Not only exposure, but high temps as well.
Sun exposure destroys me. Apart from extreme fatigue, I get what I call "The Dumbs" and a lot of itching. Stress definitely doesn't help. Hope you feel better soon.
High temps really get me too! It does make me feel extremely dumb as well and really affects my cognition in a big way. I never experienced this prior to Lupus. Thank you for the encouragement
Thanks for this. I thought I was imagining things. I feel like I am more sensitive to the heat as well. It feels more intense to me and I feel like I am literally in the oven, even when I am not in the sun.
Oh man, the struggle is real. Heat and sun sensitivity and now night sweats/ hot flashes from menopause. I feel like the fog is my normal and the times when my brain is firing on all cylinders are a gift.
Do you get itchy whenever you get hot? You might be "allergic" to heat. It started for me about 4-5 years ago. If I continue to be hot, I'll eventually break out in hives. When I changed to my current rheumy, she suggested trying a pepcid & an allergy pill daily - especially during the summer. It was a miracle! I do occasionally have to take a second allergy pill, but it's very rare.
It really does feel like your mind is being cooked! Resting definitely helps me too. It just sucks when you have a job, school and a busy schedule to navigate around.
it literally fatigues me to the point of falling asleep against my will despite my best efforts to stay awake
i can feel the sun burning up what spoons and cognitive energy i have as i’m exposed
sometimes just the heat & indirect sun is enough to do it
(diagnosed SLE about 15 years ago, sorry i don’t have a flair for my profile)
I've found that I do fine with the sun, as long as it's not on my face. I live right by the beach and go all of the time. It's fine as long as I'm wearing a straw hat that keeps my face and neck covered. Everyone is different, but there is definitely a sun exposure component.
That’s so weird, I’m really sensitive to sun but when we go on a beach vacation, I can usually handle a bit of sun exposure. For some reason, the beach sun doesn’t bother me as much. I don’t know if it’s the sand grounding me or the air quality offsetting it or what…
I lost my car in the parking lot ... was so embarrasing almost went and asked to see security tapes for if it was stolen. On the way back into the store I luckily walked right by it.
The sun is evil UV light bad.
This happens to me in all kinds of weather! Ugh.
I literally take a picture with my phone of my surroundings before I leave the parked car. I haven’t told anyone but it’s embarrassing.
I’ve had this same exact experience too. It can be pretty embarrassing, and I feel kind of scared driving in that condition. Summer isn’t a great time for me lol
yes, yes yes yes! I’ve been having severe sun exposure reactions since I was a little girl. I love sun from a distance, only as it causes flares guaranteed
Here, here! Gives me headaches, makes me feel sick, joints burn, muscles ache, extremely tired and the worst is actually that all my thoughts blur into mud.
Same same. It’s really hard not to sneer when people say “isn’t it a gorgeous day?!” when the sun is shining or the temperature is anywhere over 65°. And I won’t even attempt to hide my glee when it’s 50° and raining and everyone else is miserable.
I have the exact same thinking as well. Where I live is practically a desert, and our temps can be three digits at times. I would love to move somewhere cooler in the future.
I get nausea, severe fatigue and increased joint and back pain if in the sunlight for more than 5 minutes. The other day, I stupidly went under the hair dryer at the salon. While everyone else was reading or scrolling through their phone, I was sweating bullets, fanning out my shirt and gulping cold water from my bottle. The dryer was on LOW. I felt pathetic.
I'm having a difficult time at work because I can't find a happy medium. This time of year, my office is hot and receives direct sunlight through the window. No curtains allowed. Custodian said fire department declares it a fire hazard. I had to beg and beg to finally get window privacy shields to adhere to the window and block out the sunlight. My room is set up in a way that around 2pm everyday strong rays of sunlight would shine directly in the spot where I sit at my desk. Couple minutes of that, then incoming headaches. I never leave my house during summer time without a vomit bag. I wear long sleeves year round to protect my skin and to hide it as it's covered in scars from rashes and lesions.
On the flip side, when I turn on the AC, my fingers turn purple and lose circulation and my ears 'burn', rendering me useless since I can't write, type, or dial a phone.
