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Dysautonomia and abnormal temperature regulation


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Hi, I am wondering of anyone has a problem with body temperature regulation from dysautonomia? I am experiencing autoimmune issues currently, which always make POTS worse for me. Part of this are frequent unexplained fevers without an infection. I get IV fluids three times a week via port for POTS and normally tolerate them really well. However - these last few weeks I have been getting extremely cold, with shivering and uncontrollable shaking after about 10 minutes of infusion. The fluids are usually room temperature and never caused this reaction before, but I have been warming them up to avoid the cold reaction. Shortly after the freezing sets in I get a fever between 101.5 and 102.8. Whenever this happens I stop the infusion, take Tylenol and rest. The fever usually lasts for 24 hours. 

This might be due to hyper-responsiveness of the ANS from the inflammatory condition, but I also read that dysautonomia can cause chaos with temperature control ( since thermoregulation is part of the ANS ). 

Does anyone here experience problems with body temperature control, specifically unexplained fevers? I also do not sweat, and I know that this is also caused by dysautonomia, and may contribute to the temperature problems. Any Input or sharing of experiences would be greatly appreciated. 

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Yes, I have this issue - one of the reasons why it took me so long to realise I had Covid and not just normal POTS problems!  When I first gave up work as I was on the point of complete collapse I would say I ran a slightly elevated temperature most of the time and I would also spike fevers randomly.  I would feel freezing cold and shiver if the temperature dropped even a little and it would take me hours to warm up despite hot drinks and heated pads.  Similarly if I got too hot it would take ages for me to cool down.  As all my bloods came back normal my doctors were baffled and finally just gave up worrying about it and told me to take paracetamol if the fevers bothered me.  This was long before my dysautonomia diagnosis but it is now obvious to me that my ANS was on a hair trigger and reacted far out of proportion to any change in the temperature.

Fifteen years later and I don't have the same level of issues but about once a month (although it can be more often) I will still spike a fever in the evening or wake up burning up.  It doesn't seem to be linked to flares or what I have done that day, it can happen on a day I've been relatively well.  I take a codeine/paracetamol combination in the morning and early afternoon to deal with hEDS pain so it could be that what I think of as an evening fever is actually an all day affair which is masked by the paracetamol I have taken.  I used to have hyperhidrosis - this has also changed over time so like you I now rarely sweat at all.  

So I can sympathise with you but not offer any answers as to what is going on - I just tell medical professionals that my temperature is often not a reliable indicator of whether or not I have an infection.  It made Covid interesting though - you are supposed to self-isolate until you stop having fevers, my GP decided that we would just have to say that after 20 days it was very unlikely I was still infectious!

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@cmep37 - thank you for your response, that is exactly I was looking for - someone who also runs fevers that are unexplained! I am still not sure if the still ongoing fevers are residual from the inflammatory reaction or a result of the dysautonomia being triggered by all of the stress my body has went through these past 8 weeks. 

6 hours ago, cmep37 said:

It made Covid interesting though - you are supposed to self-isolate until you stop having fevers, my GP decided that we would just have to say that after 20 days it was very unlikely I was still infectious!

Huh - at my Family Practice they do not allow anyone that has had a fever within 3 days inside the building. So I have actually only been seen via telehealth appointments, and with the symptoms I had it was a bit difficult for the doc to examine me! I truly wonder - what do they do with all of the patients that have the flu, or pneumonia, or tonsillitis? I do appreciate telehealth, but I also know that it does not replace a physical exam! IMO: enough is enough, use common sense and treat the patients that have a fever for reasons other than COVID! Here in the US the health department decides when the quarantene period is over, and mine was over after 10 days. Yet the doctors office still would not allow me inside after 4 WEEKS! Just because of the fever! 

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I've had problems with overheating since 1984 and it's gotten worse over time. I cannot tolerate heat and also as I have neuropathy the cold makes my limbs freeze. This is odd when my torso and head overheat and my limbs freeze. My hands and feet burn and freeze. It's all so much worse since the pituitary tumour and taking hydrocortisone. I can run a temperature and also have low temperature at times. I can feel feverish and shiver a lot. 

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Psychological stress can contribute to the development or exacerbation of low-grade fevers in some people through activation of the sympathetic nervous system which is known to increase core body temperature by increasing thermogenesis. Plasma levels of noradrenaline and adrenaline increase during times of stress. Heat loss decreases due to peripheral vasoconstriction.

