CRS of CREST - Not a happy combination

Raynauds has been challenging for the past several years, but I've learned to live with it, through gloves and heating pads. =) However, this past summer the R of CREST has been joined with the C-Calcinosis and the S-Sclerodactyly. The swelling stiffness of my hands, joined with calcium deposits growing on my fingers has made daily living a chore. Mornings are the worst. My hands are stiff and sore and don't want to work. (I'm not a morning person in general, so this makes it even more challenging =/ ). Throughout the day, I frequently wear band-aids to lesson the pain of bumping my fingers from normal usage. The fingertips are also sore, and I can't even open up a can of soda. =/ Some days are better than others, but it is quite frustrating at times.

I live in Japan, and so the medicine here is a bit different, and so far my doctor says there is not much to be done. The only medicine she said might work, has negative side effects with the lungs. Since I was treated for pulmonary fibrosis a couple years ago (due to Scleroderma), she said that would not be a good idea. An interesting decision, which do you need more, your lungs or your hands? =) So there is not much to be done. The Japanese have a phrase, "shoganai" which means it cannot be helped. That is where I am at. =/

I am thankful, though, that although might hands are quite troublesome, my situation has been and could be worse. I keep thinking, it's just my hands. Yes I use them a lot, but they aren't as vital to life as, say my lungs. =) So I do try to remind myself, that this will be ok. Just super annoying, but only slightly debilitating.

Just wanted to share...If you have any thoughts or suggestions, I would be greatly appreciative!

6 Replies

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  • this sounds simple but it works for me. get a tube of desitin diaper rash cream and cover the ulcers with it,then cover it with a band-aid. the zinc in the cream makes a big difference. i hope it helps!

  • Thanks for the idea. Not sure what the Japanese equivalent is, but I will look into it.

  • the zinc in desitin is coming from zinc oxide( which is the white pigment), so just about any thick white ointment containing zinc should work, if you can't find it in Japan, you can order it online

  • I have the same problems with my fingers. Some days the pain is almost unbearable. Like you, I am thankful that for now this is the worst part and my lungs are not involved. I have found several ways around some of the more tedious tasks that I have trouble with because of my hands. I keep a good pair of scissors laying around for opening plastic packages and such....a file-type letter opener is great for opening soda cans and cans with pull tabs...also works great for slipping open the tops of boxes of cereal and such. i have a little pair of needle-nose pliers for pulling off those pesky tamper-resistant seals. Hope some of these help.

  • I had the hard-skin, puffy hands (and all over my body) for about 5 years and then the skin slowly softened and my hands became "useful" again. So don't despair! I still have pain in the fingers because of the Raynaud's and scleroderma, but I do my best to protect them with gloves, good scissors (I like the recommendations on that!) and other tools. Find ways to adapt! Best wishes to you!

  • Thank you both for the great ideas! Having scissors and a letter opener handy will be a huge help. =)

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