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red246
07-09-2010, 03:41 PM
I really wanted to do a poll, but I can't figure it out. :(

I know that the majority of people I have talked to about this have sun sensitivities, but I want to know if there's anyone else who has honest to goodness heat sensitivities. Even my doc says that the sun is still probably the culprit. I just can't seem to get it through to her that I can be inside all day in the nice comfy air and go outside at night (you know when there is NO sun) if it's hot out still, I'm down for the count. Maybe not immediately, but you get my point. If I go somewhere where it's hot inside it's the same. If it's a nice cool spring/fall/winter day out - I can be outside w/out any issues, w/out any sunscreen, no rash, no chest pain, no dizzies, no nothing! I thought about getting one of those cooling vests, people w/MS sometimes use them - but they aren't cheep!

So, anyone else like me or am I just psycho? :) Woo hoo, I figured it out! Happy Dance!

Sarah2010
07-09-2010, 03:53 PM
Hello.
I have extreme heat sensitivity as well as the sun. My dr thinks that mine is due to an underactive thyroid. But even though i've been taking synthroid to correct the problem, I still am extremely heat sensitive. Their are sometimes when I cant bare to take a shower because even the hot or warm team from it about puts me down. If i'm in a building that is warm its the sam thing, i immediatly get uncomfortable and a little woozie. Also, the sun is killing me these days, i run to the car with a towel draped over my head, and block the sun with it the whole time im in the car. I cant figure it out either...but I feel ya sister...its terrible isnt it.

red246
07-09-2010, 04:10 PM
I haven't taken a hot shower in I don't know when! I'd love to cuz I know it would help my aching muscles/joints, but I can barely tolerate it warm some days. I never thought I would see the day when I willingly took a cool shower. My days of soaking in steaming hot baths are long behind me! :( So sad, I used to love them!

jmail
07-09-2010, 07:48 PM
I love the feeling of the heat on my joints & muscles, whether it's a hot shower, hot bath, or even (especially??) the hot car after it's sitting in the sun. However, I can't breath when I do that, and then I have a mild reaction, with joint pain swelling, etc... If I get into the sun, look out!

Nonna
07-10-2010, 05:29 AM
I had a sunstroke when I was 18. I can do hot showers and bath for a short period. I still get sick feelings if I don't cool off when outside.

Nonna

rob
07-10-2010, 06:24 AM
I really wanted to do a poll, but I can't figure it out. :(

I know that the majority of people I have talked to about this have sun sensitivities, but I want to know if there's anyone else who has honest to goodness heat sensitivities. Even my doc says that the sun is still probably the culprit. I just can't seem to get it through to her that I can be inside all day in the nice comfy air and go outside at night (you know when there is NO sun) if it's hot out still, I'm down for the count. Maybe not immediately, but you get my point. If I go somewhere where it's hot inside it's the same. If it's a nice cool spring/fall/winter day out - I can be outside w/out any issues, w/out any sunscreen, no rash, no chest pain, no dizzies, no nothing! I thought about getting one of those cooling vests, people w/MS sometimes use them - but they aren't cheep!

So, anyone else like me or am I just psycho? :) Woo hoo, I figured it out! Happy Dance!

Red,

Your Poll seems to be working just fine. Anyway, I am of Irish/Dutch descent and have very fair skin, so I have always been sun sensitive. I've been told by a Dermatologist that people with light skin, blue eyes, but black hair, are unusually susceptible to sunburn. Don't know if there's any truth to that as a group, but personally I will burn in 15 minutes without sunscreen.

I have not always been heat sensitive though. I used to live in Arizona, and I was also stationed in Southern AZ when I was in the Army, and I could handle the heat just fine after being acclimated. About a year before my SLE diagnosis, I suddenly found that I could not tolerate anything above 80 when it was dry, or 70 when it was humid. I start sweating, and even going inside with the relief of sitting in front of an air conditioner, I do not cool down for a couple of hours.

It is bad enough that my heat intolerance was one of the main reasons I moved from AZ to Maine, and specifically to a coastal region of Maine where the average high in the summer is only 65 degrees F. I was diagnosed with MS, on top of SLE nearly two years ago, and that has only added to my heat intolerance. I have no problem with cold weather at all, and in fact, cold feels really good.

