"There are times when it’s very hard to accept it."
April 5, 2018 1:43 PM Subscribe

Is chronic pain something more people should accept? Amid the opioid crisis, the concept of “pain acceptance” is gaining credibility.

Then, Herman says, she “learned to change the messages” in her mind. It happened gradually as she moved through the stages of grief over the loss of her former identity and the intense physical pain that had become part of her daily life. She went from denial to anger to depression until finally she arrived at acceptance, a process that took about four years. Attending support groups also helped her come to terms with the fact that her pain wasn’t going away. “For me, acceptance was realizing that there had been a trauma that had fundamentally changed my body and I had to change with it,” she said. “With the body that you have now, you need to create a new life for yourself. You have to let go of the past and live as you are now.”

...

Pain acceptance is not without its detractors. Vox recently devoted an episode of its podcast “The Impact” to pain acceptance. The episode called it “a possible future for pain treatment.” In response, the website The Mighty, which describes itself as “a digital health community” with more than a million users, published several posts critical of the idea. “The podcast prompted a backlash from people with chronic pain, who argued that saying a level of chronic pain is ‘acceptable’ essentially abandons chronic pain patients,” an editor for the website wrote in one post. “Rather than tell them they need to accept their pain, they need more pain-relief options, doctors who are willing to fight for them, and less stigma against using opioids responsibly.”

...

Misconceptions over what pain acceptance means and the kind of negative reactions that people sometimes have when they hear about it may also prompt pushback. After all, learning to live with pain inevitably clashes with the the hope of finding a cure.

The opioid crisis in general is a going concern for the current administration, whose solutions include attempting to dramatically cut opioid prescriptions.

For another podcast-focused look at opioids, Gimlet Media's Science Vs. recently ran a two-part series on the history of opioid addiction in America and the viability of current treatment options, which among other things includes the suggestion that opioids aren't as effective for chronic pain management as doctors may have once thought.

posted by Kybard (212 comments total) 40 users marked this as a favorite

A lot of people possibly by a fair majority of the people with chronic pain are women. So “acceptance” of chronic pain is a way of absolving doctors from having to deal with patients that 40 years ago (and sometimes today) they could just dismiss as hysterical.

This is a terrible idea.
posted by Homo neanderthalensis at 1:49 PM on April 5, 2018 [214 favorites]

I'll believe "Chronic Pain Acceptance" is a credible concept when "Erectile Dysfunction Acceptance" becomes a credible concept.
posted by Mr.Encyclopedia at 1:53 PM on April 5, 2018 [265 favorites]

Order of priorities doctors should be worrying about:

1. Keeping someone alive
2. Controlling pain
.
.
.
47. The possibility of addiction to the prescribed medication
posted by Jimbob at 1:56 PM on April 5, 2018 [100 favorites]

jesus christ woe befuckingtide the person who tells me i should just accept this shit.
posted by poffin boffin at 2:01 PM on April 5, 2018 [130 favorites]

afaik, addiction to opioids causes very few problems so long as the user has consistent, safe access to the drugs. taking a tool away from someone who is experiencing agony is torture by another name. just because a few ne'er-do-wells might get away with addicting themselves! let them! the punishment of taking opioids for fun is having to take opioids for maintenance. monstrous.
posted by wires at 2:02 PM on April 5, 2018 [57 favorites]

when all else fails with ATN your choices end up being literally opiates or death. fuck this article and fuck every one of these people. fuck everyone who says OH HAVE YOU TRIED YOGA or OH YOU NEED TO DRINK MORE WATER or OH YOU NEED TO FORGIVE YOUR BODY AND LOVE IT

i will meet my body in the fucking pit
posted by poffin boffin at 2:06 PM on April 5, 2018 [109 favorites]

It feels more like it should be a part of a wider discussion of living with chronic health problems, including chronic mental health problems, rather than pushing it all off on people with pain issues. It's implicated with my anxiety problems, too: The less I go out, the more anxious it makes me to go out, so avoidance of discomfort isn't actually good for me. But in a lot of ways, having the stronger medication is what lets me take bigger chances. Talking about it like the goal is "take fewer medications" rather than the goal being "stay as functional as possible as long as possible" is bizarre.
posted by Sequence at 2:08 PM on April 5, 2018 [60 favorites]

yeah so as someone who suffers from chronic back pain that has really not found any relief through solutions ranging from medical to surgical to holistic, I found this article both a somewhat interesting look into how chronic pain warps you psychologically and a treacherous road down dismissal and downplay of life-damaging conditions in favor of moralistic ideals like abstinence. (without even getting into gendered ways this stuff hurts people even worse than it might in my case)
posted by Kybard at 2:11 PM on April 5, 2018 [20 favorites]

There's definitely a process of accepting that the body you have now will never be the body you had before onset of whatever's causing the chronic pain, and getting through that is a good thing. But that wasn't, for me, an acceptance of pain, it was an alteration of my self-image from someone who basically could become Batman with enough money and time to someone who will never play high-impact sports or jog again. I have accepted that pain is something I have to live with and manage, and I'll never be able to totally free up that attention and energy again.

Does that mean I don't try to minimize or remove the pain? Fuck no. As my wife often says, if you're going to be incoherent from pain or incoherent from medical marijuana, you may as well be incoherent and happy.
posted by restless_nomad at 2:13 PM on April 5, 2018 [97 favorites]

I'll accept my pain when I'm dead.
posted by Splunge at 2:13 PM on April 5, 2018 [6 favorites]

Oh, and, severely depressed people should just get over themselves. Right?
posted by Splunge at 2:15 PM on April 5, 2018 [27 favorites]

The language this concept makes me want to use would probably get me banned from Mefi, so.
posted by praemunire at 2:16 PM on April 5, 2018 [30 favorites]

...or we could, you know, aggressively fund basic research to more non-opioid pain killers...preferably by non-profit or government actors, so that the public isn't gouged by them (you don't want to become chemically dependent? Woah, okay, in that case, you'll need to pony upn-times as much for that!). I mean, I'm not in a medical field, but it seems like the major classes of each medication seem to be just barely changed for pain management in several decades; Acetaminophen, Ibuprofen and Opiates seem to be the only games in town. Everything is just a variation on those classes (please, professionals! Correct me if I'm wrong).

An easier track might be ending prohibition on cannabis, which seems to be having some pretty legit results in reducing opioid addiction and the resulting deaths that stem from it *shrugs* I mean, that won't have any change on incidences of addiction, but it might change instances of opioid dependance. Addiction and dependence are two different things, and need to be treated as such. They're starting to figure it out for alcohol, and this kind of research might lead to similar treatments for addiction.

We don't know nearly enough about the disease of addiction (dependance is actually pretty well figured out for the most part), but there are early signs that addictive behavior can be medicated against. We very well could enter a time when you are given Woahbuddy amounts of opioids for pain medication, but they're packed with No-fun-ums that short circuit the addictive behaviors that some parts of the population attach to them.
posted by furnace.heart at 2:18 PM on April 5, 2018 [10 favorites]

1. Keeping someone alive
2. Controlling pain
47. The possibility of addiction to the prescribed medication

1 and 47 can be related. This obviously varies by what kind of opioid and other context, but addiction is not health neutral and can kill you in lots of ways, slow and fast. As we are seeing right now.
posted by feckless at 2:19 PM on April 5, 2018 [9 favorites]

We don't know nearly enough about the disease of addiction (dependance is actually pretty well figured out for the most part)

many people do not seem to understand the distinction
posted by thelonius at 2:20 PM on April 5, 2018 [8 favorites]

"We've tried nothing and we're all out of ideas!"
posted by Ghostride The Whip at 2:23 PM on April 5, 2018 [44 favorites]

I mean, I think any argument that assumes that every single opioid pill that is manufactured is prescribed by a responsible doctor to a person with a legitimate medical need and is then taken by that person is naive to the point of being disingenuous.
The problem with addiction isn't (only) that the people who are being prescribed are becoming dependent, and proposed solutions need to take that into account.
posted by Krawczak at 2:24 PM on April 5, 2018 [1 favorite]

Fuck, no.

Just no.
posted by MartinWisse at 2:25 PM on April 5, 2018 [4 favorites]

pain acceptance might serve as an effective alternative to opioids

Christ no. It can be an effective accompaniment to opioids, along with other applicable forms of treatment.

