EVERY day throughout the day I play musical sweater. One minute I'm fine, the next I'm freezing. As soon as I go get my sweater on and get it adjusted . . . presto, I'm hot and off it comes. Do this about 100 times a day. Okay, 100 times is a tad bit of an exaggeration . . . it's really 99 times!! ;D
I wish I had some footage of me attempting to sleep . . . I feel like a fish out of water. Crawl in between the sheet and comforter, pull my afghan up . . . ahhhhh, time for sleep. Wait, I'm hot . . kick off the covers. Snap, crackle, pop of leg and arm joints as I roll onto my side. Lay in this spot for a few minutes and I'm freezing and put all the covers back on. ::) Repeat this about 100 times a night. Ok, maybe only 98 times!! ;D I can't get a comfortable position between my hip, knee, shoulder or elbow not wanting to be laid on. Flip, flip, flip, flip all night long! I feel like a fish out of water flipping over and over and over and over. No wonder I wake up exhausted as I haven't had much quality sleep all night. I go to bed tired and wake up tired. Sigh!
Last winter I developed the lovely Raynaud's and just last night my feet were freezing!!! Had to get up and put on a pair of socks. Sigh . . I have a feeling we're in for a l-o-n-g winter!! Better have my sweater, covers, socks, gloves, hat and anything else I can find to put on and take off frequently nearby!!
Bucky
Oh Bucky - I know I shouldn't, but I had to laugh! You sound just like me. I can go from birthday suit in front of the fan to thick jamas, socks and extra fleece, wrapped up like a swiss roll in the same night! One minute socks are a life saver and the next they are like an acid footbath and I can't get them off my poor claustrophobic feet fast enough!
Hope you sleep better tonight Bucky XX Ailsa
Ah Ms. Bucky,
Welcome to the burning and freezing club! Yeah, joined that critter several years ago, and it looks like this winter is going to be a dozy too!
Yeah, I used to always have an extra set of sheets/jammies/socks/etc. ready every night because I just don't know how bad it the night would be. Lately, it's starting to even out. I still have really cold nights, but the ultra hot ones are becoming fewer and fewer.
Hang in there lady, it'll get better.
Take care and here's to warm toes tonight!
Take care -
Patze
You could be describing me, too !
More recently, since I have been on a painkiller, I am not doing this too much during the night. However, I have spent most of this evening wrapped up in many layers of clothes with the heating on, whilst hubby say's its roasting ::)
I keep getting the cold water pouring over me sensation tonight ::) xx
Hi, Bucky -- I've never met you, but we sound like twins. What is it with our internal thermostats being so messed up? It's so very frustrating. I hope that Patze is right and this will eventually go away. My sleep is disruptive enough without the temperature issues. It's like that old saying, 'there's no rest for the weary.' Anyway, hang in there. I hope it gets better.
Hugs,
tired Tede
Hi Tede,
I had the rolling sweats for several years, and it's only been within the last three to four months that I'm finally getting some much needed relief (better than what it was before that's for sure!).
Hang in there and I hope that it ends for everyone soon!
Take care -
Patze
Bucky and everyone........I think I belong to this group too. It's now below 30 degrees at night in Michigan, so winter is setting in. My feet are cold, my shoulders are cold etc. Then all of a sudden, I'm hot and it's off with the sweater and sweats. Sometimes I wear doubles to bed. I'll wear a cami and pants and then put sweats over them, or flannel jammies. If I become hot, I then pull off the sweats and I'm reasonable warm the rest of the night (unless I get too hot.) Time to get out the winter jackets, gloves etc. Lucy
Oh I would think this is funny... but it's not! ::) I go through the same thing. I know it's not menopause, but I can sympathize! I have hot flashes I think because of my thyroid, but maybe not. ??? I can go from cold to hot several times a night and all day, too. As soon as I change into something lighter, though... I'm back to cold again. Yes, the Raynauds certainly seems to play into that to some degree. Isn't this lovely?? We don't play with the thermostat here.. it stays where I need it to be! I have a fan that I'd love to have blow on me all night, but my littlest birdie sleeps in our room and she hates the noise of the fan... so it stays off so I don't have to listen to her cry!
