I woke up one morning recently in a lot of pain. I didn’t know it though. It took me about twenty minutes to figure it out. When I realized that something was painful, I started sobbing. I do not cry because of physical pain. It isn’t a thing I do. I was in so much pain, in so many muscles and joints and whatever else, that I was crying. A lot.
But not for the first twenty minutes I was awake.
For those twenty minutes, I just knew something was wrong. I knew that I was tired and wanted to be asleep, but couldn’t sleep. I knew that I couldn’t talk. I knew something was very wrong and I needed help.
Stomach feels off. Lying down, but still a little dizzy. Can breathe normally if I try, but if I get distracted my breath quickens dramatically.
Sad? No. Angry? No. Barely awake. Maybe a bad dream? I don’t think so.
I’ve gotten better at finding help when I can’t talk…
But how do I get help when I don’t know what’s wrong?
Trapped in my own mind, again…I pushed my forehead against the wall like I often do as a sort of stim. And it felt good. Not just stim good, but it relieved pain.
And I realized: pain.
Headache. Migraine? Maybe. Jaw pain. My whole face. My neck. My hips. My shoulders. All of me.
I started crying. I woke up Patrick and put his hand on my head. Together we figured it out and fixed it. Advil. Backrub. Hydrate. Coffee. Air conditioning.
A few hours later, I’m shiny and new and awesome.
This is a post about pain.
This is also a post about brains.
This is big.
And I know it’s not just big for me. This is a big deal generally.
There’s a lot of talk about alexithymia when talking about autism, but typically the conversation focuses on failing to identify or label emotions. Everything tends to be simplified to sad or scared or happy…or even just good or bad. And that’s a very real thing that can happen.
But there’s a lot more to it than that, and I think there needs to be a conversation about it.
I have described myself as being both hypo- and hyper-sensitive, depending on the sensation or the context. A lot of autistic individuals experience both extremes, and I think it is pretty indisputable that it’s possible to be both, even when you take out the complicating factor of physical pain.
For instance, I am very often overloaded with bright or flashing lights or high-pitched sounds, but almost never bothered by odors. It’s almost comical how bad my sense of smell is. Even senses that are typically in overdrive for me (like touch) can be super dull from time to time, and there are a whole lot of factors that go into whether that might be the case in any given moment. It’s personally very confusing.
This great blog post from The Third Glance describes being both hypersensitive and simultaneously having a very high pain tolerance. She talks about it so well that I’m not even going to throw in my two cents on the phenomenon, because damn she just says it all.
Instead I’m going to expand on it a little, to say that I consider my incredibly high pain tolerance (so, so high) to be a part of the way I experience alexithymia, or in fact the most prominent feature of how I experience it.
And I’m going to try to get a little sciencey. Stick around.
Playing at Neurology
Here, have a rainbow brain. On the house.
I’m going to take a detour into the neurology of pain for a sec, because 1) I think it’s cool, 2) it’s just sort of what I do as a budding neuro-cognitive-linguistic-whatever, and 3) it might prompt interesting discussion. Of course, if you don’t care about this sort of stuff, feel free to skip this section. It’s relevant, but not super important for the rest of the post. You can just go ahead and click here to skip to the next bit where I will sum up this whole long thing in a few sentences. Seriously, this part is just if you’re interested in the science behind it. I’m going to try to pepper this bit with helpful wikipedia articles in case I explain something poorly and you want a better description.
Let’s talk about classifications of pain. There are three biggies:
- Nociceptive pain describes that sensation most people associate with the word “pain.” Nociception would include pain from paper cuts, hangovers, vengeful cats, waxing your eyebrows, eating too much…all that good stuff. Or bad stuff I guess. This is the main type of pain I will talk about, since it is what “pain tolerance” usually refers to.
- Neuropathic pain is experienced by most people from time to time (it’s the shooting pain when you stub your toe or hit your funny bone, but NOT the achey unpleasantness that lingers for a while), but the vast majority of this pain comes from damage to the spinal cord, brain, or peripheral nervous system from diseases like multiple sclerosis (MS), HIV, or diabetes, or trauma damage from things like stroke, toxins, or even severe whiplash if it’s in just the right spot. No good.
