Temperature Dysregulation in Dysautonomia – Dysautonomia Awareness Month

In part 2 of my dysautonomia journey, I mentioned that temperature dysregulation is my most prevalent and obnoxious symptom. I wanted to elaborate on what exactly temperature dysregulation is, and why it’s a common problem in dysautonomia patients.

Temperature dysregulation can include both heat intolerance and cold intolerance, but intolerance and dysregulation are different.

Being heat intolerant can simply mean you get extremely uncomfortable in the heat for some reason (can be unrelated to body temperature), and the same is true for cold intolerance. With my fibromyalgia alone, I’m cold intolerant – my fibro pain dramatically increases in cold weather. With my generalized hypermobility spectrum disorder (G-HSD, or GHSD), I’m cold intolerant because the cold weather makes the connective tissues stiff and makes my body move in ways it’s not accustomed to. Those two instances alone do not mean that I experience temperature dysregulation when it’s cold, just that I have cold intolerance because the cold makes my body cranky.

Temperature dysregulation refers directly to body temperature. When you do not have a fever, your body automatically adjusts to keep your body temperature steady so that you don’t overheat nor get too cold. If you take your temperature with a thermometer when you feel normal, you will be about 98.6°F (37°C). (Normal body temperature for an adult is considered to be anywhere between 97.7°F and 99°F, or 36.5°C and 37.2°C. I am consistently at 97.6°F, which is my “normal.”)

Dysregulation is a medical term that means “impairment of a physiological regulatory mechanism” (from Merriam-Webster). A physiological process is just any process your body normally does, like converting sugar into energy or getting a fever when you get sick to kill off the bug. When a physiological process is dysregulated, that means it is no longer happening at the proper time or in the proper manner.

thermostatTherefore, temperature dysregulation means that your body cannot hold your temperature steady at the “normal” temperature – at least not always. Essentially, your internal thermostat is broken.

 

Body temperature is controlled by the autonomic nervous system (if it wasn’t, you could literally think “I’m going to be warmer,” and you’d warm up). In dysautonomia, the autonomic nervous system does not properly function, and body temperature is one of the things that can be effected by this. (I write more about what exactly dysautonomia is in this post.)

When your body cannot properly regulate your body temperature, you can very easily overheat (experience hyperthermia) or get too cold (experience hypothermia). Sometimes, you can be sitting perfectly still and get hit with a massive hot flash out of nowhere and become severely overheated. Sometimes, you can be moving around and suddenly be hit with the chills and become extremely under-heated. This happens without warning, and usually quite suddenly. It does usually happen in a more expected manner – where you heat up or cool down more dramatically than appropriate, but doing an expected activity. (Though, hot flashes can still be a problem when sitting around.)

How Does This Affect Me?

My temperature dysregulation has been getting worse, and frustratingly there is nothing that can medically be done about it outside of symptom management (so if I get too hot then I need to cool down and vice versa).

flames in headThe main problem I experience is overheating. If I’m sitting in a house that is what most people would call “comfortably warm” or “cozy,” I will suddenly overheat to the degree a normal person would when going for a jog in 100°F (37.8°C) weather. No, I’m not exaggerating. I will be sitting perfectly still wearing jeans and tee shirt at 75°F (about 24°C) and very suddenly get red, [hopefully] start sweating profusely, start panting (because I’m a dog? I don’t know, it’s automatic), get extremely hot around my neck and ears as if someone has a hair dryer on them, get very thirsty, start to feel very dizzy, and just generally start to feel very unwell. I don’t usually overheat like that if I’m outside with a breeze or if I have more skin exposed, but it can still happen occasionally. This will happen much more easily if I’m exerting myself in any way. Sometimes, it’ll happen when the surrounding air isn’t even at 75°F, but is cooler!