My wife is slowly recovering from an extremely large disc herniation which, after months of it being quite bad, suddenly became extreme: wracked with sciatica, crying and screaming multiple times a day from its severity. She said it felt like rusty blades and animals were gnawing from inside her leg. No physical position gave any relief. She didn't sleep more than an hour a night for a month and a half. When she slept, I heard her whimpering in her sleep. Both of us felt half out of our minds with sleep deprivation and despair. She kept saying she wished she was dead.

On her physiotherapist's recommendation, she decided to try practicing some mindfulness to alter the way she was thinking about, and emotionally reacting to, the pain. And that did something. It actually helped a lot, quite quickly.

But would it have helped in the total absence of opioids, which we had to grovel at the doctor's feet to get after being treated like junkies at multiple ERs? Maybe a bit, but nowhere near as much.

Pain acceptance is not an alternative to opioids. It's something that can be very helpful to some people (e.g., my wife), in some circumstances (e.g., a condition that was horrendous but was expected to eventually improve), and not to the exclusion of other pain management strategies.
posted by Beardman at 2:26 PM on April 5, 2018 [34 favorites]

Jesusfuckall, this idea has the smell of the insurance industry all over it.
posted by Thorzdad at 2:27 PM on April 5, 2018 [46 favorites]

I have chronic pain everyday from damaged sciatic nerves in both legs. It breaks down into two categories: 1) pain I can ignore, and 2) pain I can't. Over time I have become capable of ignoring more and more. It's there. It isn't going away, but fuck it. And if it passes the threshold of tolerance, then a few hefty glasses of Chardonnay will usually do the trick. Still hurts, but somehow it doesn't seem quite so pressing or urgent...
posted by jim in austin at 2:29 PM on April 5, 2018 [8 favorites]

But seriously folks, this is once again shoving off a societal problem on those the worst equipped to handle it, to provide a placebo solution where hey, if only we make it even more incredibly hard to get proper pain medication, we can solve our opoid addiction crisis without looking at the circumstances under which people get addicted and why as well as who profits from it.

It's not just your friendly local neighbourhood drug dealer after all, it's also the companies who manage these prescription opoids that somehow, nobody knows how, get sold on the streets.
posted by MartinWisse at 2:29 PM on April 5, 2018 [11 favorites]

Question #1: If you could make a problem go away with acceptable side effects would you?

If the answer to question #1 is yes, then FUCKING FIND A WAY TO DO THAT. (that is to say, as public policy)
posted by Tell Me No Lies at 2:30 PM on April 5, 2018 [3 favorites]

I think the framing of the main story does the topic a terrible disservice, as this treatment is not really about being a replacement for opiates. There are some uncurable diseases which cause pain, and there needs to be a therapeutic regime for living with that pain. Some people choose opiates and some people might not be able to or might not want to, and for the latter class, we need to understand how they can have a meaningful life even with the pain.

For example, a woman in the article made the choice to stop using opiates (which made her feel terrible) thanks to this therapy. You wouldn't know it from the framing in the lede.
posted by TypographicalError at 2:31 PM on April 5, 2018 [19 favorites]

Just prescribe What Katy Did to every patient and they'll become docile and thankful in no time.
posted by threetwentytwo at 2:31 PM on April 5, 2018 [6 favorites]

Misconceptions over what pain acceptance means and the kind of negative reactions that people sometimes have when they hear about it may also prompt pushback.

I'm... not entirely convinced that people who are pushing back here do have 'misconceptions.' AFAICT they likely do have the gist of it, which is 'you're going to feel pain forever, and it's not going to go away or get better, so, well, get used to that idea'
unless i'm missing something critical, that's literally the strategy, it's just that you also may get a 'support group'
posted by halation at 2:31 PM on April 5, 2018 [6 favorites]

I think any argument that assumes that every single opioid pill that is manufactured is prescribed by a responsible doctor to a person with a legitimate medical need and is then taken by that person is naive to the point of being disingenuous.

I think it’s also naive to assume people are dying under bridges with a needle in their arm because a doctor gave them some codeine for back pain some time in the past. Just because something can be addictive and can be abused is no reason to suddenly become scared of even going near it in a clinical context.
posted by Jimbob at 2:31 PM on April 5, 2018 [29 favorites]

As my wife often says, if you're going to be incoherent from pain or incoherent from medical marijuana, you may as well be incoherent and happy.

Yes. Exactly.

When we asked one doctor at an ER to prescribe something stronger than bloody Tylenol or Ibuprofen for my wife's pain, he feigned horror and said, "But that would be narcotics!" Then he lectured us on the opioid epidemic. Meanwhile she's writhing on the hospital bed. Even accepting, for the sake of argument, the flawed premise that prescribing some hydromorphone would be contributing to the opioid epidemic, I wanted to know what was worse than this.

It's not to underestimate how bad addiction can be. But I feel like doctors who tut-tut about opioids are asking us to compare a healthy person without pain to the prospect of an addicted person; they choose not to see that the relevant comparison with the latter is with someone already suffering brutally.
posted by Beardman at 2:32 PM on April 5, 2018 [36 favorites]

I have had SLE and Fibromyalga since my mid 30's. Usually I am ok. Today is NOT that day. Nobody who is not living in this body gets to have a legit opinion on what I can and cannot do to this body to get through this day.
posted by Nancy_LockIsLit_Palmer at 2:35 PM on April 5, 2018 [53 favorites]

The world is full of people who have no problem accepting pain -- as long as it's happening to someone else.

And that this idea is gaining traction right now shows how thoroughly they have usurped political power.
posted by jamjam at 2:36 PM on April 5, 2018 [31 favorites]

we will never get anywhere so long as the vast majority of people with absolutely no skin in the game continue to conflate "i need to take this medication every day in order to function in some semblance of normalcy" with "drug addiction".

I chock it up to subconcious-eugenic-thoughts sprinkled with a hefty dose of cultural-prosperity-doctorine. Good people don't get sick, duh.

Also, opiates are fun if you don't have the disease of addiction. There are all sorts of diseases like this that don't let you get to have the fun part of a thing. I mean, Bill Clinton loved fried chicken and other southern soul food, but the man's got heart disease and now he has to basically eat vegan or he'll die.

Bill Clinton doesn't get fatty foods and Heroin addicts don't get heroin, lest they die eventually from the disease.
posted by furnace.heart at 2:39 PM on April 5, 2018 [3 favorites]

I think it’s also naive to assume people are dying under bridges with a needle in their arm because a doctor gave them some codeine for back pain some time in the past

No, but it's very likely that a huge portion of the opioids they took during their addiction were manufactured and put into circulation by the pharmaceutical/medical industry. This isn't a clean binary between "manage legitimate pain" vs. "let patients suffer". It's a huge quagmire of supply-side economics, demand-side economics, class, regulation, blah blah. I don't pretend to have an answer, but this article seems purpose-built to get people extremely riled up in defense of one or the other side of a binary that basically doesn't exist in those terms.
posted by Krawczak at 2:39 PM on April 5, 2018 [4 favorites]

we will never get anywhere so long as the vast majority of people with absolutely no skin in the game continue to conflate "i need to take this medication every day in order to function in some semblance of normalcy" with "drug addiction".

look out, diabetics, you're hooked on insulin! uh oh, people with thyroid problems, that synthroid is a gateway drug!

Doctors, families of long term narcotic users, and people who themselves have been on narcotics for a long time know that insulin and synthroid are not accurate comparisons. They're convenient to explain the necessity, but they're not the same. If long term narcotic use had no problems, there wouldn't be any controversy.

And frankly, the parallels with addiction are EXACTLY why we should not be surprised that an article like this generates such discussion and defensiveness on MeFi. Like addicts, long term narcotics users are sick to death of moralizing individuals condemning their decisions. Like addicts, long term narcotics users accurately complain that these moralizers have no right to proclaim that they know what the solution is. Like addicts, long term narcotics users can often accurately say that they have tried every alternative and have found that none of them work.

And like addicts, long term drugs users continue to be the subject of posturing and controlling behavior from their loved ones. Just like addicts, one major reason is that long term narcotic use is not just a personal issue. Those of us who love long term narcotic users and need them feel the effects of the use of these drugs.

I love and appreciate those with chronic pain and respect their right to treat their pain as best they see fit. I do not know what works; they do. But I cannot sit by and let chronic pain sufferers lie to me and tell me that they need narcotics in the same way that a diabetic needs insulin. This is not true.

Nor do I think that it is fair to say that the only people with skin in the game are chronic pain sufferers. Do I understand what it's like to suffer from chronic pain? No. Have I been affected? Sigh. Yeah. I have.