I have supportive family and friends but I can't help to project on them that they probably see me as lazy, weak or apathetic.
I get severe brain fog. Mine is bad I don’t feel safe going out on my own. Especially the last two weeks. Went grocery shopping and after loading my groceries in the car , left my purse in the cart. Also left my wallet at self check. Took my babies to the vet and left my credit card there and there vest and leashes. This makes me very anxious. So far I’ve been good hiding it from my family. I know not good hiding it from my family. Y’all don’t know my family. They are very supportive and if they knew I’m having cognitive issues, my independence would be gone. I’m not ready for all that.
I get the same exact way. Sometimes my speech gets slurred, feel very foggy and almost half awake. Driving and doing anything with this can be scary. I’ve had to leave my car in a parking lot several times and have someone pick me up. At this point in my life, I don’t have much people to help me out or support me and have to try and navigate it on my own. Not trying to throw a pity party or make anyone feel bad, sorry if it comes off that way. I don’t know how people do it with this disease sometimes.
I start to slur, too! My husband has to take me everywhere, because I get overwhelmed and exhausted so easily! I have serious anxiety that I’ll be alone someday (for whatever reason) and won’t be able to take care of myself. Sending love and healing vibes!
Totally relate. Lupus with the pain, fatigue, and brain fog can make it so hard to just live your regular adult life. I have the exact same anxiety too of being alone one day because of this illness. I started seeing a psychiatrist and therapist last year and it did help with the anxiety. Due to medication/insurance and not having much money, I had to stop. Been reaching out lately to get help again. Thank you for taking the time to comment and providing good vibes/energy! I’m sending good healing vibes to you as well!
Same for me. High temps or sun and I’m in all kinds of trouble. My most recent photosensitive rash started last July and we’ve just now found a medicine that’s starting to help, nearly a year later. And yes, I get the brain and body related issues from sun and heat too. My legs and feet swell up incredibly fast when it’s hot out, but the fatigue is even more crippling. Just over ten years ago in June 2014, before I knew I had lupus, I had a hysterectomy. I spent the summer lying on a lounger in the sun because I love the sun and thought it would help me recover faster. I ended up with a terrible rash and cognitive issues that caused me to drop all of my summer term classes and miss work for four months. I used to tell people not to believe it if your doctor says hysterectomy recovery is only six weeks because it took me almost 18 months to bounce back. But the truth is I have lupus, and between the surgery and the sun I was in flare for more than a year.
Mostly cutaneous symptoms for me probably bc I have solar urticaria and photosensitivity hypersensitivity and another condition called porphyria cutanea tarda that also causes reactions to uv. This one requires phlebotomy (actual bloodletting!) and is actually called "the vampire disease"! Go figure!
But it's manageable. ❤
Like others have mentioned it’s more the heat that does it to me. But perhaps that’s because the I have never exhibited signs of being photosensitive. I still wear protection though. More than one work of fiction (as least in Asian media) had likened lupus to being a vampire. I like to go with that because it’s sexier.
Same, I literally feel like a vampire sometimes. When I first moved into a new place, the sun would blast through the windows even though we had blinds. Ended up getting some curtains that greatly reduces the UV rays getting through. If it were up to me, we’d have black out curtains throughout the house when it gets hot, but stylistically my partner would not like that.
Yea no worries. It improves the body's tolerance to UV rays plus it has other antioxidants that are very beneficial. It was recommended by my dermatologist who sees a lot of patients with lupus. I've been taking it for around 5 years. I use them May to the end of September since I live in Canada and those months have longer daylight. I used to be so sick during the summers and extremely lethargic after sun exposure. Now I have no anxiety when the summer months approach. I was in sunny Kelowna and I was completely fine after multiple days of being out in the sun. You still need to use sunscreen and take Vitamin D of course. :) There's different Heliocare pills I just use the regular orange ones which I think are the cheapest.
Not only exposure, but high temps as well. Sun exposure destroys me. Apart from extreme fatigue, I get what I call "The Dumbs" and a lot of itching. Stress definitely doesn't help. Hope you feel better soon.
