I have had it, lately, with feeling cold. I know it is winter here, but I have the heating on so high, plus a log burning stove, that my husband feels he needs to sit in shorts and t shirt ::) I am freezing cold to the touch, my skin is cold all over and I get goosebumps and the feeling of a "wave" of coldness over various areas of my body. I have had this problem from time to time for years now, even when sitting on a carribbean beach ;D But lately, I have been like this for a number of weeks :'(
I am really, really fed up of being so miserably, utterly cold. The only way to get warm is to get into a very hot bath, or under the duvet (literally with the duvet over my head). This is clearly not normal (I don't think). Any clues, anyone? Feels a bit lame to tell the doctor I am cold, but I am literally freezing!!!!!
That is true for me too. I am on Plaquenil and that interferes with my ability to tolerate heat and cold. I hit the baths too. Seems to help. My right hand is freezing all the time especially.
Jaygee, I could have written your thread!
It is a thing that sends one over the top, and I am so sure that it goes a along with SS.
I have sat tonight watching TV for while, and kept turning around to see where this coldness was coming from.,,
although I knew perfectly well that it was me and this stupid body..
This has gone on for years, but this Winter has tested the limit, (see above thread)
I have repeatedly told my Docs of this strange phenonomen,
and they look at me, say "you are senstive to the cold" YEA right!
No one has taken me seriously about any of my symptoms,
just say there is no cures, put the drops in and use the mouth gel,
come in a years time for review.
Sometimes I marvel at getting to 73, so guess I'm lucky in a way...
Know how your feeling, hugs Dolly
Knew it wouldn't just be me ;D
But it makes you feel so miserable, doesn't it? Surely it can't be normal to feel and be this cold all the time ???
My husband took me out to my favourite restaurant tonight. All the ladies in there had strappy tops on, but I had to keep my coat on even though our table was next to a radiator ::) It is embarassing to be this cold!!!!! xx
Well It isin't normal Jaygee, then we are not normal! are we?
I do believe that Navy Dad has been complaining of this too,
but I cant recall what his Docs said it was..
will look back on the threads later.
It certainly does play havoc with our social life,
we went to the garden centre for lunch today, same thing I moaned about the cold all the time.
I was freezing in the car , had a fleece wrapped around my legs,
Then tonight I had that weird coldness around the sitting room all night,
I'm now in the bedroom next to radiator, which is now affecting my eyes, but my bod is now warm.
Funny thing too, when I do any exertion, such as hoover or jobs around the house, then I am on fire!!
It's a pain, and I am tired of it ruining my life, Dolly
I pray in your case that its something simple,, what ever simple is, but in my case it started out with the feeling of water running down my leg,, or it feeling like it was wet, it came on so slowly,, I didnt really understand what was going on other then doctors telling me it was a bad back,, but when it progressed up into my arms and torso,, thats when a punch biopsy showed small fiber neuropathy, Like I said,, I hope yours is somthing simple,, and doesnt progress into a pure sensory neuropathy,, its a literal heck on earth
I have this too and living in Michigan doesn't help. I keep an electric throw on the couch and I sit or lie on the couch wrapped in this alot of the time. Other times, i have layered clothing. A sweatshirt over a short sleeved blouse. Then comes a hot flash and the sweatshirt goes off.
I am also on Plaq and didn't know it made a difference. My hands and feet, plus nose, are cold all the time. Fortunately, my hubby is a virtual heater in bed so my feet are taken care of. He goes to bed earlier than me and then I go in and put my icy feet on his legs. I'll bet he doesn't even notice. Yeah, right.
Lucy
Me too (waving my hands above my head)! :) Seriously though, I've had the freezing thing going on for several years as well, and I sure wish that I knew why for sure. I too can be "warm" one minute and then feel the freezing come on, and my right hand is also worse than the left one too; I always have blankets around me when I'm home, and carry extra warm clothes where ever I go (never know when it'll hit, and how bad it'll be).
I don't know about y'all, but some days I will be perfectly fine, and can wear seasonal appropriate clothing, and other days, I'm in the woolies; it's the same thing at the office, I just never know (have a couple of sweaters always ready).
As I sit typing here, my left hand is a bit on the purple/blue side (a bit warmer also), while the right hand is that ultra white and ice cold.
If anyone knows why one side is so off than the other, please do pass it to us.