Hi Bucky,
Sheesh! it sounds like what I go through all the time also. Including the gift of Raynaud's for Christmas last year.
I have spent this entire day going from heavy robe to heavy sweatshirt and sweat pants, then back to cotton slacks and blouse. Then back to the sweat gear. At the moment I am wiping sweat from my face and neck. Thank goodness I only sweat from the shoulders UP.
I also do the flip flop all night with shoulders and hips that complain every time I turn. Now my cardiologist informed me the nightly tachycardia is the SVT returning. Happy, happy, Joy, joy, :-\
That saying goes so well for us "no rest for the weary". Every time I think there isn't anything else that can go wrong with my body............................WHAM! something else turns up.
Hang in there gal, I hope it subsides soon for you. ;)
Hugs, Pooh
hi bucky
another yes from here, you are describing my night time routine to a T. Complete nightmare, covers on and off all night long. Also happens in the day. bundled up in clothes on a reasonably warm day then sweating profusely, strip down and off we go again.
annie
>>>Now my cardiologist informed me the nightly tachycardia is the SVT returning.<<<
Hi Pooh,
Is the SVT at all related to your SjS?
I'm a member of the Covers on, Covers off club too - much to the chagrin of my dh!
Count me in too...covers on...covers off...etc...etc all night long! I cant get it figured out...lol! I also do the same with the heat/AC controls....up down...up down...never get that right either....the fan also goes on off...on off...
Well I think you all get the idea!!! :D
Please can I join your gang? During the day, I can be sleeveless and warm at the top end, and freezing at the bottom end. Today it was 15 degrees and I wore for work: tights, thick socks, trousers and boots, and my feet were still cold. Last night in bed, my top end was lovely and snuggly, and my feet were burning so badly, they were dangled out of the duvet to keep cool.
I just can't work my body out. Whoevever said the internal thermostat is broken is soo right!
Kathyx
Me too!
This is a club that I really diden't want to be a member of...
Already got the thermals out and on.. and yes ...I just know that this is going to be a very long winter indeed.
Brrrrr, Dolly.
Ladies, You're singing my song! All night long I fan the covers. I fan the sheets just right so that a good breeze get in under the sheets to cool entire body! Then I get cold. This can wear you out! Yeah I will get up the next day feeling like I haven't slept all night because I haven't!
Bernice
Same for me. I'm pretty sure it's my thyroid (I have Hashimoto's), though the "broken thermostat" seems to come along with several AI conditions.
At my house they say..."Mom's having trouble self-regulating again." Hehe
Ditto to all of the above, except that I don't have Raynaud's.
Cheryl
Thank you all for letting me know that this is normal. Well normal for us. Long past menopause and couldn't understand why the hot flashes were back. The heating pad and i have become best friends on off on off. Thought there was something else going wrong. Relief to know others are sharing in this thermostat control problem.
In Michigan, it's cold already. Highs about 15@ below normal. Nights are below freezing and highs in the daytime mid 40's. Brrrrrrrrrr. We're hunkering down. Lucy
Yeah, I know what you mean about cold nights as it's getting a bit nippy around here as well. Now to figure out why the old temp drops a lot and I get very sleepy, weird.
Patze
Patze,
Maybe you're hibernating? ;)
Cheryl
The timing of this note is unreal! I have Raynauds and often times my feet or hands would get really cold when the rest of me is just fine. A while ago I started having problems going to bed at night. The house would be freezing and would hurt my joints, but then once I got into bed I would be hot and couldn't cool down. I'd have the windows open in the middle of winter! Now in addition to all that, I've started having random hot flashes. I thought, I'm only 38 so surely it isn't menopause, so then I did a pregnancy test!!! I don't get it. One minute I'm chilled and the next my face just gets really, really hot and I could crawl into my freezer! LOL! You just have to laugh at this disease - it is so ridiculous!!! :D :D ;D ;D
Hi Cheryl,
You're probably not far from the truth, but that darn alarm clock keeps making sure that I "don't" hibernate! ;) ;D
Patze
Hibernating sounds like a good idea to me!! ;D :D ;D
I asked the rheumy at the Houston SJS meeting about this problem. I am freezing then boiling too but I no longer sweat very much so it is really hard to cool off.
