Sunday, September 17, 2017

My life with pain

Pain is a very interesting subject to write about. People are often confused by it and the terminology surrounding it, so let's open with some definitions.

Pain threshold is when someone starts to feel pain. Some people will fail to notice an injury that would immediately incapacitate someone else. As a chronic pain sufferer, people assume I have a high pain threshold, but that's not the case. If anything, it's low.

Pain tolerance is how much pain someone can tolerate. This is where I have an extraordinarily high stat; I can ignore a LOT of pain. Mainly because I've had to, since to the best of my recollection I last had a full day without pain... sometime in 1995. More than half my life ago. And even then, days like that were rare exceptions.

Typically, doctors asking about pain will want a rating from 0 to 10, with 0 being "no pain" and 10 being "unable to stop screaming to tell the doctor to stop fucking about and make with the drugs". This is, to put it bluntly, very subjective; but absent some way of transferring qualia, it's about the best we can do. Generally, 1-3 is considered "mild", 4-6 is "moderate", and higher than that is "severe". 4 is where pain is beginning to interfere significantly with activities of daily living (henceforward: ADLs) and 7 is where it becomes disabling.

I'm going to deal with 1-3 quickly, since at this point in my life I barely even remember what they're like.

1. Yeah, there's pain, but you don't really notice it unless you're concentrating on it.
2. Definitely pain, but you can get things done and ignore it almost completely.
3. Takes a lot of effort to ignore this pain, but you can tough it out and get your day done.

Then we get into the realms I'm most familiar with.

4. It's almost impossible to ignore this pain, and you start to think about what you can skip.
5. No chance to ignore this. Definitely going to need to skip some tasks.
6. Gritting your teeth, you ponder just how essential putting on clothes really is.

And we're into the heavy stuff now.

7. You're wondering if you can make it to the toilet.
8. You're wondering if you'll ever sleep again.
9. You're scared you might die from this pain.
10. You're scared you might not die from this pain.

In my experience, doctors will start to think pain relief is justified somewhere around level 3.

A typical day for me is somewhere between 3 and 5. It varies. If the weather's changing, I can easily spike up to a 7. Unmedicated migraines are a 10; medicated, back to baseline but that pill makes me incredibly sleepy, so I don't get a damned thing done anyway.

And this has been my day to day, for a long time. Things got worse about 7 years ago, when I started suffering chronic fatigue in addition to the pain; that turned out to be a dose of Lyme disease, when we eventually figured it out and got me a couple months of serious antibiotics; that was about 5 years ago, and things became less bad once I was recovered from the cure (heavy-duty antibiotics are hell on the gut; my microbiome is in terrible shape) but they never got back to where they were before Lyme; that stuff causes septic arthritis, and once that damage is done there is no fixing it. I'm in my mid 30s, with hips that look like a sexagenarian. The main reason (aside from cost) I'm not yet a candidate for hip replacement is the limited lifespan of the implants; my doctor wants to wait until they have a reasonable chance of lasting the rest of my life. So I go out, on hips that feel like there's gravel in the ball and socket joints, with my cane and my parking placard I hate to use, and I get my shit done as best I can.

Now, let's talk pain relief. Most of you have a whole lot of options. You have OTC stuff like aspirin, acetaminophen/paracetamol (same stuff, different names either side of the Atlantic), ibuprofen, and probably something a little sterner, which varies depending on where you are. Co-codamol for the Brits, Aleve for the Americans. Fun fact: I don't have any of those options. Aspirin and ibuprofen have reached the point at which my stomach violently overreacts to them; I don't know if they relieve pain, but I do know that they cause it. Like being stabbed in the stomach. Acetaminophen is off the table because a) it's never been worth shit for me and b) my last-resort stash of high test painkillers has it added in as poison, just in case I might decide I want to actually relieve my pain. It is literally added into the painkillers at the factory, to poison people. This is fucking stupid, but it's how they do things. It means I can't take it in OTC drugs, just in case I need a real painkiller and want my liver to continue working as well as it does (which isn't great, and boy do I love being high risk for hepatotoxic effects and required to have shit in my painkillers to kill my liver as punishment for wanting to not fucking hurt).

So yeah. The vast majority of what normal people can take a pill for, pain-wise, I basically get to grit my teeth and tough it out. Because like I said, I can easily spike to really nasty pain levels and I need to be able to treat that when it happens without poisoning myself.

I have a stash of the heavy stuff. This is something you're not supposed to do, and in fact the stuff is two years and counting past the use-by date, but I'm hoping the rat poison breaks down quicker than the opioids. That's my "take this pill or lie there screaming" last resort. The pain has to be literally debilitating for me to break into the stash. I'm told people use this stuff to get high; it doesn't do that to me, because all its potency is used in knocking the pain down from a 7 to a high 5. When I need it, it takes the pain from disabling to merely extremely problematic. This is the stuff that's causing an "opioid crisis". The true crisis is from the fucking stupid system of extracting profit from sick people which punishes anyone seeking medical care. If I hadn't had financial worries about seeing my doctor "too much", I would've had the Lyme disease properly treated two years sooner, and wouldn't have put 30 years' worth of extra wear on my hips over those two years.

But I digress. The heavy stuff is basically one step away from being completely illegal. This makes doctors very wary about prescribing it, which is why I have a stash. It used to be less tightly controlled if it contained the poison, but that got changed, and now the poison doesn't make any difference to how tightly it's controlled. It's just there out of habit.

I recently discovered a pain relief option that fits between "toughen up" and "might as well be heroin for how much trouble it'll get you in". Tramadol isn't as effective as hydrocodone, but it's two notches lower on the ladder of problems getting your medicine, and perhaps more importantly it comes without the free liver toxicity. Finally, the thick end of a decade since ibuprofen stopped being something I could take, I have something to deal with "it's been a long day" aches.

I don't take narcotic painkillers to get high, any more than you take ibuprofen to get high. I take them to be able to get shit done despite the pain. Every time someone spews some shit about an opioid crisis, I hear "you don't deserve to feel any better than your worst".

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