- Psychogenic pain is “all in your head,” but what a horrible expression, since everything you have ever experienced is all in your head…that’s where your brain is, duh. Psychogenic pain means the pain is caused or prolonged by emotional or behavioral factors, but it does not mean the pain isn’t real. I can’t stress that enough. If someone experiences psychogenic pain they cannot just magically stop experiencing it, and they are not making it up or being manipulative. They feel the pain just as much as someone would feel either of the other kinds. All it means is that you need a different approach to pain management. Seriously. Stop giving people crap about psychogenic pain and illness (including psychogenic voice disorders and Non-Verbal Fairy type stuff). It doesn’t mean they are crazy or mean or stupid, it means they are in pain and need medical and psychological assistance, and it is nothing to be ashamed of. Wow, ending that rant now. Oh also, phantom pain (like when you have a limb amputated but somehow it still hurts) isn’t psychogenic, it’s neuropathic. Just fyi I guess.
A quick word on the sense of touch.
Think about touching something. Better yet, touch something. Do it. Ok fine I’ll do it. I’m touching my computer keyboard. Would you like to know what it feels like? Yeah it’s not super exciting, but hold up, it’s relevant.
With my hands resting on the home keys my fingertips feel a very slight curve in each of the keys. My pointer fingers can feel the bumps on the f and j keys. If I move my fingers around a little I feel the gaps between the keys; each fingertip feels the edges of two keys and the air in between them since the metal base is lower. My right thumb rests on the space bar and if I move it I can feel that it’s bigger than the other keys. My left thumb doesn’t feel much because it hovers a little above the space bar. My palms rest on the base of the laptop. There is a lot of pressure as I type and less when I just rest my fingers on the keys. The base where my palms are is cool to the touch, but the keys are slightly warm.
Ok that’s enough of that. But I want to point out a few things about what I described. All of it was “touch,” right? Yeah. But in fact I talked about perceiving the shapes and sizes of things, the temperatures of things, and where different parts of my hands were and what they felt as opposed to other parts. All of this fun stuff is touch, but because it can be broken down into categories, it can be more appropriate to refer not to your sense of touch, but to your somatic senses.
Fun fact, somatic senses also include pain receptors, the nociceptive ones. My computer keyboard on its own doesn’t really hurt, but if my laptop were to overheat it probably would. Or if my cats decided it was their turn to use my computer (they do that) and they jumped up and clawed at my hands until they could lie down on my keyboard and I pet them, that would hurt too. So that’s touch, temperature, proprioception (body positioning), and pain. There’s a few other things too, but whatevs.
Moving on to some fun sciencey stuff about nociception.
See I told you I was coming back to this.
So nociception is processing nociceptive pain, or more definition-y: ”the neural processes of encoding and processing noxious stimuli.” That’s a wikipedia definition, so take it with a grain of salt. Remember that this type of pain is part of your somatic sensory system, the whole touch thing, but it’s a particular kind of touch. My computer keys typically don’t hurt me even though I can feel them, but cat claws typically do. So in this context, cat claws are a noxious stimulus, and computer keys, thankfully, are not.
The trick about nociceptors (also called pain receptors in everyday conversation) is that they don’t just sense everything as a low or unnoticeable amount of pain. When I have my hands on my keyboard, painlessly, my nociceptors are active, but they are sending a message to my brain saying “everything’s cool here,” so I can just do the touch and temperature and proprioceptive parts without the pain signals.
For there to be a nociceptive response (and I’ll explain in a second why I keep saying that instead of just saying “pain”) the noxious stimuli would need to cross a threshold. So like, “We’re cool, cool cool cool, la la la, WAIT, not cool!”
At this point your brain releases glutamate, an excitatory neurotransmitter, and if your thalamus gets involved (and it likely will) your consciousness goes “Aha! Pain! But where???” because your thalamus can’t localize pain. Stupid thalamus. But then! If the stimulus continues to be present (and continues to be noxious) the signal might go to the somatosensory cortex, which very literally looks like this:
Literally! It LITERALLY looks like this!
Ok, ok, it doesn’t literally look like that. But your sensory cortex is mapped out in such a way that signals from different parts of your body go to corresponding parts of the cortex, roughly an upside down and weirdly disproportionate representation of your body, with your toes up top and your humongous face and tongue down at the bottom.
So if the signal reaches this mess of a cortex, you can determine both where the pain is on your body, and also begin to describe what the sensation feels like. Remember you could already describe touch, temperature, and body placement. At this point though I could say, if my cat clawed my hand while I was typing, “Huh. The back of my hand hurts. It’s kind of stingy sort of near my pinky joint, it’s kind of burning and itchy right around it, and my whole hand is a little achy.” And then I might follow up with “OW! Damn it Gilroy, that hurt! You’re the worst!”
