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Everything posted by Sweet

  1. Hello, I was strongly urged by my Scleroderma specialist to be vaccinated. I have already had both injections by Pfizer . No problems whatsoever. No reactions at all other than a tiny bit of sore arm for 2 days.
  2. Hi Marybeth, Although Im not sure it's related I too have sinus issues. It's a daily thing, and I get infections frequently . I'm currently on antibiotics. I've asked my specialist about it, and he assures me its unrelated. It may be worth your while to get a sinus CT. to see if there is anything causing this ie, infection, fungus etc.
  3. Well, this is a new thought, now I must run to the mirror and evaluate lol
  4. Very strange coincidence I'm sure. I am sorry to hear this however.
  5. Nice to see you are keeping a bit of humor. Have a Twinkie for me!
  6. No good advice from me, just deep sympathy . I don't sleep much either, and I feel your pain.
  7. Hey Janet, I get the feeling of being unreliable. I always have the best intentions, and frankly 95% of the time, my plans don't carry out. But thats OK. I used to be very hard on myself. Now I figure "it is what it is!" Nothing I can do about it, other than be kind to myself, and stay on the positive side as much as possible. Which is my natural inclination so that helps. I know there is no cure for me, but I won't waste the rest of my days, letting Scleroderma be my life. I have Scleroderma, I am NOT Scleroderma. I rarely talk to people about it because most don't u
  8. Angelique, You are so welcome, and I will look forward to hearing about your follow up. Have a wonderful weekend!
  9. Hi Janet, Reading your post made me very sad, because there is hope. My heart goes out to you. I have to say I'm disappointed in your doctor. Here is a link to a specialist in Australia, and I hope it's different than who you are seeing. If it's not, I would find another Rheumatologist. Scleroderma is rare, BUT symptoms vary from person to person. There is no blanket list of things you need to have or tests. I feel your doctor is doing you a disservice . Don't give up, see another doctor that you feel is listening to you and that you can communicate with well.
  10. Hello, Welcome to the forums. I'm sorry you are experiencing so many symptoms that are hard to explain. The nature of any autoimmune disease can vary so much from person to person. First of all it's good you are seeing a Rheumatologist. Often times, it becomes test after test to rule out different causes, and more often than not, we don't get solid answers. Easier said than done, but try to go with the flow, and let your doctor work through the process. It can actually take years to come to the proper diagnosis, if any at all. I know that's not encouraging, but it's the. nature of
  11. Hello, I'm so sorry to hear about your wife. Here is a link to Scleroderma Experts. There doesn't appear to be one in your area. But a good start is to find a Rheumatologist. I would suggest the U of WA.
  12. Hello my girl! Just wanted to give you a big hug for being the brave one you are!
  13. Hello my friend, Remember, one day at a time, otherwise everything can be so overwhelming. I had myself in the grave many times to find out it all wasn't so bad. Easier said than done, but don't worry until there is something to worry about. And even then I find out it wasn't as bad as it was in my mind. :)
  14. Its always frustrating when you feel you are not being heard. The relationship between you and your doctors are oh so important. I've been known to fire mine and move along to one I have better communication with. It's your life, your body and your dime. Remember they work for you. :)
  15. Hello Windnsea, I've been diagnosed 18 years. Plaquenil was the first thing my specialist put me on. He told me it would help with pain, fatigue, and has the ability to slow down progression, and in a lot of cases halt the disease at the level a patient is at that time. It has helped A LOT with my symptoms. Since I don't like taking meds at all, at one point early on I decided to cut my own dose. BIG mistake. Within a day or two I could barely move. My fatigue, and pain came back with a vengeance. I went back on my normal dose. In the past I've had a very busy schedule and on rare
  16. Oh wow good article Shelley thank you!
  17. Hi Cathy, I'm sorry to hear of the chest discomfort you are having. , it could be so many different things. The body keeps us wondering doesn't it? It could be costochondritis. Check the link and see if that sounds like what you are experiencing. It could also be a simple matter of your back being misaligned, or tight muscles. Do you do any stretching? One thing I notice is due to my pain, I can contract all into myself. I have to remember several times a day to relax, stretch back my shoulders. I lay on the floor and do other stretches which can help.
  18. I would take a look around at environmental type things. Anything new you're eating, cosmetics, hairspray, chemicals, or do you live in an area of farming land and orchards that may be spraying? I grew up in the city, and later on moved to a rural area. I have NEVER had sinus issues in my life, but do now and no I don't think it has a thing to do with my Scleroderma. But when I moved here it seems everyone has "allergies". I inquired about it and one doctor told me "If you live here long enough you'll have problems too" (because of orchards and all the blooms, chemicals that go along with). As
  19. Hi Edoyle, I'm so very sorry to hear of your daughters possible diagnosis due to her lab work. As Jo mentioned, it doesn't necessarily mean she will develop CREST. I'm super happy to hear however that you are seeing a doctor who specializes in this! Please do keep us posted, and much love and support to you.
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