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Systemic sclerosis
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Anyone applied for/ been awarded PIP?
I’m wondering whether anyone on here has been successful in applying for PIP due to the problems caused by
Systemic
sclerosis
and if so what points/ areas it was awarded on. Unfortunately since my diagnosis last year I’m increasingly struggling.
I’m wondering whether anyone on here has been successful in applying for PIP due to the problems caused by
Systemic
sclerosis
and if so what points/ areas it was awarded on. Unfortunately since my diagnosis last year I’m increasingly struggling.
Horseymum
in
Scleroderma & Raynaud's UK (SRUK)
3 months ago
Infertility with Scleroderma & Raynauds?
Hi all, I was diagnosed with limited
systemic
sclerosis
two years ago. Also have severe Raynauds and Hashimotos. I've recently been told that my eggs were so bad they were falling apart when trying to be fertilised through IVF. We've just given up after five failed rounds.
Hi all, I was diagnosed with limited
systemic
sclerosis
two years ago. Also have severe Raynauds and Hashimotos. I've recently been told that my eggs were so bad they were falling apart when trying to be fertilised through IVF. We've just given up after five failed rounds.
kayray87
in
Scleroderma & Raynaud's UK (SRUK)
11 months ago
Random leg warmth
I have
systemic
sclerosis
(thankfully mildly), fibromyalgia and a few other add ons. In the last few days I keep getting a warm sensation in the front of my left thigh muscle. It's quite random and doesn't last long. Dr.
I have
systemic
sclerosis
(thankfully mildly), fibromyalgia and a few other add ons. In the last few days I keep getting a warm sensation in the front of my left thigh muscle. It's quite random and doesn't last long. Dr.
Oleander1
in
Scleroderma & Raynaud's UK (SRUK)
11 months ago
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Fatigue and joint and body pain- what helps?
I received my formal diagnosis of limited
systemic
sclerosis
last week and am waiting to have ECHO and PFT to see it has affected my organs yet.
I received my formal diagnosis of limited
systemic
sclerosis
last week and am waiting to have ECHO and PFT to see it has affected my organs yet.
Horseymum
in
Scleroderma & Raynaud's UK (SRUK)
10 months ago
Gut and hands!
As luck would have it the same GP who happened to have a special interest in rheumatology and dermatology, immediately suspected
systemic
sclerosis
and referred me to specialists in both fields.
As luck would have it the same GP who happened to have a special interest in rheumatology and dermatology, immediately suspected
systemic
sclerosis
and referred me to specialists in both fields.
cheeselover342
in
Scleroderma & Raynaud's UK (SRUK)
6 months ago
systemic sine sclerosis
Sines
systemic
sclerosis
morning all I have a question alongside all of my other symptoms I seem to be getting sore gums and ulcers in my mouth this happens when I’m in a flare up and is painful and distressing any tips ??
Sines
systemic
sclerosis
morning all I have a question alongside all of my other symptoms I seem to be getting sore gums and ulcers in my mouth this happens when I’m in a flare up and is painful and distressing any tips ??
Jaq1971
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
Mycophenolate, sun protection and swimwear
Hi, I'm currently on mycophenolate (mg / x2 / twice daily) and in the active stages of
systemic
sclerosis
. I have had some very mild skin tightening on the hands, but this has reversed. I used to be on hydroxychloroquine for about 6m then moved on to my mycophenolate.
Hi, I'm currently on mycophenolate (mg / x2 / twice daily) and in the active stages of
systemic
sclerosis
. I have had some very mild skin tightening on the hands, but this has reversed. I used to be on hydroxychloroquine for about 6m then moved on to my mycophenolate.
Nw6London
in
Scleroderma & Raynaud's UK (SRUK)
10 months ago
need to have pacemaker fitted
Hi I have had Diffuse
Systemic
Sclerosis
for about 14 years and been told very recently I need a pacemaker. Just wondered if anyone here has had one fitted and what their story is, i.e., why pacemaker had to be fitted, , how was the procedure and how they are now. Thanks in advance 😊
Hi I have had Diffuse
Systemic
Sclerosis
for about 14 years and been told very recently I need a pacemaker. Just wondered if anyone here has had one fitted and what their story is, i.e., why pacemaker had to be fitted, , how was the procedure and how they are now. Thanks in advance 😊
Eden1234
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
Weight Loss and Systemic Sclerosis
Hello Everyone I have realiaed that in the last 8 months I loss 17 lbs and has had frequent infections and pnuemonia. Now am really wondering if something is is going on. The doctors hvae me doing a set of tests, ST Scan on my lungs and I have to also do a gastrophy test. Anyone else has ever been through
Hello Everyone I have realiaed that in the last 8 months I loss 17 lbs and has had frequent infections and pnuemonia. Now am really wondering if something is is going on. The doctors hvae me doing a set of tests, ST Scan on my lungs and I have to also do a gastrophy test. Anyone else has ever been through
Anniw
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
rapid weight loss
hey all just a question I was diagnosed with
systemic
sine
sclerosis
in November last year and have many issues but I have lost 3 stone in 6 months had anyone else had a rapid weight loss with this condition ?
hey all just a question I was diagnosed with
systemic
sine
sclerosis
in November last year and have many issues but I have lost 3 stone in 6 months had anyone else had a rapid weight loss with this condition ?
