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Sjogrens Topics => Living With Sjogren's => Topic started by: Skyddle27 on June 14, 2008, 03:28:47 PM

Title: Reactions to sunlight
Post by: Skyddle27 on June 14, 2008, 03:28:47 PM
I have a very lively 4 year old that is just thrilled that warm weather is here. I have been trying to spend as much time outside with him as I can because I was starting to feel a nit stir crazy just sitting around the house. I have always been sensitive to heat so I carry jugs of water everywhere. I was raised in the mountains of upstate NY and I have been stuck in San Antonio for 8.5 years now. I am still not used to it. I am finding it even more difficult to enjoy the outdoors with my little guy though. Yesterday, just being out in the sun for less then 30min. I felt overwhelmingly sick! I felt like all of my energy was zapped out of me. I got the most awful headache and I was dizzy and just blah! I tried to eat but food made me queasy. No amount of water helped me perk up. I started to feel better after I laid down for a few hours and I wasn't able to go back outside with my son until after sundown = ( I have had this problem before and it is always worse in the summer, but it happens year round if I spend too much time in daylight. My husband was joking around with me that I was allergic to the sun (I also sneeze a few times when I first step out into the sun). I got on-line last night and started looking up info sun allergies but just about everything I found talked about rashes. I don't break out in hives or anything. When I was about to give up on my info search, my husband came back into the room and said that maybe it had something to do with me possibly having Sjoren's. We have a friend Andy that has an autoimmune disorder (I have never asked what she had exactly) and she can only be exposed to sunlight for 15min. intervals because she reacts badly to it. I used his suggestion and found a lot of people with Lupus that get the exact same symptoms from sun exposer. I know I do not have Lupus. Does anyone else have problems with sun sensitivity?
Title: Re: Reactions to sunlight
Post by: Scottietottie on June 14, 2008, 04:43:01 PM
Hi Skyddle  :)

You are not alone. Yes - the sun can make us sick. I used to love the sun and sunbathing but now I try to keep in the shade, I wear long sleeves, generally cover up, use sunblock and wear a big floppy hat and if I forget - I suffer.

Sunshades and gazebos and things can be handy so that you're outside - but not in the sunlight.

Take care - Scottie  :)
Title: Re: Reactions to sunlight
Post by: JannaLee on June 14, 2008, 07:28:49 PM
I am fair with red hair and was raised in Dallas.

There were many times in my life when I had episodes like you describe.  My mother always called it "Sun sickness" or "Sun poisoning" because I am so fair.  Are you fair skinned?

This may sound dumb but I have gotten this same reaction (but not as strongly) from having an eye exam.  Bright light into my dilated eyes has left me dizzy and queazy for several hours after the appointment.
Title: Re: Reactions to sunlight
Post by: Skyddle27 on June 14, 2008, 08:37:18 PM
I am very fair skinned. I was talking with my mother tonight about what has been happening and she said that her mother has the same problem (Grandma deffinatly has Sjogrens). Mom said that my grandmother had to take medication to be able to go out into the sunlight at all. My grandmother, whoever, is not fair skinned. Well, I guess she doesn't have much color now...she NEVER leaves the house anymore lol. I have always tried staying in the shade and I use the highest spf I canget my hands on etc. I do ahve reactions to other light sources, JannaLee. I get bad migraines from all types of lights. It is usually the migraines with not much pain, but definately the dizziness and queaziness for hours. When I was really little, my parents thought I had motion sickness, but it turned out to be the light flashing between passing trees just giving me a migraine. Darn Grandma and her bad genetics lol.
Title: Re: Reactions to sunlight
Post by: Joe S. on June 15, 2008, 04:42:19 AM
I used to love the sun and being out doors. Camping, fish watching, and swimming in the summer, sledding in the winter and Jogging year round. Now I am searching for more ways to avoid it. Long pants, Long sleeves, hat, gloves, and sun glasses yet I still broke out with a rash. I can not tolerate the taste in my mouth of sun screen on my skin any more.
Title: Re: Reactions to sunlight
Post by: JannaLee on June 15, 2008, 10:37:18 PM
Sky,
You are very pretty.
Title: Re: Reactions to sunlight
Post by: Zeta on June 16, 2008, 04:01:45 AM
*sigh* I have the same problem too. The sun makes me feel like CRAP. But only AFTER I come inside. I feel alright while I'm out there. Just another symptom that points to me having Sjogren's...
Title: Re: Reactions to sunlight
Post by: mtncutup on June 16, 2008, 10:52:47 AM
I just got back from vacation in Panama City Beach.  Had a blast except, like Zeta, I didn't feel bad until after I came in from the sun.  It also seemed that my joints ached more while I was there.  Is this a normal thing?  I wasn't really any more active than normal.  It was just more humid there than it is at home.
I didn't notice that I burned any easier.  I did go to the tanning bed for a month before the trip, not to tan,  just to get a little sun exposure.  Still wear SPF 50 when I'm outside for long periods of time. 
Title: Re: Reactions to sunlight
Post by: Epson on June 16, 2008, 02:01:23 PM
Skyddle,