He said - this is probably sjs (not thyroid - my thyroid is also messed up). He said to tell my rheumy about this problem (which I already have - he just shrugged his shoulders) THEN HE WILL PROBABLY SEND YOU TO A DERMATOLOGIST. I wonder what the dermatologist would do.
He also said that since some SJS people lose their ability to sweat we have to be very careful about heat stroke.
Tuckerdog
I am doing this too...didn't know it went along with this...just figured I was getting old. I hate it these days when people say you are only as old as you feel...ooooooo not a good thing to say to me right now
Do any of you that work full time have any tips on how to get through the day when you are just barely dragging through it? I don't have children at home any more...it is just me and my sweet husband. He is supportive and helps me out so much. I have to work...that is not an option...and I try hard not to complain to him too much about it...I have to work and I don't want to make him feel worse than he does about all this. I figure it is just a matter of finding out how to manage the day better. Any tips that any of you have please let me know...and if anyone figures out how to regulate this hot/cold thing...I am open to that too!! :) :'(
Hi Grandma - I work too and the things that make it bearable for me are lots of layers. I can move through light top, jumper, cardigan and jacket in a single lesson and back again before the bell goes.
I teach in the hottest classroom on the planet, I swear. There is very little circulation of air as windows only open about 8cm at the bottom (and the pupils complain they are cold!) I have a fan which I turn on and off about 10 times a day; an icepack for chilled water bottles; a foodflask for hot soup; extra socks for emergency chills... Everything and anything that makes the day at work feel better.
It's also good to feel you have an ally at work who you can have a moan to without feeling bad. It doesn't do to tell everyone everything, but really helps to know there is someone there who knows what you are going through just to turn up every day.
Good luck XX Ailsa
I'm a hot and cold critter too! What's really weird is now I can be both at the same time. I'll be burning up, sweating and my hands be so cold I have to sit on them to keep them from hurting. Do you guys think it's a SJS thing or one of the many chemicals they pump in us to keep us going?
Quote from: bloodless on October 20, 2009, 12:18:14 PM
I'm a hot and cold critter too! What's really weird is now I can be both at the same time. I'll be burning up, sweating and my hands be so cold I have to sit on them to keep them from hurting. Do you guys think it's a SJS thing or one of the many chemicals they pump in us to keep us going?
I hear ya bloodless! I will complain to hubby that I'm burning up, but if he touches my hands they are freezing - weird, eh? xx
Hi Grandma,
I agree with Harrigan, I also wear layers, it does help! In my office I can go from freezing one minute to very hot the next, and back again within five minutes - it's messed up, but what are you going to do? I also an extra heavy sweater in the office just in case.
Hang in there and I hope it gets better for you!
Take care -
Patze
Hi everyone ;D
My sweater / cover saga never really goes away, but this last week it seems to have been more constant.
I made the mistake of going to the store one day this week without grabbing my gloves on the way out. My hands were freezing - I cranked the car heater up to try and warm them.
Some days I feel like the time in my life when I was carrying a baby on my hip with a diaper bag in toe. Before heading out the door I need to make sure that I have a water bottle, sweater or jacket, gloves, pills, eye drops, sunglasses, heavy socks or boots. I suppose I should make up a little travel bag with all the above items in it so I can just grab it and go. Since I never leave home without these things (unless I forget ::)). Ahhh, to have the carefree days back of just grabbing your car keys and purse and heading out the door.
Gonna make a cup of hot chocolate to try and warm up a bit. . . anybody want any?? Come on over!! ;D
Bucky
I am a member of the club too! Covers on/covers off....I have taken to taking a microwave hot pack to bed with me, warm up the foot area and then on up before I get in....move it to what ever area is cold or hurts...seems to help....Robin
Bucky, You sure opened a discussion when you started this thread. Yes, I belong to this club. I started out in this club when I was around thirty-five. I was walking around at work complaining about how hot it was and asking people if they weren't hot too. Nobody was and most of the time over the years nobody ever complained about the heat except me. Sometimes I thought I would pass out.
I had ovaries out and was on estrogen for 13 years and I was still hot and still am to this day. Only, now I am adding the chills during the winter. Bucky, I too, play musical shirt(I wear a flannel mens shirt as this is warm but doesn't make me as hot as a sweater) and I am forever losing track of where I took my shirt off last.
