Light Sensitivity

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Regular Member

Date Joined Oct 2016
Total Posts : 25
   Posted 3/8/2017 7:30 AM (GMT -6)   
I'm still relatively new to the lupus/UCTD scene. I've never had sun sensitivity or light sensitivity. Lived at the beach until last year, and still drive my convertible with the roof down any chance I get.

It hasn't been sunny lately, and I haven't had my roof down. Yesterday, after a regular day in the office, I came home with what looked to be a mild sunburn on my face and neck. Even had the white area under the chin where the light/sun can't reach. It was not the butterfly rash. It seemed to be more of a reaction from what skin I had exposed to the lights in my office yesterday. Although, my hands were also exposed and I noticed no reaction there.

This would be a new symptom.... I'm wondering how everyone's sun and light sensitivity first started and/or manifested itself?

Also... the "rash" or "sunburn/lightburn" was gone just a couple hours after I noticed it. Does this sound like a lupus/uctd related reaction?

Much Thanks,
Happy Tuesday!!
January, 2017 - Doctor is toying between a UCTD and Lupus diagnosis

Plaquenil, 200mg since January 6, 2017

Gluten-free since January 5, 2017 - I don't have celiac, but doctor advised it might help with the lupus/UCTD

Regular Member

Date Joined Jun 2015
Total Posts : 146
   Posted 3/8/2017 9:50 AM (GMT -6)   
I have always gotten sick from the sun since I can remember but lights never bothered me until recently. I have not been diagnosed with lupus yet (over 2 years of symptoms and positive ana). I get the same redness you are talking about around my cheeks and nose. I also get red on my knuckles. My rheumotologist told me he can't relate it to anything I am going through. I also get very dizzy and nauseous. I am seeing a new doctor in May. Hopefully we both can get some answers. Sorry I did not have a better response for you.
Ulcerative Colitis (remission) on lilada
Reflux on dexilant
Recently low positive ana and now on plaquinal

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 3/8/2017 1:17 PM (GMT -6)   
Many Lupus patients find they are sensitive to sunlight and many artificial lights, especially fluorescent lights. Reactions range from minor redness to more significant rashes that sometimes mimic sunburns. Even minor rashes can be accompanied by fatigue, again ranging from minor to severe.

Personally, I have more reactions to the huge banks of florescent lights in big box stores such as Walmart than I do with the sun. Within minutes I am flushed, exhausted, warm and cranky no matter how healthy I feel before entering! The facial flushing stays longer if I am in the store longer! Generally it's a smooth pink/red across face and neck.

Sunlight is more apt to find me in short sleeve shirts & shorts - I am very fair skinned anyway and have never tanned - I just burn then turn back to white. Since Lupus, I have a constant red rash on my arms & legs. It is very spotty and, at my age, blends in with age spots, etc, so unless you are looking for it you might not notice.

I would guess that both of you are experiencing mild skin reactions to lights. It doesn't necessarily mean you need to do anything about it, but I would avoid stressing your system with unnecessary light exposure, especially if you are doing other things that aggravate your particular Lupus manifestation. Everything adds up, and you don't want something as simple as sunscreen or a shade over a fluorescent light to push you over into a huge flare.

Several of our members use special sun-protected clothing, or there is also a product you put in the wash with your clothes that turns them sun-resistant. Hats & umbrellas are useful. I have tinted windows on my car, and I definitely notice a difference when traveling in a non-tinted-window car. I recently found out that if you have a strong reaction in your car you can, with Drs orders, get darker tinting than is usually legal!

Y'all be safe out there!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
"Life is far too important to be taken seriously." - Oscar Wilde

Regular Member

Date Joined Nov 2016
Total Posts : 22
   Posted 3/10/2017 10:17 PM (GMT -6)   
My husband is in the Coast Guard, so we have long been living along coastal areas in sunny locations. It wasn't until a full year after I first started getting sick did I have my first bad reaction to the sun. Oddly enough, it was only 2 weeks after my diagnosis (which was just 3 months ago) and of all places in Michigan! Never had problems along the coast. I was in the car driving for maybe 25 minutes, felt my face flushing up. Figured it was just heat too high in the car. Started getting a headache. Went home looked in the mirror and I had what looked like a chemical burn on my face in the outline of the usual butterfly rash. From there on I get sick in the sun, and sometimes certain indoor lights too.

My rash itself comes and goes throughout the day. It is not raised or patchy or itchy. My face gets very hot and very red just in the typical butterfly shape.

I highly recommend sun protective clothing, and tinted windows as Lynwood suggested. Someone on here (I believe her name is Butterflake) suggested for sun clothing and they're wonderful. Pricey but worth it - just having a hat on and a zip up sun protective jacket over my arms helps immensely. And good, strong sunscreen. Although I prefer the more "natural ones" as they don't have a lot of chemicals that aggrevate my skin. I like Alba or Jason's.

With all that said, I wish you the best in this journey! It has been very hard for me to adjust to this new found sun sensitivity in the last 3 months. Especially since we are moving to Texas this summer! Arm yourself with the best protection, limit your time outdoors in spurts, and take care of yourself above all else!!!

Good luck to you both!!!

New Member

Date Joined Feb 2017
Total Posts : 8
   Posted 3/21/2017 6:32 PM (GMT -6)   
Does anyone get swelling in their feet/ankles from sun/heat? I had trouble with that 2 summers ago....was a new thing - and before I had any other symptoms. Thought it might have been thyroid related - but all checked out there. I might have a few vanity pounds, but didn't feel that it was "weight related". Wasn't as bad this summer, but then the the rashes came.

Post Edited (Upstater) : 3/22/2017 11:15:07 AM (GMT-6)

New Member

Date Joined Mar 2017
Total Posts : 8
   Posted 3/23/2017 7:19 AM (GMT -6)   
I also have dark transition glasses that I wear in the house, when out I where the (darkest clip on) sunglasses. Most of the time I have to wear both at the box stores. I also keep the blinds and drapes closed at home. I have dark tinting on a vehicle which helps. I have learned I can only be outside from early day light till about 9:00 am or when the sun starts getting bright, I get very tired and I'm done for the rest of the day.

New Member

Date Joined Apr 2017
Total Posts : 7
   Posted 4/17/2017 3:42 PM (GMT -6)   
Hi Upstater-
I just joined today and did a search on sun since I was just diagnosed with UCTD in Dec, skin symptoms, swelling, muscle aches and pains all subsided quite a lot over the winter. I also have Hashimoto, but that has been well medicated for about 7 years now (my TPO antibodies are well below 100!) Well...I'm back outdoors enjoying limited time with gardening, and bam - I have more aches and pains, skin starting to burn in localized areas, hands are aching, fingers swelling slightly, and the feet, toes, and ankles are swelling slightly and ACHE! Actually, they feel bigger than they are like they're swollen to the point that my skin can't handle it anymore, but they really aren't noticeably swollen- weird. I also started thinking maybe this is related to the warmer weather, the sun, more walking. I'm a really healthy 51 year old woman who now feels 80 something many days, so I'm trying to figure out what bothers me/triggers my symptoms and what doesn't. Thanks for making me feel like I'm not crazy with this new symptom.
Hashimoto, Undifferentiated Connective Tissue Disease, GERD, and Mitral Valve Regurgitation
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