Wow. That must be scary. Are you hypothyroid? With that you can have low body temp. I have hyperthyroidism but instead of being warm, my body temperature is usually around 96.8. Never did get an answer as to why. Take care!

I often have low body temperature now and I wander if I can catch a low grade temp anymore because its already so low. I have had as low as 95.6. Normally your body temp fluctuates throughout the day. So try at different times and you will see a difference. I also get chills and goosebumps pretty often.

My temp is always low, 96 or below. My thyroid levels are always normal, but when I took a test to see if I had hypothyroidism, the test said if you test over 70 the thyroid blood work should be abnormal. I scored 165, and my blood work is always normal. I have read that even though the thyroid is producing the hormones, it does not mean the thyroid gland is functioning at 100%. I am not sure if there is a test to see if the gland is functioning normally.

I have often wondered what causes my temp to run low, anywhere from 95.4 to 97.4 and only goes higher unless I am sick. I have never been able to get answers for this. My thyroid is normal.

It's funny to read this post because I was looking at myself this morning wondering where the paleness comes from. My lips were even blue white looking this morning.
My temp runs low too. I could not warm up yesterday. I was taking care of my Nanna yesterday, she's in her 90s and she was warmer than me. When I got home I took the hair dryer to my body.
I used to think the anemia was causing the pale thing and cold feeling body but maybe it's the SS.
We can be extras in a Twilight movie!

I am always COLD, my temp is usually about 97 - never thought it might be part of Sjs - I guess I am used to it. I sleep with a mattress warmer on - wool blanket - heated rice packs - my thyroid tests are alll normal, too

Well I wish the doctors would pick up on this and address it. Even if they can't do anything about it but say it is just part of ss. At least you would know and not think you might have something else also.

Wow. I had that last week. I wasn't feeling well and took my temp and it was 95.6. I thought my thermometer was broken but I took it again that night and it was 97.8. This is strange. Thanks for posting this thread.

Hey...in regards to your issue with being so chilled that you cant get warm I agree with tomsmom about it possibly being because of hypothyroid...I had the same issue of being so cold that I had to have a warm bath and dress in layers...mentioned it to my doc that I thought maybe my thermostat was broken because I could never get warm and if I was able to get warm I couldnt regulate things...she ran some tests and found that I was hypothyroid...it took nearly a year to feel any better and for my thermostat to reset but it eventually did...all the hormone producing glands are regulated by the hippocampus in the brain and somehow it told my thyroid that it was malfunctioning...do get this checked out sooner the better
~Donna

I will definitely ask again but tests have been run and nothing shows. I am finding that many with ss seem to have similar problems. It gets better then worse...cold weather sets it off or so it seems. I wish I would burn more calories trying to get warm!

I know just how cold you feel! It's like the cold is coming from the inside, so often it doesn't matter how many blankets you pile on. I have found a heating pad on my back helps--but not practical most of the time. My temp is generlly 96-97.5

I have AI called Hashimoto's, which is hypothroid and I have a normal (for me that is) body temp of 96 - 97 degree range. When I first start getting sick, it seems like it drops lower too. I can become cold very easily and it is hard to warm up.

A hot bath or shower works the best to help me to warm up. During the summer the opposite is true, a cooler shower seems to help me to cool down if I get too hot!

You may want to ask your doctor if they see it as a problem. Take care!!!

I'm just getting over H1N1 flu that turned into pneumonia. My temp was 97.3 even when I was very sick and felt like I had a high fever. The Dr. at the hospital didn't think I had pneumonia until she saw the chest X-ray because my temp was so low.
I normally have trouble getting warm especially at night. It makes me wonder if it has anything to do with the sjogren's.

Oh my goodness! I am so grateful for this post. I was telling my mum that sometimes I am so cold and I can't get warm. If I put on layers and layers it does not help. The best thing for me is to sit in a very hot bath to warm me up. Last night in bed I was wearing thermals, night shirt, big cosy dressing gown, a scarf and tights and was still cold (Poor hubby was a site I must have been!!!!) My feet are always cold and now we have had snow, I am colder bbbbrrrhhh. Any one know what causes this and want one can do for him?

I was just diagnosed with S.S and now things sort of fall into place and I can understand alot of things that I was feeling. But this for example is something else, unbelievable! I have always been cold!!! Every that knows me knows that I am COLD unless its like literally 80 degress if not more. I have had my hemoglobin checked and off and on its been normal as well as thyroid but now it makes sense listening to you all. It must be part of the S.S as well....thanks!