as small as a world and as large as alone, bittersnurr: You know when they told me had...

2:00am September 3, 2014

You know when they told me had damage from reflux in my esophagus I was confused, because what reflux? I don’t have reflux.

I am contemplating on this painless mouthful of stomach acid and remembering the second degree burn on my arm that confused me because I didn’t feel it and am wondering if in reality I just can’t feel the pain anymore.

Pain is a weird thing.

Often I think I’m not feeling it, but it’s actually that I’m feeling it, my brain just categorizes it in a weird way.

See… for me… pain is a word. And it’s a word that most people understand. It’s a word, it’s a concept. This concept is something that most people seem to understand as one thing. One unified experience that everyone calls pain.

I grew up, among other things, with severe language impairments when it came to understanding words and the ideas that went behind them. Pain is a concept that I only ever grasped in part.

I had severe neuropathic pain my entire childhood. It was a constant companion. I remember it from the first experiences I have where I can feel my body at all. (I remember a lot from before I could feel my body, too.) I remember sometimes trying to reach my body and being rebuffed by this blast of pain so intense that I fled away again and floated in the distance instead. Floated somewhere where I could and couldn’t feel the pain, at the same time.

Anyway, as I grew up, I did not classify pain all as one thing.

All of the following things were totally different experiences that had nothing to do with each other as far as I understood it:

Sore throat
Multiple different kinds of headache (each one separate from the others)
Skinned knee
Sunburn
Neuropathic pain and/or central pain, whatever it was
Broken bone
Sprain
Impacted, distended bowels
Other constipation pain
Gastritis/duodenitis
Heartburn
That thing where every breath hurts every part of your lungs
Joint pain from hypermobility
Joint pain from other causes

And I could go on, and on, and on, because every single kind of pain was different from the last. And even within one kind of pain, it could be different. Like, there’s neuropathic pain the way it feels in my arms. And then there’s neuropathic pain the way it feels when it spreads into a halo around my heartburn, all across my back, and feels like it’s icy cold and burning at the same time. And those don’t feel the same either.

Anyway, it’s taken an ongoing, concerted effort to do the following:

Understand that what I am feeling is pain
Localize the pain to a part of my body
Understand what kind of pain it is
Understand where it’s coming from
Understand what to do about it

These are all sometimes impossible. I often feel like I have pain and I can’t even attach it to my body. It’s like… someone once asked me “what part of you hurts?” and I said “my keyboard” and it seemed as good an answer as any, I mean can’t my keyboard hurt? But apparently not. Apparently my keyboard is not a part of my body and therefore can’t possibly be what’s hurting. But it does hurt.

I have a friend who was in the hospital with an intestinal blockage. It wasn’t the actual reason she was there, it was the latest in a string of botched medical procedures that were doing their best to kill her. And she kept feeling suicidal. And she had no idea why. She had never been depressed that way in her life, she had never had psychiatric problems, and she didn’t even feel depressed at that moment, she just had this overwhelming urge to kill herself. And for the life of her, she couldn’t figure out why. She figured she’d better not tell anyone, though, in case they make her stay even worse by admitting her to psych.

Anyway, a nurse came in, told her she had an intestinal blockage, and administered a very heavy-duty painkiller. The suicidal urge went away instantly. And so did a sensation that my friend hadn’t even noticed. And that sensation was pain. She had been suicidal because her pain had been a 9 on the pain scale. When the meds wore off and the pain came back, she was able to feel the pain, to localize the pain, and to understand it was pain. But because she had not had the chance to experience it, and therefore categorize it as pain, she hadn’t ‘felt it’ even though she did feel it and was reacting to the fact that she felt it all the time.

So one thing to watch out for, if you’re looking for whether you’re really in severe pain that you can’t feel, is seemingly psychiatric symptoms that come out of the blue. For me, it’s often this intense boredom – at least, boredom is the only word I have for it. I don’t get bored, ever, normally. Not even a little. And then suddenly I get intensely bored. And that only ever means that I’m either very sick or in a lot of pain. The 'boredom’ seems to come from the fact that the illness or pain makes it so that I can’t do things I would normally do, or that I can’t get the joy out of them that I would normally feel, so my brain goes “I’m bored, I want something different.” But instead of following my brain’s lead and finding something to do, I often at that point have to scale back what I’m doing and just rest, and if I can manage to rest hard enough, the boredom can go away in an instant, in the best-case scenario.

But the thing is… all those kinds of pain I listed above, they’re different sensations from each other. The only reason they’re all referred to as pain, is that is a human category we impose on all these unrelated-seeming sensations. It’s probably a useful category to impose, but it’s still an imposed category. And if your brain is at all like mine, it doesn’t deal well with imposed categories like that. It simply doesn’t compute. How are the sensations of a sore throat, a toothache, and an impacted bowel the same thing? They don’t even close to feel similar.

And I’m someone who relies more on sensation to understand the world than I rely on category. The feeling of a sore throat is a sensation. Pain is a category. So for me, it’s sensation first, category second.

But to understand that you are in something called pain, you do need that category thing to be involved to some degree. And it’s possible that you are in pain, even a lot of pain, but you’re not categorizing it as pain and therefore not experiencing it as pain.

There’s also one more explanation. And I can tell you – nobody talks about this. Nobody. Except pain patients, sometimes. But it’s vitally important information for any pain patient to know.