Rob

debbie-b
07-10-2010, 06:49 AM
I am alot like Rob, the heat bothers me so much, that I have moved from Dallas TX, to
upstate NY. Finally, I have a life again, in Texas I didn't go outside ( except from house to car and back). I did summer hibernation, lol.
The sun has bothered me me for a long time, without knowing it, I avoided it most of my life.
Heat just rob's me of the little energy I have. When I am hot, everything slows down, it's like slow motion. Plus I get dizzy, nauseous and whoozy in my head. Not a good feeling.
We had a few days of 90+ degrees, my AC is working overtime.

Debbie

scubagramplit
07-10-2010, 02:11 PM
Sarah, you might want to check into having your windows tinted, I did with my truck and it makes a world of difference.

Hello.
I have extreme heat sensitivity as well as the sun. My dr thinks that mine is due to an underactive thyroid. But even though i've been taking synthroid to correct the problem, I still am extremely heat sensitive. Their are sometimes when I cant bare to take a shower because even the hot or warm team from it about puts me down. If i'm in a building that is warm its the sam thing, i immediatly get uncomfortable and a little woozie. Also, the sun is killing me these days, i run to the car with a towel draped over my head, and block the sun with it the whole time im in the car. I cant figure it out either...but I feel ya sister...its terrible isnt it.

rob
07-10-2010, 02:50 PM
Sarah, you might want to check into having your windows tinted, I did with my truck and it makes a world of difference.

I did the same thing, and it does indeed make a big difference.

Tootles
07-10-2010, 06:36 PM
I too have issues with heat. When I went for pool therapy, the room and water was too warm and I had to stop going. Also, it has been very humid where I live and I have had such horrible fatigue lately and I believe it is from the heat because I do not spend time in the sun.

jmail
07-11-2010, 06:49 AM
... I have no problem with cold weather at all, and in fact, cold feels really good.
For me, the cold is almost worse than the heat, especially my hands, feet & ears. Over the last 6-8 years, I've turned into a weather wimp. I don't even like the "change" in environment from hot-cold, etc. from when you go from the house to the car and back again. Sets me to coughing and sniffling... I don't like humidity, I don't like heat, I don't like cold, I don't like the sun, etc. lolol - However, I do like looking out the window, no matter the weather... Just wish I could participate.

SandyR
07-12-2010, 08:01 AM
I am much more sun sensative than heat but I am finding myself more and more uncomfortable in the heat too. More than the heat, it's the humidity. I just feel like I am being smothered by it.

debbie-b
07-12-2010, 09:06 AM
I am much more sun sensative than heat but I am finding myself more and more uncomfortable in the heat too. More than the heat, it's the humidity. I just feel like I am being smothered by it.

Sandy,

Feeling like being smothered, is the right analogy. It feels like somebody is giving me a tight bearhug. I hate heat and humitity.

Debbie

Ali_R
07-12-2010, 10:24 AM
I used to be extremely heat intolerant. Now I even seek out steam rooms! I thought it was just age. It is so odd, I had problems with the sun and heat my entire life from about 12/13 on. In my late 30's that all went away mysteriously, so much so we moved to Mexico and the heat was fabulous. I had to return to the states at 41 due to a critical bout with my health (pericarditis then pulmonary embolisms). I am here in the cloudy Pacific NW with a *new* diagnosis of lupus and I am wondering how I am going to deal with the sun this summer? So far I've been okay... hmmm. Are there lupies that can be in the sun?

Ali

SandyR
07-13-2010, 03:10 PM
Sandy,

Feeling like being smothered, is the right analogy. It feels like somebody is giving me a tight bearhug. I hate heat and humitity.

Debbie

I hate it too! In fact, I am procrastinating at work so I don't have to go out in the humidity but I am about to brave it.

