Fevers- Dysautonomia Related?

[KareBear]

I have severe problems with body temperature regulation. Moving around worsens it, like walking to another room in my house or anything that causes heart rate to inrease higher than my resting rate, and I get super hot and sweat a lot. As soon as I lay down I start to cool off immediately and stop sweating. Does anyone know of anything that helps this? It's miserable feeling and only laying down seems to help.

One minute I am cold and need a blanket and the next I need fans blowing on me constantly. I am never a happy medium and comfortable.

The other temperature issue is I get frequent low grade fevers especially if I am more tired than normal from lack of sleep (I have insomnia bad). Again, nothing seems to help this except finally getting some sleep. Does anyone else have this problem? Does anyone know if it's dysautonomia related or not?

[corina]

Hi KareBear, welcome to the forum! I'm not sure but I've had a few unexplained high fevers lately. I'm seeing my doc ANS on monday and will ask him about it. Will let you know when I have an answer, meanwhile I hope your temp won't mess you up too much!

[KareBear]

Thank u Corina, ur too kind! I'd love to know what he says. Dont go out of ur way though, I know u will have a lot on ur mind at ur appointment, and I hope things go well when u see him Monday.

On a side note, I can see many people here seem to have known each other a while I'm kind of an outsider so Thank u for ur welcome!!

[kayjay]

KareBear- you are not an outsider! I'm glad to have you on here and your doggie is adorable.

You also are not alone. My body temp is usually at least 99.6 to 99.9. I have always suspected that it was from the "hyper" action. I get very sweaty and then feel cold.

I am on a beta blocker and I think it is helping.

One more thought because I was just talking to my mother about this today- sleep is huge! Make sure you talk to your doctor about not sleeping. I used to barely sleep every night and I would wake up in a disgusting puddle of sweat- freezing. I do take medication to sleep.

[KareBear]

Nice to meet u kayjay! It does make sense that that could cause fevers and mine is also in the same temp range as urs, the low grade temps always seem to feel worse and more miserable than higher temps.

When my insomnia is at its worst is when I have more fevers and temp problems and I never bothered to mention it to my docs bcuz I know dysautonomia can affect our sleep/wake cycles so I thought I just had to deal with it. Its good to know that getting more sleep is helping ur temp, I think I will talk to my doc about this. It's worth a try!

Thanks for making me feel welcome!! And for ur advice!

Btw, love ur doggy pic too!

[Guest Alex]

Karebear,

Welcome to dinet, and please don’t feel like an outsider. You’ll see that we’re a very friendly and helpful bunch and you’ll be able to get to know us and make new friends in no time

In terms of your questions, here is my understanding of how the body regulates its temp and what may go wrong…

The hypothalamus, at the base of the brain is the integrator of the automatic nervous system. Its main function is homeostasis. Factors such as blood pressure, body temperature, heart rate, electrolyte balance are held to precise values called set-points. Body temp is controlled by the thermoregulatory center in the hypothalamus and it’s maintained at a constant 37 C or 98 F give or take (the set-point of the hypothalamic thermostat). This center has a heat loss section – this gets stimulated when we get too hot, and a heat conservation one – stimulated when we get too cold.

There are 2 sets of nerve receptors that send info to the hypothalamus: one set are in the spinal cord and in the hypothalamus itself – these monitor the core temp (the temp of the blood passing through the brain) and another set of receptors located in the skin. The hypothalamus uses both sets of receptors to make the necessary body temperature adjustments.

When it’s too cold we turn the heat on or add extra layers of clothing, when it’s too hot we turn the AC on, drink extra fluids …etc. When these responses are not enough, the thermoregulatory center is stimulated. This is part of the ANS so we don’t voluntarily control its responses. If the ANS is not working properly (sometimes due to orthostatic stress), this thermoregulatory center may be affected, thus your body loses the ability to regulate its temperature, or it’s even possible for the set-point temperature to be either lower or higher than the “norm”.

A fever on the other hand usually occurs when pyrogens (a category of chemicals) increase the set-point temp of the thermoregulatory center. There are many substances that can act as pyrogens – proteins, endotoxins secreted by bacteria, breakdowns of proteins, and according to some, even dying white blood cells (endogenous pyrogens).