My apologies if I have been too passionate about this topic. Much love and respect to everyone in this thread, including poffin whose opinion I (probably unfairly) selected to speak about.
posted by billjings at 2:46 PM on April 5, 2018 [9 favorites]

And if it passes the threshold of tolerance, then a few hefty glasses of Chardonnay will usually do the trick. Still hurts, but somehow it doesn't seem quite so pressing or urgent.

not to be like, grim as fuck, but my friend who also chose this method of pain management died of liver failure before she was 40.
posted by poffin boffin at 2:46 PM on April 5, 2018 [50 favorites]

But I cannot sit by and let chronic pain sufferers lie to me and tell me that they need narcotics in the same way that a diabetic needs insulin. This is not true.

Suicide is also often fatal.
posted by restless_nomad at 2:47 PM on April 5, 2018 [84 favorites]

Do I understand what it's like to suffer from chronic pain? No.

don't worry, that was obvious.
posted by poffin boffin at 2:49 PM on April 5, 2018 [119 favorites]

Heroin addicts don't get heroin, lest they die eventually from the disease

To be honest, just giving heroin addicts a roof, some heroin and clean works isn't always the worst idea in the world. It would certainly be better if there were no addicts in the world, or if every addict could abstain, but, in reality, harm reduction is the only game in town. Of course, the same applies to providing drugs for pain relief. It would be better if people weren't in all kinds of pain, but given that they are, the question is how best to alleviate that pain with the minimum of side-effects. Sadly our political priorities continue to set with reference to moralistic fantasy worlds rather than to reality.
posted by howfar at 2:53 PM on April 5, 2018 [38 favorites]

I love and appreciate those with chronic pain and respect their right to treat their pain as best they see fit. I do not know what works; they do. But I cannot sit by and let chronic pain sufferers lie to me and tell me that they need narcotics in the same way that a diabetic needs insulin. This is not true.

You get that you're contradicting yourself repeatedly within these few sentences, right? You can't claim to respect people with chronic pain and believe that they know best what will help their pain, then call them liars and malingerers. Kinda blows your first claim about respect clear out of the water.
posted by palomar at 2:58 PM on April 5, 2018 [63 favorites]

You get that you're contradicting yourself repeatedly within these few sentences, right? You can't claim to respect people with chronic pain and believe that they know best what will help their pain, then call them liars and malingerers. Kinda blows your first claim about respect clear out of the water.

I did not call them malingerers. I called them liars.

I shouldn't have called them liars. I do think that what they say isn't true, but that doesn't make them liars.
posted by billjings at 3:00 PM on April 5, 2018

But I cannot sit by and let chronic pain sufferers lie to me and tell me that they need narcotics in the same way that a diabetic needs insulin. This is not true.

Many of them need narcotics as the only available way of managing their condition. Or are you saying that anyone with a medical condition that isn't literally going to kill them today should just suck it up and stop lying about the medicines they need?
posted by howfar at 3:05 PM on April 5, 2018 [17 favorites]

your disbelief has literally no factual basis. you are literally incapable of knowing what anyone with chronic pain is feeling. all you know is that you think you know better than they do. that you think you're better than they are.

stop.
posted by poffin boffin at 3:05 PM on April 5, 2018 [63 favorites]

“Pain acceptance”sounds like the healthcare equivalent of the dominant ideology of “poverty acceptance” and “inequality acceptance”; i.e., life sucks for you, but that's just the natural order of things, and don't even think about changing it because that's a crime.
posted by acb at 3:06 PM on April 5, 2018 [37 favorites]

Fun Story:
I have fibromyalgia and have had since 2006. So I'm BFF/Frenemies with chronic pain. Typically it's my shoulders and hips that ache near constantly, but it's not a huge deal, just like how you feel when you work out too hard the day before. Livable until I have a flare up.
Luckily, I've had it managed really well for a number of years, but last year when I was moving across the state for a new job, shit got really bad. My right shoulder, who'd been injured in the past, starting doing this tingly burning thing. Which I ignored, because the last time I mentioned it to my doctor she said it was a normal fibro thing.
Then it got to hurting when I tried lifting things, but I assumed I'd just overdone it painting the ceiling and it'd be fine in a day or two.
Then doing any sort of pulling motion, like pulling up the covers or moving a chair caused agony, and I started to think, maybe this wasn't fibro anymore.
I made an appointment, but the earliest I could get in to my new doctor in my new town was 2 months away. I tried to manage the now increasing pain with my standard fibro drugs but nothing was working. I tried hot/cold compresses, massages, sleeping flat, changing my desk so I could mouse without agony, and even hit up some acupuncture.
By the time I made it to the doctor, I couldn't grip most things with my right hand and I could barely lift my right arm more than 5 inches above my waist.
When the doctor asked how long it'd be going on, I honestly couldn't give her an answer. Like I could intellectually understand that there was a point in time where my shoulder didn't feel like it was on fire, but there was no real date I could associate with that knowledge. So I said, "Dunno, maybe like 3 months ago?"

The doctor was blown away that anyone would put up with pain at this level for any length of time and promptly ordered PT for me. It took 6 months of physical therapy to get my shoulder back to something that is functional. It's still a little twingy and weird from time to time, but I do some exercises and it goes back to the baseline of "not that bad."

The doctor did joke that usually when a new patient mentions a pain has been happening for a significant length of time that it usually means they are a med-seeker, but since I didn't ask for painkillers, I wasn't one of those. When I told her that if I took the big boy painkillers every time I felt like my muscles were being pried off my bones, I'd never be able to function, so I just manage that level of pain as baseline, she was equally shocked. Because for some reason no one ever told her what daily fibro pain felt like.

So yeah, fuck the medical profession and pharmaceuticals all the way to hell and back. There's got to be better ways to treat people who hurt than throw medicine at them until it kills them or tell them to ignore it.
posted by teleri025 at 3:06 PM on April 5, 2018 [48 favorites]

Those of us who love long term narcotic users and need them feel the effects of the use of these drugs.

can you feel the chronic pain vicariously just as well as you "feel" the opiate use effects? because if you're not wracked with sympathy pains every moment your alleged loved one isn't using narcotics, you're telling yourself a story.

of course it's hard to live with an addict, or even a regular medication user. a person who takes enough painkillers to get up out of bed and go around bothering other people is able to be much more of a pain in the ass than one who doesn't. a person who takes enough painkillers for their voice to work for complaining is a lot more annoying than one who can't speak. the convenience or inconvenience to you is not an acceptable reason to argue about whether other people need pain relief or not.

of course plenty of people want to stop their housemates from taking narcotics, same as plenty of long-suffering caregivers want to just xanax their tyrannical charges into dozy compliance. there is no difference in moral acceptability between pushing drugs into someone to make them easier to manage and urging someone off drugs for the same reason.

if you love someone, you can tell them you think their meds aren't good for them. even if you're wrong. but if you just think their meds aren't good for you, you have to look at changing your own life and health and living conditions. not theirs.
posted by queenofbithynia at 3:10 PM on April 5, 2018 [41 favorites]

Those of us who love long term narcotic users and need them

You know that it’s impossible to actually need a person, right? People aren’t like insulin. You should just practice acceptance and leave them alone.
posted by the agents of KAOS at 3:14 PM on April 5, 2018 [59 favorites]

Insulin overdoses are (happily) rare. People who need insulin temporarily and then don't any more ... just stop using it.

64,000 people died in the US in 2016 from opioid overdoses. People who start using opioids for a long period of time -- prescribed or not -- can have a very hard time stopping if they want to.

There are many people who need insulin to live, there are many people who need opioids to deal with their pain. But these are not the same thing. The risks are not the same and the current situation is not the same.

I understand that people with chronic pain are sick of dealing with the bullshit thrown their way in various ways. I would be in their shoes. But I'm seeing a lot of denial here about what's actually going on in this country, which is that opioids, opioid addiction, and opioid overdoses are killing lots and lots of people. I don't know if there's a way to deal with that that doesn't make life harder for the folks who are dealing with chronic pain. But we do have to deal with it.
posted by feckless at 3:16 PM on April 5, 2018 [10 favorites]

There’s evidence now that opioids aren’t even especially good pain relievers
posted by chrchr at 3:18 PM on April 5, 2018 [1 favorite]

The lazy framing of this article invites fightiness. The state of public discourse in many countries over the responsible and necessary use of opioids hasn't got beyond Reefer Madness levels of panic. I mean, I understand that there's some talk of re-licensing Vioxx (the wonder painkiller with an unfortunate side effect of killing a statistically significant number of its users) in the US because people dying tests better with the voting public than allowing more people to use opioids.
posted by scruss at 3:19 PM on April 5, 2018 [10 favorites]

I don't know if there's a way to deal with that that doesn't make life harder for the folks who are dealing with chronic pain.

