Helen

New Member

9 posts in this topic

Hi Everyone

 

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

 

Helen

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Hello Helen, you have definately come to the right place, for the support and info on all subjects regarding this desease. I'm so sorry this all hit you so fast. That's great your daughter is there to help you out. I definately think stress can trigger our symptoms to be worse. I also have a journal, it helps me a lot. I couldn't remember half the things, I have to do, without doing this. I have Crest Scleroderma, at least that is what most of my Rheumis believe. I've been to a few differant ones. You are so lucky to live in such a wonderfull place. My daughter went there on vacation a couple of years ago, absolutely loved it. She said she would live there in a minute, if she could. She is 28 and goes to university in Toronto, Canada. I have never been to Australia, but I would love to go one day. It's very hard to plan things with this desease. You never know from one day to the next how your going to feel. Lately I have found the body pain is getting worse. I am not on any pain medication at this time, but I think that is the next step. I take Lyrica 100 mg., three times a day plus Plaquenil 100 mg., twice a day and it's just not working anymore. Well, I have to run, but please feel free to email me anytime and please come back to this website, it's just a great place for us to hang out.

 

Hang in there,

 

Jackie S.

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Hi Helen,

 

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.

 

Warm wishes,

Heidi

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Hi Helen!

 

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.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Helen,
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.

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Helen,

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.

Nan

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Thank you everyone for your kind words of support. It helps to know you are not alone in this. Also thanks for the links. My nearest support group is 4 hours away so I think this site will be a better help for me. Yes, I am lucky to live where I do, My rheumatologist said it is the best climate for me.

 

Thanks again

 

Helen

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Hi Helen. Sorry I'm a little late in welcoming you to our group.

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.


Take Care,

 

Steve Dickson

ISN Assistant News Guide for RSS Newsfeed

International Scleroderma Network (ISN)

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Hi Steve

 

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.

 

Best Wishes

 

Helen

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