Hi, I was wondering if anyone experiences this, (apart from EM, which I know does) does anyone in there whole body if your warm you are the warmest of warm and are real hot and sweaty? And if your cold, your the coldest of cold! and are shivering? As I am this way all the time, I wear a big jacket so I’m not shivery cold but then I go in side like a shopping mall and I’m unreal warm and sweating! People I’m with can be cold and I’m really hot or people are hot and I’m shivering cold! Im not talking about EM areas just in general, I have only been this way since my EM got bad so I was wondering if there was some sort of link or else it’s jst me!.
Hi Lauren
I know I have EM even though I didn't have a diagnosis. My doctor just ignores it as I have Fibromyalgia and she says that's part of it.
I too like you Lauren have these hot/cold episodes. I had a sympathectomy many years ago for excessive underarm sweating. It stopped the problem alright but I didnt know at the time what was to follow later in my life.
My feet seem like they are on fire when I am active for a short period of time or if I consume anything hot e.g. tea or a hot dinner. My whole body overheats when I go into a room with the heat turned up so I have to start peeling off clothes, take off my socks and shoes, to cool down.
The other extreme is when I'm not moving around I get so cold, and find it impossible to warm. I put a folded blanket on my knees and a hold a hot water bottle in my arms just to stay warm. Im cold/hot when everyone else isn't.
Im not on any meds as my system doesn't seem to cope with it,
I'd appreciate any suggestions anyone might have
I live in Ireland
Hi I have exactly the same prob,and find embarising at times,specially wen at checkout,do u feel at times cos peaple don’t no that u being lookd at like u an alien,it just hits me I get really hot,red,sweaty,dizzy,and start to swel
l,
I am definitely that way. There is only about a 2 degree range of comfortable temperatures for me. Outside of that and I'm having trouble due to being cold or hot.
Not much I've tried has helped with the problem, but it is more manageable after selling my drafty house and moving into a one-level condo with central air conditioning and a digital thermostat that I've learned to set exactly right for my activity level. I do often have to adjust it up or down one degree, sometimes as much as 4 times per day as the outdoor temp changes and my activity level changes.
It's also helped some to switch to natural fiber fabrics (and I don't mean bamboo) in layers. Polyester and polyester-cotton blends can quickly make me too hot, so they are really bad as throws, bedding, throw pillows, upholstery...I've switched to mostly 100% cotton or flax. I do have one thin bamboo throw for when I'm very, very cold. I also seem to be allergic to polyester (or the formaldehyde used in it's processing or finishing). I know for certain I'm allergic to formaldehyde (tested). When exposed to F, besides getting itchy skin the following day or burning eyes, I am also much more heat sensitive.
But I certainly don't have my hot/cold reactions under control. Still working on that problem.
BTW - My flax throw was made in Ireland. I'm in the US.
Hi i can have the same it happened last nite and always seems to be once in bed.
Hi agggie I was diagnosed with em 20yrs ago by a specialist but when i tried to tell my gp's here in nz i was put into the 2 hard basket and diagnosed with fibro. since moving from chch to a blenheim in nz i have never had fibro and my womens condition called pcos symptons is the cause not fibro. finally here in a new town the dr's listen and r trying to help me with the em.
Where do you live in ireland as most of nz family orignate from ballymena.
Aggie said:
Hi Lauren
I know I have EM even though I didn't have a diagnosis. My doctor just ignores it as I have Fibromyalgia and she says that's part of it.
I too like you Lauren have these hot/cold episodes. I had a sympathectomy many years ago for excessive underarm sweating. It stopped the problem alright but I didnt know at the time what was to follow later in my life.
My feet seem like they are on fire when I am active for a short period of time or if I consume anything hot e.g. tea or a hot dinner. My whole body overheats when I go into a room with the heat turned up so I have to start peeling off clothes, take off my socks and shoes, to cool down.
The other extreme is when I'm not moving around I get so cold, and find it impossible to warm. I put a folded blanket on my knees and a hold a hot water bottle in my arms just to stay warm. Im cold/hot when everyone else isn't.
Im not on any meds as my system doesn't seem to cope with it,
I'd appreciate any suggestions anyone might have
I live in Ireland
Hi Lauren,
I am in the camp of folks who are undiagnosed but fit the description of EM exactly (just can't find a doctor who has heard of it before). My EM showed up about a year ago (last winter - flares are much worse for me in winter because of the extreme range of temperatures). All my life I have been very temperature-sensitive, but perhaps not quite to the degree that you are. I have always gotten cold/hot very easily and get embarrassed when my face is sweating and no one else around me is. I don't really sweat more than normal - it just starts at a cooler temp than for most people. I also get freezing cold very easily, always before everyone around me. All my life my hands and feet have gotten icy cold very easily. My EM is only in my toes (so far... knock on wood) and they still get icy cold in the winter when they're not flaring up. It's so frustrating trying to find a comfortable temperature when they're always like ice or fire!
Hi, Lauren.
In addition to EM, I have Raynaud's Disease which is almost the opposite of EM... I'm cold all of the time and to the point where my fingers and toes go numb and turn this weird white color that make them look dead. I can have on layers of clothes and be under a blanket and still be shivering. The only way I can get warm is to warm up from the inside with hot chocolate or other warm drink.
However, I have to be careful not to get too warm, because then my EM flares! I have spent the last three months being too cold, too cold, too cold, then suddenly trying to get all of my clothes off because I'm now too hot! It's been a roller coaster ride to say the least.
What you described above sounds like what my life has become lately. (My diagnosis is fairly new.)
KC
i have the shivers, and after a flare it feels like i regain my feeling of temperature, its weird, but i do feel super cold once i get all the way cold