Take care of yourselves, and have a better day tomorrow!
Patze
Hi :)
I keep pushing the same thing. I know SjS can cause autonomic malfunction, which includes 'thermostat' but anyone feeling permanently cold should also get their thyroid function investigated because feeling cold is a symptom of hypothyroidism.
So saying - I usually feel too hot but recently had a couple of uncomfortably 'chilled days'.
Take care - Scottie :)
hi there
yes me too, so glad im not the only one. Since being diagnosed, ive gone from being always hot when everyone else is freezing, to always freezing cold. I know its winter but i tell myself it cant be normal at 38 to be constantly freezing. I am always wrapped up and the house is always very warm. Even when the autumn weather started and it wasnt that cold i was bundled up. it is very embarrassing wearing gloves and thick fleeces when everyone else isnt. Especially at my age.
This all started when i was diagnosed with ss. ive had my thyroid checked and nerve conduction study done, all normal.
Wow, I just answered a similar issue posed in a recent thread started by Anna, and I could repeat it all here in this thread again! Glad to know that there are others who just are not happy at all about feeling cold all the time. Not happy that others feel this way, of course, but happy to know that I am not just a weirdo wuss.
Quote from: babycakes on February 14, 2010, 04:52:52 AM
hi there
yes me too, so glad im not the only one. Since being diagnosed, ive gone from being always hot when everyone else is freezing, to always freezing cold. I know its winter but i tell myself it cant be normal at 38 to be constantly freezing. I am always wrapped up and the house is always very warm. Even when the autumn weather started and it wasnt that cold i was bundled up. it is very embarrassing wearing gloves and thick fleeces when everyone else isnt. Especially at my age.
This all started when i was diagnosed with ss. ive had my thyroid checked and nerve conduction study done, all normal.
It has been mentioned many times here,, nerve conduction studys will not show a sensory neuropathy like some of us have,, its teh small fibers that give us these weird sensations of cold and the tingling plus the numbness that goes with it, I have had so many nerve studys, that came back negative but it wasent until a punch biopsy was done did teh extent of teh neuropathy show up,, which is now substantial, I am currently looking into talking hte neuro about the possibility of my pancreas burning out causing some of this quickly spreading neuropathy,, namely Chrohns,, research I have done has shown that a lot of GI issues related to SS can cause thistype of neuropathy
Well here I am being called to join another group. I have had this problem for years and have always laughed my thermostat was broke. I have also had neuropathy for years but about five or six years ago I was diagnosed with autonomic neuropathy. AHA Now I have the cause of the broken thermostat. Too hot, too cold - no happy medium. This winter with the cold, damp winter has been the pits. I can't get the feet warm and the legs HAVE to be covered at all times. I can be wrapped in a bound of covers but if one little patch of my legs is not covered with pants I feel cold all over
This winter my normal attire is sweats. I sure would be a candidate for the "What Not to Wear Show" but would be miserable when they wanted to toss all my sweats LOL. Of course the summer is just the opposite. I have always been a modest person but somedays I wish I could just walk around with no clothes. Oh what a sight that would be!!
Because of the problem I am always looking for the perfect socks, pants or shirt that will work for me. If anyone would invent clothing to help even out body temp for people with our problem they would make a fortune!!
JG - I know this will sound so obvious but it is something I resisted till this winter - thermals!! I have a hot bath and hot drink to raise my body temp, then sneak into the bedroom and hastily put on my vest and long johns, avoiding the mirror at all costs!
I have a set of proper old lady ones, but then found pink striped long sleeve top and pants in Milletts. As they were called a 'base layer' I didn't feel quite so bad in them. The botttoms make the biggest difference ever. I wear them to go out walking when I can and sometimes at school on cold playground duites days too.
It makes me smile. Others may wear lacey frillies and have a secret smile, but mine most definitely comes from a layer of thermals! Hope you feel less cold - it really is miserable! XX Ailsa
You and me both Salsen! I avoid the mirror at all costs when in the au natural! :D
The pink stripped long johns sound so cute! I've got some pairs, but alas, they are just solid colors, boo hoo.
