Posted 14 August 2008 - 01:06 PM
Posted 14 August 2008 - 04:28 PM
When my fingers started to curl my rheumatologist referred me to an occupational therapist (a physical therapist would also be helpful) where I was given hand manipulations or massages, warm wax and sand treatments. The wax treatments consisted of dipping my hands and coating them with warm parafin wax and wrapping them in towels for a while. The sand treatments, involved inserting one hand at a time into a glass or plastic square enclosure with warm sand. These treatments relieved the pain and improved some flexibility. I also had customized hand braces made to wear at night or in the day, whenever possible. This was a little difficult because I had to remove them for handwashing or at meals. Sleeping with them was a challenge but preventing as much of the curling is more important. Lastly, there are exercises which should be done regularly and as often as possible to keep the fingers from curling. Simply, placing your hand palm side down on a flat surface, press and hold for 30 sec. Repeat 10 times for each hand or as much as you can bear if it is painful. These are a few options I was given. If hand therapy is started early, the finger contractions can be minimized to some degree.
You can discuss with your doctor what your options are and set up a daily hand stretching exercise routine as soon as possible.
I hope this information is helpful.
Posted 15 August 2008 - 12:15 PM
My hands are long gone and were by the time I got to see the rheumatologist. None of my fingers straighten and on my right hand the 3rd finger is completely bent. I am afraid it's too late for me now.
Razz is right, start exercising now and wax baths do help with pain for both hands and feet.
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Posted 15 August 2008 - 12:32 PM
I don't have a problem with my hands (as yet) ~ it is my feet and legs that are the problem at the moment. Does anyone have any suggestions for them? I think Amanda just said the wax treatment helps hands and feet. I'll have to look into this. Anyone else with suggestions ~ I'd love to hear.
Posted 15 August 2008 - 04:51 PM
I have curling of the fingers in both hands, but my right hand is the worst. Like Amanda mine were already curled by the time I saw the rheumatologist. He put me on drugs straight away and this stopped them getting any worse. When I asked him about exercise he just said "whats done is done". Now I am seeing a physical therapist and he has given me exercises to see if that will help, but he hasn't seen a Sclero patient before...so he is experimenting on me. I also use a parrafin wax bath and it really helps for the pain and is also good for warming the hands when I have a raynauds attack.
Posted 15 August 2008 - 07:24 PM
I feel so bad for you. I am having fears about my mouth as the area has been slowly but surely getting tight, and the whole area around cheeks and mouth have become thick with fibrosis. I find these changes to be very upsetting. My hands have not been having these problems. It must be so hard to lose function and appearance in you hands.
I have problem with only my rt leg, it started swelling and developed severe lymphedema from the toes to the groin. This was 1985 when this happened, I had surgery for this. It continues to have mild swelling now. Are you having problem with edema, function and motility?
Posted 15 August 2008 - 10:46 PM
Hi Peggy , I have recently started having problems with my hands (but mainly the right one) , the fingers are curling in (only slightly at the moment) and the space between my thumb and forefinger has shrunk so that my handspan is now much less. I was given some exercises by the physio using thera-bands (sort of big rubber bands) which have helped a bit and have bought a wax hand/foot bath, but have not used it yet. My rheumatologist has suggested starting cyclophosphamide to slow progression, but I'm till deliberating about that. He has also said that PUVA (ultra violet light therapy) may help.
I think that you should definitely ask about seeing a therapist re exercises/treatment for your hands. As others have said - once the damage is done there may be nothing we can do about it.
Helen: I was interested to read that your Dr gave you drugs to stop progression - can I ask what the drugs were? Also interested that you said that, like mine, your right hand is worst. I thought I was a bit odd- all I have read say that changes are symmetrical - but it obviously is not the case.
Posted 16 August 2008 - 08:21 AM
I'm sorry to hear that has started happening to you as well as to hear about the others here that are having or already gone through similar progressions. I don't have that problem either so I can't offer any more suggestions...just an ear.
Posted 20 August 2008 - 01:44 AM
Posted 24 August 2008 - 05:54 PM
Posted 25 August 2008 - 08:47 AM
Thanks again and warm hugs,