When I go to town in the winter I wear a t-shirt of some kind because I get so hot. Went shopping on Tuesday and I had the coat lining damp from sweating so much. Wearing a winter coat in the car with the heater running just about kills me. If I don't have the heater on my hands and feet get cold.
Started with a mini case of Reynauds I would think and my fingers and legs below the knees get so cold and I have to get up and get the sock also. The electric blanket really works for me. If I wake up hot I turn it down, If I wake up cold I turn it up. At least I can keep the covers on me.
The thing that really drives me crazy is trying to shop in the winter. I am pushing a cart down the aisle and have to stop to take my coat off and in about 5-10 minutes I am freezing. It is on and off with the coat the whole time I am in the store. Suppose I should care a shopping bag with a shirt etc. It gets too complicated to have any fun.
I hate to complain because when summer comes I will be just bloody miserable from the heat. Can't please a sjoggie. Irish ;D
I AM FLASHING LIKE CRAZY!!!!!!
These are not letting up so it's just covers OFF, ceiling fan ON!!!!! I pray no emergencey or I ever have to fight off a robber in the middle of the night ever happens, cause. well let's just say I ain't dressed or ready for either! Well, on second thought the sight of me might be enough to ward off any would be robber! >:( >:( ::) ::) ;D ;D ;D
LOL Irish - I wear a flannel shirt too. :D
My husband got tired of the covers on/covers off thing all night. He would get cold and snuggle up to me and I would immediately overheat and throw the covers off so then he would freeze. He bought a dual-control electric blanket so he can crank his side up while my side is OFF. He turns my side on before I get in bed so it's nice and warm and I turn it off as soon as I get in bed. I still have the cold/hot, covers on/covers off thing going all night, but at least my dh doesn't have to suffer any more! ;D
Bucky
Oh my goodness same here. I actually flung the dog off the bed one night flinging the covers off and on. She was so shocked she just looked at me like "what just happened"!
How can anyone go from freezing to burning up in a matter of seconds ???
hugs harlin
At only 34, I'm definitely not going through menopause (nope, not even early or peri-), but I have the same problem when I sleep.
My husband teases me about my "furnace"--I'll heat up the whole bed with my body heat, but then I get sweaty and then I get cold. When I wake up (usually in the middle of the night), I'm freezing and wearing cold, clammy pajamas.
My thyroid levels have been good (TSH of .87 last I checked) so it's not that, and it only happens when I'm sleeping; I'm always cold when I'm awake. Guess it's just another fun Sjogren's symptom.
Dragonfly, I could have written your post myself. Most nights, I wake up around 3 a.m. and my PJs are soaked through, and I am freezing cold. I have to change clothes before going back to bed!!!
I've been on generic Zoloft for a while, but I have decided to discontinue it for a variety of reasons. One of the side effects is increased sweating. Hoping that I can avoid the whole "clammy" phenomenon once it's completely out of my system.
Harlin,
That was too funny, I can see that!!!!!LOL!
I bet your dog thought you had lost the better part of ya cotton pickin mind!!!
I've been playing musical covers for a year, but when I think back, I was doing this every now and then for years. I think it was aggravated this year by a hysterectomy, and finding the right HRT. Now, it's annoying but manageable. I make the bedroom very cool, and then pile thin layers of covers and a fleecy throw at the end for my feet. So far, so good.
Having spent the past two months being permanently freezing cold, I have now found that my thermostat has gone the other way completely. I am getting hot all the time, not hot flashes - just hot >:(
oh my that is me when my fibro flares real bad.I had forgotten how annoying it was until the last couple days.Having a crazy bad flare reminded me all about the hot-cold sweaty thing.that was one of my first symptoms which was ignored by doctors for years.When my fibro is calm so is that symptom .
Hot cold hot cold hot cold hot cold, back and forth, literally within seconds, from hot to cold, to hot again!!
Yay! Glad to hear I'm not alone with this!
