Diagnosed yesterday

[MoyaP]

Hi everyone. I saw my Rheumatologist for the third time yesterday and I was so scared. I always do this thing were I tell everyone I am fine to go to the hospital alone, then brick it when I get to the wait room! Anyway, after a long illness and a few visits to hospital resulting in an eight night stay, I have been diagnosed with SLE. I have hydroxychloroquine to start taking after my holiday abroad next week and an appointment with occupational health. I have joined Lupus UK today and will keep up to date with things here. I think I am still in shock but relieved that someone is listening. If anyone has any tips or would like to share what your early days were like, I would appreciate it.

[misty14]

Hi Moyà

It's a big thing to be diagnosed with lupus after a long time battling for answers!. You'll need time to process it so be kind to yourself and stay safe in the sun on holiday!. Lots of factor 50!. Hydroxy takes a while to work but I'm glad you've been started on it immediately. Keep us posted how you get on and take care X

[whisperit]

Hello MoyaP,

I'm not sure I've got any words of wisdom. "One day at a time" maybe? "Don't panic" perhaps? "This is your chance to become an expert in auto-immune disease - and all without the expense of going to med school!"

See? No words of wisdom. We are all making it up as we go along - like the rest of life, really.

But do please keep in touch here and there will always be someone to share your journey. Even if it's only through a little screen, we can still support each other. It's one of things humans do best! x

[nanagill]

Hi MoyaP and welcome to this friendly forum. It's been a great help and comfort to me since I joined and I'm sure you'll find the same. Just try and stay positive, be kind to yourself, deal with each day as it comes and don't forget to keep smiling.

[Paul_Howard Partner LUPUS UK]

Hi MoyaP ,

I'm glad to see that you've had some helpful and supportive comments from other members of the community already.

I hope the hydroxychloroquine helps to alleviate your symptoms. It does take a while to kick-in (often around 3 months) so does need a bit of patience unfortunately.

Have a really lovely holiday. If you are going anywhere sunny, make sure you protect yourself from exposure. You can find some tips for this in our blog article here - lupusuk.org.uk/coping-with-...

Keep us updated with how you are getting on and let us know if you have any questions.

[MoyaP in reply to Paul_Howard]

Thank you Paul, much appreciated.

[happytulip]

Welcome. Just a quick bit of advice that you may not have thought of in your shocked state...have you told your holiday insurance about your diagnosis because that is essential xx

[MoyaP in reply to happytulip]

No I haven't but I certainly will now. Thank you for the reminder! X

[happytulip]

You will have to let them know that you've been in hospital recently. Its a major pain in the butt but very essential. If you find that you have difficulty getting insurance or the premium is too high then the Lupus UK website offers advice with this and there are a few recommended companies if my memory serves me correctly.

I had a nightmare getting insurance once but had about 10 different diagnoses at the time. They were very helpful. Happy holidays!!

[MoyaP in reply to happytulip]

Thank you for advice. Will get onto it straight away.

[Hidden]

How have you been feeling lately?

[MoyaP in reply to Hidden]

Hi there. I am starting to feel a lot better. I started the hydroxy at the beginning of October. I don't seem to be as fatigued and the joint pain has reduced. I still have to remind myself to take breaks and eat regularly. I am hoping to see a physiotherapist soon as I feel that I should be exercising.

[Hidden in reply to MoyaP]

The fear does go away for the most part when the pain goes away. I remember when I thought I was dying. It is not a good memory.