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Cannot Regulate Body Temperature
Autoimmune Diseases | Last Active: 6 hours ago | Replies (19)Comment receiving replies
Hugs to you @ladybarlow. It’s scary. I’ve read about 40% of Sjogren’s patients do not test positive for the disease and I am one of those patients. I cannot control my body temperature, don’t sweat, and spontaneous flare ups are scary. After medical tests for other possibilities my diagnosis is dysautonomia.
This is life changing. I am no longer active. 🥲When I start to feel a flare it’s important I immediately stop what I’m doing (this step is hard for me) and start self maintenance… what helps me is to be somewhere cool with a blasting fan (I live in South Texas), drink cold water, use cold compresses (I keep disposable ice packs in the car), take off my clothes and STAY CALM.
What would help alleviate your symptoms? One size does not fit all.
Keep searching for your diagnosis, you’ve had lots of set backs!
Autoimmune patients have similar stories. After five years of feeling brushed off by doctors having 5 minutes to talk about my bizarre symptoms and getting no where I invested in a concierge doctor. He organized a plan and a group of specialists, and I was diagnosed within a month. This brought down my stress level significantly.
I may add a Functional MD specializing autoimmune as another resource.
Best wishes for continued strength during your journey while raising a teenage daughter.💖 I hope you find a doctor you trust who will guide you to the answers you are looking for.
Replies to "Hugs to you @ladybarlow. It’s scary. I’ve read about 40% of Sjogren’s patients do not test..."
Thank you for your kind response. It really has been so hard. It began in 2013. That’s when I began chasing an answer. But nobody seemed to have one, so I finally gave up and decided I’d just have to try to live with it. At that time, it was a little bit easier as my body temp rarely got past mid-101s. But for some reason, over the last 3-4 years, it’s all escalated really quickly. For example: it got to 104 Christmas Eve as I mopped my floors. I had turned the heat completely off and it was 6 degrees outside. I left my back door standing open and had a floor fan on me. Saturday, I carried a laundry basket of clothes to my sofa and sat folding them in the coffee table in front of me. A/C set on 64. Ceiling fan on and a floor fan 3’ away blowing directly on me. Temp got to 102.2 and my b/p hit 199/147. I don’t know how to be any more protective of myself than that. That is like absolute least physical activity I could be doing. I can no longer keep my house clean. My daughter can’t have anyone over because I can’t clean my filthy house anymore. It literally feels like it will kill me to try. Just after the laundry episode, I felt sick all day Sunday. I don’t feel great today. It’s hard to keep going when you can no longer even see to your own needs. The only thing that keeps me pushing forward is this amazing kid I have who deserves so much more than I have to give right now.
I am an RN. So I’ve been trying to direct my care myself. Before I just took the initiative to schedule myself with Cleveland, my GP had not even sent me to a specialist. So I changed primary care doctors and that one never would refer me either. I’m seeing if I’m going to get help, I’m going to have to make it all happen myself. Which makes me want to get better and do this for others who don’t have any health care background. We need more patient advocates!
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Kudos to you from a fellow South Texan who is also a Sjogren's sufferer. Wow! What you have to deal with! Just shows how strong we humans can really be. Hats off!