Welcome to the "People of the Night" club.  My neighbors all wonder why I cut my grass in the evening?  Transition lens no longer get dark enough for my eyes, so I buy the darkest wrap around sun glasses I can find.  Even the use of 75 SPF sun block is not working and my dermatologist wants me to get the windows tinted on my car.

I am fair completed and my face gets very red, according to my opthomologist, this is a great combination for photophobic eyes.

My only comfort is sleeping in my coffin during the day and flying around at night, all kidding aside I do feel like a vampire.
Title: Re: Reactions to sunlight
Post by: Patze on June 16, 2008, 04:54:06 PM
Epson, where have you been?  I've missed your witty verbage!!

I too get very tired after being in the sun for a short length of time (and let's not even talk about the red skin ::))...it's so frustrating as I loved being out doors most of my life. 

Hey, move your coffin over for the rest of us now and quit hogging the room!! ;)


Patze
Title: Re: Reactions to sunlight
Post by: Scottietottie on June 16, 2008, 06:12:42 PM
Hey Epson  :)

If you start wanting to drink blood - get your B-12 tested!   ;)

Take care - Scottie  :)
Title: Re: Reactions to sunlight
Post by: Joe S. on June 16, 2008, 06:42:44 PM
I do not want to go back to blood puddings and pies! I hated those things. besides I would have to start robbing blood banks to support my habit since most of the butchers are no longer in private practice. Well we do seem to burn in direct sunlight like proper vampires would.
Title: Re: Reactions to sunlight
Post by: LenV on June 16, 2008, 07:49:55 PM
Something else.  Epson, if you feel like you could drink blood have the doctor check to see if you are anemic.  I go thru these periods where I literally crave a very rare steak.  I've cooked them in the middle of the night.  We now know that I am severely anemic when this happens.  In other words, I'm a pint low.   ;D  Sorry...no vampire teeth to display.

Billye
Title: Re: Reactions to sunlight
Post by: Skyddle27 on June 16, 2008, 08:06:36 PM
I have always been more comfortable with night time in general. I am all about the Vampire thing. I don't think my son would complain to much about being up late either....Now I just need to find a good elementary school that caters to the children of the night lol.
Title: Re: Reactions to sunlight
Post by: ree031 on June 16, 2008, 08:17:35 PM
I too have problems with the sun. My problem is mainly with the brightness with my eyes. Its a killer.

I love in Australia, and where we are we have very HOT summers.

Ree
Title: Re: Reactions to sunlight
Post by: JannaLee on June 16, 2008, 09:44:16 PM
You guys are hilarious! 
Title: Re: Reactions to sunlight
Post by: Pooh on June 16, 2008, 09:53:20 PM
Ni Everyone,
Check out the latest issue of Moisture Seekers from the Sjogren's Syndrone Foundation.  There is an article on the front page about out problems with the sun.  It is an excellent and valuable store of information. 

Pooh