to share our stories as I feel so alone..every one I see seems "normal"
Joanie

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Hi Joanie;
Yes,I had almost the same problem.I could make about 1/4 turn but definately not enough to take any change.My hands were pretty well closed also and the constant burning was terrible.Now I am well but dread the day that this disease might return.
Lynne C.

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Me too. Receiving change is an issue. I sometimes exercise with a hammer to stretch it, and if I do it everyday for awhile it helps. Someone else taught me that exercise.

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So good to hear you are better...I look forward to the day!

The hammer sounds interesting too!

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I also have the same problem. My wrists have stiffened and so have my hands. I'm not able to do much with them. You should do hand exercises everyday and go to see an occupational therapist.
Take care,
Ana

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I, too, have this problem. I use my debit card all the time just so I don't have to deal w/the change thing. I also miss being able to drive through a Dunkin Donuts and get a coffee because my hand won't open up wide enough to grab the cup. On the good side---for the longest time I couldn't go through any drive thru (bank, pharmacy, etc.) because my are didn't straighten out enough to grab the stuff--but now can do that and I am just beginning to be able to turn my wrist more--the right hand better than the left. I, too, am hoping that things relax and I gain more flexibility. Good luck!!! This site has been so good and thank you Christine2 for being such a great responder!!!!

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My son (12, systemic scleroderma) has a lot of issues with his fingers and wrists. We see an occupational therapist once a week now and it has helped greatly! We had to wait about 6 months to see someone who had previous experience with scleroderma, and who was willing to treat a child.

Basically, she uses paraffin, rubs, and stretches his hands and wrists. Then, she gives him various exercises to do at home. We also do paraffin dips every night at home.

We have a busy household of three teens but we are vigilant with the hand therapy. His mobility has improved a lot so it's all worth it....even to him!

Good luck....and get an occupational therapist!

Melissa

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Philsmom,
I saw that you mentioned Paraffin dips. My massage therapist was wondering if that might help my hands and you are the first person that I saw mention this. Does it help to soften the hands, or with pain and stiffness?

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Yes, I also have that trouble. I use the cc to pay also so I don't have to deal with change etc.

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My PT also recommended Parrifin. I have it on my list. She said if you like heating pads for pain you"ll love warm parrafin

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Parrifn will give you moist heat for a fairly long period of time. It is grea before stretching. It feels very good.

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How long has anyone had SD before their arms and hands straightened?

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I guess we all agree. I find that I have to rotate my whole arm if the clerk gives me change. I gave up on "drive through" anything.

A little note, ATM cards work great!

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Hi Joanie;
All traditioanal meds failed,methotrexate was of some help as I did not have quite as much pain but did nothing more and almost caused liver failure for me.I had nowhere else to go so I went on AP and it worked beautifully.Within 6 months I had no more brain fog,a lot more energy and much less pain.Things did not progress from there until I found a good holistic/environmental/AP doctor who figured out I had celiac and multiple food sensetivities caused by gluten.It took 18 months to turn around the damage and then AP kicked in andI was in remission in an other 18 months.I have been totally well for the last 8 years but if I totally stop the antibiotics the SD wants to come back.We finally learned I have Lyme that is the main cause of my SD soI will be fighting this for the next 2-3 years or so.By the way.I look and feel just as I was before SD except for some ridging in my fingernails that was caused by capillary damage,that will never change.

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For some folks, paraffin may be too hot....I tried it with my ot, but couldn't tolerate it. Love the moist, hot towels I had at ot, but haven't found anything that works as well. Doing exercises in the shower is helpful for me.

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Hi FloridaRN,

Paraffin dips help both with stiffness and pain, and to gain range of motion. Here's how it works: when he enters the clinic he goes directly back to her office to dip. Then he waits for 10 minutes while he soaks ip the heat from the paraffin. That way we don't waste the therapists time waiting. When we see the therapist, she removes the wax and rubs his hands and arms VERY vigorously with a highly emolient cream. At first ithurt a lot while she did this (and it still may.) After the rubbing she stretches each
joint on both hands, and both wrists.

Every night at home we do a shorter version of this.

My son has gained back a lot of range of motion doing this. Yes, it often does hurt in the moment, but reduces pain so much during the week that even a 12-year-old thinks it's worth the time away from friends once a week! As you could imagine, having a lady fussing over his hands isn't something any boy would really like! So, for him to find value in the process, and even agree to do it on his own at night, it must really work!

One caveat....it is important to find a therapist who knows scleroderma hands. Most therapists are familiar with RA hands, and the treatment is quite different.

Good luck! As always, please feel free to ask any questions. The world of juvenile scleroderma is different, but NOT that different!

Melissa

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I have had scleroderma for 5 years and I have been fortunate enough to have found an excellent physical therapist who knows scleroderma and is willing to do the difficult manual work to keep me mobile. She finds the restrictions, works them loose through massage, and pulls, pushes and twists until I can move them freely. This can be painful, but it's worth it. I do my exercises and stretches at the gym on other days to try to keep them from getting stuck again. Of course, since I have scleroderma, they always start to build up again. But, thanks to seeing her on a regular basis, I can walk and move fairly normally. And, yes, I can turn over my wrist. She spends a lot of time and energy making sure I can.

I hope you can find someone that good, but I know how hard it is. I have seen many physical and occupational therapists over the years, but this person is a true expert, and I am so fortunate in that regard.

As others have said, find a PT or OT who is experienced with scleroderma and is willing to do the manual work. If they start out by telling you that you need to exercise, limp away. You can't exercise until they do their part to get you unstuck.

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Hi Joanie

My wrist does not turn either. I normally just ask the till people to put my change back into my purse. Or they must give it to me in a way that I can take it. There is obviously the odd person that go into a flat spin and dont know what to do and they dont listen so then they just chuck the money on the counter.

I have read all the replies and am thinking of going back to the OT. I have been before, but it was so sore that I hated going and gave up eventually, but it seems that it can help. I do a few had excercises, but it does not really help. I really felt it today while icing a cake, it got quite messy...LOL

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You should watch the 2010 conference video on OT hand therapy. It's pretty wonderful.

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