Jump to content
SCLERO.ORG
Sclero Forums

laurie906

Members
  • Content Count

    15
  • Joined

  • Last visited

About laurie906

  • Rank
    Bronze Member

Profile Information

  • Location
    San Diego
  1. Hello, My doctor recommended I stop using soap. Sounds strange but you can buy lotion, cream, and cleaner (soap) that's non- comedogenic so it won't remove the oils left in your skin. I get a major brand name at my local food warehouse. I didn't know if we could mention the name here, but email me if you want it. I still get some itching, but it's less severe and a topical cream helps. Laurie
  2. Jennifer, If I read this article correctly, I sounds promissing for initial diagnosis to inhibit or stop the additional collegan production. To stop sclero progression after diagnosis. But, I didn't see anything about reversing the damage. Laurie
  3. Patty, You may want to track how often it's happening. This way the doctor can assess how bad it is and if you need to just be aware and keep your hands warm or if you need a medication. Like we need more meds. You may want to take a cold pack to the doctors office and SHOW him/her. Then you will be sure. I kept telling my doctor I had it under control (I had stopped my fingers and toes from being numb) but it took some time before I realized I had to look at my hands to determine if I had a raynaud's reaction. I didn't always feel it and my fingers and toes didn't always go numb!
  4. Hello, I don't know if this helps or adds to the confusion. I also have sclero which is "restricted" to my skin. I first had symptoms in May 2006. In September 2006 I was diagnosed with Limited sclero. By December it has progressed (I would call this rapidly) to cover Fingers to shoulders, toes to hips, collarbone to cheeks. My doctor changed the diagnosis to Diffuse. Although it's currently not in my internal organs (we've completed every test!) My doctor is not convinced it won't travel there. I mentioned that each site I visit, for souce of info I find has different definitions,
  5. Heather, Rice bags! Who would have thought! Can you add instructions on how to make some? Just some cotton fabric and rice? or do you need special fabric? Thanks Laurie
  6. Hi I am so sorry for your pain. It sounds like a severe Raynaud's episode that I had. I have a topical application I use for pain - really helps with that rubberband description you gave. I feel that from my wrist up my arm to armpit. From my collarbone to my chin, and from my upper thigh to behind my knee. It's just like you described. Someone, something tighten a rubberband and if I stretch too much( or sometimes even move) I feel it will pop! I also had a "pain all over, burning, pins and needles" reaction to my migrane medicine. I was on Imitrex. Turns out this was a severe R
  7. Hello! I suggest you take a picture! My Digital camera is my best friend when something shows up like this.
  8. Hello Everyone, What excellent ideas! Sam, I plan to use the zipper pull suggestion immediately. My daughter says she can make one out of embroidery floss (like a braid) which may be softer, will color match, and I can use on the dress slacks I have. So thanks for the idea. I have been having trouble lately with sorting papers. I seem to have to wear gloves all the time. I have looked for the gloves with texture on the fingers listed above but haven't found them. Did find a box of rubber fingers at the office supply. These come in SIZES so I plan to use a larger one to fit over
  9. Hello Susie and Barefut! Thanks so much for responding with great suggestions. This is what I was hoping for. Susie, I like your clothes suggestion. I have had to give up jeans but am working out a new look. Already let my husband know....$$$ may be spent! I find the yoga pants and winter running tights work best for me and even help my legs to look somewhat shaply. Is that to vain? I was starting to look like a bag lady just to keep warm. Barefut, you should try the new can opener that opens cans on the side not the top that is advertised on TV. I found one in my stocking thi
  10. As a new sclero with skin involvement, there are a variety of things I am struggling to do. Some of these are at home and some at work. Just wanted to share some changes/purchases I have made and hope of hear from others on how they accomplish difficult tasks. I have Raynaud's and Skin tightening Sclero. I was having trouble with my hands going numb at night. It didn't happen during the day. I have SOLVED this! I need to keep my skin mosturized so each evening I massage with lotion, put on cotton gloves, the use short carpel tunnel braces on both hands. This was VERY uncomfortable i
  11. Hello to all! Still a newbie but I have posted on a few forums and I thank you all for great feedback. I live in Escondido, CA, San Diego County. I began having symptoms in May 2006 and was diagnosed in September 2006. I have two kids a daughter 19 and and son 13. I am still working. My husband and I have our own company and provide software and accounting consulting. I also complete my training and testing as a real estate appraiser in June. I have a mentor and am persusing that as well. My daughter is in her second year in college and doing spectacularly. We are very proud of
  12. Irene, I am a new member with a new diagnosis of Sclero. Your description of muscle pain to the point of burning (like you have been working out for hours) sounds very familiar. I had this reaction as a side effect of prednisone. I could track it to this med as it was the only one I was on at the time. I also expirienced a racing heart. If I sat still I was fine, but if I walked down the hall my heart went racing and if I tried to fold laundry my arms felt like I just couldn't lift them one more time. The fatigue moved to my legs also. I was on 10 mg of prednisone, we backed off to
  13. Hello, I am a new member/new diagnosis. I also have "friction" rubs. My rheumatologist called them tendon strains but... yes, they hurt and yes, I can HEAR the collagen squishing around as well as feel it. The first was in my knee, the second in my left wrist, just today in my left finger/knuckle next to my pinky. Ofcourse I am LEFT handed so that's the hand I use the most. My doctor told me to be sure to stretch/warm up my leg muscles but the knee kept hurting. He took xrays and said it was "runner's knee". It was painful to roll over in bed, my knee would lock up and I couldn't go down stai
  14. Pamela and Janey, Thanks so much for the response! I am sure this support will be helpful. I am unsure if the following should be posted on this subject forum for elsewhere. Please let me know. I also have Raynaud's Syndrome to go with the Sclero. I am seeing PT/OT weekly right now. My Hand Therapist changes/adds to the exercises each time and checks to be sure I am performing them correctly. She also measures my ROM monthly to show improvement or not, and sends the results to my rheumatologist. I have been seeing a Hand Therapist weekly since November. I begin seeing a PT to
  15. Hello, I am new to forums. I have been diagnosed with Scleroderma in Sept 06 (limited) that changed to (diffuse) in December 06. I am very happy to have found this support on the web. I currently only have skin/joint involvement but am concerned at how fast it's progressing. My first symptoms were swelling hands with minor pain in May 06. This has progressed with skin involvement from fingers to shoulder, toes to hips and some in the neck/cheek area. So far all my organs are clear. I am interested in any additonal info on Dr. Clements at UCLA. I live in southern California and this i
×
×
  • Create New...