Newly diagnosed with systemic scleroderma
A-Strangers-Journey16 hours ago
I am 25 years old and was officially diagnosed with diffuse systemic scleroderma in June 2018.
I have poor lung function tests an...
Teeth - root resorption
Morganza day ago
Hi! I was diagnosed with limited scleroderma approx 4 years ago. Prior to this, my dentist had noticed from X-rays that the roots of a back ...
6 Replies2 Likes
Had to rejoin
Kingfisherblue20093 days ago
I am on here but could get login so had to rejoin
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Summer hols, fun and laughter
fairy564 days ago
Hello everybody, I hope you have had a good week. Well I took my granddaugher and her older sister to the Rose Theatre in York on Sunday to ...
9 Replies1 Like
New Birmingham Raynaud's & Scleroderma Facebook page
avtargill314 days ago
Hi Folks, I've set up a new FB page for Birmingham. Nothing on there at the moment but feel free to join and share stories. I completely for...
Next meeting in Birmingham is 30.11.18, you're all more than welcome to come along
Hi Folks, we have a date and venue for our next meeting in Birmingham. It's on Friday 30th November 2018 at 2.00pm. It'll be in the restaura...
Raymounds condition or disability?
marcuspaul1238 days ago
I feel raymounds and related conditions should be considered a disability and allowances financly benifits awarded for medication ect off ...
11 Replies1 Like
Emfrenette8 days ago
Just got more test done for my hands and wrist . Rheumy thinks I'm starting to get calcinosis build up on my Fingers. Also I've had this cou...
Us FRosties re cold need a bit of love and warmth!!
marcuspaul1239 days ago
Re conference this year raymounds society has a conference yearly did not know this till last year went last year very usefull talks and deb...
1 Reply1 Like
Systemic scleroderma and parenting young children
Kylima10 days ago
Hi everyone. I haven't received my diagnosis yet but I'm sure I will when I see a rheumatologist in 2 weeks. I'm quite convinced I have syst...
Hot weather raynouds syndrome???
marcuspaul12310 days ago
Just wondering with raynouds syndrome we know cold weather makes our hands ect numb and painfull but in this recent heatwave hands and feet...
-missymoo11 days ago
Hi there, I’ve recently been prescribed Glyceryl Trinitrate (Deponit) patches & Hydroxychloroquine (tablets) for my limited cutaneous system...
Week 3, of fun and laughter!
fairy5611 days ago
Hello all you lovely people, well I cant believe its the end of week 3 of the school holiday, its right what people say, time flies when you...
12 Replies1 Like
Have you used an UrgoStart dressing for ulcers?
NICEGetInvolved12 days ago
I work at the National Institute for Health and Care Excellence. We are looking at how effective the UrgoStart dressing is for l...
side of hands have a blue tinge
babyinny12 days ago
finally have rhuematology appointment 23rd August
crest syndrome antibodies blue tinge on side of hands since last night have been having ...
Conference 2018 -apologies
Wengc14 days ago
I posted earlier today regarding the conference in October, but my post has vanished...I was asking for accommodation tips for the co...
babyinny14 days ago
I am still waiting to see rheumatologist for definite diagnoses of crest . I have been attending dental hospital with a granuloma inflamatio...
Sylviamoore4214 days ago
I am a little baffled and confused..
From January I have been in pain throughout my body, my hands have been puffy and sore,I’ve wee red dots...
Still enjoying school summer hols!!
fairy5618 days ago
Hello everybody, I hope you are all coping well with our second round of hot weather. Although I have had a few aches and pains this week, I...
7 Replies2 Likes
First timer here!!! Be kind! 👋 Water? How much should I be drinking?
NikkiDoggett19 days ago
I have diffuse scleroderma, with renal impairment, Raynauds, and a whole list of other problems. I take about 20 - 25 tablets a day ( a vari...
Emfrenette19 days ago
Has anyone had pregnancy with Crest /reynauds ? And was is a high risk ?
Update on how our meeting went.
avtargill3119 days ago
Hi folks. Well what can I say, we had our 1st ever meeting in Birmingham and it was a great success, no awkward silences, no stresses at all...
10 Replies8 Likes
Debbiedoughnut22 days ago
My most upsetting problem is my eyes. Do any of you good people have vision problems?
17 Replies2 Likes
scared and lonely
volvox4522 days ago
I meant this to appear in the scleroderma site but it got put into the lung one – so here it is again:
I was diagnosed with limited systemic ...
Sarog7223 days ago
Hi my name Sarah Taylor got scleroderma n raynards some days so pain full no one seems to understand what it's like xx
Incontinence due to torn spinchter muscle due to childbirth
Meimster198923 days ago
Has anyone had this ? I am living a nightmare I cannot wish I was always constipated so I wouldn't have accidents but I think my only other...
babyinny23 days ago
Just invested in CBD oil has anyone used ? Do anything to relieve pain now
Blepharospasm, paraesthesias nerve and neurological symptoms orthostatic hypotension
shaunalouise2623 days ago
Hi there I'm due to see a neurologist again soon so I'm trying to gather some information before I do. I have suffered with a lot of paraest...
Burning sore tongue and throat for a year getting worse driving me to despair
I have recently tested positive for Crest Syndrome awaiting rheumatology appointment I have been attending dental hospital were they diagnos...
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