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Systemic sclerosis
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Experience with Systemic Sclerosis and acupuncture?
Hi all. I have systemic slerosis with all the usual CREST symptoms, with the most problems occuring in my hands. My fingers are puffy and swollen, stiff, suffer from Raynauds and occasionally suffer digital ulcers. Currently I am on Sildenafil (25-50mg per day). I am thinking of trying acupuncture to
Hi all. I have systemic slerosis with all the usual CREST symptoms, with the most problems occuring in my hands. My fingers are puffy and swollen, stiff, suffer from Raynauds and occasionally suffer digital ulcers. Currently I am on Sildenafil (25-50mg per day). I am thinking of trying acupuncture to
hunkyd0ry
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Anyone had success with Tadalafil for treating severe Raynauds?
Hello all I have
Systemic
Sclerosis
and Secondary Raynauds. Have tried (all separately) Nifedipine, Losartan 75mg, then Sildenfil, GTN patches, combined Losartan and Fluoxetine all with NO success. Professor Denton has mentioned that I am a candidate for Tadalifil.
Hello all I have
Systemic
Sclerosis
and Secondary Raynauds. Have tried (all separately) Nifedipine, Losartan 75mg, then Sildenfil, GTN patches, combined Losartan and Fluoxetine all with NO success. Professor Denton has mentioned that I am a candidate for Tadalifil.
-missymoo
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Bacterial overgrowth in gut/intestines question
Hello all (Quick background) Diagnosed Limited Cutaneous
Systemic
Sclerosis
and Secondary Raynauds. Saw my rheumatologist today and spoke about my worsening GI symptoms, she suspects bacterial overgrowth in gut/intestines. Just wondering if anyone could shed any light on this?
Hello all (Quick background) Diagnosed Limited Cutaneous
Systemic
Sclerosis
and Secondary Raynauds. Saw my rheumatologist today and spoke about my worsening GI symptoms, she suspects bacterial overgrowth in gut/intestines. Just wondering if anyone could shed any light on this?
-missymoo
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
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Recurring choking on saliva anyone?
Hello everyone I have limited cutaneous
systemic
sclerosis
, servere Raynauds and GI issues. Thankfully no lung or heart involvement so far 🤞 I suffer reflux and have difficulty swallowing certain stodgy foods such as bread and take Omeprozole daily.
Hello everyone I have limited cutaneous
systemic
sclerosis
, servere Raynauds and GI issues. Thankfully no lung or heart involvement so far 🤞 I suffer reflux and have difficulty swallowing certain stodgy foods such as bread and take Omeprozole daily.
-missymoo
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
And another one to add to the mixture!
So it’s CTD with a
systemic
sclerosis
here, a Sjogrens there, here a Raynaud’s, there a manky tooth, cracked up skin ...... and I’m too tired to do the Hokey Pokey 🎵🎵🎵 I could go on ..... 😜
So it’s CTD with a
systemic
sclerosis
here, a Sjogrens there, here a Raynaud’s, there a manky tooth, cracked up skin ...... and I’m too tired to do the Hokey Pokey 🎵🎵🎵 I could go on ..... 😜
Lupiknits
in
LUPUS UK
6 years ago
Anyone else got ridiculous joint pains with Sys. sclerosis?
Am I to believe it is all osteo arthritis or is it connected to
Systemic
Sclerosis
?
Am I to believe it is all osteo arthritis or is it connected to
Systemic
Sclerosis
?
marilynmcl
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Fillers and Botox injections with Limited cutaneous systemic sclerosis?
Hi all As the question asks above, I’m considering some kind of fillers or Botox injections and wondered if anyone here has had it with Scleroderma diagnosis? I am in the UK 😊
Hi all As the question asks above, I’m considering some kind of fillers or Botox injections and wondered if anyone here has had it with Scleroderma diagnosis? I am in the UK 😊
-missymoo
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Corns on fingers
I have limited
systemic
sclerosis
and certainly fall into the 'thick skin' definition of scleroderma. Raynauds for years, some skin tightening on hands and feet, puffy fingers but no sclerodactyly yet.
I have limited
systemic
sclerosis
and certainly fall into the 'thick skin' definition of scleroderma. Raynauds for years, some skin tightening on hands and feet, puffy fingers but no sclerodactyly yet.
cowhide
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Fatigue and what I can only describe as back stiffness
Hello everyone, I have Limited Cutaneous
Systemic
Sclerosis
and secondary Raynauds. My diagnosis came in January 2017, I’m still getting to grips with all the changes and one of them is the fatigue, how do you cope? If I sit down for 1/2 hour, I’m asleep, just ridiculously tired all the time.
Hello everyone, I have Limited Cutaneous
Systemic
Sclerosis
and secondary Raynauds. My diagnosis came in January 2017, I’m still getting to grips with all the changes and one of them is the fatigue, how do you cope? If I sit down for 1/2 hour, I’m asleep, just ridiculously tired all the time.
-missymoo
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
I'm new here
After many tests & hospital visits etc. in July 2016 with both Localised Skin Scleroderma (Morphoea) & Limited
Systemic
Scleroderma (Localised Cutaneous
Systemic
Sclerosis
(sclerodactyly & nail fold changes). I’ve been told having both is unusual?
After many tests & hospital visits etc. in July 2016 with both Localised Skin Scleroderma (Morphoea) & Limited
Systemic
Scleroderma (Localised Cutaneous
Systemic
Sclerosis
(sclerodactyly & nail fold changes). I’ve been told having both is unusual?
