New member

[Erintrase228]

Hi I'm Erin I was Diagnosed with SLE in 1995 but have been symptomatic since 1991

Lupus is my life and it sucks 🤷‍♀️

[Boudica1]

Hi, I'm fairly new here as well. I have primary Sjogren's seronegative not Lupus. It's been a long hard slog to get diagnosed when you have a lot of symptoms but bloods are borderline or normal. It was only when one consultant went over all my symptoms and spotted visual signs on my skin that all the dot's were connected.

Until then I was being treated for everything separately, now they are finally talking about me going to a combined clinic, fingers crossed. 3 separate clinic appointments in a month can be a bit much and costs a fortune in carpark charges. Not only that but hopefully if it happens all the doctors will be singing from the same hymn sheet especially when it comes to the medication as I can't have some because of my lungs.

[eekt]

Hi Erin! Sounds like you might have a lot to share to help others...yup, it sucks, but there are lots of folks here with tips and tricks for giving the ol' dog Lupus a run for its money...and besides, we all enjoy being unique in our own way, that's what it is, making us all unicorns 🦄 😁😜

Post some more and start some conversations! xxx

[Paul_Howard Partner LUPUS UK]

Hi Erintrase228 ,

Welcome to the LUPUS UK Community Forum. I hope that you will find this a helpful place for information and support.

What are the symptoms that you tend to struggle with the most?

[Krazykat26]

Hi Erin

Hello and welcome!! U will find this forum extremely helpful with lots of advice and tips on coping with lupus (whilst maintaining a good sense of humour). Folks on here are very supportive and u will be 'enlightened' and hopefully more able to deal with symptoms as they arise. Lupus UK is very knowledgeable about the subject. We are all lupus warriors with our individual challenges but we are all in the same tribe fighting every day. Stay strong as u can and talk to this community about anything that's on your mind and u might not feel so isolated..that's how it's been for me. X

[DJK99]

Hey Erin - i know, its pants! Everyone on here is amazing, and Paul at Lupus UK was really great to talk to when I was pretty down at the beginning of the year. I recommend. Have you looked on the Lupus UK website and seen their support leaflets and videos? Have you had counselling? I just finished 6 appointments with a counsellor, free through work - she was so lovely - and it helped me accept I guess...and also recognise some habits I had such as allowing non-sympathetic friends around who lead me to feel even worse/weird/or even a fraud at times. You need supportive, light, warm people around that you can talk to when you need, and who just understand you cant do everything they want or be who they want all the time... You just have to pace yourself to allow for doing the more energy sucking activities on different days. You dont say how the SLE has affected you but youll find a ton of posts on here about how difficult it is for so many and (well all of us are up and down!) and how they deal with it - theres so much positivity and laughter too - thank goodness for this site and the wonderful people on here! Hope you find the sites helpful - please reach out when you need to and I hope you find it all really helpful. Big hug, Deb x