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Experiences with
Systemic sclerosis
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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)
5 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
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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
5 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
5 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
Confused 🤷♀️
I was diagnosed with limited cutaneous
systemic
sclerosis
12 years ago but I’m really confused. I don’t have a problem with raynauds in fact my hands get really hot when outside.
I was diagnosed with limited cutaneous
systemic
sclerosis
12 years ago but I’m really confused. I don’t have a problem with raynauds in fact my hands get really hot when outside.
Cubbyd
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
New medication
Hi there, I’ve recently been prescribed Glyceryl Trinitrate (Deponit) patches & Hydroxychloroquine (tablets) for my limited cutaneous
systemic
sclerosis
after various previous meds not working. Has anyone else used these? Any success? Many thanks in advance for your replies 😊
Hi there, I’ve recently been prescribed Glyceryl Trinitrate (Deponit) patches & Hydroxychloroquine (tablets) for my limited cutaneous
systemic
sclerosis
after various previous meds not working. Has anyone else used these? Any success? Many thanks in advance for your replies 😊
-missymoo
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
How do you MAKE your spouse Understand **Systemic Sclerosis** an all the things it brings are *NOT your own fault!!!!
My spouse blame's Me for having these horrible chronic illnesses.... He yells at me about $$$for Dr. appointment's ... Every single month I have to go see a DR... I started having *bladder spasms* - treated for UTI ... Turned out Not to be UTI !!! Just the *Weird Disease* (I also have fibromyalgia
My spouse blame's Me for having these horrible chronic illnesses.... He yells at me about $$$for Dr. appointment's ... Every single month I have to go see a DR... I started having *bladder spasms* - treated for UTI ... Turned out Not to be UTI !!! Just the *Weird Disease* (I also have fibromyalgia
8whitetoes
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Dry skin and systemic sclerosis
I have
systemic
sclerosis
and secondary raynauds and saw my rheumatologist yesterday (2nd appt) we talked about things that are different in the last 6 months since I last saw him.
I have
systemic
sclerosis
and secondary raynauds and saw my rheumatologist yesterday (2nd appt) we talked about things that are different in the last 6 months since I last saw him.
Sylviaherring
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Shoulder Ultrasound
[/i] I have diffuse
systemic
sclerosis
and taking myclophenate. Any one else suffering from anything similar - just means i cant lift my arms as far as i would like to or put them over my head. I have been doing various stretching exercises and have hydro in the next week or so.
[/i] I have diffuse
systemic
sclerosis
and taking myclophenate. Any one else suffering from anything similar - just means i cant lift my arms as far as i would like to or put them over my head. I have been doing various stretching exercises and have hydro in the next week or so.
naila_007
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Intrauterine System (IUS) birth control and hypothyroid
Hi all, I wondered if anyone had any good info on or experience of hypothyroidism and the intrauterine system / IUS method of birth control? In particular does progestogen interact with levothyroxine at all? I’ve been taking the combi pill for many years but have come off it partially because of the
Hi all, I wondered if anyone had any good info on or experience of hypothyroidism and the intrauterine system / IUS method of birth control? In particular does progestogen interact with levothyroxine at all? I’ve been taking the combi pill for many years but have come off it partially because of the
hjh88
in
Thyroid UK
6 years ago
Systemic Sclerosis Scleroderma ...AM I like the only one with this Night mare.. and no cure. Help I feel tormented by Everyone ...
I have
Systemic
Sclerosis
Scleroderma... My vocal cords are on fire .... My Esophagual spasms R Worse... I can't eat ... On the ( Boost diet) **YES I am Extremely stressed** .. can only slept sitting up...I have very sensitive hearing ... (Sleep w/ear plugs)...
I have
Systemic
Sclerosis
Scleroderma... My vocal cords are on fire .... My Esophagual spasms R Worse... I can't eat ... On the ( Boost diet) **YES I am Extremely stressed** .. can only slept sitting up...I have very sensitive hearing ... (Sleep w/ear plugs)...
8whitetoes
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
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