Am I the only one who is hot all the time? The only place I perspire now is at the back of my neck. It is so embarrasing to have my hair wet in the back like I have had a shower and didn't finish drying my hair. I live in the deep muggy South so I never seem to be completely cool. Any suggestions other than sitting under a fan all the time. I have about 3 weeks left to teach school and one day is a field trip that I have no idea how I will endure. It is to a farm and I did not plan this trip but was told my students needed to go. Sorry for the complaining. I know other are dealing with stuff also.
Redetha, I know they make these things you can wrap around your neck that are suppose to cool your body down Im not sure what they are called. I saw them avertised on TV. I dont like the heat either and it is really hard on by 4 year old who has SJS. Hugs and Kissess Jonnell and Jenna
I feel hot all the time (I used to be constantly moaning I was cold before)... I not sure I can suggest anything.. I wear less than I used to!!
I'm another one whose thermostat is completely off and I get so hot so easily! It can get pretty embarrassing especially at work.
I use cool items on my head, neck and face a lot, I use fans very often at home and at work during all 4 seasons, and I love the A/C.
In fact my central A/C died last fall right at the end of the season and I am having estimates to get it repaired and I'm about to have a heart attack! I live in an older mobile home and they are not easy to cool...plus I don't want to put ton of money into this...but I don't think I have a choice. Window units just wont cut it and will be more expensive in the long run...so I may have to make the jump and make payments and hopefully get my money back if and when I decide to move.
Sorry I went off on my own rant about the A/C....that's my latest "crisis"! lol (http://www.freesmileys.org/smileys/smiley-signs091.gif) (http://www.freesmileys.org)
I use fans all year long--It is hard on the rest of my family sometimes. At school, I can control the AC in my room. I try not to freeze out the kids and my aide. I teach Special Education. I am retiring but will be back for another job my principal wants me to do so it will be easier. I will miss my kids though. Special Education is definitely my calling in life. I will also sub some for the teachers for the deaf kids. It is hard to find subs that use sign language. Anyway, thanks for listening to me moan.
Hi Redetha
I just wanted to say that it's not moaning! Never, ever apologise for letting us know how you are feeling. It's what we're all here for: one day we need to vent, and the next day we're offering someone else a shoulder to cry on. It's what SjS World is all about and why we're a family - which you're part of!
It sounds as though you're a gifted teacher and your students are lucky to have you. No wonder your headteacher doesn't want you to retire completely! I used to teach History at university level and I miss it more than I can say. There's nothing like it for job satisfaction.
Take care - Chickpea
Hi Redetha,
I'm another one that dislikes the heat, but I also don't like the cold; seems that this body of mine is getting so fussy at this stage of life. I wonder if my body will ever settle down again?
Nope, you're not moaning, your just letting it all hang out as they used to say back in "the day"! ;) :D
Patze
Another one here. Its more than disliking the heat. Many of us have autonomic neuropathy and part of that means that our automatic way our body processes and controls heat is whacked. I've heard of MS people having the same problem. I absolutley cannot tolerate the heat and I live in a very hot dry part of California. My doctor has even recommended that I move to a cooler climate. I'm dreading the upcoming summer.
I do have some of those scarf like things that you can buy that have a gel in them and you soak them in cold water then wrap them around your neck. That seems to help me somewhat.
I also only sweat from the head. The rest of my body barely sweats and I have night sweats from the head only. No one has ever been able to explain to me why this happens but many of us report the same occurance.
Steve
Hot flashes during menopause were something I could not live with and I went on Premarin which helped.Now with SJS I have stayed on a very low dose even though my Drs. didn't like it much.Several times I tried without it and couldn't cope without.I've run out and know my GP will not give me a new script.I'm out of menopause so this is SJS.I can't sleep without waking constantly sweating.My DH can't touch me without another one starting up.I'm going insane with this.I want to go screaming from the room when they come on.I've got to find something to help so I can at least cope with it.I have terrible heat intolerance.Cold weather makes me ache but I forgot about heat intolerance and couldn't wait until warm weather.
Ruby
Thanks for all the replies and support. I hate when I feel like I am the only person in my school that is hot. Today is Monday and I am at school. Already, my hair is wet and I am trying not to freeze the kids out of the room. This is a really great place to visit. I thinks it help me cope with SJS. Everyone, thanks !!!!!
I often feel like my face is burning hot. And at night my feet burn really bad. But otherwise I absolutely love summer and warm weather. I hate the cold, dark winter (upstate NY).
I also suffer from the heat! My head sweats and hair gets soaked too! I run from the sun because i feel like it's frying me. My eyes are so dry the sun just kills them. I went to Florida to get out of the cold because it makes my R.A. flare so bad but when i got to Florida and in the sun my whole body broke out in a rash! I could only stay out and in the shade for very short periods of time! I feel ill when i get hot! I live in the south and so it's going to be a summer inside again!! ??? I'm so tired of all these strange symptoms and feel like no one understands until i visit here. Thanks to everyone for their venting, sharing and imput. This is a fantastic sight and i'm so happy i found you all. Thanks for caring and sharing!
HI,
You can get something called a Chillow, which is a cold pillow thing which can keep you cool when you are sleeping, I imagine you could use it to cool you duiring the day by using it like a cushion?
I don't have on myself yet, but was recommended it by a friend who swears by them...
Leah x
Uh Leah, that sounds wonderful! I'll have to look them up, that is if I can remember! ;) :D
Patze
Hello sweating Sjoggies!
