Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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sparklyavf 09/08/2012

My doctor has given me a tentative lupus diagnosis. Bloods support this and so do symptoms. I do need to see a rheumatologist to confirm.

I had been kind of hoping I had something else but yesterday this happened.

I live in Australia. Spring has just started and yesterday was the sunniest day I have seen in forever. (28C with UV index high). My mother in law called about 4pm-ish and I sat in the sun talking with her for maybe 40 minutes. I didn't think anything of it at the time.

By about 6pm my hips were getting stiff and sore. I took some aspirin and went for a lie down. Over the next hour I hurt everywhere, my body felt awfully hot on the inside but I was cold to everyone else's touch. I felt like there was pressure on my chest and had trouble breathing (ripped by bra off to try help ease the constriction- didn't help) My heart skippped a few beats. My stomach felt weird. My arms got itchy. My face feels sunburnt under my eyes (on cheekbones). After about an hour of this I thought I must have been going nuts....

Then I googled- How soon will lupus symptoms occur after sun exposure? and OMG. Its a pretty classic example of what can happen. I don't think my friends and family will ever believe me though about how the sun can afftect me or understand. I know what I have now, even without the rubber stamp.

tazesmom 09/09/2012

My problems with the sun take 2-3 days to kick in so I suffered for years getting sick for no apparent reason we even moved to a warmer climate because it helped my aches and pains and it still took me 4 years to figure it out,I am so sorry you had to go through such a horrible experience but now you can hopefully try to avoid the sun as much as possible and with medication start feeling better,Cindy

deleted_user 09/09/2012

im glad you have found that so quickly..and the rheumatogist appt coming up i hope you get started on some meds. it took me so long to get started on meds and a diagnosis.. ive had the hip pains and stiffness for 10 years plus before i even had an idea i had lupus. i sun baked for an hour after my blood tests were confirmed just to see if i had the symptoms and it was just as you said but mine kicks in a couple hours later. it was sorta my dinial and science project on myself lol..best of luck to you

sparklyavf 09/09/2012

Thanks for replying :)

I've been on plaquenil for a little while. Does that mean I can spend even less time in the sun before this happens? I hadn't noticed this before. I've only spent one summer with bad lupus and it .was. bad. and now I know why. Here in Perth it gets to 40+ degrees and when you stand in the sun you can feel it burning your skin.

I'm a bit scared now. If that can happen at 28C in 30=ish minutes ... What the hell is going to happen in 10 minutes in the middle of summer?

I've thought of buying new stylin hats lol, Getting myself some moisturiser (nice stuff) with sunscreen and putting it on when I get up... I have to change all my tops (everything has a v neck)... Any other ideas???

tazesmom 09/09/2012

floppy hats and no.85 sunscreen helps me but if I am just in the high heat for to long I will pay for it,some members on here buy special clothing and use umbrellas,I must confess even after I finally got the connection that the sun was making me sick I like Linarn had to test it out more then once,I love the sun,it does not give me a rash which is strange because every thing gives me a rash,and I just had 4 small skin cancers removed so at some point I should figure it out,its odd talking about you preparing for summer when the rest of us up north are starting to dread the thought of winter,good luck,Cindy
p.s. I don't think medication will allow you to be out longer,in fact many make things worse

sparklyavf 09/09/2012

Thanks tazesmom :)

I know plaquenil isn't going to allow me to stay out in the sun. It has all these warnings about sun exposure on it! I was asking if plaquenil shortened anyone's time they could spend in the sun significantly? I am a snow white person and live under the hole in the ozone layer! YAY for me!!

I LOVE the sun. I keep sitting in it and then remembering a few minutes later that I shouldn't be.

I need this-
A UV bracelet that starts beeping after it has absorbed the equivalent of 20 minutes of sun FOR THE DAY!. It has to be stylish so I keep it on and resets everyday... If thats actually available someone tell me where to buy it :P OR feel free to invent your own!
Coralie :)

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