I know what you're talking about - it happened like that for me too. Check out my post in new members forum from Oct. 8 (I think).
I had had various symptoms but never connected it with lupus because my PCP didn't. Not until my 4th attack of pericarditis in 4 months, and a heart cath. did they even do a test. And it was I who asked why they hadn't done any blood work. So after the heart cath the cardiologist ordered labs done and found the positive ANA. and high sed rate, among other things. She thought lupus right away and sent me to a rheumy. I've been on prednisone 20 mg since April - my rheumy started me tapering first of Sept. - now I'm down to 10 mg a day. I felt fine in between peri. attacks , which were each reated with mega-pred. and just knew the doc was wrong - no way did I have lupus! Until 3 months later when I apparently had my first (?) flare. All of a sudden I couldn't even get out of bed - my body felt like it was made of cement - I've never felt so fatigued and weak in my life. Short of breath, low grade fever, nauseous, dizzy, and achey - for nearly 3 weeks. Now I'm slowly getting past that. I think it may have had something to do with tapering the pred. I have an appointment with my rheumy next week for bllod work again.
After researching lupus on the web, I realise that I've had several of the other symptoms over the last few years , but never made the connection with lupus. I often have a positive ANA, because I had hepatitis C, have Sjogrens and lichen planus - all auto-immune deseases - so I guess I shouldn't be surprised. The HCV is in remission now for 6 years, thank goodness.
I was getting really worried about my mind too - was afraid I was getting senile - then found out it's the lupus and even has a name - "brain fog!"
I sure hope you're starting to feel a little better - I guess it will never be "life as we knew it" again, but we get a choice as to how well we live with it. For me, I count the good days I'm beginning to have, and thank God that my bad days aren't any worse than they are. Haven't you often wished you had a really good excuse just to lie in bed all day and read, (or sleep or watch TV without feeling guilty, or an excuse NOT to clean or make dinner, without appearing lazy?. Well, now we have one!!
I'd love to keep in touch since we're both newbies - we all need support.
Hang in there....
If God brings you to it, he will get you through it.