Well, not lacing the painkillers with an incredibly toxic drug might be a start. But then we'd have to acknowledge that we have a moral problem with people taking painkillers.
posted by restless_nomad at 3:20 PM on April 5, 2018 [62 favorites]

There’s evidence now that opioids aren’t even especially good pain relievers

I read that the problem with that study is that they focused on arthritis sufferers who are usually given NSAIDS, and that the framing of the article went sideways as a news story. I'll try to find the source. This is the best I could find quickly.
posted by A Terrible Llama at 3:24 PM on April 5, 2018 [9 favorites]

for those who don't like observing the effects of opiates but don't seem to mind observing the similar effects of pain: chronic pain fucks with the personality in a way that is accelerated and worsened by accepting/ignoring it. when you allow the pain to drop below your surface consciousness for a long time -- which will happen now and then automatically with even the worst pain if it's constant enough and prolonged enough -- it doesn't die or disappear. you don't stop feeling it, you just feel it in different places. you don't sleep or you feel sick or you start getting awful headaches (if they weren't your original problem) or you snap at people for no reason or you feel angry or burst into tears all the time until that, too, becomes "accepted" and disappears from your uppermost consciousness. what's wrong with you? nothing. how do you feel? awful. why? I don't know.

this is what people with no access to good pain meds have always done, because they have to. it is to some extent an automatic process and the body will do its best, if the pain isn't from something progressive that's killing you. it's not a new idea and it fucking sucks. it is the worst. it keeps you from falling down and crying, which means it's good for the people who need your labor. for nobody else, really. it is absolutely fine for anybody to give it a shot who wants to experiment on their own carcasses. it is an awful thing to recommend to others as a great idea.
posted by queenofbithynia at 3:26 PM on April 5, 2018 [68 favorites]

i mean rEALLY it's ironic to be called a lying junkie when i don't even take opiates

like don't smugly frame my outrage at your ignorance as "defensiveness about my addiction" or whatever just because you're having some kind of chronic empathy malfunction
posted by poffin boffin at 3:28 PM on April 5, 2018 [50 favorites]

But I cannot sit by and let chronic pain sufferers lie to me and tell me that they need narcotics in the same way that a diabetic needs insulin.

I mean - here’s the fucking thing.

I have chronic back pain which is excruciating if I even stand upright for an hour without carrying anything, or sit in anything but the precisely perfect chair. I would love to practice “pain acceptance” where my pain acceptance is “live the rest of my life in a jacuzzi and have food served to me there.” But I’m not wealthy enough to afford that life and I need to work for a living to feed my family, so that means I need some means of managing pain, or I cannot manage to live or my family to live. If I work a typical job for eight hours of pain a day I can literally barely stand at the end of it, which means I can’t cook, which means nobody eats.

But yeah I guess I’m a liar or whatever.
posted by corb at 3:34 PM on April 5, 2018 [62 favorites]

Many of them need narcotics as the only available way of managing their condition. Or are you saying that anyone with a medical condition that isn't literally going to kill them today should just suck it up and stop lying about the medicines they need?

And in that first sense, the comparison is accurate. But a diabetic has a disease that has a well understood physiological mechanism, that has a well understood prognosis under treatment. Neither of these is the case for chronic pain.

I emphatically believe that chronic pain sufferers are telling the truth about their pain and the medicines they need. I also believe that the comparison with insulin is not a true one.
posted by billjings at 3:42 PM on April 5, 2018 [1 favorite]

This is such a non-issue. The CDC recently announced that the opioid death numbers spiked essentially because they started counting things differently.

This is like "Men don't cry" except "Just don't pay attention to the parts of your body that evolved over millennia to warn you that something is wrong."
posted by fifteen schnitzengruben is my limit at 3:44 PM on April 5, 2018 [16 favorites]

But a diabetic has a disease that has a well understood physiological mechanism, that has a well understood prognosis under treatment. Neither of these is the case for chronic pain.

You are using "chronic pain" in a way I don't understand. I have psoriatic arthritis - it's a well-understood autoimmune disease that can be managed with a variety of (mostly very expensive and/or heavy-side-effect) medicines. That management doesn't fix the pain, it just slows or stops - not reverses - the physical degradation of the joints. Any existing damage, or damage not totally controlled by my $18,000 a dose medication, causes pain that I have to live with.
posted by restless_nomad at 3:45 PM on April 5, 2018 [29 favorites]

poffin boffin, you're probably not talking to me, and I would not call you a liar. but I do think your original statement was wrong and dangerous.

we will never get anywhere so long as the vast majority of people with absolutely no skin in the game continue to conflate "i need to take this medication every day in order to function in some semblance of normalcy" with "drug addiction".

look out, diabetics, you're hooked on insulin! uh oh, people with thyroid problems, that synthroid is a gateway drug!

the problem is that in this particular case (use of opioids to treat chronic pain) those two things can and very often do overlap. people sometimes do "genuinely need to take them every day in order to function in some semblance of normalcy." And sometimes there are people who are addicts. And sometimes those people are the same people.

and this is not a static issue. more people died in 2017 from it than in 2016, and more people will die from it in 2018 than in 2017.

I am in no way making an argument for not treating folks with chronic pain, or for not treating them with opioids if that is in fact the best approach for them. And it may be for many people, we suck at dealing with pain (medically and culturally).

But to pretend that opioids are somehow equivalent to insulin or synthroids in terms of medical risk and impact on the rest of society is to ignore a health problem that is killing people.
posted by feckless at 3:46 PM on April 5, 2018 [5 favorites]

Here are additional details on the pain study; I can't speak for anything about that site's veracity--I wouldn't usually link to it, or Reason either, but can't find something mainstream *or* academic. It's a crowded field, search-wise.

Anecdotally, I think the idea that Advil is as good as an opiate is freaking ludicrous.

My apologies for not doing a little more critical research before sharing; I have the flu(?) or somesuch.
posted by A Terrible Llama at 3:49 PM on April 5, 2018 [1 favorite]

"Doctor, will this hurt?"

"No. I won't feel a thing."
posted by Mental Wimp at 3:49 PM on April 5, 2018 [14 favorites]

When we asked one doctor at an ER to prescribe something stronger than bloody Tylenol or Ibuprofen for my wife's pain, he feigned horror and said, "But that would be narcotics!" Then he lectured us on the opioid epidemic. Meanwhile she's writhing on the hospital bed.

It really is annoying that asking for painkillers, even if you are in obvious, externally verifiable pain, is apparently automatically worthy of disdain these days. I got it from a oral surgeon, of all things. I had a root canal that had gone bad, the entire side of my face was swollen up, and I was in the usual agony of such things. I had to take 10 days of antibiotics before they could go in and clean out the root canal, so after he said he was giving me a prescription for antibiotics, I asked if he could do one for painkillers too, and he gave me such a look. He did eventually give me a prescription, but only for 10 pills. We had had discussed pain levels at the start of the appointment, for god's sake, I said it had been about 10 the day and night before but had gone down a little as my face suddenly puffed up and he said 'oh, yeah, that's typical, the pus pressure gets worse and worse until it finds a channel to leak out into the rest of your tissues.' So it wasn't like he had any doubt I was in pain, but apparently asking made me a suspicious customer.

Fortunately this didn't matter a whole lot because I had been issued prescriptions automatically every time I had the various biopsies and procedures leading up to and through my hysterectomy, so I had a bunch of old bottles because I generally only used like 3 pills of any of them. But if I had to deal with the subsequent week of throbbing tooth pain while anxiously trying to eke out a 10 pill prescription I would have been furious.
posted by tavella at 3:51 PM on April 5, 2018 [18 favorites]

This is such a non-issue. The CDC recently announced that the opioid death numbers spiked essentially because they started counting things differently.

The number of total deaths from overdoses was not overcounted. The problem is the counting between the buckets of "illegal narcotics" and "prescription overdoses". The rise of "dying from things you could in theory get a prescription for but are now being sold illegally in various ways" (mostly fentanyl) makes the counting between those buckets messy, and the CDC fucked up how they handled it.

