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?
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
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.
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
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.
Billydude, Thought all my brown spots were old age spots!!!! ;D
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.
Now that's good to know Billydude! I'll have to remember to tell the dermatologist next time I see him. ;) :D
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
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.
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!).
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
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.
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
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
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!
I try not to sound like there's a princess living my life somewhere, but I have trouble with the sun hurting my eyes and skin and the cold hurting my fingers and toes. I guess we'll all be happy cloudy spring and fall days....
I understand completely. Maybe we should live in a rain forest?
Cheryl
As long as it's not to hot Cheryl! ;) :D
Patze
It is such a relief to know others are just as physically challenged by the hot/cold... !!
I have caught myself once or twice explaining to people that,
"I can't tolerate the sun... but I'm very uncomfortable in the cold... and the AC dries me out terribly... and the gas heater makes me feel like a prune... "
But I realised there is no point in this as it is only makes me sound completely neurotic, which I am not.
It sure is a test of ones sanity! And yep, it can turn you in to a hermit. But... after nearly two years I'm beginning to get the hang of it... what doctors call 'self-management'.
I still resent having to be aware of the consequences every time I do something as simple eg; walking the dog at midday when the sun is high, or driving to town with the sun streaming in on me through the windscreen. It's all character building, as my father would say, and he is totally blind and currently going through cancer treatment!
Thanks everyone for the feedback. It really is so appreciated.
Dewe xxxx
Does anyone know of a good sunscreen that does not trigger rosacea? Sunscreen hurts when I put it on.
Also about the cold. For Christmas my husband gave me a heated throw blanket for the sofa and another heated blanket for our bed which CHANGED MY LIFE!!~ I have HEAT around my feet every minute and find these blankets very soothing to joint and muscle pain. Because of reynauds my feet are usually blocks of ice and my toenails had lifted off the nail beds. Now they are all grown back and look completely normal!
Anyhoo...I'm also high ANA and fair skinned redhead who gets terribly sick in the bright light!
Janna
Hi Janna,
The only thing that I've found so far is oil of Olay's "Complete Defense" (other than an expensive cream that the dermatologist sells), the one I have is around 30 SPF.
Patze
Hi Janna,
I have rosacea as well and I use a sunscreen with SPF 60 for UV A&B. So far this hasn't caused me any major problems. Its one made for kids, I think it was made by Umbra or Bio, I can't seem to find the darn tube right now to tell you exactly who the manufacturer is. But my suggestion is to look for one made for kids, they seem to be easier on the skin.
Thank you so much for the sunscreen info!
Janna
I used Bootls Soltan Sensitive for our Caribbean cruise. You can find it at Boots.com.
Kathyx
Wow - Guess I'm lucky. I have had primary for over 30 years, took Plaquinel for over 5 years and NEVER had problems with being sun sensitive. ;D
But it might be the fact that I'm half Mexican (as in Mayan, dark Mexican) and just about tan in the shade. I find that laying in the sun makes my joints and the rest of me feel so recharged. I used a tanning bed for a few winters to help me feel better. When I go to the Cancun, I use SPF 4.
I guess that might change now that I'm on injectable Methotrexate, but I hope not....
Denise
Oh Denise!
You are a lucky girl!
I am sorry to hear you have progressed to Methotrexate.
Best to you!
Janna
Denise, I'm so jealous (I'm snow white)!!!!! :D
I'm also sorry to see that you're now on Methotrexate, and I sure hope that it works out for you.
Take care of yourself -
Patze
Eeeek! After reading these posts, I'm a little nervous about my trip to Florida in a couple of weeks. To date I haven't been sensitive to the sun (except my eyes, always have been, even the snow in the winter reflects too much sun), and last summer I didn't have a problem (although it wasn't a particularly hot summer), so I'm hoping I haven't changed in the course of a season. I guess I'll find out....I'm currently just bringing SPF 30 (but the broad spectrum type), but if I start feeling anything, I guess I'll go grab some 50 at the store!
Amber,
Have a wonderful time on your trip!!
Janna
Denise,
you are lucky. I'm of hispanic and apache descent so I'm dark skinned as well. It doesn't stop my sensitivity to cold and the sun.
I didn't use to be sun sensitive but about 4 years ago I broke out into a rash on my arms and legs it itched like crazy...... went to the ER and they checked my esr was 37 they ask me did I have lupus I told them I had been dx ed with ra but had a positive ana anyway they have me a steroid shot and sent me home well after my rash cleared up I started to get there brown spots on my arms well now they almost cover the tops of my fore arms and I noticed it starting on my chest last summer...... its not pretty at all and I hate it!!!!!! I am 43and I look like I am 70 with all these brown spots and they are not getting better so I am now forced to wear sunscreen and sit in the shade thanks to the effects the sun has on me now......fatigue, red skin burning face etc.....
I have the stupid brown spots too, and hate them so much!
Same with me, and those little brown spots keep multiplying too! Dang, which they'd quit it already! ::)
Do you all get them in area's that are not exposed to the sunlight? I know I do, it's odd.
Patze
Right now mine are just where the sun hits me the most......I hope they stop there I feel like a spotted cow or something!!!!!!! I really really really hate the spots !!!!!!!!!!!!!!! Oh yeah did I mentions I hate the spots!!!!!!!
Nope Karleesgranny, now don't hold back on your hatred of the brown spots! ;) ;D Just teasing, but I understand how you feel....
Patze
Mine are on my chest, forearms and hands. Sure would love if they would only appear where the sun doesn't shine instead of the skin I show the world!
Janna
Janna,
You want some of my hidden ones? They're free to a good home! :D
Patze
Lol! Darling Patze, I would take them from you if I could, my dear!
Loving you so much!
I was wondering if my increase in symptoms lately was due to the sun.
I think I found my answer. We have been having some beautiful
weather lately and I love being out in the sun, but I guess I can't be.
And I think that is what sent me into a major flare last summer.
This is my first post, but I have been watching/reading for months.
Well Hi Sean's Mom!!
It's lovely to meet you and welcome to the forum!
You are most likely correct that the sun caused your flares. Apparently there is some sort of cellular reaction to UV rays that can really trigger advancement of AutoImmune disease.
If you are feeling up to it, feel free to start your own thread to introduce yourself. I can vouch for the folks on this site, I've belonged for a couple years and found without exception supportive and comforting replies to my remarks. The folks here are extremely kind and of the highest caliber!
Sincerely,
Janna
Dewe,
I have a similar issue with the sun. I have not found a solution, yet. SPF 30 Clothing, and sunblocking hats. UV blocking windows. Central Air on high. Currently dropping meds to see if that is the problem. Multiple Dr appointments also.