Shiny and New

[Tripitaka]

I think I have SLE -going to see Rheumy on Monday for my 1st appt after feeling so ill on and off for a while, years in fact lol......so my GP has referred me. Just wondering and worrying.....

[Hidden]

Hi Tripitaka. I'm also waiting for a diagnosis - although in my case it would be a rediagnosis from previous one of RA. Best of luck with your rheumy appointment on Monday. I hope that you can get a diagnosis that leads to an effective treatment. Unfortunately it isn't always as straightforward as this for many of us - but hoping it is for you. No one wants an autoimmune disease but it's better to have a name for what is making us feel ill. Let us know how you get on please.

Twitchy

[Tripitaka in reply to Hidden]

Thanks everyone....I've just left work early today, my legs don't feel as if they are my own, and so tired. I will be glad to see the rheumy on Monday, hopefully be a bit clearer as to what's happening. I'm not used to feeling so ill......but still grateful for everything Bright blessings to you all xx

[Paul_Howard Partner LUPUS UK]

Hi Tripitaka ,

Good luck with your appointment on Monday. Let us know how you get on.

If you need more information about lupus and how it is diagnosed, you can request or download our free pack at lupusuk.org.uk/request-info...

[Barnclown]

Hello Tripitaka 👋👋👋👋

If you click on this link, you'll go straight to a recent discussion on this forum about prepping for rheumatology appts...might be helpful to you 🤗

Wishing you all the best...please let us know how you get on

healthunlocked.com/lupusuk/...

🍀🍀🍀🍀 coco

[Tripitaka]

Well Monday has come and gone - I was officially diagnosed with LUPUS and Raynaud's and started on hydroxchloroquine 200mg.....it's all a bit strange and weird, another reminded of life's unpredictability and fragile nature. Any tips for carrying on working? At the moment with the fatigue and insomnia I can't imagine it. Still there has to be a silver lining in there somewhere?

[Hidden in reply to Tripitaka]

Well I'm sorry you have Lupus of course but I do hope you are relieved in some ways too? I also really hope that Hydroxy works as well for you as it did for me for 18 months. I had a rare anaphylactic response to it finally unfortunately.

I hope your rheumy told you to get your eyes checked before starting it and then regularly for the duration of taking it? Eye complications are very rare but the checks are important.

I learned that I have primary Sjogren's today (perhaps another connective tissue disease overlapping or perhaps this disease with secondaries). So a big day for me to be officially diagnosed with Sjogren's at last. Fatigue and insomnia are the big ones for me too. I'm self employed so can manage my own time at least. I think the best advice I can give you is to take each day as it comes while you digest the diagnosis. Maybe you can discuss with Occupational Health or HR if your work place has these. They can make adaptations to your hours and working conditions if appropriate. Take care, Twitchy

[Tripitaka in reply to Hidden]

Thank you good advice -taking each day as it comes. I think my mindfulness practice has helped me enormously. I will let Occ Health know when I return to work - sick paper for another 2 weeks. I work as a University Lecturer on a teaching and research contract, my job is really interesting but full on with teaching and students, and with it comes positive and negative stress. I shall have to make some adjustments I think......you work for yourself so that I am assuming that helps with the unpredictability of your health. Maybe I need to start thinking along those lines.......

Thank you re: advice on eyes

Primary Sjogren's - will have to look into this more. I wish you well with this challenge.

Take care, and in every moment there is some light, but sometimes it is hiding ha!