But people are still dying. It is not a non-issue.
posted by feckless at 3:53 PM on April 5, 2018 [5 favorites]

if you love someone, you can tell them you think their meds aren't good for them. even if you're wrong. but if you just think their meds aren't good for you, you have to look at changing your own life and health and living conditions. not theirs.

This was a wonderful post. Thank you.

I wasn't in the position of having a say in any of this for much of my life, unfortunately. Now I am.
posted by billjings at 3:55 PM on April 5, 2018 [5 favorites]

But I cannot sit by and let chronic pain sufferers lie to me and tell me that they need narcotics in the same way that a diabetic needs insulin. This is not true.

Well, not exactly. Someone who doesn't get opiods to manage their pain is almost certainly not going to die within a few hours from lack of them. However, inasmuch as "needs like a diabetic needs insulin" means "will die without"... yeah, it often is the same.

If you cannot move, cannot stand up, cannot roll over because the pain is so strong that every movement exacerbates it, and you can't concentrate on anything else, your lifespan will be severely shortened. If your pain is not quite that bad, then it won't literally kill you not to have meds for it - you'll just be miserable and in agony and unable to do anything useful for anyone for the rest of your life, which isn't likely to be very long, because if you had the kind of insurance that would pay for the personal care you can't do for yourself, you'd have the kind of insurance that will give you pain meds.

I think a lot of people who don't have chronic pain believe it's something like a sprained ankle or a toothache - sure it hurts, and it hurts a lot, but if you move carefully and apply ice regularly, you can manage it. From what I gather (spouse has chronic pain; I don't), it's more like being in labor all the time - sometimes it's "only" very painful, and often it's "I will be doing no moving, no thinking, no conscious activities of any sort until this changes."
posted by ErisLordFreedom at 3:56 PM on April 5, 2018 [30 favorites]

Here's the latest from the CDC.

For those not following the gory details, one of the many interlinked problems going on here is that (evil) people have been adding fentanyl into other drugs, often but not always labelled as something you could get a prescription for (Oxy, Xanax, etc.). So someone will take a pill from a friend and then *bam*.

PSA even if you disagree with me on other things: PLEASE PLEASE be careful if you're getting ANY meds (not just opioids) from unofficial sources. There's a lot of shit out there that will kill you.
posted by feckless at 3:58 PM on April 5, 2018 [6 favorites]

You are using "chronic pain" in a way I don't understand. I have psoriatic arthritis - it's a well-understood autoimmune disease that can be managed with a variety of (mostly very expensive and/or heavy-side-effect) medicines. That management doesn't fix the pain, it just slows or stops - not reverses - the physical degradation of the joints. Any existing damage, or damage not totally controlled by my $18,000 a dose medication, causes pain that I have to live with.

Yeah, that's the problem with speaking in generalities. You know more about the disease than I do, but from what I understand, a narcotic doesn't fix a deficiency with psoriatic arthritis in the same way that insulin shots address a diabetic's insulin deficiency. The narcotic isn't restoring opioids that the the body is failing to produce.

I was thinking of chronic pain diseases like fibromyalgia that I'm more familiar with.
posted by billjings at 4:01 PM on April 5, 2018

Fuck. That. Sorry not sorry.
posted by j_curiouser at 4:02 PM on April 5, 2018 [3 favorites]

If you look at this chart, you'll see that deaths from synthetic opioids other than methadone skyrocketed in 2013. Heroin and other opioid deaths were rising, too, but the synthetics o/t methadone are really striking. What the hell happened? Apparently these are primarily from fentanyl. Was there a breakthrough in non-pharmaceutical manufacturing? Or did some enterprising drug entrepreneur suddenly get the bright idea to make fentanyl and import it?

By the way, it really pisses me off that alcohol is not included as a cause of drug deaths. What the hell do they think alcohol is, a nutritional supplement? Well, it is, I guess, but it's also a drug.
posted by Mental Wimp at 4:06 PM on April 5, 2018 [11 favorites]

I have chronic pain due to inflammatory arthritis, like several other folks in this thread. I am lucky that my condition is currently managed well by one of those tens of thousands of dollars a year biologic drugs and a nightly muscle relaxer, with occasional naproxen or acetaminophen but not too often to protect my kidneys and liver. I know that I am lucky. I know that this will likely not always be true, as inflammation continues to destroy my spine and joints. When the pain gets worse, I will turn to opioids if they are still the only option, and I will do that knowing that they make me puke.

I also have chronic, recurring kidney stones. When I am passing a stone, at times I am unable to do anything but pace for hours. I can't sit. I can't lie down. I certainly can't sleep. At those times, I take 1/4 of a percocet. Even that low dose will still make me puke. But I'll get 2 or 3 hours when I can lie down and sleep before I puke. I have never gotten stoned off of opioids. I've never really experienced anything from them besides some ability to ignore the pain for a few hours, followed immediately by intense vomiting.

If you have never done the calculus of "I could get to lie down and sleep for 2 or 3 hours tonight before the drug that allows that makes me puke my guts out", then I am not particularly interested in your opinion of my use of opioids.
posted by hydropsyche at 4:08 PM on April 5, 2018 [58 favorites]

>But a diabetic has a disease that has a well understood physiological mechanism, that has a well understood prognosis under treatment. Neither of these is the case for chronic pain.

Right, and among other things, it would be fabulous if (for a start) the ortho pain & rehab industry could get its shit together (see the book Crooked on this, for back pain, one of the top complaints precipitating opiate overuse) and *treat people’s pain* (see Stuart McGill for backs, need more McGills for other parts). Also good if doctors could show some humility (because new structures continue to be identified even today).
posted by cotton dress sock at 4:09 PM on April 5, 2018 [1 favorite]

fentanyl was nice after my hysterectomy but it doesn't do shit for the nerve in my brain that believes with the sweaty fervor of a religious fanatic that my entire skull is being crushed in a vice
posted by poffin boffin at 4:09 PM on April 5, 2018 [15 favorites]

Those that fail to study history are bound to make an obscene amount of money when they find a "new safer pain killer". Heroin was named just that as it was going to save the folks hooked on morphine. A few decades later Oxycontin was heavily marketed as a "safe" painkiller. What will the scientists come up with when genetic skills are sharpened a bit?
posted by sammyo at 4:10 PM on April 5, 2018

Or did some enterprising drug entrepreneur suddenly get the bright idea to make fentanyl and import it?

Pretty much. Mostly from China.
posted by feckless at 4:10 PM on April 5, 2018 [3 favorites]

I was thinking of chronic pain diseases like fibromyalgia that I'm more familiar with.

You are not familiar with fibromyalgia. You are familiar with one person who had fibromyalgia, with whom you had an apparently contentious relationship that you blame on narcotics use, and from which you have generalized to “chronic pain sufferers” in the stupidest, most inhuman way possible.

You don’t know what you’re talking about. I mean that literally. Whatever issues you had with this person in your past, kindly deal with them yourself and refrain from projecting them all over people who already suffer more than you can comprehend.

Try to grow your capacity for empathy while you’re at it.
posted by schadenfrau at 4:11 PM on April 5, 2018 [81 favorites]

I dunno. I don't have chronic pain in quite the sense the article discusses, or in the sense being assumed here, but I do have chronic migraines. These can range from mildly annoying to blindingly painful.

I have learned, as my condition worsened, to "accept" most of the low levels of pain and still work or try to see family and friends, or just generally function around my house. I feel shitty and can be crabby or short-fused, but I have accepted trying to function with a lot of low-level pain.

But at the higher pain levels, there's no "accepting" that could get me functioning at my job sitting in front of a computer for 8 hours a day. Or get me driving in a car, or successfully navigating a grocery store. It's just not physically possible. And I have been lucky, in that some of the non-opioid migraine meds mostly work for me, but I have also been known to take one of the dog's tramadols on a rare occasion when the sumatriptan is doing nothing.

I have great amount of sympathy for people who don't have the option to treat their pain with something like a triptan. It must be unbelievably frustrating to have your medication options so limited and have everyone be so unbearably judgey about them.
posted by Squeak Attack at 4:16 PM on April 5, 2018 [16 favorites]

(psa sumatriptan efficacy varies in generic form. if you're taking ranbaxy brand you should try and switch to literally anything else. i personally have had good results with dr reddy's.)
posted by poffin boffin at 4:18 PM on April 5, 2018 [6 favorites]

Some upthead are perhaps being simplistic when they suggest this is a hard either/or — analgesics or acceptance. I think the idea is that acceptance can help negotiate the relationship with analgesics, and thereby get the best relief.

