Sydney

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Everything posted by Sydney

  1. I have been a registered nurse for 25 years & about the same amount of time that I have had sclero. I work in home health care. I also live in Florida (not far from Stetson, Gulfport, FL). Sydney
  2. Jen, I know exactly what you are going through! I have extensive telangiactasias. In fact many, many years ago at a University rheumatologist clinic the rheumatologist said he had never seen them so extensive (face, hands, legs, back .... basically all over). I have been getting laser treatments for the last 12-13 years. Not to scare you but be sure you go to a good laser specialist or you could get scaring (depending on the laser used). I have now tried the IPL (intense pulsed light) treatment which is not as invasive as the laser, feels the same, doesn't leave a purple bruise to dissipate and has similar results. It requires more treatments but has no downtime. I get lasered from 3 times a year to at least yearly to keep up with new and resistant ones. This probably sounds frequent but I not only shoot my face but my chest and hands. As you said, people point out what we already know we have. Hang in there ....... Sydney.
  3. Peanut, I also get frequent ulcerations on my fingers that are very painful! I have not really had anything that helps with that type of pain. In fact, I don't think people understand how painful it can be. Viagra, Revatio (same ingrediant as Viagra) and Cialis are both medications that increase peripheral circulation. Of course, they can be costly. I take Revatio and it has seemed to help decrease the occurance of the ulcers. Lately, when I think I am getting an infection in a finger or knuckle, I put neosporin & a bandaid over the site (even before it opens) and that has seemed to help decrease its severity (sounds really simple). Sidney
  4. Barbs, You are so correct ..... there are actually many general practitioner's who don't know about people with our problems. They do not understand how imperative it is for us to be started on proper antibiotics ASAP. For me, it seems like it takes longer than the average person to recover from anything. I can remember showing a general practitioner an infection that was brewing in my finger when she told me that it was not an infection and that I did not need antibiotics. Three days later, indeed, I had a full blown infection. We know our bodies and I wish most general practitioner could understand that concept!(I'm even a nurse and she didn't take my word). Anyway ...... I wish you well & go to the hospital where you'll be treated. Take care ..... Sidney
  5. I absolutely love the heat .... good thing I live in Florida! My Raynauds is very bad so the heat is great for that & helps keep ulcerations on my fingers down. My fingers swell as does everybody in the heat vs. the cold but I did notice when I was is a remissed state my fingers were alot smaller than when the disease is more active. (I actually have wedding bands for both occasions; a size 5 3/4 for the remisssion and a 7- 7 1/2 for the active state). Sydney
  6. Kiwi, Are the uncers infected? Are you on antibiotics, tracleer or viagra? Sydney
  7. Thanks for the welcome! I guess I have been very fortunate over the years. I also live in Florida which helps with the Raynauds. I am so miserable in our mild winters that I can't even imagine living up north. Sydney
  8. Hello, I am new to this site but have had CREST (limited scleroderma for a very long time). I was diagnosed 24 years ago at the age of 21. I would say that I have done well over the years. My Raynauds (affects hands and feet) is bad but I try to keep as warm as possible. Of course, I get the infections that are slow to heal on my hands and have had a few very bad ones on my elbows. But for me, the worst thing has been the telangietasia's which are extensive! I have been having them lasered (on visible areas ) for approx. 13 years on and off. Anyway ..... it's nice to meet everybody in cyber space. Sydney (in Florida)