St Thomas Lupus Trust
1,179 members120 posts


Hi everyone!

New here! I have been struggling for years and for years I've been told Rheumatoid arthritis, fibromyalgia etc etc etc. Recently at a hospital appointment, my rheumatologist said I tested positive for Lupus/SLE. However, he isn't going to start any treatment until he tests again in 12 weeks time. Now my question is, how long did it take to be finally diagnosed and given treatment and have any of you had a symptom of sharp chest pains and heart beating so fast it's like it's about to jump out your chest? When I say this I mean it happens just with sitting reading my book or watching to. And it also feels like it's tightening quite a lot and more frequently!

3 Replies

Would also love to hear about this from other people.. I have the gene, but not lupus, but was only tested once. Is it true it might have just not been flared up at the time? Me too, with fibro and rheumatic... Anxiety like there's no tomorrow, literally, lol-ish... But my doctor wasn't a believ do fibro was never actually put in my file.. Now dealing with skin problems fo over half a year, and a neck pain for over a year. Can't seem to get help with either cuz I ditched my no good doctor who only wanted to increase Effexor. 😡


P.S. Demodex anyone?


Sadly lupus often takes a long time to diagnose. The blood tests alone aren't definitive so the doctor will rely upon your medical history and symptoms too. Doctors tened to use 11 criteria to see if a patient may have lupus and if they have at least 4 of them it's pointing to that possibility:

I was finally diagnosed after 4 years but 7/8 years isn't unusual - sadly.