Angel Oliver
07-13-2010, 05:42 PM
Yes i like heat n sun but suffer with both.....heat makes me feel yakky and breathing is hard sometimes,but also makes me feel panicky.I also love the sun,but rashes galore and very exhausted and headaches/migraines.....yet i still sit in the garden under the brolly lol.xxxx

red246
07-15-2010, 09:53 PM
Wow! Thanks for all the detailed responses! Sorry I haven't responded sooner, I had bronchitis. So much for my 2 wk "vacation" - boys were visiting their dad. :(

I wish I was in Alaska! I'm still tapering down off the 60mg of Pred they put me on and the heat on top of being hot from the evil steroids .............I almost feel worse now than w/the stupid bronchitis! UGH! I think I'm going to try and take cold shower.

gina
07-16-2010, 06:43 AM
I thought i was going crazy. The sun doesn't bother me, its the heat. yesterday i finally felt good in the morning was cool went to work felt great. They sent me to post office was really hot an humid by than. It ten minutes when i got back i got sick to stomach, fever came back an i was ready to go back to bed. We have been having really hot an humid days here which doesn't happen until around august. I couldn't understand i would get up feel fine go outside than all of sudden was sick again. So i now i feel better the heat makes me have little flares. now if i could just stay inside all summer lol

red246
07-16-2010, 09:46 AM
I thought i was going crazy. The sun doesn't bother me, its the heat. yesterday i finally felt good in the morning was cool went to work felt great. They sent me to post office was really hot an humid by than. It ten minutes when i got back i got sick to stomach, fever came back an i was ready to go back to bed. We have been having really hot an humid days here which doesn't happen until around august. I couldn't understand i would get up feel fine go outside than all of sudden was sick again. So i now i feel better the heat makes me have little flares. now if i could just stay inside all summer lol

Gina - If I could stay inside all summer where it was well air conditioned, then i would be good! We have window a/c units, which help, but not enough.

I just don't understand why I can't seem to get it through my doctor's head that it's not the sun! I mean, if I can go outside ALL day in the winter, when it's COLD and still SUNNY and not have any issues - then doesn't that kind of mean that it's the HEAT and NOT the SUN???????? HELLO?????

Okay, I think I'm going to go up to my husband's work and stand naked in the freezer! Maybe I'll just stay there all summer! lol

jmail
07-17-2010, 04:51 PM
The sun, for me, is usually a "direct" kind of thing. If I don't have exposed skin, my body usually leaves me be (unless I'm already "flaring"). But if I go out in shirt sleeves and no hat for much more than a few minutes, look-out! I'll react every time. The angle of the sun in the winter is different from the summer's sun, hence the difference in temperature (in addition to the shorter days in the winter), and the heavier clothing probably helps.

SandyR
07-20-2010, 06:38 AM
I think I'm going to go up to my husband's work and stand naked in the freezer! Maybe I'll just stay there all summer! lol

Well that would be one way to solve the problem! LOL.

melly c
07-26-2010, 06:21 AM
Hi
I too see im reacting to heat,aswell as sun plus lights on stores,hospitals flourescent types,halogen also,plus energy bulbs used in uk.
i changed my ebdsdie light to old style lightbulb much better.
started wear sunglasses indoors at meetings for church etc made difference but i dos till come over unwell if in room to hot for me.
to point nearly passing out.
melly c

Kimmers
07-27-2010, 10:55 AM
This makes me feel better. I was thinking I was crazy! We've skipped a number of gatherings so far this summer, when we're invited somewhere the first question I have to ask is if there is shade wherever we're going, if not, we aren't going. But, even in the shade with tons of sunscreen, and umbrella and clothes that cover every inch of skin, I was still getting sick from just a few hours outside. We went to a BBQ this weekend and I was incredibly careful to not let the sun touch me for even a second and we still left early because I turned bright red and got really dizzy and nauseous. I used to love summer, but I feel like a prisoner now!

SandyR
07-28-2010, 07:06 AM
This makes me feel better. I was thinking I was crazy! We've skipped a number of gatherings so far this summer, when we're invited somewhere the first question I have to ask is if there is shade wherever we're going, if not, we aren't going. But, even in the shade with tons of sunscreen, and umbrella and clothes that cover every inch of skin, I was still getting sick from just a few hours outside. We went to a BBQ this weekend and I was incredibly careful to not let the sun touch me for even a second and we still left early because I turned bright red and got really dizzy and nauseous. I used to love summer, but I feel like a prisoner now!

