remember i am a newbie and i dont know all the do's and dont's - but i did know better than this-went outside yesterday doing yard/pool work and did not wear a hat, i stayed out about 2 hrs (mostly in the shade) and 1 hour today, my head feels like it is on fire and numb feeling - i have a head full of hair (no thin or bald spots) does this happen to anyone else when they get in the sun-feels like a have a major sunburn but my scalp looks ok ?
Hi Kel,
I've never had this happen... did you have sunscreen on your skin?
I haven’t had that happen either…new hair products?
Hello Kel,
Wheather the heats burning hot or cool and your in the shade...just the heat in the air triggers a skin reaction as i have this plus it makes you feel really unwell in yourself and it usually turns to cold body temprature at night.
It's all to do with your circulation, blood vessels opening and shutting and then oxygen levels ontop and even if you did'nt feel like it at the time although you was in the shade...dehydration alone can cause how you've felt besides as your starving the brain.
Are you feeling any better now mate?
Terri :)
Could be a reaction to sun from meds you take?
I have never had that happen maybe you should discuss with your doc at your next appt. I have a question about the sun, does anyone start feeling sick almost right away when you are in direct sunlight? I would like to know if anyone else has had this happen.
Thank,
Piewacket
Piewacket...I don't start feeling sick...but the sun does burn me almost right away. I don't mean a sunburn...although I have had some hellatious sunburns in my life starting at about 8 years old when I had a sunburn so bad they called it sunpoisoning...and I had to lie with wet sheets over my body for a few days. However the sun literally burns my skin by it's light...meaning...it feels hot enough on my skin to really hurt..almost immediately Forty years ago I used to have to drive with towels hanging in my windows...to keep the sun from hitting me. When my hubby drove...I would move to various seats in the car depending on where the sun was landing. This has happened almost ALL of my life. Sunscreen does help this phenomena...especially now that they have the highly rated ones....but I can never be outdoors without being aware of this.
Hi kel, so I came across your post an had something similar happen to me today this morning when I woke up. I of course was outside all day and did not wear a hat but I did wear some sunblock. Although I do think sometimes it doesn’t help at all. I was out til dusk and the minute te sun went down and the night cool brisk air starting flowing in I felt my body waist up all up to my head, was very warm to the touch and my eyes were blood shot red as if I were high or intoxicated. So this morning when I woke up I had this massive headache and my head felt as if it were on fire and was pounding all afternoon. I was in so much pain and my face literally burned. I was always out and about all last summer and this never happened to me before. As the years go by my sensitivity to the sun keeps getting worse. Only thing I think would help is if you wrap your head in cool towels and some Tylenol for pain. Hope this helps an get well soon.
Hi…I have a similar reaction to the sun. My skin feels like it is burning almost immediately if I go out without sunblock/proper clothing. I have found that using sunblock with spf 110 helps. You can even rub a bit onto your scalp…it doesn’t leave your hair greasy like one would assume. It takes a few extra minutes but we all need to make getting prepared for sun exposure part of our daily routine. Good luck!
Hey Karen thanks for responding to my question! When you have been out in the sun do you almost always have a Lupus Flare? With the joint pain and fatigue? Sometimes after prolonged sun exposure I feel so bad it will "put me down" for at least 2 to 5 days. Sometimes I have to see my doc to get a shot in the behind to help with the pain. Has this ever happened to you? Once again Thanks so much for caring. I would really like to know if this happens to you or anyone else. I feel like a bit of a freak. My doc has told me to avoid the sun as much as possible but I would miss out on so many things with my family. Do you have any tips that maybe can help?
KarenK said:
Piewacket...I don't start feeling sick...but the sun does burn me almost right away. I don't mean a sunburn...although I have had some hellatious sunburns in my life starting at about 8 years old when I had a sunburn so bad they called it sunpoisoning...and I had to lie with wet sheets over my body for a few days. However the sun literally burns my skin by it's light...meaning...it feels hot enough on my skin to really hurt..almost immediately Forty years ago I used to have to drive with towels hanging in my windows...to keep the sun from hitting me. When my hubby drove...I would move to various seats in the car depending on where the sun was landing. This has happened almost ALL of my life. Sunscreen does help this phenomena...especially now that they have the highly rated ones....but I can never be outdoors without being aware of this.
