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Can’t regulate body temperature.
Hi. I’m a newbie here and am like probably everyone has been - at my wits end. I need to find a new Dr but don’t know where to start. Problem is - I can’t regulate my body temperature at all. One moment I am hot. Next I am sweating. Next minute I’m shivering cold and totally wet from the sweat. Doesn’t matter if it is day or night. House is at 63, ceiling fan on high, naked in bed with single sheet for cover - I’m sweating- then cold … 10 mins later same thing again. All night long ball day long too. Outside in 33 degree weather and I’m sweating in a long sleeve t shirt. Hair wet from sweat. Can’t get cool. Then all of a sudden I’ll get cold for a little bit and shiver for a while. I’ve had test after test and yesterday I got a diagnosis of hereditary angiogram’s and mast cell activation. That makes no sense based on symptoms although I may have that too I doubt it. It isn’t hormonal and not thyroid related. I’ve searched and searched but can’t find anything similar. Any help is welcomed. Thank you
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I stay freezing since my neuropathy has became worse. Total hysterectomy in 2019 onHRT hormones ( progesterone 250SR, estrogen and testosterone cream 12 meq twicea day). As my neuropathy has became worse my body does not regulate my body temperature. My temperature has always been 97.5 still the same but it can be 105 in Texas and I am wearing a cardigan sweater I constantly carry in my car.
Diagnosis severe axonal sensorimotor poly peripheral neuropathy, dysautonomia, small fiber neuropathy,
Cardiac autonomic neuropathy, asthma, sjogrens, lupus. Just an fyi motor neuropathy causes tremors. My seizures has been linked to my seizures.
Along with RA and Elenor’s danlos a connective disorder, spinal bifida. All my inflammatory markers elevated but test negative for everything which don’t make much sense. I have the lupus rash and ultrasound shows stage 3 rheumatoid arthritis nodules. The doctor tried to tell meI was seronegative RA but read up on RA you can only have the nodules if you are positive now he is mad at me telling me I am too complicated and he is dropping me as a patient. Welcome to RA doctor verses the RN not a good match.
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1 ReactionOh that’s fantastic that you finally found something that works! Wow…at last!
I’m taking pregablin for pain relief as I have fibromyalgia but I’ve also got pots syndrome and I can nevvver evvver regulate my body temperature, exactly the same as you so I might mention this to my doctors and ask them to swap me..win win as it’s a pain relief as well as sorting the temperature out thank you 🙏 so so grateful as I suffer badly too!
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1 ReactionGood luck, I hope the gabapentin helps! It changed my life! 🙂
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1 ReactionOh wow! That’s amazing to hear, I’m hoping it will save mine too! Thank you ☺️
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1 ReactionI am allergic to gabaapentin. Lyrca and Neurotin. Glad you can take it. I felt like I was loosing my mind. I couldn’t remember anything and my face and mouth swelled up. I could not breath and I hope you never have to take epinephrine it’s like crawling a wall. At least I could breath.
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1 ReactionI've been going through the same thing now I'm throwing up on top of all of it and in my case I know it's the Vegas nerve it's regulating my brain my heart my stomach my fight or flight it regulates everything all of my central nervous system issues I did find several videos on the subject to help myself just felt I needed to share today.
There is still hope for all of us. Hugs
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1 ReactionI cannot find doctor in Pittsburgh to help me with sweating problems. I am trying to be seen at Mayo. Where were you diagnosed with mast cell related to sweating issue.