Does anyone else find that the cold sweats start when they're talking? I can be chatting quite happily and then I'll be covered in cold sweat, to the extent that my hair is dripping wet. This is particularly embarrassing with doctors because I get flustered by the sweats and then lose my train of thought and then I'm more embarrassed and my words come out wrong ...
I also wondered whether anyone's face gets very cold suddenly and stays that way for hours? I can have a warm, red face for a whole morning and then from mid afternoon to night it's freezing cold.
Love to all from Cold-Cheeked-Chickpea
In social situations I can get a little anxious which starts the face sweating and then the embarrasment of that makes it even worse.
About the heat sweats at night. I'll often wake up in the morning at rate the night calling it a 4 sided night which means I've turned over both of my pillows to each side because they were wet. But why do we get these head night sweats. Does anyone have an explaination?
I've never heard of a chillow but that sounds lovely.Only problem would be at night waking up and throwing it off and on again as the chills then the heat comes and goes.
Ruby
I have said for years that my thermostat was broken. I get very hot and sweat sometimes and other times I get cold and can't get warm. I too have night sweats. When I mentioned these to my doctors, they write them off as menopause.
I am 6 years past that so I know that isn't the cause but doctors have the equation:
older woman X hot = menopause
I feel like I'm frying in the sun. Always looking for a spot of shade.
All this does interfere with normal life doesn't it?
I was very interested in reading Steves comment about autonomic neuropathy. I had not heard of that before.
Linda
Billydude you can include me on the head sweats..i remember during my last pregnancy a million years ago
i was due in Sept.so was going through a summer of fun...but everyone around me was pouring sweat..
i didn't even sweat from my head..it was really weird..and this was pre-dx of SJS..although after my
daughter was born i went into ICU due to blood pressure problems at the age of 25. I really wish some of these
specialist would read this forum I think there are a lot of connections they could find with just the info
we put on. Again don't know if the two connect or not.
JJ
Hi CHickpea
I think I am a bit like you. In the mornings and afternoon, my feet freeze. My family call me the sock queen - I have so many pairs of thick fluffy socks. By bedtime, my feet are burning up and I have to poke them out from under the duvet
I have Raynauds and also PN. Do you think it's a combination of the two?
Kathyx
One of the articles here on this site talks about the associated neuropathies that go along with Sjogrens. One of them is autonomic neuropahy anhidrosis. This article then explains what that means thus why we have facial sweating.
http://www.medscape.com/viewarticle/473206_3
so it could be the sjogren's! ah-HA! i cannot tolerate heat, and if the temp is above 72 i'm starting to feel uncomfortable. it is 82 in my office now and i feel sick. i used to love summer, but now i dread it because of the heat. we keep our home at 66 during the winter. last night i had the a/c on 68 so i could sleep. :o my pcp has done the same -- menopause. hello, done with that a long time ago! i spoke too soon in my other post, i guess. the heat intolerance is one thing on my list that hasn't been addressed (correctly) yet.
Oh yes, the SJS causes us to have overheating. I really like it when my hair is so wet in the back--ha. No, just read the posts and you'll see that a lot of us have the heat problem. Good luck with your doctors. I,m not sure what can be done about it except use the AC. Hugs, Redetha
hi All
I have been told my night sweats are menopausal, but I have no other real symptoms of menopause. Sometimes I just absolutely fry. Normally, though, I am frozen, whatever the temp. So maybe its the sjs?
Well.....as a man I can say its definately not menopause. I'm sitting here typing with my forehead and hair drenched but anything below the neck is dry as a bone. You could light a match under my dry underarms.
So.....NOT NOT NOT menopause.
Steve
P.S. Looks like that link I gave needs a sign in but its a very simple sign in process. Just enroll and then read it. Its a little complicated but puts an answer to this mystery we all have.
I too live in the deep south, where we chew the air before we swallow. On most days I feel over-heated, which is odd because my basal temp is usually between 96-97 degrees because of hypothyroid and Hashimoto's. This week the temp in the house was 76, which should be comfortable level, but I had to turn the fans and AC on just to stop sweating. Several times a month (3 nights in row this week) I wake up with night sweats. If you find an answer, please let me know!
Alex, since your email address is panhandle-- we must live realitively close. I live in Mobile so you know that being close to the water the humid is the pits. All I can do is suffer through the heat. We put a generator (full house) on to out house. After one of the hurricanes and without ac for a week, it was worth it. I really hate that I perspire only on the back of my neck. When I am hot my face turns beet red. It is embarrassing when I am out in public. ::) Good luck and keep posting. Redetha
I feel hot all the time too- thought it was just me!
Fans all round please !!!!
Been having the head sweats for ages, and have recently come off HRT after 17 years so am also having the hot flashes to complete the fun. I've been taking sage and do find that it helps with the intensity of the flashes, and also not as frequent now.
Wen x
Wen
What made you decide to come off the hrt? I found black cohosh good for the flashed, but you can't use it longterm.
Kathyx
i also get very hot and very cold. i'm basically either sweating or freezing, rarely comfortable. the worst part is i sweat a lot, and on my upper lip! i'm thinking about asking my doctor about getting botox there to help stop the sweating like people do in their armpits. I have no idea if this is related to SjS however.
Hi Kathy
I've been on HRT since total hyst at 29 and have been reducing my dose for past couple of years, it just fel the right thing to do after been on it for so long. So far I've been very lucky and apart from the hot flashes have had no problems at all, mind you I had all the other problems in my mid 20's when my ovaries where failing so I think I'm past all that anyway.
I can go from tropical moments to freezing cold in minutes, oh the joy!
Wen x