Following all the discussions on lupus and the sun, prompted me to wonder how many of us had indications way before we had more severe symptoms. As a child, the first thing that people always commented on was that even after being in the sun, I continued to be white except for on my nose and cheeks. If I did get any redness say on my shoulders, it would be gone the next day. Because being tan was considered normal and healthy looking, people even would accuse me of never being in the sun even as an adult. When I was in the sun as a teenager, I would feel ill and get headaches. Of course, I didn't make a big deal about it as I already seemed weird that I didn't get tan. I didn't want to seem weirder. My best friend throughout childhood always tanned nicely and my mother always compared us. My mom would say how she was "brown as a berry" and I was not. I was also very thin and my mother always said my friend was "built just right" compared to me.People didn't realize how hurtful that was to me.
Then when lupus symptoms started to really take over, it was my classic butterfly rash that made for a quicker diagnosis ( 4 months from feeling really ill). I do want to say the 2 dermatologists misdiagnosed the classic butterfly rash in the 4 months. I now think that my sun reactions early on were clues to lupus.
I am curious if anyone else had strange sun reactions before being diagnosed or from childhood.
Healing hugs.
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Pumpkin2009
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HiI was the complete opposite to you. Like your friend I was always brown, my mum used to say that I would wink at the sun and I would be tanned. This was always the case until about 10 years ago when I started to notice that I would burn even with protection on, now I stay out of it as much as possible as my face feels on fire (even with factor 50), I feel nauseous, painful joints and headache, just generally feel bleugh 🤢
Thanks for replying. I stay out of the sun because like you it makes me feel very ill. I love what your mom said about the wink at the sun. Definitely the sun is our enemy.
Yes. I’d burn something awful. Always had butterfly but really paid it no mind. I see it in pictures of me when I was younger. I had a lot of weird stuff happen to me when I younger. Also had morphea or something like it. I’d get rashes in high school that would turn lighter than my skin. I looked like a reverse Dalmatian. I look back and see how abnormal it was but ‘tis life. Hindsight is always 20/20.
IMO, I really think we’ve had lupus our whole life. I think we are very good at compensating and doing a lot with a little. This has always been our normal so we know nothing else. I’d give anything to be in a normal person body for just one day to understand what it feels like to not drag and hurt for 24 hours.
Totally understand that feeling Jmiller a day without pain would be great. I fantasize about mowing the lawn or washing the floors without spending the next hours recovering ! I’d like to be able to buy a bottle of water when out and not have to ask the counter assistant to open it for me. People look at me as if I’m weird - oh .., I am weird 😂
Shannon, Were you anemic at any point, migraines as a teen, any other different things that you recall? I am just curious to what our childhood might have shown.
Yes! I had all sort of weird rashes from a very early age. The GP at the time told my mother it was a food allergy and we worked our way through strawberries, tomatoes and god knows what else. As a teenager I didn’t tan and was always milk bottle white. Not a good look in the 60s. Then I went through years of mottled skin, lacy patterned skin and all over joint pain. One GP even told me to get more sun and when I told her that made it worse she laughed! Definitely a long road!
Yes, Barbara, We were the white freaks of the 60s when tan was cool. On a vacation as a young adult, my husband and I were at a beach. He got extremely badly burned. When people saw him, they asked where I was. I was right there and was still white. Did you get growing pains or anything else a little different in childhood and teen years like anemia, migraines, other strange rashes, etc.
Well, I am Black and always tanned on trips to the Caribbean. However, I used to hate hot weather and would often get sick and nauseous when my mother took me out for walks on the beach. I was typically “sick” in the summer and never knew why. I also had all kinds of rashes and hives throughout my life. I never had the butterfly rash to my knowledge as a child, and I only have seen it once or twice since I was diagnosed.
I am now 43 and I was diagnosed 4/5 years ago with lupus. My current rheumy has downgraded me to MCTD because I am very stable with few symptoms now. I still feel nauseated and weak if I am out in the sun for a long time, so when I do go to the beach it’s only for an hour at a time.
Kimpir, Do you remember getting growing pains, migraines as a teen, being anemic? I am just curious that we had indications before adulthood. One thing that keeps coming out is that many of us felt ill from the sun - rashes or not.
Hi Pumpkin- yes I was and still am anemic. As a kid my sicknesses were attributed to having “low blood sugar”. It is interesting to connect the dots now. No migraines until I was well into adulthood.
What a very interesting post Pumpkin. We emigrated to Australia when I was 4 years old having had double pneumonia and measles all at the same time the winter before we left. I was VERY ill with those illnesses and I personally think that’s what triggered my Lupus. I saw from old photos that I had a redness over my nose and cheeks - quite distinctive even in black and white photos. Anyway in Australia I did burn in the sun for the first couple of years but quite quickly acclimatised and ended up not wearing a hat or using sunscreen (there weren’t many around in the sixties apart from some greasy oily stuff that stained your clothes). I got VERY brown. I did get rashes on my torso when I got into my teens especially at times of anxiety/stress like when my Dad had a heart attack when I was 14. It was put down to ‘nerves’. Back in UK from age of 15 my Raynauds really kicked in and I suffered chilblains for the first time in my life. As time progressed I developed other symptoms like falling hair (Mum used to get furious with me when her carpet sweeper got jammed up with my long hair!) , rashes, migraines and so on. I was only diagnosed with Lupus when I was 58, 8 years ago. Somebody I met whose daughter had Lupus told me her daughter lost her appendix, gall bladder, half her thyroid in that order which is exactly what happened to me in that order too and all under the age of 43. From age of about 44 I started to react to being out in the sun - headaches and rashes. I’ve got worse as time has gone on and keep out of it as much as possible now. Such a weird condition isn’t it? Xx
Absolutely Pumpkin, it think the sun is causing us all issues at this moment in time as you know from my post , but now you've made me think back too ! When I was complaining to my husband how red and blotchy and ill I felt at the moment, he reminded me that I was exactly the same 25 years ago when we met, and I always had an issue with the sun , so I guess I was pretty much the same even more years ago ! Things are just getting worse I suppose !
Incredible to recall my parents rubbing coconut oil on us in the 70s! If you weren’t burnt, you hadn’t been on holiday! Different times but I think you raise a good point about early indications. 😎 👒 ☂️
It still surprises me that doctors never seem interested in childhood medical history. Just like being anemic as a child, then later in adulthood. Maybe finding some early clues could help in diagnosing earlier.
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