Fun fact! No, really, this is a pretty entertaining thing: the genitals are not pictured in the image above – that squiggle below the tongue is your larynx and throat despite what you were thinking – but they are usually perceived right up at the top, next to your toes. There is a popular neurological notion (and while it sounds like crap, there’s actually science behind it) that the proximity of the genitals and the toes in the sensory cortex is why foot fetishes are so common. Take THAT anyone who says being kinky is unnatural.
A thing about pain response, and sometimes not being aware of it:
You can feel pain without a conscious pain response. I keep saying “nociceptive response” and “nociception” because pain, typically, is associated with consciousness. Can a coma patient feel pain? Not in the way you are probably fearful of. There needs to be a threshold level of brain activity, and specifically cortical activity which is a little different from the first thing, to do the whole process of signals reaching the thalamus and then going to the somatosensory body map cortex to localize and describe.
BUT you can have nociception, and more notably a nociceptive or pain response, without actually feeling pain. Sometimes this unconscious response occurs before the cortical pain response (sometimes just nano-seconds before, sometimes much longer) and sometimes it happens in the absence of a cortical or conscious pain response. So the coma patient might be able to experience this level of “pain,” although I’m certainly not a good person to talk about that much further. It’s highly contentious and there’s ethical stuff involved that I’m just not smart about. Of course a conscious person, walking around doing just fine, might often get this unconscious level of pain response without the “oh no I’m in pain” feeling. It results in autonomic responses, which could look like sweating, pallor, racing heart, dizziness, light-headedness, or a number of other similar things.
So in this way an individual’s nociception tolerance and their pain tolerance might be very different. They might reach their nociceptive threshold soon enough, and the neurons all fire to signal pain, but the response could remain autonomic and unconscious for quite a while before the pain threshold is reached, the part where the cortex gets the signal and goes owowowowow.
Another way to not be aware of pain is if you successfully gate it. Sensory gating is a neurological process where you block out unnecessary information in favor or more relevant information. Gating exists in the brain in other processes, like memory (e.g. when you know you won’t be tested on dates so you remember names and other concepts when you study, or when you go to a party and remember the names of the people you like but not the people who bored you to tears and you will hopefully never have to see again) and even to a degree in motor function (e.g. breathing can be an automatic thing that you don’t think about, but you can focus on your breathing and adjust the size and speed of each breath).
You can actually gate unwanted pain just by giving yourself other stimulation. For instance it’s hard to be aware of two places in pain at once. If they are both really bad, your brain will flip focus back and forth between them. But often it will just focus on one and you almost forget that something else hurts. More enjoyable ways to gate pain are focusing on your breathing, because it turns an autonomic process into something focused, or even just touching the painful spot. Ever instinctively grab your hand after you bump it on something? Or rub a twisted ankle? The physical touch isn’t healing anything, it’s just sending distractor signals to that same part of your sensory cortex (the upside-down body thing) and sort of overriding the pain. In time, your brain will figure out that rubbing your ankle isn’t important information, and it switches back to focusing on the pain. Works for a while though, doesn’t it?
Wasn’t that a fun detour?
Back to the Point
The point, of course, being autism and sensory processing disorder as they relate to surprising pain tolerance, perception, and awareness.
If you skipped the section above, and I certainly wouldn’t blame you if you did, here are four sentences of highlights which I hope you will consider:
Most pain is a part of tactile sensation, but the way we perceive pain is a separate channel than the way we perceive temperature or things like shape and size. When enough of a potentially painful stimulus is perceived, your body has an automatic reaction to it. Sometimes you feel the pain, know where it is, and what exactly the pain sensation is almost immediately, but sometimes it can take much longer to reach each of those steps. It’s also possible to get the pain signals, but never realize you are in pain, and instead get an unconscious automatic reaction like sweating or fainting.
So when I think about my high pain tolerance, and my honest inability to tell if I’m in emotional or physical pain, but not in terms of “crap I’m a horrible person” but “huh I wonder what my brain is doing here,” things kind of click into place.
I think I should make it clear here that the section above was based on research I’m familiar with. If stuff is erroneous up there it’s because I have misunderstood a piece of information I’ve read or a bit of lecture, and I’d appreciate corrections, but it is not wrong because of any wacko extrapolations I’ve made personally. From here on out though, I’m spinning my own web. If it sounds like I’m drawing conclusions about brains generally, I’m not. I’m trying to make sense of my world with what evidence I have, but I don’t have the research to back any of this up. I’m connecting dots, but that doesn’t mean I’m necessarily drawing the right picture.
