Newly diagnosed with limited systemic sclerosis

[Morepasta]

I was diagnosed in September 2023. I’m currently on prednisolone and hydroxycholoquine. I’ve struggled with fatigue for close to 2 years now and it has been the most debilitating symptom so far. In the past few weeks my hands have become very achey, they were slightly achey before but now it’s a lot more noticeable and uncomfortable. I don’t have raynauds. I was 26 when I was diagnosed and im 27 now. I haven’t been given much information about scleroderma and im not sure what to expect. I’ve read that the first 5 years are when the disease is progressing more rapidly. It seems like it’s different for everyone and no one has the same experience.

[ruablue]

hi Morepasta (great name)

Thank you for sharing your journey so far - I can totally appreciate where you are and it is understandable that it is all a bit scary and overwhelming. I too have a diagnosis with both myositis and scleroderma, (diagnosed early 2023). The fatigue is tough to manage but it’s important to listen to your body.

With regards to the hands, I’ve had very similar / began with mild aches but now much more painful (especially in the mornings) - my rheumatologist is reviewing next month but my understanding is this is very typical for the disease. I’ve been doing daily stretches in the hands which seem to help ease the aches.

You are right in that everyone experiences these diseases differently. This forum is absolutely wonderful for thoughtful support and guidance - so please do lean on us as you go through your journey- I have found this an incredibly comforting community that have helped me feel less alone in all of this.

Wishing you well

[Morepasta in reply to ruablue]

Thank you for this reply, it’s been difficult to find anyone that has experience with this disease. My fingers and hands I’ve been worried about the most as a dermatologist said I had signs of sclerodactyly. At the moment I’m not looking too much into the future at the moment and just keeping track of the new symptoms that arise. Most recently it’s been severe itching everywhere. I’m seeing a rheumatologist in February so hopefully I’ll get some more information then.

It’s helpful to know that there is a community here that understands the struggles and I will definitely be around asking questions in the future.

[LadyTrundle in reply to Morepasta]

For the itching, they say ‘moisturise, moisturise, moisturise’. And preferably with ones that don’t have scent etc that would irritate the skin. In use Aveeno body moisture, the dark blue top.

And the nurse last week said to really massage, moisturise and stretch the hands as often as you can. She also said to use a paragon bath on hands and feet 3 times a week. Still haven’t got myself organised to do it once yet!!

[Clangerscat]

sclerodactyly is a fairly common symptom of sclerosis it was what led to my diagnosis. Ruablue is right you need to massage and stretch your hands. There are exercises for the hands by a physiotherapist who specialises in scleroderma on YouTube, just search hand exercises for scleroderma. And don’t forget this disease is manageable, don’t worry about your future too much. Take care.🤗

[elprof57]

Dear MorepastaI am sorry to hear that you have Scleroderma at such a young age. I am a 66 year old male and have had Systemic Sclerosis for 12 years . Fortunately I have it in a very, very mild form.The first five years are critical insofar as they can give an insight as to whether the disease can give rise to serious health issues regarding various internal organs. It is a disease which affects every one in different ways. Scleroderma does not necessarily develop rapidly in the course of the first 5 years. It may and may not. In the first 5 years I took specific blood and urine tests, ECG, and lung testing twice anually.Now once every 12 to 18 months. Like many Scleroderma sufferers, I lead a normal life. Though having a mild form, I still am subject to the typical symptoms of the disease. For example itching. In my case it just comes and goes. All the best.