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Cannot Regulate Body Temperature
Autoimmune Diseases | Last Active: 19 hours ago | Replies (16)Comment receiving replies
I started with my GP. He did some chest and abdominal scans to look for any mass or lesions. Then to infectious disease specialist who worked me up for Lyme, and every other pathogen one can imagine. Gyn did menopause testing and put me on HRT but said she felt this is rheumatological. Had all the thyroid panels done. Went to Cleveland and saw rheumatology and Neurolgy. Neuro explained why they didn’t feel it fits a small fiber neuropathy. Rheumatology did additional labs and some
Other testing. Followed up with using virtual for almost a year. That doctor gave me his best guess diagnosis, Sjorgrens Syndrome. He had me follow up with a colleague who did a few more blood tests and said she didn’t think it is Sjorgrens. In fairness, I thought it might be because I have many of the symptoms. Dry eye, dry mouth. Dry skin, etc. I just saw an endocrinologist who ordered labs. A few of them came back abnormal but not all. And he had warned me that taking Tylenol before testing might cause a low false positive. I can’t avoid Tylenol due to chronic pain and it being in my
Pain med.
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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 I am no longer active.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.