feeling sick in 80 degree weather/sun. this is ridiculous. please help

[valene2009]

ok say it was 82 today and sunny-a high for us. but i felt sick after a counseling apt and just had to come home--i dont sweat anymore because of sjogrens and am so sensitive to the sun.
i feel like a freak. i see people in their 80s walking in this weather and i am 37 and feel faint and shallow of breath..  i ended up in the ER 2 years ago so i dont push it anymore but i feel like im so odd.

When i went to the ER i wasnt even on Plaquenil yet.. i was on Doxycycline.. but i have heard that the sun sensitivity occurs in a lot of people w/ sjogrens/dryness probs?  so i guess i am just that lucky..

do any of the rest ofyou go through this??? thanks..

[Dolly Dimples]

Yes Valene, I have been very sun sensitive for years. It's not caused by Meds, but some Meds can bring on the same symptoms..  I have never been abroad, dont go anywhere that I cannot shelter from the sun,  Worst of all I am just as sensitive to the cold, so I am miserable both Summer & Winter. So I do sympathize with you.   Dolly

[valene2009]

thanks Dolly.. you made me feel not so alone.. i feel for ya... i live in the states-the midwest -almost the south and we basically had no snow which was great but its already warm/hot here.. and this summer we will get to heat indexes of 110.. ughh.those are the days/weeks i stay in and my parents or sis has to run errands for me like the market and such.

yeah i figured that i was on doxy for years and didnt have issues with the sun-being out in it and i went to the ER before i ever took plaquenil so i had already progressed at that point..
i guess i will do my best to stay as hydrated as possible and carry a water bottle w/ me where i can cool off.

do you not sweat anymore either?? thanks for responding.. i really really appreciate it.. i am trying to look at the bright side-i have all my limbs, i can walk, i have other aspects of my health that are ok...a great family and friends, etc.... its been 5 years for me and i am finally realizing i gotta accept this as part of my life but it doesnt define who i am!

[trejonina]

Hello,I'm also on doxicyclene,please,please tell me why you are on it,to treat sjongrens????I'm also very sun sensitive,wear  mirrored sun glasses,hats and long sleeves for protection,drink lots of water and avoid going out noon.

[valene2009]

i use it for my MGD-meibomian gland dysfunction in my eyes...ocular rosacea.. it is supposed to cut down on the inflammation-dont know how well it works though. it also helps my rosacea i have everywhere-if i take a hot bath boy do i turn red--and when i used to wash my face before Doxy it would be beat red for 20 min not it just gets a little pink and goes back to 'normal' fairly quickly

[Pisces24]

What do you think of someone who gets Walking Pneumonia in JULY!!!!!!!!!

A few years ago I had that and I thought the dr was nuts!      He said you can get it any time.  Thing was I had volunteered for a 4th of July event for my charity group and my dr said no way.!     I guess stranger things have happened.

[valene2009]

o wow.im sorry.. i just hate having to be indoors someof spring and most of summer... ughhhh. o well.thanks tho!!! sorry u got that..

[eye2dry]

Valene.
I too stay out of direct sunlight as much as I can. I try not to do strenous stuff outside in hot weather between 10am and 2pm...like gardening stuff. I take walks early am or early evening.

I wear sunscreen, keep hydrated with water and I do wear sunglasses and a floppy type hat. I look much older than I am dressed this way...but I can get out like everyone else can. I never had to take these precautions until I got sjogrens going towards 2 years now. Always went down south to beaches and Mexico for vacations sunning myself. on tours to outdoors places down there. Tsk..tsk...

I no longer sweat either...I quit using antiperspirant a year ago..so I have to be careful not to overheat. But..I really do love summer over winter.

Take care outdoors.

eye2dry

[valene2009]

thanks eye2dry. i cant walk in bright sun unless its under 70 out and a little chill in the air... i def cant walk fast. but i can do the elliptical.  i get ill just walking to my car in a parking lot.. its pitiful.. i guess i have to start carrying around my water bottle to squirt myself..
i wasnt this bad until a few years ago.. the first couple of years i knew i had sjogrens i could still handle some heat and take walks.. its just gotten worse.

i guess i will count my blessings on what i do hvae..that is all we can do..thanks to everyone answering me and letting me vent..

[KarenR]

I've read a few times about people on here not being able to sweat. I'm just the opposite. When I started having symptoms a few years ago one was that I sweat a lot. The slightest activity makes sweat drop from my head. Running the vacuum makes me sweat so much that I have to carry a dish towel to wipe the sweat away from my eyes. Within about 5 minutes I am so wet that my clothes are soaked. This even happens when I am just doing paperwork at my desk. I used to love to wear sweaters in winter. Now I am wearing short sleeve shirts all year and had to run a fan at my desk all the time. When I asked my neuromuscular doctor about all the sweating he tested me for Lambert-Eaton syndrome and lo and behold I have the antibody for that also, along with the positive ANA for lupus, and the positive Sjogren's. He told me my immune system is running amuck but does not know why. Now I have a new rheumatologist who has decided to go back to the beginning and repeat a lot of the testing I had in 2008-09 that showed that I had Sjogren's. She said we have been going down this road of treating me only for Sjogren's for several years now and perhaps it was time to step back and see if anything else has jumped on board. I meet with her again the first week of April. As Joe always says, it may be that Sjoren's has brought along one of its friends. Regardless, I sure would like to know what is making we sweat like crazy. 

[Suzie]

So glad it's not just me. So sad we all suffer. 

[gurs]

The summer/heat seems to bother me more than the freezing cold. I pretty much cant go outside at all anymore. So disgusted..end up in bed
most of the day under my heating blanket, even in the summer. When I try to push myself a bit, get so tired out so fast. The sun is the worst though, triggers headaches. Allergies and the migraines, etc...need to live in a plastic bubble. I dont sweat either. Getting tested for POTS now..lovely!

These autoimmune diseases and syndromes are the worst!!!!!!! I realize cancer is bad, but living like this has been a constant nightmare.
No one seems to understand either..

yes, so sad anyone has to suffer.....need more research etc..

Gursie

[cargillwitch]

I stopped sweating years ago.. about the same time my sense of smell all but disappeared( do miss smelling those spring flowers!)

But I deal very well with hot weather and sun- love it in fact. It's like I come back to life again when it gets hot and sunny

live in Canada so the winters ( with Raynauds) almost do me in.

I am not on any meds so that may help with my high heat and humidity tolerance

[Scottietottie]

Hi Valene 

I live in the UK where temperatures very rarely get as high as 80. I know I wouldn't like it. I don't even like it when it's 70. I used to be a sunworshipper but those days are long gone.

Once I got a beautiful deep tan. Now I burn up and get headaches. You are not a freak. It's part of SjS. Cover up, lather on the sun cream, wear a hate and dark glasses and stay out of it as much as you can!

Take care - Scottie 

[susan]

You are not alone! Although I sweat, I feel ill if walking or gardening, etc. in the heat. Yesterday, it was in the low 80s, and I struggled to do my dog walks. Today, 70 ish & I feel fine. (fine is relative, isn't it?) In the heat of mid-summer, I just exercise early in the a.m. & late in the evening.
The feeling I get is kind of faint, weak, and like my limbs & body are very heavy:(