Ask any physiotherapist what holds patients back from recovery (aside from simply failing to do their exercises) and the answer is very often fear of pain — that is to say a certain amount of pain has to be worked through in order to heal, and some patients have difficulty getting there because they have an expectation of zero pain.

Zero pain isn’t necessarily a reasonable expectation in a lot of situations. But when zero pain is what the patient feels entitled to, that can limit their willingness to push, and it can warp their expectation of what they hope to get from analgesics.

Please note, this is a lot different than saying people with acute or chronic pain don’t need pain relief! But we need pain perspective, too.
posted by Construction Concern at 4:19 PM on April 5, 2018 [10 favorites]

I've been on the same dose of opioids for over 10 years... well, I should say I *had* been. It's so difficult to get now that I can't keep the prescription up (have to visit a specific doctor and get a physical written prescription for no more than 30 days... so thats a drive / office visit / another drive /etc every 30 days, *if* he will keep prescribing... my GP stopped prescribing opioids entirely because of all the new rules and sent me to a pain specialist). The pharmacy gets increasingly wary as well. I *wish* something like marijuana worked, as I can get that legally literally blocks from my office without a prescription.

Getting a lot harder to get work done these days, even when I have the meds I'm worried about the next prescription. Not something I have to worry about with any other prescription I've ever had.
posted by thefoxgod at 4:23 PM on April 5, 2018 [12 favorites]

Here are additional details on the pain study; I can't speak for anything about that site's veracity--I wouldn't usually link to it, or Reason either, but can't find something mainstream *or* academic. It's a crowded field, search-wise.
...
posted by A Terrible Llama at 3:49 PM on April 5 [+] [!]

I went to the original paper published in JAMA, and found this tidbit in the eligibility criteria for the randomized trial:

Patients on long-term opioid therapy were excluded.

Note that patients on long-term non-opioid therapy were not excluded. I understand why they would do this: they didn't want to take the time and expense of tapering an opioid user before randomizing them. They could have enrolled only treament-naïve patients, but that would have slowed recruitment to a crawl, perhaps. In any event, this exclusion changes the supported conclusions drastically. The original conclusion in the abstract is:

Treatment with opioids was not superior to treatment with nonopioid medications for improving pain-related function over 12 months. Results do not support initiation of opioid therapy for moderate to severe chronic back pain or hip or knee osteoarthritis pain.

It should read:

Treatment with opioids was not superior to treatment with nonopioid medications for improving pain-related function over 12 months in patients who are adequately controlled using non-opioid therapy. Results do not support initiation of opioid therapy for moderate to severe chronic back pain or hip or knee osteoarthritis pain in patients who are adequately controlled using non-opioid therapy.

That the investigators did not include this important limitation in their conclusions is scientific misconduct.
posted by Mental Wimp at 4:28 PM on April 5, 2018 [52 favorites]

look out, diabetics, you're hooked on insulin! uh oh, people with thyroid problems, that synthroid is a gateway drug!

Once upon a time you could get T-shirts emblazoned "MOTHER'S MILK LEADS TO HEROIN".
posted by Greg_Ace at 4:30 PM on April 5, 2018 [2 favorites]

I have chronic pain including Endometriosis, IBS, GERD, and Postural Orthostatic Tachycardia Syndrome.
I HATE pain killers like that. After surgeries I've only done then sparingly to fall asleep at night then switched to Tylenol or Motrin. They wreck my stomach and make me feel out of it.

But, last year before my endo surgery I was in the ER. I was in so much pain and nausea and nothing I took touched it. They palpated my stomach and I gasped as tears streamed down my face. Everything hurt. Every inch of my body felt nauseous somehow even on my Rx nausea medication.

Then they gave me fentanyl. And in that moment I realized just how much fucking pain I had been dealing with, non-stop, due to endometriosis, and my period, and all of the bullshit. The nausea lifted. I could fucking breathe. And I said my pain was maybe an 8 out of 10. But no. My pain was clearly past 10 but I'm so used to feeling like total shit.

Related to pain meds I take Ativan. It manages my illness symptoms and my anxiety. I am constantly nervous that someone will take it away from me even though I take the smallest possible dose only when I dearly need it a few times a week.

Thankfully, the last time I was with my doctor I mentioned how I was using 1/2 a tablet and my symptoms - terrified that she would tell me I couldn't take it anymore or something - even though she's a wonderful doctor who I owe my life to. Instead she said, "Okay, when you feel like that, have you tried taking a WHOLE tablet?"

The thing is, I know MANY people in my chronic illness circles who NEED these medications, yes, literally to survive. Even ON those medications they're dealing with constant pain and symptoms. And when you go to a GOOD doctor then they can help you manage your pain and medications responsibly.

The problem is with our medical system. Doctors are total shit. Ask anyone with chronic illness. They don't care. They think you're crazy. If one test is normal they turn you away. They assume you're a drug seeker without learning that you have a crippling condition. Or they just throw meds at you to get you out the door.

We need doctors that CARE about patients. We need research and treatment for chronic pain. We need doctors to understand the needs of each patient and check in with them - for example many people are prescribed these meds after medical procedures were Tylenol would be fine for temporary recovery.

We need people to feel that they have HOPE in other treatment options or even recovery from addiction instead of feeling like a criminal. We need pain to be believed.

And if you have never had pain or illness that made you actually contemplate suicide to escape, then you have no right to judge someone else's pain.
posted by Crystalinne at 4:33 PM on April 5, 2018 [48 favorites]

There is an unhelpful dichotomy here between 'opioids' and 'nothing'. There are less effective - and far less dangerous, considering the state of America at the moment - painkillers. A painkiller that gets you back to functional but can't eliminate all the pain is definitely better than nothing. 'Pain acceptance' is the idea that it's also better than opioids.
posted by Merus at 4:36 PM on April 5, 2018 [3 favorites]

It's also not achievable in America's current healthcare system, so.
posted by Merus at 4:39 PM on April 5, 2018

And to add, I'm all for accepting certain levels of pain. It sucks to know that my life will possibly never look like what it could be were I able-bodied again. I know I'm never going to be pain free. Literally something hurts all the time. But I also feel like at least the people I know.. are also constantly in pain. And they only take those meds when things become unbearable. Again, this is where good communication with doctors comes in. Actually rating the pain, tracking it, seeing when it's bearable or not, what might help besides the hard meds.

I have a nausea med that I also worried about taking. Finally a good doctor said, "Oh, you could take that all day, every day if you needed to. Do what you have to do to feel better." And I literally almost cried and felt like someone understood.
posted by Crystalinne at 4:41 PM on April 5, 2018 [14 favorites]

if you're taking ranbaxy brand you should try and switch to literally anything else. i personally have had good results with dr reddy's.

OMG yes, I was just switched to Sun Pharma generic and that shit does NOT WORK! Looks like Sun bought Ranbaxy in 2014 so there you go.
posted by Squeak Attack at 4:44 PM on April 5, 2018 [1 favorite]

Zero pain isn’t necessarily a reasonable expectation in a lot of situations. But when zero pain is what the patient feels entitled to

That was partly my point about my migraines. I don't feel entitled to zero pain. But I do feel like it would be super great to be able to work, see my friends, clean my house, and drive a car.

My mom, who went though a deteriorating hip over the past year or two, and had a hip replacement in January, didn't expect zero pain. But she did need to be able to shop for herself and visit my dad in the nursing home and go out to see friends.

