Posted 15 December 2006 - 08:20 PM
Have been visiting this forum since beng diagnosis with Diffuse Scleroderma and Raynauds in August 06. Having never heard of this disease it has helped me a lot.
I started with Carpel Tunnel symptoms in Feb and it has progressed so fast that I had to give up my office job in September and move in with my daughter as I can no longer live alone. The Sclero is affecting my arms, hands (very stiff and curling up) legs,feet,face and chest. My Rheumotologist has put me on Prednisone 50mg for a month, now on 40mg, and Imuran 100mg hoping to slow it down a bit. It has stopped most of the pain (stabbing pains in arms and legs) now I just get pains in my shins sometimes. The only side effects of the Prednisone is swelling in my face. I am also on Ramace 5mg for blood pressure, Somac 40mg for reflux, Seratide puffer for my breathing and an anti-histamine for itching.
My worst times are when I have fatigue attacks which last for about 10 days. I can barely get off the bed to do basic tasks. I am keeping a journal to see if anything triggers them. Does anyone find that they might be stress related?
I live in Queensland, Australia which is a hot humid climate, so the Raynaud's is not a huge problem as long as I don't stay in air-conditioning too long. I wear heat bands on my wrists when I know I will be in air-con and they really help.
Is anyone else from Australia? We don't seem to have the support networks here that you have in America.
Well, thanks for listening to me
Posted 16 December 2006 - 07:50 AM
Hang in there,
Posted 16 December 2006 - 07:55 AM
Welcome to the forums! I am so glad you found us, but sorry it is because you have been diagnosed with scleroderma. I am glad you have your daughter to help you. I am not sure where in Australia you live, but here is a list of support groups in Australia. I hope you find this information helpful. I also hope you will come here and post often and let us know how you are doing.
Posted 16 December 2006 - 08:12 AM
I want to welcome you to sclero forums. We are so glad you joined! You will find an abundance of support here. I see that Heidi already gave you a link that would help you find support closer to home as well.
I believe we have a few members here from NZ, so they are close neighbors anyway!
I'm sure sorry to hear about how fast your progression is of this disease. Please ask questions anytime you have them and we'll certainly try to support you.
Posted 16 December 2006 - 08:17 AM
Welcome to the forum! I'm so glad that you have found this site helpful and have decided to join us. The people here are great - very supportive and helpful. I think we all have realized how valuable personal experiences are. I'm so sorry that you have bee diagnosed with dSSc. Hopefully the meds you are on will continue to help. I'm glad to hear they've help with the pain. I think the fatigue is the hardest part, although I'm surprised the prednisone hasn't help with that. It sure knocked out my fatigue in the beginning, but then we all react differently to different drugs. I do hope you find a solution to the fatigue.
You asked about stress. Stress can cause so many problems with our bodies including bringing on unwanted illnesses and physical problems. On the ISN Stress page I found an article you might find interesting:
Social Stress May Trigger Problems in the Immune System.
Again, welcome! Hope to hear more about you.
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Posted 16 December 2006 - 08:32 AM
Welcome! I am so sorry to hear of how fast yours is progressing. I am somewhat new to this sight too. I am waiting to go to Johns Hopkins Hospital to see if they can figure out what is wrong with me. The fatigue is awful. I also have Raynaud's and lesions in my stomach that go along with Scleroderma. My rheumatologist also said that my nailfold capillaries give the appearance that an autoimmune disease is present. My bloodwork from Feb. came back within normal range. Who knows?
I have a friend that lived in Australia for a bit and loved it. I will think good thoughts for you and I am so sorry you are having to go through all that you are going through at this time.
Posted 16 December 2006 - 09:39 PM
Posted 17 December 2006 - 12:46 AM
You mentioned stress as a possible trigger for a flare-up. I definitely found the more stressed about something I was, the worst it made my symptoms feel. for instance, I'd get a bit stressed at work, also I'd stress about going to work, but since retiring early, I seem to be at a manageable level with this disease (Diffuse SD). So I would recommend learning techniques to help you relax, to help with fighting this.
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Posted 17 December 2006 - 07:56 PM
Thanks for your reply. I have been thinking about getting some relaxation CDs. I am also trying not to stress about things I can't control. Before I got this disease I was a very laid back person so the stress took me by surprise. Now that I know what it can do to me I think I will be able to control it better.