Patze
An old flame years ago told me that I was great with any temperature, as long as it was exactly between 74 and 76 degrees.... ;D
navydad
its interesting what you said about small fiber neuropathy as i have been told i dont have any nerve issues which i just dont understand. I have constant numb hands, pins and needles etc etc which seem to be getting worse. Not to mention the temp stuff, freezing cold and then sweating!! im definately going to mention a punch hole biopsy to my rheumie next time as i know there is something up.
thanks annie
Me to I am freezing, It doesn't help that the snow is piling up also.
I get so cold then I might have a hot flash. then cold again. Usually sit in front of fireplace wrapped in a blanket. This morning I put cuddle duds on under my sweats.
Will we be cold this summer??
harlin
The winter doesn't both me at all, I freeze all year long :D Summer, spring, fall, winter, it's all the same to me. I'm convinced that it is either chemical or autonomic.
When your hands and feet are cold, are they also sweaty???? Mine are.... ::)
Hi Joy,
Mine used to sweat at the drop of a dime. I've always had cold hands (at least since I was in my teens), but when the hot flashes stopped, so did the wet hands.
Hang in there lady! By chance, have you spoken to your doctor about it yet?
Take care of yourself -
Patze
Yes, Patze, Rheumie says cold hands and feet w/sweat are from Raynauds. While Neuro says its from P. Neur. ::)
Just depends which doc you're having an office visit with that day. Who knows ??? Just live with it!!! ;)
I hear that Joy! ;) :D
Patze
I have this too. I am always freezing! It's not as bad in the summer, but heaven forbid a cold breeze should blow across me!!
My GP and my rheumy both agree that it is autonomic nerve dysfunction. I have trouble regulating body temp, heart rate and blood pressure. They thought it was damage from Guillain-Barre but they say it could just be Sjogren's. Not much they can do about it though.
For those who like the thermal underwear - there are also a silk version of thermals - LL Bean sells them, and other "outdoorsy" companies do too. They are not glamorous, but the nice thing is that they are very thin and light, so they don't make you feel bulky. When I used to live in New England, they were a staple in my wardrobe in the winter, because we didn't heat the house above 63. So I'd have on my silk thermals, cotton turtleneck, wool sweater, and polar fleece jacket. Perfect! Went well with my fingerless gloves so I could type. ::)
Hi Lizzy,
Yeah, I've had some arguments with endo's over the years, and this was one bone of contention with one of them. I would shake so bad, and my temperature would fall below 95 degrees on a four minute thermomater. When I would mention this to the endo, he would tell me that it's not the Hashimoto's. ::) Hummm, once he upped the dosage, my temperature started to climb back up to 96 plus, and the wild shaking stopped. My temperature still falls from time to time, but not nearly as bad.
Yeah, sometimes I have to wonder how bad it would have had to be if I hadn't pushed the issue.
Take care of yourself -
Patze
beej
Newbie
Re: Always feeling cold
? Reply #15 on: February 15, 2010, 05:42:03 AM ?
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An old flame years ago told me that I was great with any temperature, as long as it was exactly between 74 and 76 degrees....
Beej, My husband says the same, or close to it. Says I have a 2 degree tolerance...2 up or down and I am hot or cold! Sad thing is he is right!!!
Robin
I am always cold too. I have Reynaud's and my fingers and toes feel like blocks of ice a lot of the time. I have lost a lot of weight since I developed Sjogren's so I thought that was the main reason. There's no fat on my body anymore to keep me warm. Well, some fat. I also layer my clothes and have an electric throw on my sofa.
I know that your body temp drops from cold,, but is there any medical evidence that says ,, say your sitting in the living room,, is it just possible for your temp to just drop to around 94 or lower,, is it the autonomic system doing it,, and do doctors admit it even exists
and do doctors admit it even exists---------------
I always ask what my temp is after the nurse takes it. Usually it's 97.2 or something and I don't usually say anything. One time recently, it was 96 and I said something and the answer was "this is very common." Yeah, if you have DSS.
@RobinBat, LOL!
Glad to know I am not the only one with a "peculiarity" that my significant other told me was mine alone.
Sad to say, getting the posts here is both sad and affirming at the very same time. Sorry so many share these issues, especially since so many "other folks" think it is just lame. But glad to know that I am not alone, eh?
Beej,
You are not alone!!! :)
That is one thing this site has taught me, things I thought was just me being weird I found lots of others have the same issues...
Robin
Thanks, RobinBat! Now I now I am a weirdo with company, LOL.