Do people really expect *zero pain*? Or do they just need to get on with their fucking lives and need pain control that will let them do that without barfing or passing out?
posted by Squeak Attack at 4:50 PM on April 5, 2018 [30 favorites]

There's a weird sort of dualism that seems to pop up in these topics (pain, depression (which I have had for over half my life!)). If I found myself 40km from home at night with the temperature -10C, tried to walk home and didn't make it, people wouldn't be saying I should've just practiced "cold acceptance" or walked faster ("then you could've been warmer!"). Somehow though people's nervous systems going "k i l l y o u r s e l f" 18,000 times per day is something they're just supposed to "live with", ideally by never making anyone else aware of what's going on and disturbing them. I hope this analogy makes sense, I'm practicing "low mental energy acceptance" today.
posted by threementholsandafuneral at 4:51 PM on April 5, 2018 [40 favorites]

This bounces back to my dashboard on tumblr every few months: Scale of pain severity

0-10 SCALE OF PAIN SEVERITY
10 Unable to Move: I am in bed and can’t move due to my pain I need someone to take me to the emergency room to get help for my pain.
9 Severe: My pain is all that I can think about. I can barely talk or move because of the pain.
8 Intense: My pain is so severe that it is hard to think of anything else. Talking and listening are difficult.
7 Unmanageable: I am in pain all the time. It keeps me from doing other activities.
6 Distressing: I think about my pain all of the time. I give up many activities because of my pain.
5 Distracting: I think about my pain most of the time. I cannot do some of the activities I need to do each day because of the pain.
4 Moderate: I am constantly aware of my pain but I can continue most activities.
3 Uncomfortable: My pain bothers me but I can ignore it most of the time.
2 Mild: I have a low level of pain. I am aware of my pain only when I pay attention to It.
1 Minimal: My pain is hardly noticeable.
0 No Pain: I have no pain.
posted by ErisLordFreedom at 5:03 PM on April 5, 2018 [49 favorites]

> And if it passes the threshold of tolerance, then a few hefty glasses of Chardonnay will usually do the trick.

I suffer from chronic pain. I have whole body inflammation, diffuse abdominal pain, planters fasciitis, and muscle cramps and aches. I also am afflicted with tinnitus. When I have good days I am mostly functional. Bad days I am exhausted just trying to pretend to some level of normalcy. I mostly have bad days.

None of my pain is intolerable, but it never goes away. People who don't have chronic pain can't understand how utterly draining it is. Pain takes up about 30% of my mental bandwidth at any given time. I can't ever just sit down and relax. If I'm not fully distracted by something I pretty much go nuts.

I used to self-medicate with alcohol. I was beyond abusive. I could make the pain go away for a few hours, and I could sleep some. But it never goes away for long. And the next day I was still in pain, and now had a hangover on top.

I've tried pretty much everything. I've had pretty much every test you can imagine. I've traveled to Colorado to try marijuana. I've been on anti-depressants, anti-inflammatories, and various COX-2 inhibitors. I've tried meditation, massage, physical therapy, mental therapy. Pretty much nothing has worked.

And the things that do work are so incredibly difficult. Exercise helps, so does good sleep hygiene, but these are fairly impossible to do when you are already exhausted. It's much like depression in that with depression I also know what will help, but I can't get myself to get out of bed to do any of these activities

I gave up hope for a pain-free existence some time ago.

The kicker is whatever has been going on with me for the last decade or more is getting worse. I've gone to "pain management" specialists, other specialists, I've been scanned, probed, x-rayed, and pretty much every test you could think of.

Chronic pain keeps me from many of the things I enjoy. I have mobility issues because of pain. I have depression which worsens the pain, which worsens the depression, which... I have a hard time putting on my socks and wiping my own ass (I just can't bend). Standing and sitting are difficult, laying down isn't as bad, so I watch entirely too much Netflix. It's pretty much no way to go through life, but here we are.

I broached the idea of opioids with my doctor. I said that the life of an opioid addict seemed preferable to mine. He didn't agree, but that should give you some sort of indicator of how difficult it is to live with chronic pain; when drinking yourself to death or becoming a drug addict seem like viable and desirable alternatives.

I often feel like I used to feel when I went to a fairly decent, but nothing special, concert. You're glad you went, but at some point you just want the band to quit playing so you can go home. I look to the future and I can imagine around another half a decade of this (I'm 47), and that's a horrible thought. The idea of another 47 years of pain, (especially if it is progressive) is pretty much unbearable. I plan to stick through to the last song, but man, I hope this band can somehow get much better.
posted by cjorgensen at 5:08 PM on April 5, 2018 [40 favorites]

For some people there aren't any painkillers between opioids and nothing. My 80-something mom is both severely arthritic and severely allergic to ibuprofen. She's been working with her doctor for years to find an alternative. Aspirin, capsaicin and a heating pad don't make a dent. Acupuncture and legal cannabis topicals? Ha. Apparently she should just stiff-upper-lip the pain because it's 100% guaranteed she'll become an addict, just like any human being when combined with any opioid for any reason, anywhere, always and forever? Dear Mom, here is a box of sticks for you to bite down on.
posted by Orange Dinosaur Slide at 5:08 PM on April 5, 2018 [19 favorites]

SO MUCH THIS, threementholsandafuneral

I have chronic pain. It is horrifying. I don't wish this on anyone. Opiates, sadly, do not work for my pain. Nothing really works. I have to just make it through my attacks (it's chronic and remittent). Do y'all have any idea how hard it is to get a doctor to take me seriously, even though I don't want even want opiates? It's been nine years and I've finally found a medical team that recognizes that I am suffering and is working with me to figure it out, but even them--when I called to make an appointment, do you know what the first thing they said to me on the phone was?

We don't prescribe narcotics.

We don't prescribe narcotics.

When you're treated like a drug seeker, like a potential liar, immediately, that erodes the doctor/patient relationship. It erodes trust. How the hell am I supposed to trust a doctor who has her secretaries say to all new patients: We don't prescribe narcotics. How do I feel safe going in and telling this person about my body doing horrible things, hurting in mysterious and entirely soul-wrenching ways? How can I trust her to help me with my pain, to look into my pain with me and to try to fix it? And this is the story of why it took me so long to get adequate care for this problem. No one takes my pain seriously. It can't be seen, so it must be imaginary, I must be over-reacting so that I can get drugs, or attention, etc.

I do not wish my pain on anyone but I do wish the understanding that comes from living in a body like mine. I cannot imagine looking at another person with chronic pain and saying "Have you tried accepting that it feels like someone has stabbed you in the eye with a pen and then ripped out all of your molars?" But that's what someone is saying to me when they ask if I've tried accepting my pain. Yes, I guess I have, out of necessity, and I'll tell you: fuck that. I do NOT accept living in this kind of pain. And no one should have to. And if opiates worked, I promise you that I would use them. Unapologetically. Wanting to feel not that is not the same as wanting to feel "zero pain" although neither of those desires is "entitlement" -- you know what's entitled? Thinking that one's opinion about "drugs are bad" is more legitimate than someone else's real, lived experience of chronic pain.
posted by sockermom at 5:09 PM on April 5, 2018 [50 favorites]

I’m diagnosed with treatment-resistant chronic migraine. I’m in daily pain that leaves me unable to work, drive more than five minutes, or leave the house. Unfortunately, I was just turned down for disability on my second appeal because apparently I don’t appear to be in enough pain when I go to the doctor. So I guess you’re out of luck no matter what you do—I stopped asking for painkillers because they never worked, so apparently that told the judge I wasn’t really in pain and I can hold down a job.
posted by epj at 5:12 PM on April 5, 2018 [8 favorites]

Is chronic pain something more people should accept?

nope
posted by Ray Walston, Luck Dragon at 5:14 PM on April 5, 2018 [11 favorites]

look out, diabetics, you're hooked on insulin! uh oh, people with thyroid problems, that synthroid is a gateway drug!

These are not remotely the same because insulin and levothyroxine are not fun, but opiods are potentially fun, so users of them must be regarded with a degree of Calvinist skepticism because someone, somewhere might be having fun with opiods. Also since pain is invisible and chronic pain sufferers are often women this is clearly not an important problem and we definitely shouldn’t work on developing individualized effective treatment modalities because lolwut why would we make systems level changes when it’s so much easier to make this about individual responsibility- in this case, the responsibility of individuals to just live in potential misery because it’s more convenient for the rest of us.

If you believe people have the right to live with dignity and should be as empowered and independent as possible, then you support the right of people with chronic pain to achieve adequate pain relief. In nursing we have a concept called the activities of daily living (adls). When something disrupts your ability to perform your adls so that you are not at your baseline that is a huge red flag to us. We advocate actively for appropriate treatment to restore function. We dont go hey bro, I know you hurt so much that you can’t cook, go the toilet, shower, or sleep but just accept it man. It’s not like you’re really sick like those people with diabetes.

Post pregnancy I’ve had a nasty bit of inflammatory arthritis. This is new to me. It’s thankfully clearing up. I have no fucking idea how someone lives with this all the time and yet there are thousands of people out there doing just that. If you don’t have a chronic illness or a chronic pain issue you should be humbled by the people dealing with this every day, not casting aspersions on how they manage.

Related: BODY POSITIVITY NEEDS TO TACKLE CHRONIC ILLNESS
posted by supercrayon at 5:16 PM on April 5, 2018 [30 favorites]

I'm making this a separate comment to the one above, since it's an entirely different story.

