Hi All,
First of all I am so glad to have found a place where I can ask almost anything. SJS comes with such weird symptoms!
I was diagnosed in 2006 but I know I had it a lot longer, because of eye issues and dental issues.
In August of 2006 I was working in an office and the AC was not working. Okay here comes the strange question. It was a super hot day, and after working for about 4 hours I started to get nauseated. I kept drinking water and that helped. But after awhile I noticed a smell, not unlike vomit. I soon realized it was emanating from me. Very embarrassing since I was working with other people.
Now whenever I get overheated I notice the same kind of odor. It doesn't seem to matter, even if I just showered or what deodorant I use. If I get overheated I get nauseated and then the smell makes me feel even sicker. I do try to stay in climate controlled areas but sometimes you just can't.
Does anyone else suffer from this? I suppose it has something to do with my sweat glands not working. Any solution?. ::)
Jules, Boy, that is a weird one. I am curious if you have asked a friend if she can smell the same smell on you. You know, it could be that with the stress of the heat and the sweating your CNS may be sending out strange signals to your nose/brain and it may be something that is "only in your head) literally. You may be having hallucinatory odor issues. I don't know if there is such a thing as I just made that up, but sometimes our brain will think we are smelling gas, fire, smoke or other strange smells.
When we sjoggies get warm all sorts of strange things happen.I got over heated years ago when I was young and nursing and doing lots of walking, lifting patients, etc. that I would get faint and needed to cool off fast. I found that if I took a cold wet washcloth and put it around the back of my neck my brain would cool off and so would the rest of me. I would have to turn the cloth over periodically or rewet with cold water but it saved the day. I wonder if some of those very thin small cold packs for the lunch coolers would work where you work. There must be some that are small enough as to last a while. Might have to make a little cover for it and keep them in freezer at work. Just a thought. Sorry I can't answer your specific question. Irish ;D
Jules, I think this can happen and does. I have nothing firm to refer to, but maybe 10+ years ago, I had a problem with an ammonia smell coming from me. I know ammonia smell can come from urine, but I wasn't wetting my pants, then or now. The closest thing I could mark it up to was somehow it was my breath that smelled like ammonia. I told my dr about this, and with a brushoff, never pursued this. I am convinced this smell was from something going on inside me. I was apparently healthy at the time, no IBS, ulcers, infections.
Then there is Carnitine (it's a supplement my rheumy gives me) and you'll have to look it up if you want info on it because I really can't give a definitive on it. But, it tells you that it can eminate an odor from the body. WOW. Does it ever. I took it before and stopped because it gave odor off and it was just a very nasty smell.
For yourself, you might try dousing yourself with talcum powder. I know it's a trick when you wear dark clothes. But shower to shower for one would not have a real ladylike scent. I'm sure they have it for men. Lucy
I have smelled that ammonia smell like three times.It freaks me out.I walked all around my room trying to trace it.I brushed my teeth,flossed.used mouthwash and started all over again.Really weird.Yes I am so heat intolerate I can't stand to think the odor is coming from me.I do the sniff test but I can't tell.I want to run and shower to be sure.I haven't asked anyone,it goes away and I think I imagined it.This illness has some weird ,well stuff.
Ruby
Thanks for the answers Irish, Lucy, and Ruby,
Thankfully this is something that has only happened 4 or 5 times now, and it is always if I get really overheated.
It is a real odor, I asked my husband and he concurred.
I used to take carnitine also, but that gave me more of a vitamin odor.
I have gotten night sweats and hot flashes since my late 30's. I went through menopause in my 40's, I am 55 now, and never noticed the odor until that one day in August.
I think hot flashes and night sweats come with SJS. I've had RA for a long time and as bad as it gets, sometimes I think it is a piece of cake compared to SJS.
Maybe the odor has something to do with being on Arava. That stuff says in your bone marrow for 2 years, and I had to drink some kind of horrible powder to get it out of my system. This was in 2006. I had a bad time with the Arava. I was laid off from work and it made me sleep 12-18 hours a day. I got really sick from it too.
But because of it I was diagnosed with SJS. So even when bad stuff happens you learn and grow from it.
Well take care and smell me later.
Jules
"Well take care and smell me later", Jules, you are too funny! :) :D ;D
Patze
Yeah I have a very warped sense of humor but it gets me through the worst times, especially since I have no tears and can't cry.
Jules