I feel that same way. This weekend was my sister's babyshower. It was outside and it turned out to be exceedingly hot - 110*. Thankfully the shower started later - around 3, but all the set up that morning and the day before had me hiding in the house for a good portion of the beginning of the shower feeling like a prisoner of the sun too.

Hillbillie
08-02-2010, 10:37 PM
I am a member of the Love your A/C club! I cannot be outside for more than a few minutes if it is hot. I can't take the heat. My face gets red like a sunburn and my entire body feels like its a glowing ember. If at all possible I get inside and take a cool shower. Or at the very least wipe off with a cool cloth. That cools me down and I am by that point worn out. The heat sucks the energy out and leaves me exhausted. The sun only makes things worse. I can't be outside, so I have to avoid all things in the great outdoors, unless its an overcast cool day. I have seriously thought about Alaska... and cooling it there but then my hands, feet and ears will ache. Isn't there a state for Lupies?? Billie

jmail
08-03-2010, 01:44 PM
The desert southwest - but in the mountains, to avoid the heat... I envision myself and wife in a cabin, with the San Juan Mountains visible from the front porch... lolol

dawnieruns
08-13-2012, 07:43 PM
I have always been very active outside, loving the summer especially. Since both Sjogrens and SLE entered my life a few years ago, I have found that the heat and sun are becoming more and more detrimental to me =( I ran a few miles tonight and came home wretchng, vomiting for quite a bit. I know it was related to the heat, even though I ran close to 8pm! It breaks my heart. I'm a 41 year old runner and a triathlete.

LenaT14
08-13-2012, 09:04 PM
The heat is my enemy when I'm not feeling well, the actual sun has no negative effect on me aka rash etc like most people but when the heat is in full force and I don't feel well then just consider me worthless! Its pure misery...but maybe I'm crazy too :-)

tgal
08-13-2012, 10:42 PM
Many of us don't get actual rashes from being in the sun. What happens is that it can throw us into a flare, or period of feeling very bad. I live in Texas and it has been between 90-105 for a few months. Even getting out to go to the store can put me Down for a couple of days

steve.b
08-14-2012, 04:34 AM
i am sensitive to both sun and heat.

i love a mild spring day.
lazing in the filtered sun is good for me.......
but over exposure happens very quickly.
i go from no effect.... to second degree burns.
no in between, either no effect, or severe pain.

even hot showers, i come out in a bright red.
heat also slows down my reasoning ability.
also any increase in my core body temperature,
and my bowels go into overdrive. (not a pretty site).

Desleywr
08-17-2012, 06:10 PM
Just a question.
This thread has had over 3,000 viewers and only 30 people answer the poll. Does this mean that most people on here don't have lupus or what?

steve.b
08-18-2012, 12:26 AM
Just a question.
This thread has had over 3,000 viewers and only 30 people answer the poll. Does this mean that most people on here don't have lupus or what?

at any given time we will usually have 2 to 10 members on the site.
at the same time it is not uncommon to have an extra 200 visitors.
a visitor is some one who is not a member, and they cannot comment.
over 3,000 people have read this, but only 3o members have commented.

rob
08-18-2012, 10:28 AM
Steve is correct. And to add to what he's said, in my experience with previous polls here, 30 votes sounds about right for the amount of time the poll has been open. Something else that can add to the view count, is spammers. They constantly sift through older threads and look for possible opportunities to post advertisements. That can artificially inflate the view count significantly in a very short time.

Rob

seeker
06-21-2013, 10:47 PM
im so glad to read that im not the only one who experiences heat intolerance. I've appealed to my doctor many times about my intolerance to heat and she only suggests that I increase my meds for peripheral neuropathy. I've done that but not experienced any real relief.

I cant handle anything about 70, whether indoors or out. I don't use heaters and ive worked many places where people will have the office thermostats set to 80 or 85.

I've worked in Alaska, the cold can be too much. it's bad for my bones. the perfect place was san Francisco where it doesn't grow warmer than 75 or so. right now im in Arizona and I think im going to die, seriously, it's just doing me in. only someone with lupus with understand that.