I'm new here just saying hello.

[Duchess88]

Hi everyone, I'm new to here. I've suffered DLE for years and just before lockdown diagnosed with SLE after a big flare . Lots of pain in my hands and very tired. Any general advice about this horrible journey.

[svfarmer]

Hi and welcome to the group - I also have SLE and lupus - all I can say is be kind to yourself and rest rest and more rest when you can - I had the same as you when first diagnosed with lots of pain in hands and in my feet and the fatigue was unreal - it took me a long time to accept that I couldn’t run around like I used to do- are you on any medication yet? As that will help with flaires xx

[Duchess88 in reply to svfarmer]

Hi thanks for the reply, yes I'm on hydroxychloroquine started taking just a week before lockdown. Xx

[svfarmer]

Meant to say I’ve got SLE and RA - sorry I’m tired 💤 xx

[Sallmell]

Welcome. I have been on the lupus journey for 5 years and finally diagnosed yesterday. I echo what's already been said. Its so hard to find a balance because when well you want to run round at 100 miles per hour but then the next day feel like you have been hit by a bus because you did too much. Its taken me a long time to learn. Its a journey and not everyone is the same so I would advise listen to your own body and do what is needed xx

[Hamptons]

Educate people around you, the more they know the more they can support you.

[LalSD]

Hi Dcuhess88, welcome! I have SLE and also in pain. I think this lock down has made all of us very ill and triggered flares for various reasons. Its a lovely group and I have learned alot being part of the platform. As svfarmer asked, are you on medication? Have you started taking anything to ease inflammation? Sending love,xL

[Duchess88 in reply to LalSD]

I had my first call from my lupus nurse, she was so nice and just talking about the fatigue really helped me. Shes going to ask my GP to prescribe me some eye drops and a few other things to help with the other symptoms . Thanks for messaging me xx

[CecilyParsley]

Hi there. I think my best advice is to get a good Rheumatologist which is easier said than done. Lupus UK has so much information and practical advice and this group is amazing. We help one another xx