heat and cold

[wednesday mc haggis]

I seem for about a year now to never be able to get a heat into me, heating on and still shivering, or im so hot im buring and yet my fmaily are sitting saying its cold in here, is this a symptom of sjogrens, ive read alot but cant seem to find this as a symptom

Thankyou in advance

T x

[Joe S.]

Are you diabetic?

[navydad]

I get the same thing,, I cant seem to get warm,, especially in the legs

[Scottietottie]

Hi 

A lot of people have posted complaining they feel like their 'thermostat is broken'. It may have something to do with the autonomic nervous system.
The other thing is to check that your thyroid is OK. A symptom of an underactive thyroid is feeling the cold a lot and complaining of being cold when the rest of the world are warm.

Take care - Scottie 

[genko_b]

I'm one of the ones with this broken thermostat symptom, and it is part of the autonomic nervous system being involved in my Sjogren's. It also affects my blood pressure, which is labile, meaning it goes up and down unexpectedly. The docs are able to control it pretty well with a very tiny dose of blood pressure medicine, metoprolol.

Other aspects of nervous system involvement are the cognitive ("brain fog") issues: unable to finish sentences because you lose your train of thought; unable to unscramble the meaning of what someone is saying even when you hear the words clearly; aphasia (can't find the right word for something); balance issues; what seem to be memory issues but are probably info processing issues, and so on. Some people also experience seizures.

I have personally found that CellCept has helped greatly with all of these. The doctor recently had me on a long taper of prednisone and has weaned me off of it using methotrexate, which I believe has helped as well. Neither medication works for everyone. And so far I have found nothing that helps the crushing fatigue. No doubt the fatigue is aggravated by the vast amounts of energy that I have to put into standing up and walking around much of the day, with the balance issues I have.

All I can suggest for the hot and cold business is to wear a number of layers and take them on and off as you need to. If that seem onerous, think of the fashion possibilities. It also seems to entertain people to watch me constantly rearranging the clothing like a cross between a neurotic stripper and a vaudeville act. Glad to provide a little cheer! Also don't get too exhausted, or at least figure that exhaustion will aggravate your symptoms and be prepared.

Genko

[wednesday mc haggis]

thnka you all for yopur replies  !!!


I am not diabetic thankfully , my step dad is and ive used his machine to check that, my thyroid is fine i have that checked v ery recently , " thermostat broken" yup thats exactly the feeling !! thankyou least i know whats what  which is always good yup cant finish sentences , have to have ppl say things twice coz i flies over my head , walk into doors somedays , the thing that worries me most is some days i apologise to the door before i realise  lolololol , fatigue is a menace , and the more i push t hat i have realised that it just componds things ,  which is hard for someone who used to be manic in their ways , but then something had to slow me down eventually

genko  lmaoooooo  fashion possiblities hmm  im either tye dyed or in full goth  im the goth/hippy   ,or as me m8 said gothip ,  ive been layering and as i live in scotland a country known to be cold ,  somedays i look like a bag lady but then iv enever been one to worry about what i looked like as long as im happy

thnakyou all so much you are all invaluable , blessing to you

T xx 

[Pooh]

MC, I love your sense of humor.  It will take you a long way with this insidious disease.  I always believed in it and always will. 

The others are quite right, it's our Autonomic System that goes "bonkers" with this disease.  Also if you find you are having balance problems, please let your rheumatologist know about it.  Apologizing to door frames can get painful.   I know this first hand.

Take care and have a great day.  Enjoy all of those you can and don't overdo during them.  This disease has a way of making you pay for those good days. 

Pooh

[eyeamdry]

This winter and last, I've had trouble staying warm.  I was dx just before that with Sjogrens.  I have never been like this in my life!  Living in a cold place, I'm usually wrapped in bathrobe and electric blanket, even during the day.  Obviously, I don't get anything done.  Like the poster above, every so often I get a hot flash thrown in and off comes the bathrobe.  Within a few minutes, I'm back to freezing.

My doctor told me to buy some supplements and take them.  One is Adreset and the other is DHEA.  I've only been taking them for a few days and need to modify my dosage.  Not sure if they are going to help or not.  I think he was trying to relieve my fatigue.  Lucy

[wednesday mc haggis]

eyeamdry

thanks for the feedback, its not knowing things i cant handle, some ppl dont want to know and thats their way, and mine is fully arming myself with facts, its a relief to know its that and im not alone in it, let me know how the supplements go and if they help

thnaks again

t X

[fluffiebunnie]

Since my symptoms began I have been hotter than I have been before.  I was always a cold person and now I am always the one in the office to turn the heaters off and open the back door to get some cool air in... needless to say my co-workers are not best pleased with me, being that it is January and they are freezing...

[Katybarstool]

I'have always been a warm person, until 2 years ago, when my feet began to get very cold. Then this winter my hands and nose have joined in and I was dignosed with Raynauds.

Our office is draughty and warm in some spots and cold in others. Yesterday, I wore three layers of normal clothes, followed by a sleeveless bodywarmer and on top of that a fleece. No-one else seemed cold! I'm seeing the Gp in a couple of week for a reiew of the Amlodipine for th Raynauds, and will see if I need any blood tests to see if my thyroid is ok (thanks for that idea Scottie . Until then, I guess the central heating is going to be on full blast.



Kathyx

[wednesday mc haggis]

kathy

never thought about it but my nose is frozen at the tip of it, and my feet are like ice , i have the heating on full but the kids recon theyre going to get a tan soon lolol, so i have to just tell everyone in the house to regulate it as i cant tell whats what anymore heat wise, not until i get into bed then i seem to sweat like a boxer :-s  no winning eh ?/

T x

[Epson]

Welcome to the freezer club, sometimes I am freezing all over, but my face is on fire.  I also have fibromyalgia and one of the symptoms is being cold.

Try putting a warm haggis under the blankets to keep you warm .

[DragonflyC]

Wednesday, do you know the numbers for your thyroid levels?  The AACE changed the normal ranges in 2003, but labs don't seem to know that.  A normal TSH is below 3.3 now.  I'm hypothyroid and spent years freezing my tush off until I was finally diagnosed when my whole body went arthritic with a TSH of just 5.6, barely out of the old normal range.  I also get randomly hot at times (usually while sleeping--night sweats are common with thyroid problems).  You might want to check to make sure that your lab's definition of normal is up-to-date.

[wednesday mc haggis]

Dragonfly thanks for the heads up! i dont know for here your rushed in and rushed out like cattle, if it wasnt for me being stubborn id get nowhere, will ask at next visit cheers

T x