I think that it’s possible for a fever to impact the functioning of one’s ANS but I doubt a malfunctioning ANS can cause a fever in the true sense of the word. Any chance that what you’re perceiving as a low grade fever to actually be due to the fact that your internal thermostat is somewhat labile and instead of maintaining a constant temp at all times it is sometimes set for a higher value? This could be due to the fact that your ANS is not functioning properly, thus the thermoregulatory center is not getting the right signals from the skin and/or brain... (just a theory)

Alex

PS Dexter is such a cute puppy!

[KareBear]

Thank u for ur response Alex! It's nice to meet u and thank u for taking the time to respond. U have such an amazing amount of information and explain it very well. Everything u said makes sense. I do think that maybe "fever" is the incorrect term like u said and that it is a higher body temp because mine always is high and certain things like standing or moving causes it to go up even more and I start sweating like crazy. It's extremely annoying. Good thing I dont stand much most days.

I'm going to talk to my doc about it just to see what her thoughts are and I'll let u know. The info u provided is a huge help and gives me some ideas to look at. So, thank u. I assume if it is ANS related then there r no meds to help it? Does anyone know if there is? I will have to research that also. This symptom bothers me a lot because I have to keep 3 fans on high pointing at me at all times and the A/C on very cold. I cant even step outside in the heat for even a few seconds.

It's amazing how many bizarre symptoms we have and have to put up with. It really makes it hard to get help when every area of our bodies is affected. I see so many on here see multiple docs and i dont know how u do it. I can only leave the house once a month if I'm lucky and with help. Even that is very taxing on me, Recovery takes a long time. Kudos to everyone here that finds a way to get out there and see different docs, I know it must be so difficult.

I appreciate everyone here and all the help and information. What a great group of friends here

[Darlene72]

Hello KareBear!

I mean this in the most loving way, I am so glad I am not alone! I am new here as well, looking for answers and this is a HUGE issue for me. I literally feel my body thermometer just does not work and having a full thyroidectomy in 08' didn't help. I either have the chills or I am sweating to death. I can't even go outside for long periods of time, hate walking because I sweat so bad, my hair gets drenched and I feel like I have no air around me and can't cool down, I even sweat in 20 degree weather! My kids say I can move to Alaska, cuddle with a penguin and still sweat.Or I'm so cold, I put on a blanket shivering and sweat again 5 minutes later. Between brain fog, palpitations, soreness in muscles, sweating etc.. I felt like I was insane! No one understands, family or friends. They say i need to exercise more, lose some weight maybe (impossible), I'm antisocial (i used to be a social butterfly) or just don't want to be bothered. They think its not possible for me to be as tired and weak as i say i an. Dr's think I'm insane! I would think they knew about this stuff or would have saw it in my paperwork? I was diagnosed as having Autonomic Dysfunction in 2008, was given BP meds and sent on my way, no explanation, and not one Dr went back to it since. I just found out the name 2 weeks ago! If I heard or read the word Fibromyalgia one more time, I was going to scream because I knew it was something else. I don't even know what my normal body temp is, but I do know that within the past 5-10 years, I never get a fever when I'm sick. I feel feverish, my skin feels hot to me but not others and the thermometers maybe go to a max of 99. That's pretty scary if fevers fight I infection and I am not getting fevers?

This has had such a negative impact on my life for so long but now, knowing I'm not alone, I feel like I have some hope. I will continue on here because at least someone understands. Thank you so much for your post

[Lethargic Smiles]

I got a fever in early February of 2008 which was shortly followed by a terrible bout of mono that included your normal, high fevers. That was followed by years of all kinds of stuff that I won't get into, but it all got me to where I am now... including still having low grade fevers. Every "normal" day, my comfortable temperature is 98.6, but toward the end of the day, especially if it is a "bad" day or I've done too much, it creeps up to 99.8-100.2. It feels awful.

Biofeedback is the thing that has helped my daily fevers most and now I only get them a few times a week. Beta blocker, pain meds, Midodrine, steroids, all had no effect (good or bad) on my low-grade fevers. I don't have much additional input other than be careful with ibuprofen if you use that to bring down your fevers. I always used it. When I continued taking it even when I couldn't eat, the effect of it on an empty stomach gave me bleeding ulcers! I now use Tylenol once a day, sometimes twice. I miss the NSAID action, but Tylenol is a bit safer for me so long as no more than 4000 mg a day is taken which can lead to accidental death.

[KareBear]

Darlene72, you are certainly not alone. This is a daily issue for me and the more worn out I get (from trying to push myself to do more) or the more tired I get (from not enough sleep) makes this problem worse. If Am up and moving around, which is always inside my house, I start sweating profusely. As soon as I lay back down and relax I immediately start to cool off. It's quite miserable. I can even get out of my shower (which I take sitting) and am already sweating when I get out and the water is cool, never vary war at all.