Chronic, severe pain feels different from acute, severe pain.

Chronic, severe pain feels so different from acute, severe pain that they might as well not even be the same thing.

Chronic, severe pain can have a very strange, paradoxical element to it, where you do not feel the pain for long stretches of time. You behave as if you are in pain. If your pain is in your head, you might clutch your head the way you would if you felt the pain and had a headache. If your pain is in your teeth, you might hit your mouth repetitively with your hand. (I don’t know why so many people have that urge with toothaches, but we do.) You may make faces as if you are in pain. You may find yourself lying down and unable to function as if you are in pain.

But even as you do those things, you don’t feel the pain consciously at all.

And you start to wonder, “Why is my body acting like it’s in pain? I’m not in pain. This makes no sense.”

The first time I told this to a friend who had severe chronic pain, she said “What you just said? Means that I know you’re in pain for real. Because nobody who hasn’t experienced severe chronic pain would ever ask that question about their own pain.”

Apparently something about our bodies makes severe chronic pain come in cycles, where we feel it some of the time, but not others, even though it’s there the whole time. Even though we’re actually feeling it the whole time. It’s just that some of the time we can feel it consciously, and other parts of the time we only feel and react to it unconsciously. I have no explanation for that second part. But I have talked to a lot of people with severe chronic pain, and most of them have experienced this. It’s not so much a pain tolerance, as it is a feature of this kind of pain itself.

And it’s why there have been times when I have been unable to get up off the couch, unable to communicate, only able to give my friend this creepy thousand-yard stare, moaning out loud, clutching my face, and yet have no idea why I am doing those things, being faintly embarrassed by them, and wonder WTF is going on. Until my friend reminded me that my pain was climbing up to 9 on the pain scale, which is an area where pain gets just plain weird.

Also, I don’t know how you dealt with childhood severe pain, but I dealt with it by severe, severe dissociation. So severe that once my shrinks started looking at it, they diagnosed it as dissociative disorder NOS, kept telling me that I had severe dissociation, and attributed it to a “biological predisposition to dissociate” because they could find no other reason I was dissociating so badly. By dissociating I mean disconnecting from myself, disconnecting from my body, I don’t mean multiple personalities (although some wonderful bullies managed to convince me I had that, too :-/). I just mean an extremely severe disconnection from myself and everything around me, which is how I handled having pain that never got below six on the pain scale until I got onto Neurontin. (Quite by accident – I was given it for seizures, and the pain went away. I told them about the pain for the first time in my life, and they said “If Neurontin treats it, it must be a seizure.” This was before they knew about Neurontin’s effect on neuropathic pain. Later in life I told a doctor that story, omitting the name of the drug, and she said “I know which drug you mean” and wrote a script for Neurontin on the spot. Later I switched to Lyrica.)

I don’t know how good you are at dissociating. I’m amazing at dissociating. I’m so good at dissociating that it has taken me a long time to learn to ground myself in my body and in the real world. Because dissociation was my first line of defense against a pain that I had no name for and no treatment for, for about 20 years (excluding those few months on Neurontin age 15, and also Lithium oddly enough treated it a little when I was 17).

Anyway, that pain… it was like just a part of the world, you know? It was there’s the trees, there’s the sky, there’s the sunshine, there’s the grass, there’s the pain. I didn’t know the pain wasn’t supposed to be there. I didn’t know the pain originated in my body or was connected to my body. I felt it, and I felt it worse some days than others, but nobody ever cut me any slack even when I was definitely behaving in ways that in a nonautistic child would be seen instantly as pain-related behavior. Not that they knew I was autistic, just that being autistic sometimes changes how your body looks when you’re in pain, and therefore how people react to you. I found that for short-term acute pain people could often tell I was in pain, but for chronic severe pain nobody noticed a damn thing, least of all me.

Also, everything I’ve read about central pain (which feels similar enough to neuropathic pain that most people can’t tell the difference without some way of measuring what’s what) tells me that even neurotypical people experiencing central pain don’t describe it to their doctors as pain. They instead describe it to their doctors in terms of what they can’t do anymore, that they used to be able to do. They talk of debilitation, sometimes torture, often emotional problems, but never pain. Because the experience of neuropathic and central pain is so utterly different from what most people are used to as pain, that even otherwise-neurotypical people (I say “otherwise” because you can’t have this kind of pain and be neurotypical) can’t see it as pain.

If you’re interested in learning more about central pain (which I would not be surprised if it goes along with mito):

http://centralpainsyndromefoundation.com/information-for-medical-professionals/

I have all of those symptoms, to the letter, but we don’t know if it’s central pain or neuropathy, or some combination of both, because it can be really hard to tease out which is which. And I have had all these symptoms since I was born, as far as I know, which is what’s unusual. Usually these symptoms happen after something damages the nerves. But my mother has small fiber sensory neuropathy, so it’s possible I inherited it from her. Who knows.

So I don’t know how much of this is useful to you, but I thought I’d let you know, because there are things that even most pain specialists don’t seem to know about pain.

TL;DR: Pain is a category we impose on a wide variety of sensations that don’t actually have much to do with each other, in terms of how they feel. This can make it really hard for people who rely more on sensation than category, or people who have trouble with words and categories, to understand our own pain. And there’s lots of other reasons we can “feel pain without feeling it”, too. Which I go into in so much depth that this post is waaaaaaay too long.