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Cannot Regulate Body Temperature
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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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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1 ReactionI 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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2 ReactionsI know it's hard find a doctor to help. My body gets so hot to the touch and I run low grade fevers on and off. I have several autommune diseases and having many symptoms of several other autommune diseases. Trying to find doctors that can help( not much luck so far) Hang in there keeping searching. Is there a Mayo near you ? That's where I am headed if don't get results soon. Went there before and got answers right away. Good luck!
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2 ReactionsI’ve been to Cleveland Clinic and I’m trying to stick with them for now. The rheumatologist there still believes it is Sjorgrens. We are going to try some treatment for that. Hopefully it will help
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4 ReactionsKey Takeaways
Excessive sweating and temperature changes are common symptoms experienced by people with systemic lupus erythematosus (SLE), affecting many of the estimated 1.5 million people with lupus in the United States.
I have this problem for decades, thought it was a very long menopause, I'm 76 years old female and have been diagnosed with RA and Sjogrens but I feel it's Lupus but still being analyzed. I have talked to a few doctors about being constantly hot and no response, I sweat through my nightgown at night, soaked pillow etc.
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2 ReactionsI have same problem. I had sweat glands tested to see if I had autonomic damage. Do you have farigue? I hate to say this but my symptoms seened to worsen after covid vaccine.
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2 ReactionsI do have terrible fatigue. I feel like my symptoms worsened after actually having Covid. But I have not said that to the doctors because I really don’t want to give them an “out”, if that makes sense. I don’t want them to lay it completely off on Long Covid and stop trying to find answers. Since I had the symptoms before Covid, I know that isn’t the sole cause. I wish you luck in finding answers too.
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2 ReactionsI seem to always bee sweating if I do not sit still and do NOTHING, with the AC on and a fan on me. I even wear one around my neck. I was told it was from Fibromyalgia because all my test came back good. Nothing like a dripping face with sweat pouring from my head and dripping wet hair.
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1 ReactionI have the same sweating problem. I have RA and fibro and did not know what was causing it. Your doctor told you it was fibro? I have not asked my doctor about it. Any treatment for this? It is really debilitating!!
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1 ReactionNot sure about the Lupus connection but I do have hard earned info about Sjogren's. I do know that Sjogren's can take out the small fibers that effect the long fibers that are the autonomic nervous system that are your temperature controls. They also tell the body where it is in relation to every else which effects your balance, which is what I have. Took us awhile to figure it out and I still have balance problems. So there you have it in a nutshell.
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