28 and Recently diagnosed with systemic sclerosis... scared and confused

I've just been diagnosed with systemic sclerosis (amongst other things).

After quizzing my doctor he told me that it wouldn't be fatal just extremely unpleasant at times... then I made the mistake of going on the internet to research it more and now I'm absoloutly terrified of what's going to happen!

I'm completely confused about what I've been told and what I've read as they contradict each other

Are there any positive stories to keep me open minded and free from panicking about the end of (my) world?

15 Replies

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  • Don't believe everything you read on the Internet, there are a lot of horror stories out there. This is a great forum and the information provided is good and there are so many helpful people.

    I have had systemic sclerosis for 2 years and it was difficult for doctors to diagnose. My condition has improved thanks to the drugs I take, I don't overdo things and rest when needed.

    You just have to pace yourself and keep yourself busy so you don't think about things and get monitored regularly by the professionals!

    Good Luck Lauren

  • There is a wealth of factual information on sruk.co.uk. There is also the helpline 0800 311 2756 who will point you to balanced information. Remember though everyone is different it is your specialist consultant that can really answer your questions . It is useful to write questions down when you visit and make a note of the answers because at first things seem a little overwhelming.

    There may also be a supprt group near you and you can check this out on the sruk website too.

  • Your average GP will not have as much information about SSc as the rheumatologist you should be referred too by your GP. All you want to find out about this is from this source. Again, we are all different and this disease can and does affect us in different ways. My lungs are damaged as I have this affecting my internal organs. I get monitored on an ongoing basis for lung capacity and heart and kidneys to make sure all is well. Good luck going forward.

  • Get true!. My lungs were damaged by tb in 1950s and my ears and body by streptomycin injections.discovered they ,powers that were knew about ear poisoning and carried on. Records destroyed in 60s.t and care

  • Sorry that should have read... VERY TRUE! DAM TABLET. X

  • Hi Lauren, I'm sorry you are having to deal with this. There are two main types of systemic sclerosis, limited and diffuse. Do you know which one you have? What are your related symptoms at this point? Limited SSc tends to have a somewhat less aggressive disease course and better prognosis, while diffuse SSc has more extensive skin involvement and worse prognosis. Both forms of the disease affect internal organs to varying extents. However, this disease is highly individual in its expression, with some people having a mild path and normal life expectancy, and others with a more challenging outlook.

    The single most important thing you need to do, if you haven't already, is to get a referral to a scleroderma specialist. Make this a top priority. A general rheumatologist or primary care physician simply will not have the experience necessary to properly diagnose and treat this very complex, rare disease. Most scleroderma specialists are rheumatologists, but few rheumatologists are scleroderma specialists.

    The next thing you need to do is find out what your test results say. What antibody did you test positive for? What is your antibody titer? Scleroderma associated antibodies correlate with different disease profiles and risk factors, so it is important to know this early in the process. You also need to have baseline testing done - echocardiogram and pulmonary function tests at a minimum, with annual repeat tests if normal. This is essential in order to catch and treat internal organ involvement early, and your doctor should have ordered these when he diagnosed you.

    There are some excellent online articles and resources and you should begin to educate yourself about your disease and learn to be your own advocate. Get in the habit of getting copies of all test results and visit notes and start a file. I posted a number of links to high quality information elsewhere in this community and will try to find that comment and add it to this thread. Best of luck to you and please keep us posted on your progress.

  • Hi , what wonderful thought out reply. I would be interested in the links you mention too. Well done you☺

  • You can find the resources under the post linked to below. 😊

  • If you go to an older post "Help feeling very lost" you can find my comments in the thread with numerous links that I think you'll find helpful. I tried to copy/paste here but the links wouldn't stay active.

    healthunlocked.com/sruk/pos...

  • Hello Lauren

    There are a lot of really great replies below. Firstly do not panic and worry. I have only been told myself about three years. I also have bad Raynauds too.

    I have the medication which helps a lot with the pain condition. This is a great website to ask people.

    You will start to feel really tired, but make the effort to exercise walking etc., Even if it slowly. Keep warm in this cold weather.

    Start keeping a diary on how you are feeling, because everyday different things happen. A different ache and pain. The tiredness and really how you are feeling. Also get in the habit of keeping your letters and appointment details in a folder in date order. They may come in handy one day.

    I can understand how upsetting it is.

    Liz

  • Thank you for the advice, I've read through everything now and started to look into how I can deal with it, so feeling a bit more positive ☺️!

  • Hi, we are all thinking of you,im sure. We all would have differing symptoms, try to be calm, not easy ,i know. Yes , unpleasant at times,but we cope and so will you. All scared, look after yourself.☺

  • Pace yourself ,if you can't do things,dont let it on top of you.i did, it's not worth it. X

  • Some great replies already but definitely don't use Dr Google. Everyone's situation is different with scleroderma but you are not on your own and it's normal to feel scared. Life does go on, just take things as they come and be kind to yourself. X

  • I cant add much to the good advice you have been given. I panicked when I was first diagnosed 2 years ago, and just like you, spent hours googling and scared myself silly. Then I went to a scleroderma conference in Bath where I got some really good information and managed to get my GP to refer me to Professor Denton at the Royal Free hospital in London. I go there every 6 months and also see a rheumatologist at my local hospital. I feel I am getting the best care possible which is reassuring. I hate taking all the medication but understand why I am taking it and things seem to be in control. I am still managing to work and I find the best thing for me is to keep as active as possible without overdoing it. I go to Yoga, I find the stretching and relaxation helps. I also enjoy swimming and the pool at the gym where I go is warm enough for me. Try not to worry too much and make sure you find a scleroderma specialist. When I had my first appointment t the Royal Free I documented all my symptoms and had list of questions I wanted to ask.

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