18c outside and I’m in pants and long sleeves in my office cuddled in front of a heater. I feel like there’s a cool breeze running through my body constantly.
Angie, have you ever had your thyroid levels checked? Hypothyroidism (underactive thyroid gland) can cause sensitivity to cold, among other things, and it is common with Sjogren's Syndrome. I have hypothyroidism and take Levoxyl for it. When my levels were off, I noticed that I would feel really cold all the time and even my body temperature was always a little low whenever they checked it at a doctor's office. If you've never had your thyroid hormone levels checked before, you might want to ask your doctor about that.
It could also be Raynauld's Phenomena, but I would think you would mostly feel that in your extremities. (My feet feel freezing cold most of the time!)
I am also fairly sensitive to cold, and have gotten worse as my Sjogren's symptoms set in. I usually feel colder during a flare, which leads me to believe it is yet another symptom of SS. My thyroid levels are perfectly normal and I've never experienced Raynaud's phenomenon.
That being said, it is definitely worth having your thyroid levels checked if you haven't.
I do have reynauds but I am on amlodipine for that. But this is more like right through my whole body. I don’t know if I have had my thyroid checked I will ask my doctor
I too have been extremely sensitive to cold hands and feet. I live in Florida and run around in the summer in a short sleeve shirt over a long sleeve shirt and a long sweater with pants and socks. People look at my like I am nuts. I have only been tested for SS. I don’t know if I can handle other syndrome/disease. I am still in the process of finding a rheumatologist who specializes in SS. Many rhuemes
tend to throw in a diagnosis they are familiar with. I would get further opinions and search and search until you find a rhueme who is dedicated, specializes and truly cares. A good rhueme is hard to find. I was diagnosed with osteoarthritis and given a script and sent on my way. I later went to an orthopedic surgeon thinking I needed surgery on my knee and he said the osteo was minor after an MRI…so I continue to search for a rheume who specializes in SS and these rare diseases/syndromes. I noticed some larger cities have support groups that meet and are activists in proper diagnosis. I hope one comes to Orlando FL one day. Support groups and people who have these rare diseases/syndromes are instrumental in referrals and guiding doctors/specialists. It is sad, but real. I research, research, research and have been educating my primary doctor. He needs to start paying me versus me paying him…LOL!!! I also read an article 5 years ago that Low levels of Vit D are related to depression. I gave him the article and he tested my Vit D level. It came back very low/deficient. He now tests all his patients for Vit D deficiency most who have also came back with the levels. He couldn’t believe it!!! He now works with a compounding pharmacy for Vit D supplements. After I took the Vit D supplements from the compounding pharmacy for a month versus over the counter vitamins I was taking my Vit D levels came back perfect! Amazing!!! This is why I am a firm believer you know your own body…research and inform them of things you find. It is sad, but a way of life nowadays as they are trained to double and triple book ($$$) patients, pull out the prescription pad and send people on their way. One specialist tried to tell me I had MS based on the fact I urinated more so than others. Uhhmm, I went to another specialist who did thorough tests and found no signs of MS!!! Pick your doctors wisely. If your gut says this doc really doesn’t care then they really, really don’t. I think I probably had SS then but MS was the “rage” in the medical community at the time so she went with that after a 10 minute “physical” visit!! And this was my first visit to her! I also had pains and itching in my legs and she said MS. I went to a vascular specialist who found I had veins that were essential in supplying blood back to my heart that shut down. And I had no varicose or spider veins. The vascular surgeon threaded the veins and re-routed the healthy ones and I had no more problems with my legs itching horribly and feeling like logs. I can’t express how important it is to be your own advocate and basically become a medical expert on your own symptoms. I am in no way promoting self diagnosis, but you have to work as a partner with them and research, get on forums, read everything and share with them if you find info that you say, oh yes, me too!!! It is like we do all the research and pay them for educating them. That is how I found out I had SS! I demanded the blood tests. Even if the blood tests come back negative which research says up to 50% do, keep pushing for the lip biopsy and eye tests, etc.!!! Hang in there! Research! This website helped me confirm SS after I told my doctor to test because everything I read on here I was screaming me too, me too!! It doesn’t hurt to test, I think there is some type of ultrasound as well if other tests come back negative.