I get hot and cold all the time, also with raynauds, and thyroid, that seem to play havoc with me for a past time, what is causing what???? ::) so its all good fun...... not. I do find in the summer I wear wrist coolers and neck coolers, which do help, but I do find I get very irritable with going from cold to hot, never knowing what to wear, sticking to cotton seems to help me a bit, also one minute the house is freezing for me and the next too hot for everyone. I also find the heat wears me out, and I completely flake, I already sleep nearly 18 hours a day, so summer is a nightmare for me.
Carol
I found something that some of the *ladies* might want to take advantage of. The other day I was in JCPenneys and happened to be buying some underthings. I saw a couple of sportsbras hanging there and I grabbed a couple. It's winter here and I'm staying in for the most part. Well, these bras are not really the real thing and not heavy duth. However, if I wear one under my pj's, I can fling my jama top off and not be too hot (or naked). During the day, I've been wearing these under my clothes too and the same thing, if I get too hot off comes my shirt, sweatshirt or blouse.
Reminder: Just hubby and I at home and I'm not visible to anyone else, I will be buying a couple more of these. If you are not very busty, you may not need a bra when you go out. These are not as hot as a regular bra. The way they are made, you can wear them with a shirt with a lower neckline and the top shows through for the layering look. Lucy
I love sports bras, but my all time favorites are bras that open in the front!
At night time? forget about it, I will jump up in middle of night fighting to come out bras and everything else so I take care of that before I even go to sleep. I spent most of my life were I had to have a bra on at all times, not that I really needed one, but habit, even had to sleep in one, but now? forget about it!
Hi everyone just looking at all your replies and thinking yeap thats me to. I was diognosed with Sjogrens in Malasia when we were living there. Im in New Zealand. anyhow back to the point.
In Malasia they have some of the worlds best Drs and specialists, and fortunitly I had health insurance so was able to take advantage of the services. My thremostat was well and truely broke. When I told the Endicrinologist ( specialised in glands and stuff)
Evidently when you are on perdnisone it kills the natural estogen that is naturally manufactured in your bone. It apprantly kicks in after menopause and the overies arent producing any more/
This was 5 years ago he put me on HRT and Iv been weaning myself off them ever since, now, touch wood, Im off the HRT and although I still play in bed out of bed all night and perspire profusly on the left side of my body througout the day.
I guess you either put up with it or take HRT the problem with this horrid disease, is you just start coping and another thing comes up and sits you flat on your butt again.
Good luck people
Colls
Colls, I went thru menopause early...late 30's done by 42. I took HRT for 20 years. About 3 years ago, I was dx with Sjogrens. I got started on meds and began to feel better. Then I found a lump in my breast--and it was cancerous. So, not only was I getting used to having SJS (or at least knowing I had it) and then I had breast cancer. My docs took me off all HRT immediately. i had surgery and radiation and the cancer is in remission.
God I was a mess, frightened of cancer, having hot flashes, being bitc*h, getting used to a whole mess of meds. For the help on hot flashes and stuff caused by HRT withdrawal, I'd heard people had been taking Effexor (antidepressant) for this when they could no longer take HRT. I started it and at first didn't think it was doing anything. I ran out of it and within a couple of days, knew it was helping me. It might be something to try if you need to. Lots of people want to get off everything. I take my SSJ meds and know the HRT is gone for me forever. I also should mention I still have my ovaries and uterus. Right now, I know I have a cyst on one overy and we're watching that. Lucy
Hi Lucy
thanks for sharing with me, I did know that there would be a chance of me getting cancer taking HRT, but my husband and I lived for 14 years in tropical places. I hadf to have a historectromy when I was 23yrs old, so they put me on it then, I really needed it as I was wearing winter woolies in the tropics cause I was freezing, then at night time I had the air conditioner down to 13 my poor husband was under heaps of blankets and Im spead eagled naked on trhe bed (probably not a pretty sight but gave me some relief) Anyway when I was 43 I had overian cysts, they left them in place, so they took it straight out.
I have weaned myself off HRT and I know I would never go back on it again. I feel that would really be pushing my luck. I am 59 and have been diagnosed now for 4 years.
I am sending you tons of white healing light, you seem to have had it a bit tough. When I read all the other things a lot of you people have besides Sjogrens I count myself lucky.
Take care and thanks again
lots of love and kind thoughts Colls
Bucky,
I can so relate!!!!