⁹Newbie: can anybody help with local support to me? Surrey/Sussex/South London

[Gm131987]

Hello! I was diagnosed with UCTD 3 years ago after contracting awful covid.

However during routine check-up bloods last month, for the first time, my Rheu picked up positive Lupus screen, ANA, rheumatoid factor alongside others i cant remember. (I have always had a negative autoimmune panel, but high CRP AND ESR)

After a year of more positive health I have just plunged into my worst flare in years:

(My symtoms are warm swollen and painful knees and hands, painful hips and ankles, ulcers in mouth and nose, worse raynauds, worse fatigue and needing to nap during the day etc)

I am scared and I feel like im mourning my health all over again, following a period of better health (even managing a family holiday, the first in 4 years)

Is there anyone or groups near me who can offer support? When i became ill my 'friends' all disappeared except for one whom i am truly grateful for

But would love to chat with like minded people who understand the situation, have been there and can advise me through what feels like an overwhelming time filled with uncertainties but also for a good chat!

I live in North Surrey but south London and Sussex are really nearby

[Debbie_kinsey Administrator LUPUS UK]

Hi Gm131987

Sorry to hear you've been experiencing a difficult flare recently. It can definitely be helpful to chat with people who may 'get it' and understand what you're going through. We have regional group in South London you could join. They are based in Tooting, and they also get involved in running some sessions with Dr Arvind Kaul at St George's Hospital. If you would be interested in hearing more about the Tooting or St George's groups, or to find out when their next meetings are, you can send an email to our volunteer co-ordinator Michaella on [e-mail] (she's on leave at the moment but will be back early next week). There are also some groups elsewhere that meet online and are happy for anyone to join them, regardless of where they live. Just let Michaella know if that's something you may be interested in.

We also have some Contacts, who are people living with lupus who are happy for you to give them a ring. They're not medically trained, but are there to offer general support and guidance. You can ask Michaella for a couple of numbers if you'd like, or you can email me if you'd like them sooner than the middle of next week ([e-mail]).

If you'd like some mental health or emotional support, you may find the Wren Project helpful. They're an emotional support service specifically for autoimmune conditions, and you can refer yourself without going to the GP first. You can find more information about them here: wrenproject.org/

Hope those things are helpful to you, but please feel free to contact Michaella or myself any time.

Take care,

Debbie

[Halfwayuphill]

Hello Gm,

Sorry to hear your illness has worsened. I am a long term sufferer of UCTD (over 23 years!). I remember quite distinctly being terrified of leaving my children without a Mother but over the years I realised whilst it was a struggle there were good times amongst the flares etc. Mine presented with suddenly developing Raynaud’s, weight loss, fatigue, problems with swallowing/talking, and being breathless. I never actually saw a rheumatologist until a couple of years had past and some of my symptoms had improved as I hated the idea of even visiting a hospital. They found the RNP antibody which is non specific for a defined connective tissue disease but is related to MCTD/UCTD. Most of my symptoms are now scleroderma ones as my gut has got a lot worse and bladder problems but I did have some Lupus ones (rash) in the past. I’m seen every year at the Royal Free and have managed a reasonably normal life but I have limitations- more so now but I am 70! Some actually improve though - we are all different.

Regarding support groups, I don’t know about Lupus ones but Raynaud’s & Scleroderma UK have one in South London and one in Sussex. I am sure they will have other members with UCTD as so many have more than one connective tissue disease. I myself live in Surrey. I don’t attend any but used years ago to run one. I’ve made a couple of long term friends as a result.

Take care

[misty14]

Welcome back to the UCTD club gm after a long , lovely break away!. I'm so sorry that your in an awful flare and do hope you are getting extra treatment to counteract it . Its so tough being ill again after being so well!!. I wonder if your holiday triggered this flare?. Did you go abroad ?. This is exactly what these illnesses can do, wax and wane and bloods can suddenly change from UCTD to being more specific as yours suddenly have!. I'm in the UCTD group too of long standing , over 30 years as my bloods remain stubbornly negative despite lots of different symptoms like you describe. There are quite a lot of UCTDers on this lovely forum so i'm sure you will make new contacts. Hope you have a Rheumy follow up soon and improve soon too. Xx