This thorough study (below) of a woman with CFS demonstrated that her low grade fevers were stress induced:   

Psychological stress contributed to the development of low-grade fever in a patient with chronic fatigue syndrome: a case report, Takakazu Oka, Yoshio Kanemitsu, Nobuyuki Sudo, Haruo Hayashi & Kae Oka, BioPsychoSocial Medicine, Vol. 7, Article number: 7; 2013

https://bpsmedicine.biomedcentral.com/articles/10.1186/1751-0759-7-7

This head-busting article demonstrates just how complicated the subject of fevers can be:

Central mediators involved in the febrile response: effects of antipyretic drugs, Aleksander R Zampronio,Denis M Soares, and Glória E P Souza, Temperature (Austin), Vol. 2(4), pp.506–521: 2015

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4843933/

And just so we all know – humans have changed over the 150 years since the average normal body temperature of 98.6° F (37° C) was established. Recent studies indicate that 98.2° F (36.8°C) is a more accurate average, and in older individuals it may be about 1° F lower. One small study even suggested that in healthy older patients, body temperature ranged from 94° F to 99.6° F, with an average of 97.7° F.

“When is body temperature too low?”, Harvard Health Publishing, January 29, 2020

https://www.health.harvard.edu/staying-healthy/when-is-body-temperature-too-low

When I was younger, I always seemed to run a low-grade, unexplained fever and then later, too, with Lyme disease. My youth was filled with tons of stress and Lyme disease was awful. After encephalitis in 2012, I stopped sweating entirely for about two years and now sweat some. Before beginning ashwagandha herb in 2017 body temp ran about 99.7° F post-encephalitis, but now stays around 97.5-98.6° F whether I feel “normal” or cold. I did recently lower the dose of ashwagandha (I lost weight) and have stopped feeling freezing all the time. In the summer I did get occasional increased body temperature if outside too long in the heat due to my anhidrosis. I rarely ever take my temperature anymore and don’t worry about it. Autonomic dysfunctions, including autonomic neuropathies and ganglionopathies, can impair thermoregulatory pathways and added stresses can compound the problem. I always feel better if I keep personal stress at low levels whenever possible, but sometimes negative experiences linger in mind or pop back up when you least expect the memories, or, darn it, a totally new, stressful issue crops up. You have been greatly stressed by Covid and then the issue with legs, so hopefully your entire system will settle down as you get further past these unpleasant experiences.  

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13 hours ago, Rexie said:

And just so we all know – humans have changed over the 150 years since the average normal body temperature of 98.6° F (37° C) was established. Recent studies indicate that 98.2° F (36.8°C) is a more accurate average, and in older individuals it may be about 1° F lower. One small study even suggested that in healthy older patients, body temperature ranged from 94° F to 99.6° F, with an average of 97.7° F.

I have noticed that my temps are lower when i get up in the morning and go up a bit during the day. My average temp hangs around 97.1 to 97.6. I know stress can influence temps as well back in spring of 2019 i was not feeling well and went into the walkin clinic my temperature was 102.3 and a hr of 120 and tested positive for the flu. Nurses took my vitals a second time and my temperature went down to 99 and the hr dropped to 62. I may have calmed down a bit while waiting for the test results. I know i was feeling pretty stressed when i first walked in. 

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I have terrible body temperature regulation. I think heat intolerance is one of my worst symptoms because I can feel blazing hot even if it's a comfortable temperature. There are times where I feel cold when I shouldn't too. Both have been worse this year for some unknown reason. I bought a new thermometer because of the pandemic and I found out that I'm running in the high 99's-low 100's more often than I ever realized. It is worse in humid conditions even if its only in the 70's.  Whenever my body temp gets in the 100's I will get goosebumps and begin to feel like I'm having heat exhaustion. I can go from feeling cold to hot to cold. 

In the winter time, my feet and legs get so cold and dead feeling. I get terrible chilblains on them every year to the point that my toenails stop growing and die off.

Interestingly when I get sick, I rarely ever mount a fever. The last time I had a fever due to sickness was 2009 with H1N1. I had strep in 2012 and never had a fever which is why I let it go untreated. ugh My body doesn't know what to do it seems. haha

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