Support in the uk: Hi. Hope everyone is... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

10,836 members5,409 posts

Support in the uk

Sami13 profile image
6 Replies

Hi. Hope everyone is having a good day I guess that if you have raynaulds and you are in the uk the weekend was lovely being warm and today was painful again. I was just wondering if anyone one with scleroderma, raynaulds or overlap connective tissue disease know of any support groups or meet ups in the U.K.? I live in Essex. I have great family and friends but nobody can understand how I feel unless they have been through it.

Thanks xx

Written by
Sami13 profile image
Sami13
To view profiles and participate in discussions please or .
6 Replies
avtargill31 profile image
avtargill31

Hi Sami, I only have Raynaud's but yesterday morning was bad but got better during the day. Today was a bit bad with blue/white fingers etc, but still trying to live the dream so to speak. The only meeting I've heard of was in Birmingham but didn't know dates so couldn't attend. Would love to know like you, if any one knows of meetings as although lots of people say they know Raynaud's, but if they haven't seen it in action then they can't relate to it.

Denny57 profile image
Denny57

Yes, gloves, scarf and hat is back out for the daily commute to work.

Layers are back on as well plus thick socks, painful stiff joints have returned after just one day back at work after some much needed annual leave.

Plus to top it all a gas/electric bill landed on the doorstep for £480.

I live in Essex perhaps will could start up a small group, as you are right good family and friends but not a lot of understanding of this complex rare disease.

Sami13 profile image
Sami13 in reply to Denny57

Sounds good maybe I should post asking if anyone else is in or around Essex /London and wants a meet up ?

Ncoff profile image
Ncoff

Yeah was lovely to feel warm for a change this weather certainly helps you to feel better if only it lasted forever

Fuchia profile image
Fuchia

Hi Samir13

I live in Kent and have Limited Scleroderma, Reynauds and Sjogrens and I also would really like to be able to meet up with people that have understanding of our issues.

Family, friends etc.are great but just as you say.... don't really understand.

Please let me know how you get on with a support group as I would love to find one too not too far away. We'll have to keep our eyes open for the annual conference in London this year. Th n we can all met up😉

Thanks a lots

Sami13 profile image
Sami13 in reply to Fuchia

That sounds really good. Be so nice to meet up with others Feel very bored with the sound of my own voice sometimes! Let me know if you see anything in London

You may also like...

support

and theres no support here where am from just need people to chat with that understand, that on the...

PREDNISONE!!! whats the alternative in the UK?

the moment living in France but returning later this year to live back in the UK. I have lots of...

Raynaulds primary but constantly numb/tingling hands and feet

test last august means that the doc says primary raynaulds despite 47 year old male with symptoms...

Diagnosed by anecdote

My doctor has diagnosed me with Raynauld's not by a blood test but by my description of my...

Looking for information and support system

I got diagnosed with diffuse cutaneous scleroderma in October 2017, I'm currently on...