sjogrens symptoms

[rose]

Anyone having trouble dealing with heat.and cold I will get cold then extremely warm I carry a jacket with Me in 90 heat!

[daisymay]

Not in that way, but if I get too cold for more than an hour or so, I will literally think I'm coming down with the flu. Sometimes even running a low grade fever (happens mostly in the winter)

[Dolly Dimples]

Yes! this is one of my worst symptoms. Each time I have mentioned this problem to Doctors I get
        "you must have sensitive skin"  I honestly cry at times because it is so weird,
      no- one seems to realize how bad it can be.  Even my better half,  after all these years still leaves doors open when he knows (or should know by now) he gets annoyed at me when I yell "SHUT THE DOOR" I can still be shivery when all doors are shut and I am wrapped up in  a fleece blanket!

     I cant wear pretty summer clothes unless we get an exeptional hot day here( UK) I cant travel on public transport as I freeze when anyone opens windows etc' Also having the dry eyes and dry everywhere else, just puts any social life to nil!
        On the other hand I can get quite a sweat on when I do any chores around the house and garden.
                    Some life eh, but ah well I'm still around!   
                                                                                       In sympathy , Dolly
       

[Carolina]

Temperature dysregulation is a hallmark of Autoimmune/Immune Dysfunction conditions.

You can be terribly hot in reasonable weather, you can find hot weather intolerable, you can start sweatingn for no apparent reason, you can be terribly affected by cold weather especially in your hands, feet and face.
You can have a normal body temperature of 97, and at 98.6 you are running a fever, but no one knows.

You can be hot and then cold.  Your feet can be freezing and your face burning.

This is part of our condition.  Neurontin may help a bit with the pain and discomfort of anything neurological.

Cymbalta can also help with pain and discomfort.  And the depression that goes with ALL of this.

We learn to adjust.  I must wear socks to bed, and then throw them off when in the middle of the night when my feet are bright red and very hot.

It is very difficult,, rather like the worst of menopause, but it comes with our conditions and doesn't go away.

I'm 72, and I just wear very light clothing, open at the neck.  If I am even mildly cold I know normal women around me  are going into hypothermia.

Hugs, Elaine

[grammad97]

Hello Rose-
Right now its in the high 80's where I live. I am sitting inside a 73 degree house (AC on) and I have a swearshirt on and fuzzy slippers on my feet. I go outside and shed the extras but inside I sleep with socks on my feet and have layers of blankets to cover up (or take off if I get night sweats).
My hubby took me to ER several years ago because I was shivering and wrapped up in quilts in 90 degree weather.. I got admitted due to dehydration and UTI. ( I drank loads of water and had no symptoms of UTI).
My family is used to me wearing sweats in summer and multiple layers of everything in winter now.
You are not alone Rose.
Deb

[warmwaters]

Yes, Rose - Absolutely.

Just went on a summer vacation and packed a polar fleece coat, thermal socks and a wool sweater to go with my tshirts, pants and shorts.  Because I just never know when I'm going to get cold.

Drives me crazy

[cccourt1942]

yes....and with SjS dx....I was so relieved it was due to something.  I've had it all my life!  When I was 35 we moved overseas..lived a couple hundred miles north of the equator.  We were given housing commensurate with how we would have lived in America---which meant we had AC units.  Before we left we were given extensive info on what to take with us,etc.  On the list were electrical transformers for 110 appliances (kitchen).  So we go to get them and I add one for the bedroom.  Questions were asked.  My husband offered:  she sleeps under an electric blanket year round.  The story circulated within the company...and upon arrival half way around the world, the question asked when people met me was "are you the one who brought an electric blanket to the equator!?"  It was funny to them.  Not to me!  Medical necessity!!!

[poisonangel168]

I also experience problems with temperature regulation. It is a very frustrating symptom indeed. I believe I am having added difficulty with this symptom as a side effect of prednisone. Recently I have been having cold sweats at bedtime and randomly throughout the day. I wear long sleeves in the Summer due to this and photosensitivity.

[KRNLMBCH]

YES! Mostly though, I am hot (year round).  Constantly changing clothes to get cooler, more comfortable.  I sweat profusely from my head and neck a few times a day and through the night, which is really what I think causes the "chills".   I run the A/C day and night AND a fan is always very close to me.  Once the sweating starts to subside, I get very cold due to, my head being soaked to the skull and usually the collar of whatever I am wearing.

[finallyadx]

Absolutely - temperature disregulation IS part of autoimmune issues unfortunately. 

[rose]

Thank you so much everyone,  I know I'm not alone. Right now I'm laying down with a heating pad, had gallbladder removed yesterday. Temperature here in Texas in the 90's.

[anita]

Most commonly, temperature dysregulation is related to autonomic dysfunction...a neurological condition.  Of course this type of neuropathy can have autoimmune/immune system roots.

Do you have any other autonomic symptoms (low BP when standing, lightheadedness/dizziness, fast heart rate, GI problems, etc)?