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! Best wishes Laurie
  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, but he believed that if skin involvment goes past the elbow and above the ankle, it's diffuse. Susie, if you feel comfortable, may I ask how fast your skin tightening progressed, over how may months or years? Can you estimate how long it was tight before you noticed softening? How is you range of motion changing now that your skin is looser? Are you getting better ROM in your hands or just skin softening? I know there are three stages of the skin part of sclero but can't seem to get an estimate on how long each stage lasts. My doctor feels I'm in the 2nd stage, he called classic (initial swelling is down but skin is still tightening) I feel I still have swelling but...I know everyone is very different with sclero. My doctor says classic could last for 3 - 15 years. Not a narrow estimate. And that during this time preserving the ROM (range of motion) is critical. One of the problems with treatment is not knowing what each patient is going to go thru. All my hopes are with you, Laurie
  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 Raynaud's reaction. I hadn't felt that much pain EVER. I was everywhere my sclero affected my skin. I used the topical application to calm it down. Saw my neurologist who changed my migrane med to Amitriptyline. Turns out Imitrex has a warning to not take it if you have Raynaud's. when I started taking it 8 years ago, I didn't have Raynaud's and when I did, I just thought I was cold. Imitrex works by targeting the nerves and blood vessels that cause the pain of migrane. Works great for the migrane but triggers the Raynaud's episodes. I would have your doctor review all meds you are taking (including over the counter) and see if there are any that trigger the pain reaction you are having. Send me a private message if you want to exchange names of topical pain relievers.
  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 the glove. Hopefully this will work.
  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 this holiday. I wasn't sure it would work. My 800 number reaction but it does! The batteries sound like they are struggling but we replaced them and discovered that's just the way they sound. There is a magnet in the bottom, it grabs onto the can, you push the button on top and walk away. Be careful though, it says there are no sharp edges but I think it's very sharp. No small children allowed. I am trying to cook more with my slow cooker. So, Susie, I liked your suggestion on how to clean up. I was using PAM spray before cooking. Has anyone tried the new plastic liners I saw advertized? You can line the slow cooker, then pile in the food, cook, then when done eating just pick up the plastic and toss. Sounds easy?!!! Laurie
  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 in the beginning but my hands no longer go numb at night. I have been wearing them for 3 months. Each month I try to sleep one night without them and have the numbness return so...Will continue for now (I joke with my husband that he now sleeps with the mummy from so many old movies) Since it's been cold, I have a need to keep gloves on always. This also protects my hands from bumps and scrapes. As a result I have trouble opening doors with knobs. I counted, we have 15 doors in my home....so my husband is looking for a bulk purchase and we will be changing those to levered knobs. Since I am having trouble with grip...I really can't cut/chop in the kitchen. Most tools available need you to cut some before you can use them so.. my family holds a "chopping ceremony" in the kitchen each weekend. We chop carrots, onions, break up lettuce, fruit, stew meat, etc. Each going in the ZIPPERED ziploc bag (I have trouble opening/closing the ones that require fingers) and into the fridge they go, already preped. I feel like a chef directing my crew! Well, I think that's a start! What are you all struggling with? Have you a solution? Laurie B)
  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 her. She is planning a semester abroad in Ireland, spring of 2008. We are planning to meet her when she completes her semester and have a holiday. It's an exciting trip to look forward to. My son is in his first year of high school. He tried to join the cross county running team but his body had other plans. He grew 4 inches in one month. Then, after a month off to strenghtened muscles that were causing knee problems, he grew a few more! He passed his dad in height so has been grinning for months! He expects to tryout for baseball (his love) but also wants to swim, golf and run track. Just to many sports during spring. He has been my greatest help thru this. Began by him opening my water bottles but now we have meal prep times together as I can't use a knife well. It's giving us conversation time in the middle of a hectic schedule. My husband has been extremely supportive thru this. He travels a few days a week, but takes over all the cooking when he is home. We had plans to retire on a sailboat in Caribbean after seeing our son off to college. We may need to speed that time table up now that we have this diagnosis. I have let him know he will need to be crew, because I can only be captain! He has taken this suggestion? with good humor. He takes the time to attend some of my doctor visits and will make time to go with me to UCLA when that appointment is confirmed. It's great to have an extra mind and pair of ears. Sometimes he hears things I just didn't get and asks about things I haven't thought of. I didn't realize, until reading this forum, how lucky I have been in my doctors. Although my reg. doc wanted to pat my on the head and continue the prednisone, I wanted to find/treat the problem. I just KNEW something was wrong. I called the insurance nursing advice line and they suggested I see a rheumatologist. the first one I chose assured me he would keep looking until we found what was wrong. He kept saying he BELIEVED me, when I described my symptoms. (they weren't always visible). After about a month of testing and weekly visits, When I dropped in one morning, without an appointment, he took the time to see me and immediately said (I know what you have!). Although not a happy result, I was relieved to have a direction to focus on. Well....guess I had a lot to get out. Have a Happy! Laurie
  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 5 mg and after a week the symptoms went away. After a month we raised the dosage to 7.5mg and I seem to be tolerating that level without the side effects. Everything is a balance. I did loose some ROM in my hands when we backed off the higher level of prednisone but am willing to work with that to eliminate the symptoms. I know it's completly exhausting to keep reviewing and bringing things up with the doctors but keep at it. I am the annal accountant so my doctor is getting used to me bringing my folder with lists and reminders. Even the small stuff like your mouth sore you should push to follow up on. Sometimes fixing the small stuff can ease your day. Keep at it! B) Laurie
  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 stairs (upstairs wasn't a problem - go figure) Arm was tougher because I couldn't do hand exercises, write, lift anything... doctor prescribed Relafin (NSAID) twice a day. I found exercises for "runner's knee" on the web. I don't know if from exercises or meds or both but pain in the knee and wrist/arm is better. It took about 2-3 weeks after I started the Relafin. Have a Happy! Laurie
  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 tomorrow to keep movement on feet/legs. For my hands, I do exercises at home 2-3 times per day. I expect these visits to morph to monthly at some point but my progression is so fast right now I want to be sure I am doing everything I can. Is anyone out there agressively treating skin involvement? With meds or alternatives? My rheumatologist says there is nothing to be done. I have a recommendation for an accupunturist from a interal med doctor(friend). Since this is covered by my insurance (surprise) I thought it would be worth trying. If anyone has experience I would love to hear from them. (the following my help someone) To perform my hand exercises, I need to be sure my hands are warm and skin is moisturized before starting. I used kitchen rubber gloves and do some dishes in the sink or just fill a sink with very warm/hot water and leave my hands in (with the gloves on) for a few minutes. Then use a lotion for massage. I am planning to purchase a parrafin spa (my hand therapist uses one each appointment). I really feels good (like going to a spa) and that's half the incentive. Since I have tightening on the forearm thru to my arm pit, I also stretch / extend my arms overhead to try to keep as much motion as possible. Is anyone else seeing a hand therapist? I have decided that aggressively addressing PT/OT is critical to quality of life with this diagnosis. My insurance actually covers 24 visits a year (not bad) but I may pay for more if I feel I need the PUSH to keep going. I am very lucky to have a supportive husband and kids. Sometimes the drive to do this on my own is tough to maintain. I expect it will get harder. Have a Happy! Laurie
  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 is the closed Sclero center to me. I tried to see Dr. Furst but was told he is no longer accepting patients. My rheumatologist is not very aggressive. Any info/contacts of specialists or support in Southern California/San Diego County would be helpful. I am currently on: Methotrexate Prednisone Folic Acid Relafin (seeing PT for hands, feet and legs weekly)