The Lupus Forum banner
1 - 7 of 7 Posts

·
Registered
Joined
·
50 Posts
Discussion Starter · #1 ·
Hi All,

I'm really struggling with my dislike of light and sunshine. Yesterday I was sat studying and stupidly didn't pull the black-out blind down in time - we have a huge south facing window. I suppose I was 'in' the sun for about half an hour. I felt faint, my eyes went blurry and I ended up having to go to bed.

Today I put on, as I do religiously every day, my SPF 50 and went out, shades and all. I was only outside for about an hour and under lights at shops for about the same. I've come home burnt to a crisp - rash and lumps not just all over my face, but also on my chest which was covered. I know by tomorrow I'll have lovely scabby bits all over my head and my eyes are really, really sore.

It's really starting to get me that even when I feel relatively well, if I go to do anything I suffer!

Anyone else suffer like this and have any advice about what I can do to help?

Thanks

Sammy
 

·
Registered
Joined
·
84 Posts
Hi DnA, From everything I've been told from the members on this site, and all I've read. We are supposed to avoid the sun as much as possible. From the hours of 10 to 4. Wear our sunscreen, long sleeved shirts, long pants and wide brimmed hats when we will be out in the sun when the UV rays are the strongest. I'm sure that someone who has lots more info than I have will be along shortly to explain it much better than I can. I'm sort of new to all of this myself. But Thank Goodness I found this site, I've learned so much and got alot of wonderful information that has helped me alot.
 

·
Registered
Joined
·
406 Posts
Hi Sammy,

My problems with the sun aren't quite so extreme but I believe that there is specialist clothing you can buy that blocks the UV rays. Perhaps someone else can point you in the right direction for this....

Amanda
 

·
Registered
Joined
·
4,444 Posts
You can do a search of this site for sun protective clothing perhaps and find several related posts - I know there have been personal recommendations made for brands and so forth in the past. Most of the time you will have to mail order for these clothes unless you live near a major metropolitan area. Otherwise you'll just have to follow the recommendations already given about avoiding the suns rays, sunscreen, etc.

What lupus medications have you been on and how long have you been on them? Some medications may need to be added - my sun issues have decreased dramatically since being on Plaquenil (after the 1st year or so they improved so it took a while).
 

·
Registered
Joined
·
2,404 Posts
Dear Sammy, Yes I do suffer badly. I find this time of year quite frightening because we start to think of Spring! (You will probably feel the same)

There are many girls here who have helped me with this but the biggest thing for me is that I am on Disability so can arrange my life not to go out when the sun is worst. It can be lonely and a bit boring, but like you the sun acts quickly on me and I feel terrible.
x Lola
 

·
Registered
Joined
·
1,485 Posts
Hi Sammy, yes, photosensitivity sucks. I used to be a big outdoors person. Now I stay inside as much as I can. Especially in the summer and when the sun is bright. I've discovered that I need sun protective clothing and I wear a hat religiously -- especially inside stores. The lighting inside Costco and Target and other big stores just makes me very sick, like being outside.

Google "sun protective clothing" and you'll find a good excuse to buy new clothes.:lol::rotfl:

Good luck,
Sunny
 

·
Registered
Joined
·
98 Posts
Found out the hard way!

Hi DNA
I spent many times in the hospital with serious problems(nephritis,pleurisy & other things) that probably could have been avoided to some extent if I hadn't been in the sun or under flourescent lighting for so long.

Many doctors back in the 70's didn't know too much about lupus and I certainly didn't know that the sun was causing me to have what they now call flares. Doctors treated the symptoms back then while scratching their heads and wondering whatever went wrong??
Once I recovered which sometimes took many months,I regained my strength back and was again outdoors enjoying the sun like everyone else. Sometimes I played golf--and you guessed it--back in hospital soon after.
No one ever told me that the sun was a factor in causing my set backs because they hadn't figured out that I had lupus yet.
Looking back, I realize that I never liked the sun very much but wanted to live a normal life and enjoy the outdoors like everyone else.

I now wear protective clothing such as "Sunveil" and a hat which has made a big difference.
Many people who don't have lupus are becoming more conscious of the sun's rays. Sun protective clothing is becoming very popular and they now make it for children also.

Please take my suggestion and stay out of the sun as much as possible. It can affect you very seriously before you realize it. Best not to take any chances.
I wear my hat in places like Costco,Wal-Mart too because the lights can also cause me to have a flare. Something else that I didn't know until many many years later.
Check out clothings place on your search site and I'm sure you'll find many companies. You'll be better protected if you wear the clothing and lessen your risk of a flare. I think it's worth it!
Best of luck!
Regards
Okie
 
1 - 7 of 7 Posts
Top