1:48pm August 2, 2015

Being in pain is a lot of work

withasmoothroundstone:

willow-wanderings:

I hate that no one really talks about how exhausting it is to be in pain.

Why is this never really discussed? I would think it’s obvious. Your body exerts a lot of energy to be in pain; muscles tense and cramp (seriously, flex your arm as hard as you can, now hold it like that for an entire day without ever relaxing it even once, you think that’s not going to make you tired?), nerves spend all day sending signals that make it feel like all your joints are full of static electricity, constantly measuring your breathing and movement to try not to make the pain worse takes effort and concentration (which is not a zero-calorie affair, your brain burns more calories to actively concentrate on things), those involuntary twitches whenever the pain spikes aren’t cost-free either and a lot of little movements add up, trying to hold a specific posture so that the pain isn’t quite as bad is a lot of work, and on and on and on.

Now imagine that being every single day of your life and try to tell me I can’t be tired because “all pain does is hurt.”

Being in pain really, really is completely exhausting.
One thing I tell people who don’t get it: I have trigeminal neuralgia. I know people who use wheelchairs because of trigeminal neuralgia. Trigeminal neuralgia is facial pain that does not affect your legs directly. But it can hurt so bad that some people can’t walk straight or balance and they fall over and need a cane or crutches or a walker or a wheelchair.
When my TN pain was at its worst, I felt like I was running laps all day long. Like by the end of the day I would be so exhausted that my body felt like I’d had the crap beat out of it and then I’d taken up really intensive jogging or something. And remember, this is facial pain that exists in just one nerve in your face. But it affects your whole body. And yes, it’s absolutely exhausting in a way that very little else can be. I know my adrenal insufficiency probably makes the exhaustion of pain even worse than usual, but even without AI pain is plenty exhausting.
And you’re right, nobody talks about it.
Just like they don’t talk about the really weird-ass dissociative effects you get when your pain climbs to around 8 on the pain scale. Such that you can be lying there unable to move and moaning and then asking “Why is my body acting like it’s in unbearable pain when I can’t feel anything at all anymore?”
And they don’t talk about the way really severe pain fluctuates, like you go in and out of that dissociative state, it doesn’t stay the same all the time, and it’s very confusing to be in the middle of.

I get headaches pretty frequently – I think not as bad as a lot of your pain experiences have been, and not as persistent, but it happens a few days each month. And sometimes one of the triggers can be going to bed later than I planned or otherwise not getting quite enough sleep, so I’m more likely to get headaches at times when I’m already sleepy. But other times I get headaches because, well, no obvious trigger it just happens when it happens. And then I sometimes feel increasingly tired as the headache worsens and the tension in my shoulders may also increase – even if I’m not experiencing anything I perceive as stressful, other than the headache itself.
And I also find that if I have to do a more mentally taxing thing, something that requires more mental concentration than usual, the headache gets worse and only eases up when I’m able to ease up on my concentration. This is one reason I may have to read books in English (my most fluent language) rather than practicing my Spanish reading skills (third language, somewhere behind my ASL) when I have a bad headache.
I’m still trying to figure out how my headaches and fatigue and so on all interact with and affect each other, and I too wish it was something that was discussed more because if I heard more from other people’s experiences that might help me start to see the patterns in my own pain/fatigue/interaction more clearly.

Headaches can be particularly tricky to tease out, because many, many headaches are migraines (including many headaches assumed to be tension or sinus headaches) and migraines can have a whole host of neurological symptoms associated with them, including exhaustion, cognitive impairment, and weakness. That come from the migraine itself, not from the pain.

But even a lot of doctors don’t realize that. I remember a doctor (not a migraine specialist, just a general practitioner, and one who was normally better informed than this) telling me that the nausea in a migraine is from the level of pain you’re in. But it’s not, or at least it’s not originally caused by the pain, although the pain can make it worse. You can have a migraine with no pain at all, or minimal pain, but lots of nausea and exhaustion and other migraine-related symptoms, for example.

Unfortunately, when most people think “migraine”, they just think “really bad headache”. When it’s more like a migraine is a whole syndrome, and just like the word “seizure”, it can refer to things that cause a number of varied neurological effects. It can even mimic a stroke (and strokes have been mistaken for migraines as well) – I’ve to my knowledge never had a stroke, but I did once have a bad migraine (exacerbated by travel and the stress of giving a presentation) where half of my body went rigid and the other half went limp, straight down the middle.

I know about some of the weirder kinds of migraines because both of my parents have a kind of migraine where you don’t have any headache at all. They get a visual aura (one example, that is very similar to one of my visual auras, is sort of like you’re looking at the world through wavering water), light and sound sensitivity, and enough cognitive problems and exhaustion that they have to pull over their cars and can’t drive until it’s over. It’s very uncomfortable and unpleasant, and takes time to fully recover from, but there’s no headache at all. It’s called an ‘ocular migraine’ (my parents when I was growing up just referred to it as ‘the visual part of a migraine’) because it is centered around vision changes rather than headache pain.

I get a lot more ocular migraines than I get headache-containing migraines, although I get headache-containing ones pretty frequently. One of my neurologists thinks I might also have a constant visual migraine aura, which would explain some of my visual disturbances that had always been attributed to autism before. I know another autistic person whose neurologist suspects the same thing of him. It’s called ‘status migraine aura’ so it’s apparently a thing.

If you have headaches that are accompanied by cognitive problems and exhaustion, it’s very possible that the cognitive problems and exhaustion are caused by the same thing that’s causing the headache, rather than the pain causing the cognitive problems and exhaustion. But as you said, it’s very hard to tease those things out. Even when you’re a doctor, let alone a layperson. It may be worth looking into all the different types of migraines and symptoms migraines can cause, because it’s quite a long list, and many migraines are misdiagnosed as other kinds of headache. I can see why, too – a lot of my migraines cause half of my nose to stuff up, for instance, and I could easily see mistaking that for a sinus headache, especially depending on where the headache pain was located.