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Everything posted by houckrn99

  1. houckrn99

    Droopy eyelids

    Hello all- I searched "puffy eyelids" and this thread came up. I am hanging with a probable early scleroderma diagnosis that cannot be confirmed because my skin doesn't seem to be affected yet. I have noticed that along with puffy fingers, hands, and feet, now I'm also finding that my eyelids get puffy and sort of burn. They look like I've been crying the night before and my eyes feel a little hard to keep open fully. I was just curious if anyone else had experienced this. Thanks for sharing and caring for others!
  2. houckrn99

    Be Careful with disposable heat packets

    Kathy- This is such an important point you bring up! The disposable hot pads are kind of unpredictable. Most physicians and physical therapists would recommend a controlled heat source (well functioning heating pad, hot water bottle, warm bath, parafin wax treatment) which is wrapped in a protective barrier so the heating element is not directly against the skin. Also it is usually recommended to apply heat for no more than 20 minutes (or up to 30 depending on who you ask) and if you have sensory issues to have someone else check the temperature before use. The warmth can help soften tight tendons or spasmed muscles and reduce inflammation but it can also cause damage if one is not careful. Thank you for bringing this potential danger to everyone's attention!
  3. Amanda- For now, time will only tell. I have read of Scleroderma sine scleroderma and sometimes wondered if that may be my final diagnosis. I actually saw a scleroderma expert up at University of Illinois Chicago who was very supportive but not ready to give a diagnosis without skin involvement. She told me to watch for new symptoms and return to see her if anything came up or worsened. When I saw my current Rhuematologist I really wasn't expecting the Scl-70 to be positive again since it had been negative for awhile. I just wanted some tips on how to deal with my worsening "osteoarthritis"! LOL Strangely enough it was both shocking and comforting to find the Scl-70 was very high this time. My current doctor is now watching me closely for progression and I am much more at ease with my "probable" diagnosis. If I develop sclerodactyly, it will be confirmed. If I develop any new problems indicative of internal organ SSc, it will be confirmed. Until then I'll just live for today. Thank you all so much for your support!
  4. houckrn99

    Stress fracture

    Hi Nan, I was wondering how your foot has healed. I fractured my fifth metatarsal and cuboid bone in a fall January 2009. It wasn't recognized for 6weeks since it didn't show on the x-ray (just on MRI later). It healed pretty well after about 6months or so but lately it's been hurting off and on. No new bruising or swelling so it's not re broken but I wonder if it just didn't heal right because of the scleroderma. I was having all sorts of problems for a year or so before the fall but I was just diagnosed as early scleroderma recently. I just wonder if the scleroderma delays bone healing or keeps it from healing right and so I wondered how you're doing. I hope you are well and will be thinking of you. Heather
  5. Such an awful place to be. I'm still trying to find my way to a clear diagnosis. I've had about 15yrs of joint aching, creaking, & popping, 6 years of swollen hands or feet off & on, 9 years of fatigue attributed to "motherhood", 6 years of cold intolerance, 4yrs of "reactive airway disease due to allergens", and such radiating arm pain & sciatica that I actually left working as an ICU nurse (which I loved!) to work in an office since it was less taxing. My first positive ANA and Scl-70 was about 6 or 7yrs ago and it has gone up & down ever since (usually up when my symptoms are worse). I finally went to see a rheumatologist last fall (my third rheumatology consult) at the urging of my co-worker who saw me struggling more with the joint problems. This time it seems the other symptoms along with the very high Scl-70 antibody test have about overcome the fact that I don't have any appreciable skin hardening. So now I have a "maybe" diagnosis of Scleroderma but at least I have a doctor that is taking my symptoms seriously enough to follow me and someone I can turn to if new problems arise prior to my next appt. It's so hard but my advice is to be evaluated by a scleroderma expert, seek support from faithful friends, take good care of yourself, exercise to the extent your body allows, and keep on living. A diagnosis is often an evolving thing and I hope you find one soon! Best wishes! Heather
  6. houckrn99

    My poor oesophagus!

    So sorry to hear that your doctor's not listening about the PPI's. As far as the throat candida, have you every tried the Nystatin swish & swallow? It's a liquid medication that directly treats the layer of candida in the mouth/throat. Sometimes doctors prescribe it in a mouthwash form that also contains liquid lidocaine for pain/discomfort although this is usually a gargle and spit to avoid numbing your throat too much. Best wishes! Heather