Newly diagnosed

Hi. I'm new here. I developed Raynauds in January this year followed quickly by swollen and tightening skin on my hands. I think my Dr thought I had Lupus. I had problems with my knees too. Bloods including ANA were done but I was referred to Rheumatolgy at that initial appoint. I saw the specialist 2 months later and was told that I had scleroderma which I had never heard of. My Dr was really surprised by the diagnosis because I hadn't the typical symptoms.

Since then, I have have developed itchy skin, aching feet, my wrists and ankles have lost some flexibility. I took antihistamine for the itching but ended up with a really dry mouth - double whammy of the condition and use of antihistamines so trying to put up with the skin irritation.

I am protecting my knees and general wellbeing through exercise - I will be devastated if this condition stops me exercising. Whilst I am 60, I am quite fit for my age and it's just what I do and love.

I don't really understand Crest, limited scleroderma etc and don't really know what to expect or actually what I have. I think my Dr and I were so shocked by the diagnosis, we didn't really discuss it. I have decided to take low dose anti-anxiety meds to keep calm!

I would be very grateful if a member here could give me a little bit of advice as to what I have and where it might go. My chest X-ray and lung function tests were normal in May?

Thank you very much.

15 Replies

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  • Hello Jen3131, Every situation with scleroderma I'd different so affects people in different ways but glad to hear your previous test results were clear which is very positive.

    Im 44 years old and was diagnosed with pulmonary hypertension just before Christmas which was caused by scleroderma which I did not know I had until that time too (I'd had Raynauds for many years though not many regular problems but rather spasmodic) so a double whammy for me with two rare conditions from out of nowhere in 1 hit.

    I've experienced some of the things you have eg needing antihistamine, changes in ankles and wrists, dry mouth from medication, but as I say everyone's experience with this illness differs as there does not seem to be set patterns.

    I'd ask your rheumatologist or GP for some more info on scleroderma. I was given a very informative booklet issued by Arthritis Research uk Tel 03007900400 arthritisresearchuk.org. Definitely don't use google searches as some info there can freak you out and not relevant to your personal situation.

    Hope all goes well for you and do let me know how you get on.

  • Thank you - that's really reassuring. Google searches had freaked me out to be honest hence why I joined this online group.

    It might sound daft but I work for Drs and it's sort of given me a fear of being a hyperchondriac nuisance because the symptoms are so weird. Currently my left shoulder hurts to the point I have to gently stretch it out every morning to release whatever is antagonising it. I know scleroderma can affect arm movements but I seem to have a different restricted movement to what I knew about so don't know whether or not I have pulled it and need Physio or if it's the scleroderma?? I am sure most people would just go and see their GP!

    I will see the rheumatologist in December - hopefully I might have got to grips with it.

    Thanks again

    Jen

  • Good luck with everything Jen and take care of yourself.

    Just wondered which Rheumatologist/ hospital you were going to ? I go to see Prof Herrick at the National Scleroderma centre at Salford Royal.

  • I will be under the consultant at The Royal Derby hospital.

    Thanks again for the support

  • Good luck with everything and let me know how you get on x

  • Jen. Have you tried using E45 Itch Relief Cream. It works for me on occasions. Thank heavens your doctor referred you. I went for a good (actually bad) 10 - 15 years of mystery illnesses before insisting that I have an ANA blood test having listened to a Medical Matters podcast. I was diagnosed with the same broad spectrum as yourself. Just keep on with your pursuits and make sure to allow recovery time if you feel fatigue or joint pain.

  • No, I haven't tried the cream - that's a good idea thanks.

  • For itchy skin I use acqueous cream on my arms, my feet and my face.

  • I have started using aqueous plus non soap shower lotion - I guess all these little changes help. Thanks

  • I had Dermol500 cream suggested by the specialist nurse at Salford Royal as other products I had previously tried like E45, Aveena I just could not use on my legs and its something which they use for dermatology patients there. Dermol500 is now a staple for my daily moisturising routine and soap substitute and I have it on prescription.

  • Hi Jen3131,

    Welcome to this group. My Scleroderma sounds almost like yours. My hands sarted swelling, the fingers contracture, plus the tightening and hardening up to my elbows. The itching! OMG that's the worse. I didn't use antihistamines I use Eucrine dry skin cream, not the lotion. I used the thick creamy kind. That helped immensely. I would use it every single day. Now I use the lotion for everday and the thick stuff once a week in the summer, 2xs in the winter. Hope you find relief, also find a support group that you can go to. I also received good information from the Scleroderma Foundation website at scleroderma.org good luck on your journey.

  • Hello Jen,

    I'm sorry to hear you have had this nasty surprise. The disease takes so many different forms for different people. It took many years to get treatment in place for me, so I suffered with ulceration and other symptoms. My hands are now twisted. My leg and arm muscles began to give in last year, and I was losing weight. The hospital ran a lot of tests and now I have a low doses of steroid (prednisolone) and immunosupressant (methotrexate) and a years later those problems have been stemmed and I feel so much better. It is good you have been given a diagnosis early on, so hopefully the rot will stop much earlier than in my case. You can now get some advisory literature from the Scleroderma Society and give it to your doctor as a way of educating them so they can support you better.

  • I had done some research before my appointment and read many stories similar to yours - people just don't seem to get a diagnosis?? I think that was part of my surprise - that I was given a definite diagnosis on my first appointment. It is interesting, although it didn't matter because I had already been referred, that the doctor reviewing blood results at my surgery didn't recognise that my ANA was wildly out of range. He told they were normal!

    Thanks for your reply - it has helped to speak with others with the condition.

  • Hi Jen I too was diagnosed straight away from the first appointment with my specialist and also found it a very overwhelming confusing time never heard of scleroderma before but looking back on lots of health problems over my 48years i had soldiered through its quite obvious there was a underlined issue going on! It takes time to adjust you have to listen to your body more and rest when it tells you too! Scleroderma well all I can say she's a bitch everyday holds a new challenge for me, but don't let her beat you👍🏼 good luck ❤️

  • Hi Jen,

    I was diagnosed with Myositis with a scleroderma (systemic sclerosis) overlap 2 years ago after 8 weeks in hospital, I am now 63 and was quite fit when diagnosed so it was a very big shock to get the news. It took hold of me very quickly.

    I saw many specialists and was suffering badly with itching, a skin specialist prescribed CETRABEN dermatological cream which I get on prescription ( pump action dispenser 500g ). It really helps. I have also found that when the itching starts in the evening I have a shower and that helps, so at the moment I am showering morning and night.

    Good luck, this is a great site for information and people are so helpful

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