Jaq1971
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
left side throat ,tongue discomfort
I am wondering if this could be related to
systemic
sclerosis
? I am very worried though as my brother had throat cancer which started in his tonsil bed, anything unusual in that area really scares me, but I feel my GP will probably just dismiss this feeling.
I am wondering if this could be related to
systemic
sclerosis
? I am very worried though as my brother had throat cancer which started in his tonsil bed, anything unusual in that area really scares me, but I feel my GP will probably just dismiss this feeling.
Buttsy
in
Scleroderma & Raynaud's UK (SRUK)
7 months ago
I'm struggling
Unfortunately I already have been suffering for many, many years from Chronic Migraine, Fibromyalgia, Asthma, Eczema and
Systemic
Sclerosis
and in turn depression and anxiety. I tried to take my own life in 2021 and very nearly succeeded.
Unfortunately I already have been suffering for many, many years from Chronic Migraine, Fibromyalgia, Asthma, Eczema and
Systemic
Sclerosis
and in turn depression and anxiety. I tried to take my own life in 2021 and very nearly succeeded.
Kittycat2013
in
Neuro Support
9 months ago
Does the pill/coil halt progression?
Last weekend I finally had my laparoscopy on the NHS and received my diagnosis and treatment, I couldn’t have been happier. Please read my story here and get in touch if you want any advice: https://www.instagram.com/p/CzUKTp4tkwb/?igshid=anZzcWtpdjNuZmN3 But now I have been left feeling lost, my
Last weekend I finally had my laparoscopy on the NHS and received my diagnosis and treatment, I couldn’t have been happier. Please read my story here and get in touch if you want any advice: https://www.instagram.com/p/CzUKTp4tkwb/?igshid=anZzcWtpdjNuZmN3 But now I have been left feeling lost, my
Sophhh
in
Endometriosis UK
6 months ago
Hysterectomy advice
Any advice on this would be appreciated mentioned Gynaecologist who hadn’t heard of
systemic
sclerosis
.
Any advice on this would be appreciated mentioned Gynaecologist who hadn’t heard of
systemic
sclerosis
.
Buttsy
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
new normal blood tests
Now I’m definitively diagnosed with antibody positive
systemic
sclerosis
and get Mycophenolate, Iloprost and Losartan amongst others. Most of my problems are in stomach and lower GI.
Now I’m definitively diagnosed with antibody positive
systemic
sclerosis
and get Mycophenolate, Iloprost and Losartan amongst others. Most of my problems are in stomach and lower GI.
OldTed60
in
Scleroderma & Raynaud's UK (SRUK)
6 months ago
ongoing health
I am fully aware my
systemic
sclerosis
and fibromyalgia raynaulds and esophigul spasms gerd and all of the other things that come with sclerosis are still battles I will continue to fight and that’s ok I will do this as no other choice .
I am fully aware my
systemic
sclerosis
and fibromyalgia raynaulds and esophigul spasms gerd and all of the other things that come with sclerosis are still battles I will continue to fight and that’s ok I will do this as no other choice .
Jaq1971
in
Scleroderma & Raynaud's UK (SRUK)
10 months ago
new job reasonable adjustments
I have had limited
systemic
sclerosis
for over 10 years with raynauds, fatigue and some digestive issues as the most noticeable symptoms. I can ask HR for reasonable adjustments- has anyone done this and if so, what did you find were the most helpful changes?
I have had limited
systemic
sclerosis
for over 10 years with raynauds, fatigue and some digestive issues as the most noticeable symptoms. I can ask HR for reasonable adjustments- has anyone done this and if so, what did you find were the most helpful changes?
quebec
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
scared newly diagnosed
I’m afraid of this diagnosis it has been two years of constant back and forth to many doctors and nobody seemed to understand what was happening to me I had no skin issues only a few spots on my hands but my ANA has come back positive for
systemic
sclerosis
it is attacking my oesophagus I cannot take
I’m afraid of this diagnosis it has been two years of constant back and forth to many doctors and nobody seemed to understand what was happening to me I had no skin issues only a few spots on my hands but my ANA has come back positive for
systemic
sclerosis
it is attacking my oesophagus I cannot take
Jaq1971
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
Newly Diagnosed Diffuse Systemic Sclerosis will I be able to go back to work?
Hi all, my symptoms started in November 22 and have rapidly progressed. I struggle with mobility I can’t walk far due to swollen feet and legs causing extremely tight skin and have very little use of my hands and fingers. Fatigue hits me occasionally and walking from one room to another is like completing
Hi all, my symptoms started in November 22 and have rapidly progressed. I struggle with mobility I can’t walk far due to swollen feet and legs causing extremely tight skin and have very little use of my hands and fingers. Fatigue hits me occasionally and walking from one room to another is like completing
Vicky_S
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
Just diagnosed scleroderma/myositis - any help or guidance appreciated
I have just been diagnosed with overlap autoimmune disease-
systemic
sclerosis
/myositis - symptoms include raynauds, interstitial lung disease, (ILD), thickened fingers with pain and stiffness, achy thighs and upper arms.
I have just been diagnosed with overlap autoimmune disease-
systemic
sclerosis
/myositis - symptoms include raynauds, interstitial lung disease, (ILD), thickened fingers with pain and stiffness, achy thighs and upper arms.
ruablue
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
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