Scooterboy63
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Coil - yes or no?
Hi ladies, for years i have been told to have the coil as it will help with the Endo to reduce growth. However, i can only have the non hormonal one as i tend to go a little bit crazy when hormones are pumped into me. I keep getting put onto a whole array of pills with different hormonal levels in them
Hi ladies, for years i have been told to have the coil as it will help with the Endo to reduce growth. However, i can only have the non hormonal one as i tend to go a little bit crazy when hormones are pumped into me. I keep getting put onto a whole array of pills with different hormonal levels in them
Matt_amber
in
Endometriosis UK
6 years ago
Which one is the ***Rarest Form*** of the different types of **Scleroderma**???
., (With ***
Systemic
Sclerosis
Scleroderma***) along with my self at Vanderbilt In Nashville TN .... I very recently learned ..., I am **one of one ** or possibly ** one of Two**.... *
Systemic
Sclerosis
* has been divided into different groups...
., (With ***
Systemic
Sclerosis
Scleroderma***) along with my self at Vanderbilt In Nashville TN .... I very recently learned ..., I am **one of one ** or possibly ** one of Two**.... *
Systemic
Sclerosis
* has been divided into different groups...
8whitetoes
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Hi, I'm new here and would like to just start by saying hello to everyone.
I have now been diagnosed with diffuse cutaneous
systemic
sclerosis
and raynaud's phenomenon since early 2017 but as far as I can figure out this disease has been slowly growing within me a long time before the diagnoses.
I have now been diagnosed with diffuse cutaneous
systemic
sclerosis
and raynaud's phenomenon since early 2017 but as far as I can figure out this disease has been slowly growing within me a long time before the diagnoses.
Ladyandorla83
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Esophageal dysmotility - failed esophageal manometry test - where do I go from here?
Can oesophageal dysmotility be the presenting symptom for Scleoderma /
systemic
sclerosis
? Other causes to explore? I read something about the vagus nerve. 3. Are there non-surgical ways to improve oesophageal motility (e.g. hot water swallows, Busiprone, etc. 4.
Can oesophageal dysmotility be the presenting symptom for Scleoderma /
systemic
sclerosis
? Other causes to explore? I read something about the vagus nerve. 3. Are there non-surgical ways to improve oesophageal motility (e.g. hot water swallows, Busiprone, etc. 4.
SS01
in
Oesophageal & Gastric Cancer
6 years ago
Limited cutaneous systemic sclerosis and lung involvement question.
Hello to anyone reading. I just wanted to get a general feel for how many people diagnosed with Lcss actually have lung involvement? Trying to gage how rare or not as the case maybe to get lung problems. Thank you in advance 😊
Hello to anyone reading. I just wanted to get a general feel for how many people diagnosed with Lcss actually have lung involvement? Trying to gage how rare or not as the case maybe to get lung problems. Thank you in advance 😊
-missymoo
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Feeling rubbish after exercising
Hi everyone - I was diagnosed with
Systemic
Sclerosis
earlier this year and am suddenly feeling really crappy after my usual visit to the gym. I usually do about 30 mins a day, a bit of swimming, some light weights and my favourite Aqua Gym class.
Hi everyone - I was diagnosed with
Systemic
Sclerosis
earlier this year and am suddenly feeling really crappy after my usual visit to the gym. I usually do about 30 mins a day, a bit of swimming, some light weights and my favourite Aqua Gym class.
Cubbikins
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Limited Cutaneous Systemic Sclerosis! Is rash connected?!
I’ve had this rash apear, more aggressive on hands in between fingers and feet, but bumpy rash all over my body. Anyone know if this could be connected to LCSS?!
I’ve had this rash apear, more aggressive on hands in between fingers and feet, but bumpy rash all over my body. Anyone know if this could be connected to LCSS?!
-missymoo
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Systemic Sclerosis
Just a further update on my previous post to save any confusion when I advised my Rheumatologist my GP had informed me I have crest syndrome he immediately advised that is an old term the disease is actually
Systemic
Sclerosis
;I have been referring to the disease as CREST on my post as that's the term
Just a further update on my previous post to save any confusion when I advised my Rheumatologist my GP had informed me I have crest syndrome he immediately advised that is an old term the disease is actually
Systemic
Sclerosis
;I have been referring to the disease as CREST on my post as that's the term
babyinny
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
In process of being diagnosed, anyone in Glasgow?
Wondered if anyone can offer come advice: My GP suspects
systemic
sclerosis
, as I fit the criteria pretty well (Reynaud's, skin changes, reflux, etc etc). I have been given an urgent referral, but told that it could be 2 months before I see someone.
Wondered if anyone can offer come advice: My GP suspects
systemic
sclerosis
, as I fit the criteria pretty well (Reynaud's, skin changes, reflux, etc etc). I have been given an urgent referral, but told that it could be 2 months before I see someone.
puggyboy
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Newly Diagnosed
Blood tests reveal that I am anticentromere antibody positive with
Systemic
Sclerosis
, which I understand used to be called CREST Syndrome. She has organised a whole host of further tests, bloods, X-rays, heart and lung function.
Blood tests reveal that I am anticentromere antibody positive with
Systemic
Sclerosis
, which I understand used to be called CREST Syndrome. She has organised a whole host of further tests, bloods, X-rays, heart and lung function.
Cubbikins
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
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