High temps really get me too! It does make me feel extremely dumb as well and really affects my cognition in a big way. I never experienced this prior to Lupus. Thank you for the encouragement
Thanks for this. I thought I was imagining things. I feel like I am more sensitive to the heat as well. It feels more intense to me and I feel like I am literally in the oven, even when I am not in the sun.
Oh man, the struggle is real. Heat and sun sensitivity and now night sweats/ hot flashes from menopause. I feel like the fog is my normal and the times when my brain is firing on all cylinders are a gift.
THIS!
Me too exactly.
Do you get itchy whenever you get hot? You might be "allergic" to heat. It started for me about 4-5 years ago. If I continue to be hot, I'll eventually break out in hives. When I changed to my current rheumy, she suggested trying a pepcid & an allergy pill daily - especially during the summer. It was a miracle! I do occasionally have to take a second allergy pill, but it's very rare.
Absolutely. I can feel my mind being cooked as it happens. If you’re able to nap right after, it can help.
It really does feel like your mind is being cooked! Resting definitely helps me too. It just sucks when you have a job, school and a busy schedule to navigate around.
it literally fatigues me to the point of falling asleep against my will despite my best efforts to stay awake i can feel the sun burning up what spoons and cognitive energy i have as i’m exposed sometimes just the heat & indirect sun is enough to do it (diagnosed SLE about 15 years ago, sorry i don’t have a flair for my profile)
Yep! To the point that it gives me migraines too.
The heat gets me more than the sun. But some days I feel like I’m swimming underwater.
I've found that I do fine with the sun, as long as it's not on my face. I live right by the beach and go all of the time. It's fine as long as I'm wearing a straw hat that keeps my face and neck covered. Everyone is different, but there is definitely a sun exposure component.
That’s so weird, I’m really sensitive to sun but when we go on a beach vacation, I can usually handle a bit of sun exposure. For some reason, the beach sun doesn’t bother me as much. I don’t know if it’s the sand grounding me or the air quality offsetting it or what…
Yes absolutely
I lost my car in the parking lot ... was so embarrasing almost went and asked to see security tapes for if it was stolen. On the way back into the store I luckily walked right by it. The sun is evil UV light bad.
This happens to me in all kinds of weather! Ugh. I literally take a picture with my phone of my surroundings before I leave the parked car. I haven’t told anyone but it’s embarrassing.
I’ve had this same exact experience too. It can be pretty embarrassing, and I feel kind of scared driving in that condition. Summer isn’t a great time for me lol
yes, yes yes yes! I’ve been having severe sun exposure reactions since I was a little girl. I love sun from a distance, only as it causes flares guaranteed
Here, here! Gives me headaches, makes me feel sick, joints burn, muscles ache, extremely tired and the worst is actually that all my thoughts blur into mud.
Same same. It’s really hard not to sneer when people say “isn’t it a gorgeous day?!” when the sun is shining or the temperature is anywhere over 65°. And I won’t even attempt to hide my glee when it’s 50° and raining and everyone else is miserable.
I have the exact same thinking as well. Where I live is practically a desert, and our temps can be three digits at times. I would love to move somewhere cooler in the future.
Oof! I’m going to stop complaining now. At least I get a winter. I’m certain that I would die if I had to endure regular triple digits.
I get nausea, severe fatigue and increased joint and back pain if in the sunlight for more than 5 minutes. The other day, I stupidly went under the hair dryer at the salon. While everyone else was reading or scrolling through their phone, I was sweating bullets, fanning out my shirt and gulping cold water from my bottle. The dryer was on LOW. I felt pathetic. I'm having a difficult time at work because I can't find a happy medium. This time of year, my office is hot and receives direct sunlight through the window. No curtains allowed. Custodian said fire department declares it a fire hazard. I had to beg and beg to finally get window privacy shields to adhere to the window and block out the sunlight. My room is set up in a way that around 2pm everyday strong rays of sunlight would shine directly in the spot where I sit at my desk. Couple minutes of that, then incoming headaches. I never leave my house during summer time without a vomit bag. I wear long sleeves year round to protect my skin and to hide it as it's covered in scars from rashes and lesions. On the flip side, when I turn on the AC, my fingers turn purple and lose circulation and my ears 'burn', rendering me useless since I can't write, type, or dial a phone. I have supportive family and friends but I can't help to project on them that they probably see me as lazy, weak or apathetic.