Hey Karen I think I put my question in the wrong place. Sorry!
Piewacket
thanks guys for all your input, sometimes i get in the sun and it doesnt bother me , sometimes i get very very sick, guess i just have protect myself a little better-and just think we put in a pool last year, oh well, guess i can swim in the afternoon and still wear sunscreen
Hope you're feeling better. "Always, always," wear sun screen and protective clothing (a hat too) outside during daylight hours. If you can, avoid going out at all from 10 a.m. to 4 p.m. After 4 you can go out but with sunscreen and sun-proof clothing. There's SPF 50+ clothing available on the web (can be pricey) and at REI and other sporting goods stores.
I ignored this for about five years and ended up with skin carcinomas (BSC) that don't spread into the body. However, they did have to be excised and/or burned from my arms and scalp. Lupus and the drugs make us very photosensitive. And, yes the sun can cause a flare and/or increase your symptoms along with a major sunburn/skin disruption from extended exposure.
Hope this helps. You got to hold on!
I am very sensitive to the sun in terms of flares/widespread symptoms in my body: nausea, headaches, extreme drowsiness (unable to continue being awake), body aches, joint pain, intense fatigue still when I wake up from my nap that came on suddenly, etc. I get only mild skin reactions to it, like a light sunburn, but it takes an obvious toll on the rest of me. It’s SO important to keep in mind what Ann A. said… It’s not just giving you annoying symptoms, but actually worsening your disease! Any flare from any trigger can be a bad thing for overall disease progression, but UV is one of the specific things that interacts directly with our genetics in establishing the disease in the first place and re-initiating it from remission. All that sun we “used to be able to” soak up? Probably part of why we went from having a genetic predisposition for lupus to having the full-blown disease (other factors can include stress, chronic sleep deprivation, lingering viruses like CMV or EBV, and toxin exposure… But sun is one of the only factors with a pretty good scientific explanation for its role!)
I used to be a summer outdoor swim team kid, a lifeguard when I got older, and outside every minute the I could be when the sun broke out in cloudy Seattle. I was “really good about sunscreen”, meaning I always put it on, but I relied on “waterproof” way too heavily and rarely reapplied. I started to be more sensitive to the sun my final year working there, the year I worked outside even more as a coach, and then spent the fall studying abroad in the south of Spain. After that 6-month stretch I started having much more and longer stretches of my problems now known to be lupus-related. Now I’m so photosensitive I can’t even be outside in the mid-day… And even if I could without symptoms, the threat of my lupus worsening, despite all the difficulties of treating it, is just not worth it! I do feel burning heat while in the direct sun, which I avoid as much as possible. 10-15 minutes of direct sun in mid-day without good protection will make me notice symptoms kicking in, though it’s not enough to knock me out. 30 minutes of mid-day or 1-2 hours of afternoon will do me in all afternoon/evening and make the next 2-3 days pretty miserable. Wearing sunscreen helps prolong the time ranges a little, but my best bet is to stay indoors! I also react to fluorescent light, and even was having trouble with my LCD laptop screen before I started moderate-dose steroids and now Rituxan. My sensitivity is thankfully fading a little now, but I still plan to be very careful so my debilitating level of symptoms doesn’t return!
Ann A. has a great discussion post about how sun affects us and the why and how of protection… There are some good links there as well. Check it out, it could save you a lot of headache (literally!) and ultimately your health also. As much as I used to be a sun-worshipper, and it kills me to sit out from daytime adventures with friends and so many activities I used to enjoy, I’d rather be able to live my life in less pain, confusion and debilitation and get my outdoor time in the evenings. Keep that pool heated and go for your swims late in the day, and still wear your sunscreen to do it! If you have kids playing in it during the day, maybe you can supervise through a window nearby, or at least put up a sun tent (with sides, reflecting light is almost as strong too!) It seems so unfair to have to avoid these great things in life on the days we’re well enough to participate… But with continued sun exposure we won’t stay well enough for very long 
To end on a positive note, think of how beutiful a sunset is on a long, hot summer day…
I honestly cannot be in the sun at all. I get overheated so quickly and then on comes a very bad migraine. I would definitely consult your doctor. In the meantime cold rag on forehead and on the back of the neck. This usually makes me feel back to normal pretty quick.
Hope you feel better.
Take care.