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Scleroderma & Raynaud's UK (SRUK)

10,836 members • 5,410 posts

Systemic sclerosis posts

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Early signs of skin involvement?

Hi all, recently diagnosed in April 2022 with diffuse systemic sclerosis. Raynauds since 2020, Telangiectasias and scl70 +ve. No organ involvement at baseline....

Hi all, recently diagnosed in April 2022 with diffuse systemic sclerosis. Raynau...

•1 year ago

Can anyone please interpret blood results please for me? 🙏🏼

hi everyone, I recently have been diagnosed with morphoea, it has formed in a lesion I’ve had a while which is lichen sclerosis so it is in the same lesion...

hi everyone, I recently have been diagnosed with morphoea, it has formed in a ...

•2 years ago

Whether to push for a diagnosis

Hello All, my first post and I'm afraid it will be a long one but perhaps someone has had similar experiences and can help. I am male and 53 years old. I’ve...

Hello All, my first post and I'm afraid it will be a long one but perhaps someon...

•2 years ago

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Electric wheelchair

I am a patient of systemic sclerosis. My disease has made me disabled; it is mainly affecting my leg and feet; I am struggling with walking, so I am thinking...

I am a patient of systemic sclerosis. My disease has made me disabled; it is mai...

•2 years ago

Sclerodactyly treatment suggestions?

Sclerodactyly diagnosis. I was diagnosed with systemic sclerosis in September after suffering from Reynauds disease for many years and carpal tunnel syndrome...

Sclerodactyly diagnosis. I was diagnosed with systemic sclerosis in September af...

•3 years ago

Systemic sclerosis

I have limited cutaneous systemic sclerosis, but my doctor told me that my condition is overlapping and would progress to diffuse systemic sclerosis. My...

I have limited cutaneous systemic sclerosis, but my doctor told me that my condi...

•3 years ago

Systemic sclerosis and vein

Good day, everyone. I'm curious whether anyone with scleroderma or systemic sclerosis has trouble opening veins for IV drugs?, And if anyone has established a...

Good day, everyone. I'm curious whether anyone with scleroderma or systemic scle...

•3 years ago

Is it worth doing 'internal stretch' or muscle exercises?

Hi - a strange question perhaps. When diagnosed with Limited Systemic Scleroderma a year ago, I was sent info sheets with hand stretching/ flexing exercises...

Hi - a strange question perhaps. When diagnosed with Limited Systemic Scleroderm...

•3 years ago

Help with pain relief after oxford vaccine

I have systematic scleroderma and Raynauds I had my first covid vaccine 8 weeks ago and the day after I was wracked with pain ( light I’d been in a boxing...

I have systematic scleroderma and Raynauds I had my first covid vaccine 8 weeks ...

•3 years ago

Thoughts Please

Hi, first time poster here. Any thoughts on the photo please? All bloods normal and negative ana. Huge fatigue and non specific aches along with several minor...

Hi, first time poster here. Any thoughts on the photo please? All bloods normal ...

•3 years ago

Has anyone here tried that antibiotic protocol ap minocycline treatment ?

Has anyone here tried that antibiotic protocol ap minocycline treatment ? Another forum has a few people who talk about it.

Has anyone here tried that antibiotic protocol ap minocycline treatment ? Anoth...

•3 years ago

Does anyone else live their life according to 'one day my scleroderma could get worse'? (I'll elaborate inside)

I was diagnosed when I was fifteen, in 2013. I had a bunch of GCSEs to revise for, and a methotrexate injection to look forward to every week. I was in pain,...

I was diagnosed when I was fifteen, in 2013. I had a bunch of GCSEs to revise fo...

thepictrofdoryingrey

•3 years ago

Intro

I am new here, i am interested in sharing information about scleroderma and ways to cope with it, i was diagnosed almost 3 years ago but have been trying to...

I am new here, i am interested in sharing information about scleroderma and ways...

•4 years ago

Secondary conditions

Hi all. Hope you are all as well as can be :) I have systemic sclerosis with raynaurds, diagnosed in dec 2017. I have just been diagnosed with addison's...

Hi all. Hope you are all as well as can be :) I have systemic sclerosis with ra...

•5 years ago

Swollen hands

I have recently been diagnosed with systemic sclerosis. I have had Raynaud's for many years. I find that my hands are almost always swollen. Is this...

I have recently been diagnosed with systemic sclerosis. I have had Raynaud's fo...

•5 years ago

Totally numb hands with pins and needles.

Anyone else get this >>> my hands feel like when you get a dead leg with that weird numbness and pins and needles. It's not painful but very disconcerting. If...

Anyone else get this >>> my hands feel like when you get a dead leg with that we...

•6 years ago

Newly diagnosed with systemic scleroderma

Hi everyone. I am 25 years old and was officially diagnosed with diffuse systemic scleroderma in June 2018. I have poor lung function tests and will be...

Hi everyone. I am 25 years old and was officially diagnosed with diffuse systemi...

•6 years ago

Joint soreness and stiffness

I have an ache and stiffness in both my hips, left knee and really sore ankles. I abandoned my 10 mile run yesterday after only 4 miles. Is this the normal...

I have an ache and stiffness in both my hips, left knee and really sore ankles....

•6 years ago

Kenalog and Hydroxychloroquine.

I'm new here. I was diagnosed with Systemic Sclerosis eventually 3 years ago after having had the symptoms for over 10 years. Started on Kenalog injections...

I'm new here. I was diagnosed with Systemic Sclerosis eventually 3 years ago af...

•6 years ago

Systemic sclerosis and memory/confusion..?

Hi there, My dad has systemic sclerosis/scleroderma. He’s in quite a bad way with his elbows and hands at the moment. Sleeps badly coz of pain, has to change...

Hi there, My dad has systemic sclerosis/scleroderma. He’s in quite a bad way wit...

•6 years ago

Systemic sclerosis and exercise

How to you guys cope with exercise? I am training for London Marathon and struggling so much. I did 5 half marathons last year before I was diagnosed with...

How to you guys cope with exercise? I am training for London Marathon and strugg...

•6 years ago

Shin pain

Does anyone else with ssc have pains in their shin bone ? I have also recently developed restless leg in the same leg as the pain is ?

Does anyone else with ssc have pains in their shin bone ? I have also recently d...

•6 years ago

F

•6 years ago

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Been away from here for a while, but need support

Things are really tough for me atm, I'm in so much pain physically that it's effected my mental well-being 😟 to top it off my Dad just passed away so I'm here...

Things are really tough for me atm, I'm in so much pain physically that it's eff...

•6 years ago

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