Sun Sensitivity

[dewe]

I wondered if anyone here experiences photo-sensitivity and if so... what are their symptoms?
I find that at the beginning of summer I feel woozy, dizzy and swollen if I spend too long outside (max 10mins) I also start to feel nauseous and really fatigued and unable to concentrate...  UV exposure down here in New Zealand is extreme.
I get a rashy redness on my chest and cheeks but that goes away relatively quickly after going inside.
I noticed that towards the end of summer I develope a higher tolerance to being outside.
We are just entering winter now and I am celebrating the overcast Autumnal weather and cool rainy days.

Growing up I was all ways outside, I always had a tan and spent hours swimming in the sea... now  I am 33, and am still getting used to being someone who hides in the shade, wears huge wide brimmed hats and dreads going to out door events.
But I have decided to think of it positively, in that here in New Zealand because of the strength of the UV we have very high skin cancer rates... now I am restricted to the standing in the shade I'm less at risk of that...

I noticed the sun sickness before I started Plaquniel, I actually took myself off it for a while to see if it was causing these problems. No change.
I have read that the Ro anti bodies can cause this and I do have positive Ro...

Anyone else with this issue?  Am I crazy?

[Mountain]

Hi there,

I too have positive Ro (and La) and am sun sensitive, although I haven't experienced the symptoms you are having as yet.  This will be my first full summer since I got ill (I'm in the UK so we are in spring just now).  I've been told to wear factor 50 sun screen every day, regardless of the weather, and even then my skin goes red when I'm in the sun.  It's not like sun burn though as it dies down after a few hours when I'm indoors.

I have lupus too.  I read on a lupus website that even if the sun doesn't do visible damage to your skin, you should avoid sun exposure as it is unkown what damage is being done internally.  So I avoid the sun as much as possible, and I'm going to buy some long sleeved shirts to help keep me covered up.

It's so annoying when everyone is talking about us having a nice summer, when I'm thinking about that equating to more time spent indoors looking longingly outside.....................

Hey ho.


Take care

Lynne
x

[Billydude]

Yes,  most of us experiece sun sensitivity.  For some the sun feels like acid burning our skin.    The sun is also not good if you are on plaquinil and can cause some brownish spots.

[Katybarstool]

I need th sunshine for solar power, but have had several occassions when It has slowed me down so much. It's also left me very weak.

Being very fair skinned, I've always been cautious in the sun, but now I'm extra cautious, with the factor 50, which does work for me. I didn't burn on our Caribbean cruise earlier this year.

Kathyx

[Daisy1234]

I have severe primary SJS with extraglandular involvement.  I learned the hard way that I am really very photo-sensitive and now have to wear very dark sunglasses whenever I am outside or exposed to strong UV light even if indoors.

Additionally, my skin burns really easily now and it never used to at all.  Just like Billydude said, its like I'm being fried in acid.  I use SPF 60 as was recommended by my dermatologist.

[Joy Cox]

Billydude, Thought all my brown spots were old age spots!!!!

[Blue Kat]

I'm a Florida native and grew up in the sun.  For most of my life it wasn't a problem but the last 15 or so years I've had similar reactions to it as you have, dewe.  My sister used to kid me about it until my Sjogren's diagnosis last June and now even she understands. 

[Patze]

Now that's good to know Billydude!  I'll have to remember to tell the dermatologist next time I see him. 

When in the sun for a bit to long, I turn that lovely lobster red, and I get these weird little blisters, very odd.


Patze

[Billydude]

Yes,  my doc told me that.   I don't use any sunscreen on my face as it seems that my eyes can handle being anywhere near sunscreen.  It just drifts into my eyes somehow.
I'm very fair too and get a burn just watching a beach scene on television.

[DragonflyC]

You aren't crazy.  Sun sensitivity is a huge problem for people with autoimmune diseases.

A rash is usually what doctors are talking about when they say "photosensitivity," but like many others here, my eyes also react to the sun.  I don't go out in the summer without sunscreen, big sunglasses, and a floppy hat.  I've taken it as an opportunity to pay more attention to what I wear so that it looks like my hats are fabulous fashion statements instead of medical devices (my students often tell me that I look "fly," so I hope that means I've been successful!). 

[Jules48cats]

yes me too, I get really splotchy when I am in the sun, and if I am in the sun too long I start to feel Nauseous.
Some of the meds that I am on say I should avoid the sun.  Also my eyes are light sensitive so I never go out without sun glasses.
I haver never met a hat that I liked to wear.    So I have to watch that the top of my head doesn't burn.   
Jules

[Nans]

I had my first appointment with my new rheumy a month ago.  I have a high positive SS-A and he asked me if I was sun sensitive.  I didn't think I was so I said, "No."

A couple of weeks ago, I was outside pruning the grape vines and after about a half an hour my face started to sting.  By the way it felt, I thought for sure that my whole face would look like a lobster but just my malar rash was bright red.  I splashed cool water on my face thinking that would help but it didn't... it pretty much stung for the rest of the day. 

Well, I guess I AM sun sensitive now.

[lori]

i am trying to recoup right now from being in th sun. went out and sat in the yard with my kids and all of a sudden felt sick to my stomaqch, dizzy and out of it= came in to the AC and about 30 min later im feelin better- having hard time with my hand today so excuse the typin

lori

[Dolly Dimples]

    Hi Dewe,
                   Yea' we are the crazy gang for sure!!

                       I am sensitive to the sun, can't sit out unless in the shade, and guess what ?

                         I am sensitive to the cold as well, haven't had a very happy time this winter as ,
                         I can't keep warm even with the heating on at times!!
                       
                            This Sjogrens can make one a hermit,no matter how healthy one used to be!
                                                          Yet we soldier on & on &on, Cheers Dolly



                                                                         














               

[DragonflyC]

Oh, Dolly, I hear you about the cold, too!  I feel like I can't win in the summer: the sun gets me if I'm outside, and the A.C. gets me if I'm in.  Either way, I am uncomfortable and my body rebels.  I don't usually buy into the whole "no one understands" thing (I know more people w/ something wrong than I do perfectly healthy people), but the temperature thing really gets me; I feel in those times like people really don't get how bad it is.  Can't figure out why people want the air conditioning BLASTING. 

In the winter, I'm freezing outside, and while a toasty indoor environment feels nice, it dries me out. 

I'm really trying to enjoy spring while it lasts!