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Thanks for your help. I will definitely write down everything. I struggle to remember stuff, so without it I would just go blank on the day! It's been so very exhausting recently. Especially with a new baby too. But since I discovered that the sun was triggering things, I have been better.

My rash on my face comes on fast and gets hot, burning hot almost?

I had a rash while pregnant that was insanely itchy, it started looking like tiny little bites and then got bigger and scabbed. No one could tell me what was causing it and it didn't sound like any of the normal pregnancy rashes and now I have scars all over my arms.

I have pain when I breathe in. This has been a constant sign of a flare since I started getting ill 6 years ago. It's only my rib cage at the bottom on my left.

Joint pain really badly, and weakness to the point where I struggle to walk upstairs. Xrays show arthritis too. (I'm 30)

I even have trouble speaking when I'm very bad.

In the sun I get so dizzy and just...I can't focus on anything, I feel drained and then over about 10 days after a long exposure to the sun I get flu like symptoms worsening. It's awful.

I have a lot of GI problems, severe allergic reactions to random stuff. Recurrent cystitis and protein and blood in the urine. And of course preterm labour in pregnancy.

Yet my full blood count is always pretty much normal and my ANA titer is low. I think they said they testing me for a whole slew of other bloods, like clotting factors, after my son died (well after I insisted) and that everything was else was fine. I remember my doctor saying "your ANA is positive, but the other tests are negative so you don't have lupus, lots of 'healthy' people have a positive ANA, so it's no big deal'. I'd just like a diagnosis...it's been so long and such a hard battle to get anyone to listen. I worry that damage could be done already.

I can't take a lot of meds because I'm still breastfeeding my 9 month old. That really limits me. IF I do get a diagnosis, is it likely I'll have to stop to take any of the meds? Also I badly need to lose weight. I've lost a lot already, but have another 100 pounds to go (wow that sounds bad) so I need to exercise, but I guess taking it easy and not overdoing it is very important? I do yoga every morning to help the stiffness and try to do cardio on good days.

One more thing, anyone else get "cold hives?" or urticaria? I've not been able to go out in the cold (especially cold wind) without breaking out in HUGE welts or hives all over my body - exposed or not. And now I can't go out in the sun either...lol.

Anyhow sorry for the long post and thanks for the help!





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