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
Are you diabetic?
I get the same thing,, I cant seem to get warm,, especially in the legs
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 :)
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
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 :D 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 :D
thnakyou all so much you are all invaluable , blessing to you
T xx
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. :o 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
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
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
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...
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
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
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 ;D.
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.
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
Keep being stubborn! The only way to get anywhere with autoimmune disease care is to be as involved and informed as possible.
I strongly suggest always getting copies of all lab reports and keeping your own records (ask your doctors to list you in the "cc" section of the lab request). Also, if it turns out that your TSH is low, you can show a copy of the AACE 2003 press release with their new TSH range recommendations to your doctor (http://www.aace.com/public/awareness/tam/2004/tsh.php).
Finally, Raynaud's is pretty common with Sjogren's and other autoimmune diseases. While it doesn't affect your internal temperature, it does impact your response to external temperature changes (both cold and hot). It makes your extremities turn fun colors like white, blue, and sometimes red, and your fingers shrink when it's cold and swell when it's hot. If you have those symptoms, your rheummy should be able to look at your nail beds to see if there's any damage there (they put some sort of oil on them and look through an instrument); if there is, that's autoimmune Raynaud's. I have it (autoimmune illnesses often travel in packs), and I definitely react more strongly to changes in temperature than most people around me even when my thyroid is under control.
I too am hypothyroid and the endo keeps telling me that I shouldn't be having any problems, yeah, right (that's another mess); DragonflyC is right, the range did change and a lot of doctors (not to mention labs) are not up on the latest ranges). Please do check, you can't be too careful where your health is concerned (I learned that the hard way).
I find that I'm often cold, very cold even in an office building that's kept at 72 during the winter. My hands and feet turn fun colors (yep, I too have Raynaud's) and my nose wants to go south for the winter! I'm seriously thinking about joining it next year! ;) :D
I sure know what you mean about being rushed like cattle! Seems to be more common these days.
Take care -
Patze
Epson lmao@the freezer club class, thats right mad eme giggle :) , since the fatigue an dpain floored me 5 months ago and still is, im under my blankie alot on the sofa, feel like an apisode or charlie brown most days lolol, i called my guinea pig haggis so i could sneak him under for a heat lol.
I think raynaulds is likely yup, my problems is its taken so long to get the docs to believe me, that i have so many symptoms and as yet, no meds for it, my extremities dont change colours, but they feel frozen even to my partner, Ill ask my GP next week whats what with my thyroid, i cant ask them to CC me a copy, im in the UK and the NHS just wont have that , but i ll be taking apen and papaer and asking and writtign ti all down from now on, seems youv enot only to be ill, but a self diagnosing detective and be steadfast with the docs , i as a nurse always took that attitude the pain is what the patient says it is, so sad that others have not got that attitude,you advice is invaluable to me ty so much
T x
In my mid forties I started with non stop hot flashes. Now that I am 57 I am at the other end of the spectrum. The hot flashes seemed to have sucked all the heat from my body because I stay cold all the time now. I do have autonomic neuropathy which plays havoc with my heat/cold system. Today was one of those really off days. I have been layered in sweats with double socks and slippers under two layers of covers most of the day and am still freezing. All the bones are aching and it is only 56 degrees outside and about 70 inside. Hopefully this is a short spell and things will be better tomorrow.
Had to laugh at your bag lady comment. Sounds like me. I don't really worry about how it looks as long as it will warm me up. I think I would be rejected by the "What Not To Wear" tv show. Thank goodness I live in a fairly warm climate! I know I would turn into the ice woman in short order just a little further north.
Hope things are better for you soon. Take care!
salsen
i live in scotland all winter were now about -2 /-5 0c , summer is ask scottietottie, a week in may/june and a week in about september you actually get some son !! it rains about 300 days a year and the wind chill factor is increadible , i go to my sons school to pick him up i have an two tea shirts a jumper , 2 socks boots, a coat my friends call the polar bear a woollen nomad hat that covers my ear that just sting in the cold theyre so numb , scarf i knitted with 3 kinds of wool and gloves, noe of it matches lol some of its goth some of its tye dyed and my thin dry hair is like straw , im honestly one day expecting someone to give me money for a cuppa and a room for the night lmaoooo everyone said i was eccenteric , now i think im likely just needing to be enteric coated lmao
T x
Mc Haggis,
That's not cold, come to the Northern States, we'll show you cold, those darn Canadians keep blowing their cold air down to us and knock our plains out of the sky with their Canadian geese, well that is when they aren't soiling are side walk and parking lots.
But, we love their whiskey, so I guess we can put up with it. We will go from deep freeze to boiling in a matter of weeks, so if you have Sjogren's you can't win.
Epson ouch !! I bet you cant win !! , sayign that i went to south africa 2 years ago on holiday and thought the heat might kill me, so possibly scotlands climate isnt that bad lololol
T x