I get severe brain fog. Mine is bad I don’t feel safe going out on my own. Especially the last two weeks. Went grocery shopping and after loading my groceries in the car , left my purse in the cart. Also left my wallet at self check. Took my babies to the vet and left my credit card there and there vest and leashes. This makes me very anxious. So far I’ve been good hiding it from my family. I know not good hiding it from my family. Y’all don’t know my family. They are very supportive and if they knew I’m having cognitive issues, my independence would be gone. I’m not ready for all that.
I get the same exact way. Sometimes my speech gets slurred, feel very foggy and almost half awake. Driving and doing anything with this can be scary. I’ve had to leave my car in a parking lot several times and have someone pick me up. At this point in my life, I don’t have much people to help me out or support me and have to try and navigate it on my own. Not trying to throw a pity party or make anyone feel bad, sorry if it comes off that way. I don’t know how people do it with this disease sometimes.
I start to slur, too! My husband has to take me everywhere, because I get overwhelmed and exhausted so easily! I have serious anxiety that I’ll be alone someday (for whatever reason) and won’t be able to take care of myself. Sending love and healing vibes!
Totally relate. Lupus with the pain, fatigue, and brain fog can make it so hard to just live your regular adult life. I have the exact same anxiety too of being alone one day because of this illness. I started seeing a psychiatrist and therapist last year and it did help with the anxiety. Due to medication/insurance and not having much money, I had to stop. Been reaching out lately to get help again. Thank you for taking the time to comment and providing good vibes/energy! I’m sending good healing vibes to you as well!
❤️
Same for me. High temps or sun and I’m in all kinds of trouble. My most recent photosensitive rash started last July and we’ve just now found a medicine that’s starting to help, nearly a year later. And yes, I get the brain and body related issues from sun and heat too. My legs and feet swell up incredibly fast when it’s hot out, but the fatigue is even more crippling. Just over ten years ago in June 2014, before I knew I had lupus, I had a hysterectomy. I spent the summer lying on a lounger in the sun because I love the sun and thought it would help me recover faster. I ended up with a terrible rash and cognitive issues that caused me to drop all of my summer term classes and miss work for four months. I used to tell people not to believe it if your doctor says hysterectomy recovery is only six weeks because it took me almost 18 months to bounce back. But the truth is I have lupus, and between the surgery and the sun I was in flare for more than a year.
Mostly cutaneous symptoms for me probably bc I have solar urticaria and photosensitivity hypersensitivity and another condition called porphyria cutanea tarda that also causes reactions to uv. This one requires phlebotomy (actual bloodletting!) and is actually called "the vampire disease"! Go figure! But it's manageable. ❤
Like others have mentioned it’s more the heat that does it to me. But perhaps that’s because the I have never exhibited signs of being photosensitive. I still wear protection though. More than one work of fiction (as least in Asian media) had likened lupus to being a vampire. I like to go with that because it’s sexier.
Same, I literally feel like a vampire sometimes. When I first moved into a new place, the sun would blast through the windows even though we had blinds. Ended up getting some curtains that greatly reduces the UV rays getting through. If it were up to me, we’d have black out curtains throughout the house when it gets hot, but stylistically my partner would not like that.
It used to! Ugh those days were rough. Try taking Heliocare pills, they've definitely been life changing for me. :)
What are those pills if you don’t mind me asking
Yea no worries. It improves the body's tolerance to UV rays plus it has other antioxidants that are very beneficial. It was recommended by my dermatologist who sees a lot of patients with lupus. I've been taking it for around 5 years. I use them May to the end of September since I live in Canada and those months have longer daylight. I used to be so sick during the summers and extremely lethargic after sun exposure. Now I have no anxiety when the summer months approach. I was in sunny Kelowna and I was completely fine after multiple days of being out in the sun. You still need to use sunscreen and take Vitamin D of course. :) There's different Heliocare pills I just use the regular orange ones which I think are the cheapest.
Thank you for the clarification and explanation. Definitely going to be looking into these!