1. < Autoimmune Diseases

Can’t regulate body temperature.

Posted by alex63 @alex63, 3 days ago

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

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

artemis1886 | @artemis1886 | 1 day ago

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.

REPLY
fibropositive14 | @fibropositive14 | 22 hours ago
In reply to @jmhilde61 "I have sarcoidosis and have suffered from around-the-clock hot flashes, night sweats, episodes of freezing, lack..." + (show)
@jmhilde61

I have sarcoidosis and have suffered from around-the-clock hot flashes, night sweats, episodes of freezing, lack of thermoregulation for going on 20 years. Ambient temperature and environment make no difference. I suffered serious sleep deprivation (to the point of suicidal thoughts) due to being constantly woken up by night sweats. I'm certain I have small fiber neuropathy (although the one biopsy I had five years ago was "borderline") as well as chronic inflammation, both of which affect my hypothalamus and autonomic functioning. Peri-menopause was suspected when this all first started (I was in my mid 40s ) so I tried every hormone therapy out there but nothing worked. Finally, a new OB/GYN nurse practitioner told me about Gabapentin. "It's been used for thermoregulation for at least 30 years," she said. No one had ever suggested this before, which was mind-boggling. Sure enough, 100mg in the morning and 200mg before bed (a tiny dose) keeps the sweating/freezing cycle mostly at bay with no side effects that I've noticed.

Jump to this post

Oh 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!

REPLY
1 reply
jmhilde61 | @jmhilde61 | 22 hours ago
In reply to @fibropositive14 "Oh that’s fantastic that you finally found something that works! Wow…at last! I’m taking pregablin for..." + (show)
@fibropositive14

Oh 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!

Jump to this post

Good luck, I hope the gabapentin helps! It changed my life! 🙂

REPLY
1 reply
fibropositive14 | @fibropositive14 | 14 hours ago
In reply to @jmhilde61 "Good luck, I hope the gabapentin helps! It changed my life! :-)" + (show)
@jmhilde61

Good luck, I hope the gabapentin helps! It changed my life! 🙂

Jump to this post

Oh wow! That’s amazing to hear, I’m hoping it will save mine too! Thank you ☺️

REPLY
View MoreView Less
Please sign in or register to post a reply.