This is what makes sense to me based on the knowledge I have about myself and my brain:
My body reacts to noxious stimuli (remember that’s just anything that could potentially be painful or in some way damage tissue) without me being aware of pain - a lot. It’s visible. I have bruises and scratches and marks that I can’t place. I don’t know where they came from or how they could be so scary looking. Sometimes I can figure out when a bruise must have logically come about (maybe stimming, maybe ballet, maybe even a specific thing like bumping a table) but I will have no memory of being in pain or reacting in any way. Still, my body physically copes with the injury and heals itself. Yay! Thanks body!
So if I have evidence of my body reacting without perceiving pain, it would seem reasonable to me that my nociceptors do their thing and that pain response is initiated, but either it remains completely unconscious and my responses are autonomic, or there is a delayed reaction to the cortex, the part that really processes the pain, and by that time the stimulus isn’t a threat anymore or something to cope with.
And that autonomic or unconscious response to pain? Sweating, flushing, feeling dizzy, feeling nauseous, racing heart, hyperventilating…
That sounds a lot like a panic attack, doesn’t it?
For people who deal with alexithymia, a good solid way to identify emotions is to notice our physical, observable responses. For me, all those potential autonomic reactions to pain are part or all of how I identify several of my emotions. Sadness, anxiety, anger, fear, and even good and happy excitement are defined (for me personally, not in general or for all people with alexithymia) by combinations of those reactions, which apparently can also be a pain response.
So, yeah. Things look clearer. Don’t they? Like this:
My methods to determine my emotional state are not able to distinguish between several common emotions and a basic level of pain response.
That is the big big point here. It partially explains my high pain tolerance. I simply don’t recognize that it is pain unless I stop to consider that it might be. The morning I described at the beginning of this post exemplifies this perfectly. I knew something was wrong. Definitely something wrong. But what? I run through my emotional possibilities and my physical reactions, and nothing quite lines up with expectations…
…and twenty minutes later I understand that I’m in some of the worst pain of my life.
The final thing I wonder about is how I can have such a hypersensitive tactile response and such a high pain tolerance. I know it’s true, but it’s just counterintuitive.
This is where the bit about sensory gating comes in.
Gating of all kinds can be a little out of whack in autistic people. That’s why we are so good at remembering the details of train schedules and tv references and all those fun things we love. It’s also why our sensory systems can get overloaded, when we see every reflection and hear every duck quacking within a two-mile radius and smell cat-smell in every corner of our carpets. We generally have a harder time than most people determining what information coming to our brains is important and what is unnecessary in the context.
So if healthy gating (that is to say, expected or typical gating) can cause temporary easing of pain just from touching a bruise or rubbing a cat scratch, what would slightly out of whack gating do for someone with hypersensitive touch? Someone who doesn’t have to rub their hand to get a boatload of tactile input for that hand?
My guess – and it’s just a guess – is that since my natural everyday state is being more aware of what I feel (physically feel and touch, not feel like emotions and feelings) than most people and since my gating abilities are already a little misplaced (with a tendency to tune out big picture messages in favor of catchy or feel-good-on-my-brain details), my nociception levels have to be much higher than expected before my brain can gate or tune out the bombardment of other tactile information it receives.
Somehow this whole mess of a post makes a lot of sense to me, and is bringing me a surprising about of self-awareness and comfort, and even self-forgiveness. So even if no one else understands a word of it…it’s still kinda cool.
I’m going to wrap this up here, sadly without a pithy punchline or anything, because wow this is a lot of information. I’m the one who wrote it and I’m still having trouble digesting it all. Please, please share in the comments how your experiences do or don’t line up with what I’ve talked about. I’d love to get a fuller understanding of how this plays out for people, and I understand that at the moment I’m really just working with my own personal experiences.
Further, if you notice any glaring errors in my explanation of neurological processes, please correct me! I don’t pretend to be an expert on this stuff; I’m a student of it. I would ask however that if you do correct me you do so kindly, as I certainly have not purposefully included any information I know to be false. I do love learning more about this subject though, and one of the best ways to learn is through the guidance of more knowledgeable people willing to point out my misconceptions. Seriously though, kindness would be very, very appreciated.