Cannot Regulate Body Temperature

Posted by ladybarlow @ladybarlow, May 17 11:31pm

I am at the end of my rope. I am having issues regulating my body temperature and no one can seem to tell me what is wrong with me. I’ve seen several specialists and no one seems to he able to provide a diagnosis. Most seem pretty quick to tell me that it doesn’t seem to relate to their specialty. It feels like no one even is trying to help. This has been an issue for more than ten years, but has significantly worsened over the last 4 years or so. Every time I get at all active, my body temp starts to increase. Ambient temperature doesn’t seem to have much bearing on the body temp. I don’t have a problem with the other end of the spectrum. I don’t seem to get cold. Almost never. Even when the environment is quite cool. It’s gotten to the point where I can’t even take care of my home and self-care is difficult. I just started checking my blood pressure when this is happening and I’m learning it is increased as well. It normally runs fairly low but is getting really high when my temp gets up. I’m seriously afraid of heatstroke or a stroke just trying to clean my house or fold my laundry. I’ve have multiple appointments locally and have also been seen more than once at Cleveland Clinic. I have a teenage daughter and I’m terrified that I’m going to leave her without a mom because I can’t get any answers. Where do I go from here? How do I get someone to help me and not just push me off into another specialty because they don’t know what is causing this?

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@texasblooms

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 I am no longer active.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.

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It's helpful to hear similar stories! Would you be able to share the name(s) of the doctors in south Texas that have helped you with your diagnosis? I live in south Texas as well, and am looking for suggestions. Thanks

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I also have burning in my body mostly middle of the night. I have psoriasis on my feet, this year mostly involves my heels burning and painful so I to can't be on them for extended periods.
No help as well from medical community.. I understand your pain
Wishing you better help in the future.

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