SaraM

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About SaraM

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  1. Chopper, I have Raynaud's and have had some pretty bad attacks. Anything that happens to my fingers, even in the middle of a D.C. summer, leaves me with at least painful, sore spots. In November 2009 I got a papercut that actually JUST healed this June. My rheumatologist, dermatologist, and the doctors and Johns Hopkins all said that difficulty healing can definitely result from reduced circulation due to Raynaud's. My advice is warm water! We moved to a new place with a bathtub this winter (had only a standing shower in last apartment), and I just soaked when my hands got sore. Also, a heavy-duty moisturizing cream seems to help a lot in relaxing the irritated, tight skin. Good luck and warm hugs! Sara
  2. Hey, Gatorgal! I have Raynaud's and have had it for 4 1/2 years. I was living in Syracuse, NY for most of those years, and every year things got worse. They first diagnosed me with Raynaud's but didn't do the sclero tests. I started meds 3 1/2 years ago. Eventually, they did the blood work. Like you, I have not had any major symptoms besides the Raynauds. I have asthma, acid reflux, irritable bowel, and sleep apnea which the doctors say MIGHT be linked. Anyway, each winter my Raynaud's has gotten worse and worse. Although I have moved south (D.C. area now), I have more flare ups but also a lot more ulcerations. I didn't really take it seriously the first year or two, but by last winter I had no choice. I had at least two or three fingers bandaged because of the sores on them, and they did not heal until June! LAST summer my sores never healed at all. If you are near Hopkins, I suggest trying to get into the Scleroderma Clinic there. I went in January, and they put me on Revatio, which is actually an erectile dysfunction medicine, but it has put the color back into my hands and feet and also got enough blood flow for my hands to heal. The test are frustrating and scary, but I guess it is a "just in case" thing we have to live with. As for the Raynauds, take care of your hands, and ask about Revatio. It has been the most effective medicine I have found yet! Good luck. Warm Hugs, Sara
  3. Hello, all! I haven't written in awhile. I have been having a really hard time this winter with my limited sclero because of my Raynaud's. I recently went to a specialist (a sclero clinic at Johns Hopkins) and they started me on 20 mg of Revatio (a PDE 5 inhibitor, like Viagra). It actually is seeming to help take the edge off of the attacks. I am just waiting to see if it will help my ulcerations heal. Just thought I would share the information in case anyone else is suffering this winter with Raynaud's. Sara
  4. You can make re-usable hand warmers really easily. Take old socks (no holes!), put a scoop of uncooked rice in each, and tie or sew it off. Heat them for about 30 seconds. They stay warm for HOURS!
  5. Hi! I am a teacher, and I had to get fingerprinted when I applied for my certification. My fingerprints have definitely changed over the past few years (I have CREST with severe Raynaud's). I have scars from ulcerations and also noticed the vertical lines forming. I think it is somewhat normal... Hope this helps! Hugs, Sara
  6. Caroline, You and I are quite alike!! I have Raynaud's and limited scleroderma. My winter routine has been to wear a pair of the little cotton gloves ALL the time, whenever I am outside. I then take two of the little hand warmers you get in the packets and put them in the tops of my heavy-duty mittens. I have not tried battery operated gloves yet, but I looked at some websites. If you search for "battery operated hunting gloves" you can find some pairs as low as $20. I am planning on buying myself a pair to try out this winter. I may go with mittens instead of fingered gloves just because they are supposed to be better for circulation. I hope this information helps! I will let you know if I find out any more details. Warm Hugs, Sara
  7. Andrea, I'm sorry to hear about your fingers. I have limited sclero with Raynaud's phenomenon. I have never been on prednisone, but I have had to increase the doses on the medicines every year since I was diagnosed. I am on amlodipine and pentoxyfillin and I use a topic nitro cream. With my Raynaud's I have had a finger swell up very badly to the point that I could not bend it. I don't know if it will help, but here are a few things I have done to get relief: Soaking the hand in warm water Covering whatever open ulcerations/wounds are on the finger with antibiotic ointment and wrapping them in bandaids (I would suggest this for your cuticle that was bleeding maybe). Using a warm heat pack on the hand Again, I don't know if any of it will work for you. The shape and look of my nails and fingers has changed since I started with symptoms. My cuticles definitely get dry and stick out more than they used to. Good Luck and Warm Hugs, Sara
  8. Hi, Summer! I have limited sclero with Raynaud's phenomenon, and I get a lot of discoloration and acute pain from minor injuries. I am a teacher, and someone threw a piece of paper, and I went to catch it. It hit an active ulcer at just the right angle. I saw stars and thought I was going to pass out right there! It literally took my breath away - a piece of paper! The injury had nothing to do with sclero, but the increased sensitivity made it horrible. Also, if you have had an ulceration/flare up of Raynaud's on that finger, it could be that the skin itself is thinner right now so the bruise is more visible. Since a bruise is blood cells visible under the skin, they might very well move. I hope you have healed well! Warm Hugs, Sara
  9. Thanks so much.
  10. Hello, all. I have heard that there is a surgery called a "sympathectomy" that has been used with some success to reduce symptoms of Raynauds phenomenon. Does anyone have any more information? Sara
  11. Andrea, My welcome comes even later, but welcome! And much congratulations on your new little ones! Sorry about your pain. I have limited scleroderma with Raynauds that has progressed from simply cold hands to multiple skin ulcerations at a time. I sympathize with your situation with your hands! I have learned a couple of tips if they are still bothering you, and if you search the information here on Raynauds, there's a lot available. I am on some vasodialators and using nitro paste for my hands now, and they are manageable. Another thing to remember about Raynauds is that it is caused by the SHIFT in temperature. I don't know if that is helpful, but I hope so! I also want to congratulate you on homeschooling. I am a teacher myself, my mom homeschooled my younger sister, and my mom is now a special education teacher (in an autism support classroom). Teaching, even your own children, is not an easy job. If you ever want to commiserate or brainstorm, we can off-forum! Welcome, again, and let us know how the blood work turns out. Warm Thoughts, Sara
  12. Thanks so much to everyone for the warm welcome! I have been using the nitro paste with good success. I am trying to cut back my caffeine and really watch out for situations where I might injure my fingers. I haven't been getting flare ups as much over the summer, but every cut seems to turn into a major wound. The nitro paste seems to be helping to keep good color in my fingers and to keep blood there to help them heal. I just read the Spoons article, and I think I need to take the author's advice and SLOW down. I also need to learn to ask for help with tasks that will put stress on my fingers. It's frustrating when you are used to being independent! Warm thoughts to all, Sara
  13. Thank you! I will definitely check out the articles you suggested. I just started the nitropaste, so I hope it will help. I am also going to try to go to a specialist at Johns Hopkins whom my dermatologist recommended. Thanks also for the welcome! =-) Sara
  14. Almost four years ago I began getting numbness in my hands. It kept getting worse, so the next year I had blood work done which pointed to scleroderma. The ulcerations began forming the year before last, and they have just kept getting worse progressively over time. I moved from upstate New York down to Southern Maryland last year at this time. I hoped the move would help. The winter was predictable, with one ulcer at any given time, but this spring instead of clearing up the ulcerations got worse. I have been to my rheumatologist and a dermatologist, but I have two persistent ulcerations that haven't healed. I am going on three months with these wounds, and I could really use a new idea. So far I have been taking blood pressure medications, and it helps, but I am only 26 and my blood pressure runs low, so they don't want to increase the dose. I am just starting nitropaste. Any input would be greatly appreciated. Thanks! Sara