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#1 Shona Arthur

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Posted 22 July 2009 - 04:02 AM

Hi,
My name is Shona and I was diagnosed with systemic scleroderma in January this year. I have had all the heart, lung and digestive system tests, which the heart and lungs are ok but there is some damage to digestive system. I am having big problems with the lower digestive system and am going into hospital on 29th July for a small operation to help relieve the pain and heal tears. Is any one else suffering this way. Also I have quite bad raynauds and am taking 2 types of bloodpressure tablets, felodipine and lorstartan potassium, is anyone else on these and do you have any side effects.

I am 31 and have three young children, alot of the time I am exhausted and tend to go to bed when the children go. My poor husband is used to this now but we are both worried what it will be like as I get older.

Any advice would be greatly appreciated.

Shona

#2 Amanda Thorpe

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Posted 22 July 2009 - 11:07 AM

Hello Shona

Welcome to the forum although I'm sorry you're having the issues you are. This is a great place to get support and accurate information about scleroderma.

We have a lot of information on this site about raynaud's including treatmets that you may find helpful. Bowel issues are common in scleroderma and again we have information regarding bowel dysfunction that may be helpful.

Although I do have gastro intestinal involvement I don't have it to the extent you do, no doubt others will chime in who do. The fatigue is one of the most challenging symptoms to live with because there's no real way to alleviate it and you can't work through it. You are right to sleep when you need too as there's not a lot else you can do!

I think it's quite natural to wonder how your disease will progress and how you will manage it, the difficulty is that no one knows the answer to this. I have found that people with scleroderma, particularly on this site, are tenacious, determined, adaptable and prepared to give this disease a good fight and I've no doubt that you are the same even if you don't feel it. You will be surprised at what you can achieve once you have adjusted to having scleroderma. I am into my second year and back in the first year I never thought I'd do anything more that sit on the couch in my dressing gown...wrong!!

Please keep posting and take care.
Amanda Thorpe
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