I will also run low-grade fevers randomly. The fever will come on, then it’ll go away for a bit, then come back, and kind of yo-yo for a little while. It’s very uncomfortable and is very difficult to deal with. These most often happen while I’m sitting still on the couch in the evening.

ice-tea-2250366_1920The only way to cool myself down is to remove as many layers as possible, and drink something cold. If I’m desperate, I’ll use ice packs, but those usually make my fibro act up so I try not to use them too much. I can also use cool compresses (wet washcloths placed on the body). I bought some mister fans to use this summer, so that I could hopefully exert myself a little more, and they were vital in helping me enjoy summer! (The large mister fan allowed me to walk around at the Grand Canyon this summer! You can see it in my Instagram picture: here.)

cold Charlie BrownI do also experience periods of feeling like I’m freezing to death. These almost always happen when I’m holding still in the winter (even if I’m inside where it’s much warmer), but they will happen if I’m exerting myself outside on a very cold day (it has to be below freezing, which is 32°F or 0°C). When I get too cold: my skin turns white (like, ghostly white), my fingers and toes get “pruny” as if they’ve been soaking in water but they’re dry, my joints and muscles get stiff, I start shaking uncontrollably – including the chattering teeth, and I get extremely sleepy. The shaking and stiffness are very uncomfortable, so is losing all the feeling in your fingers and toes. While it sounds like it’s less unpleasant (it is) it is still not good for the body.

baboons-4371_1920To heat myself back up, I drink tea or eat soup (or other hot food, but liquid is more effective because it takes less heat to digest), use heating pads, and use an electric blanket on high. Putting on extra layers only works if I’m outside to insulate me from the cold air, but I will still need a hot drink – clothing layers only work if you’re producing your own body heat to warm up the air inside the clothing. When I get too cold, my body stops producing its own heat, so that won’t work. Using another being’s body heat also helps heat you up, such as a significant other or a pet. Thankfully, when it’s cold, my two kitties love to snuggle so that really helps warm me back up! (My favorite teas are from Republic of Tea. If you sign up to earn rewards using this link, we’ll both get $10 off our next purchase of $25 or more!)

My body also does a weird thing where it overreacts to temperature and will do the right thing but far too much of it or too quickly. For example: I’ll go for a walk on a cool evening and my body will get chilly, but as soon as I come inside I have to quickly remove all of my layers because I’ll immediately overheat and feel sick. This leads to weird “it’s below freezing but I’m taking my hat off and unzipping my coat before I’ve even opened my front door” moments.

These things are all due to temperature dysregulation, which has come about thanks to my dysautonomia. Unfortunately, there is not medication that can fix temperature dysregulation, so the methods I mentioned for heating up and cooling down are all I have to cope with them. Layers have become vital in being able to survive. I also have to be sure I have water around at all times because room temperature water can help stabilize my body in both directions (or at least keep it from getting so bad that I get sick).  I am getting a little better at regulating it, but it will always be tricky. Thankfully, Dan is also getting better at helping me regulate it!


Do you experience temperature dysregulation? What are some methods you use to help manage it?



Please share this post to help spread awareness for dysautonomia and what it’s like to live with it! No one should have to wait six years for a diagnosis!

I am one of 70 million

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2 thoughts on “Temperature Dysregulation in Dysautonomia – Dysautonomia Awareness Month

  1. Wow! Thank you for posting about this. I now feel like there is someone else that understands. For years I’ve been trying to figure out what “this temperature problem” is that I have. I’ve been shrugged off by doctors and others have had blood test that have come back negative. I feel like I finally have something to go on now. I also have Fibromyalgia. The worst for me is the hot flashes. I try to eat or drink something cold and I’ve slept with ice packs. What works best is an aloe cooling mask from The Body Shop.

    Liked by 1 person

    • I’m so sorry you deal with temperature dysregulation too. Mine is getting more and more severe, and I overheat dangerously fast now. It’s extremely frustrating. Though, I will also suddenly be freezing when it’s 77 (F), so who knows what it will do. We’re working on trying to figure it out, but so far the only thing that helps keep me cool is a misting fan I got last year. I’ll see if I can find that cooling mask you mentioned!

      Like

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