Awaiting diagnosis and feeling awful - possible lupus

[Hs2Issue]

Went to GP for something unrelated and they didn't like a rash I had on my face and neck so sent me for bloods. I'm awaiting the formal diagnosis at the moment September appointmenthas come through (looks positive for lupus or something like that if I read the blood test correctly).

I felt awful a few weeks ago but ok again last week but this week feel horrendous and running a temperature. I know very little about auto immune diseases and wondered if anyone had any advice please? X

Look at Lupus UK.
Googling can be awful so best stick with official sites.
There can be overlap with Sjogren's disease so it's worth looking at Sjogren's UK.

There's a lady who blogs under Living with the Wolf. Worth a read.

Hopefully they will put you on some meds & it'll help.

You'll have to make some adjustments to make life easier. Google Spoons Theory & pacing. It will help with fatigue.

Bless you. Sorry you are so poorly. Is there a specialist nurse you could ask to speak to or are there any support groups you can be signposted to. Is your GP able to offer any medication to help manage symptoms whilst you are awaiting your appt in September?

Thank you for replying. Yes Google is not my friend - I terrified myself initially.

A relative has sjogrens and has been telling me to eat ice lollies to help with mouth ulcers and to pace myself which is difficult as I always do everything myself! I am not doing it all now though.

No I asked my GP last visit when they advised they were referring me and they are not willing to prescribe anything. Doesn't help much! @MauveLibrary

Im losing my hair in handfuls and that along with the mouth ulcer diet and skin on my fingers breaking down is getting me very down.

Also, just remember everyone is different. The worst case is rarely what you will go through. You have to stay openminded. Be kind to yourself but don't go into victim mentality. Life isn't over. It just may get a little more difficult.
Once you've had your next appointment you should come away with more info. Rheumatology appointments should also help

Thanks @CoffeeBeansGaloreyou are right! I think it's the limbo of not knowing which is not helping too.

Hair - I use stuff infused with rosemary oil. Faith in Nature do a rosemary shampoo (£7.99 /400ml when not on offer).
Also Olail from Home Bargains £1.49.

It took me about 2 weeks for the hair loss to slow down and then
approx 8 weeks for any regrowth to show. So persist with it.

Neutrogena hand cream and also the body lotion is really good. Lather either on when you go to bed.

Im sorry your GP hasnt been able to prescribe anything, surely there must be something they can do to help manage the symptoms...they dont sound very helpful at all...

GPs are reluctant to prescribe anything before rheumatology involvement.

Yes I can appreciate its not their area of expertise and the appointment is 6 weeks which isn't bad for the NHS but really wish I could be seen earlier! Thanks again

I've lived with lupus for 23 years now and have two children. One is heart healthy and one has heart block because of my lupus. Waiting for your diagnosis can feel like an eternity but with medication and lifestyle alterations you can absolutely live a long, healthy-ish and happy life. Be careful of facebook groups and support sites as some can be full of misinformation and inaccuracies. Hope you get some answers soon. Ask any questions and try and relax through the next few months whilst you wait.

@CatcalledHerathank you its reassuring to hear that. Really appreciate it x