I didn't want to depress anyone, but mine was a bit over two years...

Mine was 3 yrs until Plaquenil just started helping last month in April. I never understand when people talked about flares b/c mine never let up and was always a constant agonizing pain everyday.

Me too. I'm always in pain. Always. It's just sometimes it's worse than others. For me, it's hard to tell what a flare is and isn't. I try to delineate them by fevers and good days (few and far between, mind you). Good to know I'm not the only one.

I agree MButterfly. I'm also glad to know I'm not alone.

Before I figured out that I probably had lupus, I worked for a science project where I spent two days consecutively working all day long in the water in the Florida Keys.

I had a fever for weeks and spent years recovering from that incident. Nobody connected the sun exposure to it, the doctors said I had some kind of mono.

It took me a really long time to figure out what the heck was going on. I would get really sick whenever I got too much sun or worked in the heat. I had a psychotic break about five years later that might have been triggered by sun exposure and extreme stress...that took many years to come back from.

Lupus does cause temporary psychosis in some patients. It does not mean that you're mentally ill.

Failing to diagnose lupus can leave a patient powerless to cope with it...with devastating consequences. I could have avoided so much grief if only I'd known that I needed to avoid sun exposure. It's just not something you think of...I kept asking people if sun exposure could make someone physically ill.

For the longest time I had all the symptoms of lupus, but in all the books it says you have flares so I thought well this has been going on a lot longer then a flare. I think they need to change that in the books it's very misleading and people really need help get thrown off of where they need to be headed by that.

I have had some really bad mental breaks lately, I'm glad I am not the only one having that. Mine never really last that long because I keep telling myself you are loved and to forgive the ones that don't understand.

I live in a place that we get very little sun so I don't have to much problem with it. In the past I have very bad side effects from it before I know why. I thought I was allergic to it and now I am very careful in the summer and I skip days on the lake even though that was one of my fav places.

I read that no two lupus patients are alike, it affects people differently. That's also true of MS. Chronic illnesses can go up and down like a rollercoaster, decline steadily, or just remain more or less the same for years and years.

I was surprised to learn that lupus affects men and women in different ways. In younger years women get the illness much more often than men, but in senior years the ratio is about 50/50. Men usually have worse symptoms than women...and the facial rash is different too. Men get the malar rash on the forehead and scalp as well as the cheeks.

I tried everything under my hat including aluminum foil, but I kept getting red and sore on my forehead and scalp after being in the sun.
Then I found out it's not sunburn, it's the rash.

"Lupus does cause temporary psychosis in some patients. It does not mean that you're mentally ill. " That's absolutely TRUE.

As to sunlight - even flourescent lighting sets me off. Can't do the big-box stores for long even with sunscreen.

And, it is a misconception that lupus (especially before treatment) kind of regresses and reappears. For me it was YEARS prior to treatment. After treatment...sure, I might have some "down time" from it - but never completely.

I got a little confused in my last post. What I meant to say was that chronic illnesses can get worse steadily with time, not "decline steadily".

But I guess it doesn't matter, there's no predicting which way most of the chronic illnesses will go with time...up, down, stay the same. They're always full of nasty surprises for us.

Sometimes I can see clearly why I'm flaring, other times it just happens and I don't know why. Lack of sleep and relaxation, too much sun and/or heat, emotional stress, over-exertion...those are my usual triggers.

I should say that I'm hopelessly confused as to whether I have ME/CFS or lupus...or both. I have clear symptoms that fit both illnesses, but I've only been officially diagnosed with ME/CFS. I was diagnosed by doctors with things like leukopenia, heart valve issues, chronic UTI, and recurrent pleurisy...but nobody ever put the pieces all together.

The coping strategies for the two illnesses are very similar, so I suppose it's not important which I have. I have only very limited access to health care professionals in my current situation. I read a lot to try to make up for that, so I'm just full of relevant and irrelevant info...LOL.

to MButterfly I work in an office under florescent lights all day and I am always sick at work a few times when I had migraines I turned the over head lights out and used a few softer lights and I can tell you I felt much better on those days so I totally believe you on the indoor light as well. And to RickieD I think you are very intelligent I love reading your posts and yes your right it really doesn't matter which illness the coping are very much the same just different ways to take care of yourself. I think that is wonderful that you have found some of your triggers, I am still very much in the dark except for the sun and florescent lights.