Jackie, thank you for your input about the meds. I dont currently take anything for it because my temp is constantly going from one extreme to another that before the meds would have time to kick in the fever would already be gone. Usually laying down helps but it's frustrating that I cant even walk a short distance without breaking a big sweat and burning up. I am going to keep your thought on motrin/tylenol though. Can I ask what exactly is biofeedback and how has it helped you?

Thank you for your responses and information, It really helps so much!

[Lethargic Smiles]

Hey KareBare. Fevers are so frustrating and your case sounds especially so! Yours is different than mine in that when mine comes, it tends to stay for at least a few hours. However, like you, I also sometimes have low body temperature. In my own experience, Tylenol doesn't bring my temperature down to the weird low temps I get some days. I wonder if you could ask your doctor if you could take tylenol (if you wanted to of course) as a preventative measure? Fevers can be very debilitating, especially on top of everything else we deal with!

The biofeedback therapy I've received is from a doctor experienced with POTS and is a combination of thermal, EMG (muscle tension), and galvanic skin response (GSR) biofeedback in addition to HeartMath's emWave software which helps me learn to control my heart rate variability. For more on what all of those are, see my link to my blog below. On the page I linked, I explain each type of biofeedback and why it matters. I'd just copy/paste, but it'd make a looongggg post.

It has helped some, especially with symptoms like nausea, lightheadedness, muscle aches, pre-syncope (helped a ton with this), and some with the fevers... It helps some of the time with how much I can exert myself which is a nice change. It has helped with other stuff too but I am pretty foggy right now, so I am sorry I am not very concise! It hasn't been a cure-all as of yet for me as it has been for some, but I definitely don't regret going or spending the money on it. I've written all about the whole experience thus far on my blog as much as I can. Here is a post to get you started and it explains how biofeedback helps/what it is/how it works: http://lethargicsmiles.wordpress.com/2013/07/26/pots-treatment-center-equipment/

Also, here's two threads on the center I went to for the biofeedback.

http://forums.dinet.org/index.php?/topic/21303-pots-treatment-center-dr-kyprianou/

http://forums.dinet.org/index.php?/topic/23567-pots-treatment-center-in-dallas-texas-dr-kyprianou/

[KareBear]

Thank you Jackie! Your blog has a lot of great info and I appreciate your description of biofeedback, it's very interesting and something worth looking into.

[Anoj]

in 2005, i started running a low-grade fever after a bladder infection. it didn't go away. lasted about 2 years. it was a terrible time in my life. little did i know how much worse things would get in 2010 when i suddently got POTS.

the fevers would come on, or at least get worse, at the same time every night. from around 6-9 p.m., the fever would feel at its worst. i went to 14 docs (different kinds), to try to figure out the cause, which no one ever did. eventually, the fever slowly and gradually went away. i never knew what caused it, but after getting POTS i suspect it was an autonomic dysfunction.

fast forward, and now i am experiencing low-grade fevers again, also worse around that time of night. they are bothersome, but not nearly as bothersome as my other symptoms.

everything else you wrote, i could have written myself. in fact, i came on here tonight to write a post about sweating. standing up is causing me a lot of sweating issues lately. but when i run the fever, i'm freezing cold. i wear a warm robe between 6-9 p.m. and after that crank the air to almost freezing, because after being cold goes away, i get hot. both feelings are very uncomfortable. heat and cold intolerance.

i suspect my sweating is coming from the "hyper" reaction to blood pooling when standing. it's really aggravating. i will take a bath, be all clean, get up, and just from the simple activity of walking to the bedroom, getting pajamas out of my drawer and putting them on, i'm ALREADY SWEATING. i just cleaned myself, yet i'm wet from sweat.

i am weaning off of my SSRI right now due to weight gain, and my dysautonomia is worse. it is very tempting to get back on, but i am determined to lose the 80 lbs i put on becs of it. i am so tired i barely feel like going anywhere. i am very inactive right now, which i know is not good for this disease.

i am just writing to share my experiences and let you know what you are describing doesn't sound unusual or abnormal regarding dysautonomia at all.

[KareBear]

Thank you Anoj, what you describe about showering and sweating right after getting out is exactly what happens to me too and it is so frustrating. It's good to know I'm not alone though I am sorry you have to deal with this also.