21,171 members16,760 posts

forgive my ignorance

just apologising ahead.i was going to leave this site as i don't quite know where i belong at the mo but keep getting brought back through symptons and the fact it's the only place i feel normal/sane.i read a blog/question on flare ups and responds and not only did i see myself in there i realised i really don't know a lot about i'm apologising ahead because i've got so many questions that i will be asking and will probably get on your nerves sorry.(but right now have to go to work) x forgot to say probably will ask embarrasing questions not to offend any1but relevant to me sorry x

7 Replies

Its cool, we all have our moments :)

If I can help in anyway, please feel free to ask.

Good to have you back :)


Dear letslaugh, I totally understand how difficult it is when you are waiting for a diagnosis. But that's why lupus UK are here, to help people like you. Mine took about 10 years, with a misdiagnosis of ME on the way. The nature of autoimmune disease is complicated.

My advice would be to do a little research on the lupus UK & St Thomas lupus trust website. There is advice on how to prepare for your rheumy appointment. Write things down to take to take with you, & take someone along if you can. Don't be afraid to jot things down during the appointment. You will find it hard to take everything in, & may want to look things up after wards.

Remember that what is written on this site are people's experiences, & lupus is never the same for 2 people. Although it is hugely helpful to know you are not alone, or imagining all those strange symptoms that come & go.

Are you in touch with your local Lupus UK group? They will welcome you & support you, even if you are not a member, & do not have a diagnosis.

I hope very much that you can some answers at the appointment. Have you got long to wait?


I am also without a diagnosis so you are not alone in using this site with no diagnosis. This site has been a life line to me and without it I would still have so many burning questions! the people on here are all at different stages of diagnosis, treatment and some have over-lapping conditions. Only you know your body, and just because you have not been diagnosed does not mean there is not something wrong with your health! everyone on here is so helpful and friendly, you would never get on any of our nerves by merely asking a question about something you are worried about or don't understand. take care xxx


I was diagnosed with Lupus 11 years ago and sometimes I still don't think I know anything about it. I'd suggest reading a lot like roobarb suggested - I also found blogs useful to get someone else's opinion on symptoms and it helps to feel that you're not going crackers on your own!!

I'm fairly new here - restarted my account after a bit of a break - but it seems like a safe place to ask questions and get answers!!

Hope all goes well and you start to feel more in control.


Rachel x


ty gals x


Just don't worry we're are all here for the same reason, be it for info help or just a good ole moan!!


If you'd like to learn more about lupus I can send you one of our free information packs. If you'd like one, please send me a private message or email with your name and address.


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