My mother was terminal with cancer. She was in in-home hospice care and pretty much had access to any pain-killer you could imagine. Our linen closet was a smorgasbord of drugs. Some much more powerful than others. We even had liquid morphine in the fridge incase you felt like drooling your way through Crossing Jordan reruns.

And here's the rub. They would force her to rotate her meds. They wouldn't let her stay on anything for too long. I figured it was to preserve the efficacy, like she would get too tolerant of one particular kind, but no, she actually had a doctor tell her, "We don't want you getting addicted."

But since she only took what she needed, and many of them knocked her out for prolonged periods of time, she built up a bunch of backlog pills, so she generally just ignored the doctors and took what she knew worked best.

We're a nation founded by puritans. Pain is our lot in life and anything that can alleviate this pain is evil, especially if it would also bring any semblance of pleasure. Or so I have come to believe.
posted by cjorgensen at 5:20 PM on April 5, 2018 [57 favorites]

There’s a lot of misinformation in this thread in part because the research on this topic is weak from both sides. It’s not clear that long term opioid use is dangerous. It’s also not clear it’s effective for pain. I think it will be a decade before we understand this. There are just not enough good long term studies on this. Anecdotes should be met with skepticism since placebo has a notoriously large effect for pain treatments.

When there isn’t good evidence either way it always behooves everyone to keep an open mind.

I thought the two part series on this from the Science Vs podcast about this issue was a great layman summary of the situation for those interested.
posted by Lutoslawski at 5:21 PM on April 5, 2018 [1 favorite]

It’s also not clear it’s effective for pain.

If it weren't the most effective thing we've found for some kinds of pain, we wouldn't be having this controversy.
posted by ErisLordFreedom at 5:22 PM on April 5, 2018 [23 favorites]

I’m diagnosed with treatment-resistant chronic migraine.

sorry if it's a dumb question but have you tried the nerve blocks? it's what brought mine down from daily to 3-4 times weekly so i'm like HEY EVERYONE GET NERVE BLOCKS all the time now.
posted by poffin boffin at 5:22 PM on April 5, 2018 [5 favorites]

If it weren't the most effective thing we've found for some kinds of pain, we wouldn't be having this controversy.

Even the most basic understanding of the history of medicine would render this idea completely untrue.
posted by Lutoslawski at 5:24 PM on April 5, 2018

Huh. Interesting. I did something like the ACT they discuss in the article in the early 1990s. I have Crohn's disease which emerged in my very early 20s and came with severe arthritis. Back then, they weren't so concerned about addiction, and the doctors kept throwing percocet and other opioids at me-- I think in part because it was hard to see someone my age who was literally weeping in pain as a result of trying to open a pill bottle.

I *hated* the drugs-- I felt out of it and unfocused on them, but nothing weaker seemed to work. A doctor pointed me to a work group for mindfulness and pain acceptance and at least for me it was very very successful in managing my pain. It isn't an either-or thing-- if I need stronger meds, I take them. It isn't a super-power, but it allowed me to function on a daily basis without the negative side effects of the drugs. I don't take anything regularly, which for me feels like a giant win.

I realise that not everyone will be as lucky, nor will their pain be as responsive. But I do wish they would frame this article a little differently to see it as complementary and not as a moral choice. I'm really glad I did the work with pain acceptance. It made my life brighter and better, but I'm not a more moral person as a result. It just worked better for me than opioids did as a long-term option.
posted by frumiousb at 5:27 PM on April 5, 2018 [9 favorites]

If pain is character building and necessary, why should we make any pain medicine available? Acetaminophen is toxic to the liver, ibuprofen can cause stomach bleeding. Why not just accept all of our lots in life and clench teeth through surgery and pep talk your way through appendicitis?

I have had a herniated disc and used short term opiates to take care of an infant and make it through work.

All you people advocating no opiates grit your teeth through a medical procedure and keep on feeling superior. Imma choose functioning.
posted by Gyre,Gimble,Wabe, Esq. at 5:27 PM on April 5, 2018 [14 favorites]

So I have a level 4 headache at the moment. Reading TFA, with its moving wavy lines and eye-popping colour contrasting graphics, actively hurt. I am at work today, despite the fact that all sounds are louder (and many of them hurt), I can smell things extremely acutely and looking at white glary things isn't great either. Yesterday my headache was more of a level 6, though it weakened to 5 sometimes and even down to 3 for a little bit, which was lovely. And that's just the headache.

I also have constant chronic neck and shoulder pain, and sporadically recurring back pain. My knees are completely fucked and I can only do stairs one at a time with pain and difficulty. And I have weird recurring lower abdominal cramp pain which I think must be related to my useless reproductive organs in some way which I thought all women experienced but apparently is not the case. This isn't diagnosed because honestly, I'm sick of trying to explain things to doctors. I also have depression which, though it is not physical pain, intersects with and magnifies and distorts the physical pain in really interesting ways. (Yes, interesting is a euphemism.)

So on a systemic level, my daily pain that I put up with, that I think of as NORMAL, is already 4-5. Getting headaches like the one I've got right now on top of a baseline 4-5 pain level - is this better or worse? I don't know. On the one hand, my pain tolerance is pretty good because I experience it all the time, every day. I do not know what it is like to have 0 pain anymore, though I dimly remember that this was the case at some point in my life.

My point here is that it is really disingenuous to think that people who experience chronic pain are chasing after the nirvana state of 0 pain. Most of us, I think, know that it is not ever going to be achievable again. What I want is for my life to be bearable, for suicide not to seem like the most sensible solution to a situation that is otherwise insoluble.

As it happens, opioids do not dramatically help with most of my pain. I take a daily dose of panadol for my knees and an antidepressant. Ibuprofen, which fortunately I can tolerate, sometimes helps with the headaches but sometimes makes no difference at all (that would be yesterday and today). When the cramps are really bad I take naproxen so I can function. When the back pain arcs up I will take one of my carefully-hoarded panadeine forte or mersyndol tablets, both of which contain codeine, because that actually lets me sleep. But the codeine doesn't actually help my head so there's no point. I think the only thing that would help my head would be severing all my neural connections, which would be kind of fatal.

From TFA, in the last paragraph: Pain acceptance doesn’t have to be an alternative to anything else. It can serve as a coping mechanism alongside other forms of pain management. In other words, what I do every. single. goddamn. day.
posted by Athanassiel at 5:32 PM on April 5, 2018 [9 favorites]

Even the most basic understanding of the history of medicine would render this idea completely untrue.

I think I misunderstood something - are you saying we've found better methods for dealing with the kinds of pain that my husband uses opioids for, and for some reason his doctors just haven't mentioned those to him? Because I thought the reason we had all this conflict, was that:

1) Some people use these drugs for fun, and this is Greatly Offensive to both puritans and people who believe others shouldn't allowed to damage themselves at will, and

2) Doctors have to prescribe them anyway, because otherwise you have huge numbers of people living in screaming agony.

Drugs for which only #1 applies - like LSD - are just banned, and there is no huge controversy about whether some people "really need" them. (There are conditions for which LSD or things like it are helpful, but not in enough numbers that there's a huge push to prescribe it.)
posted by ErisLordFreedom at 5:34 PM on April 5, 2018 [14 favorites]

> There are just not enough good long term studies on this.

I'm going to suggest this is due to what supercrayon says above. Because "users of them must be regarded with a degree of Calvinist skepticism because someone, somewhere might be having fun [...]."

We didn't/don't study the medical benefits of marijuana, or LSD, or MDMA (Ecstasy). Even though all have shown properties to treat all kinds of aliments. We'd rather people live with PTSD, alcoholism, depression, and pain than actually risk allowing someone to actually take some joy in life.
posted by cjorgensen at 5:34 PM on April 5, 2018 [26 favorites]

The number of total deaths from overdoses was not overcounted. The problem is the counting between the buckets of "illegal narcotics" and "prescription overdoses". The rise of "dying from things you could in theory get a prescription for but are now being sold illegally in various ways" (mostly fentanyl) makes the counting between those buckets messy, and the CDC fucked up how they handled it.

But people are still dying. It is not a non-issue.

The distinction matters, though, because a very real possible consequence of sharply decreasing the availability of prescription opioids is forcing opioid-dependent people to switch to more dangerous, illegal sources.

The count matters, because it helps determine the extent to which this is true:

afaik, addiction to opioids causes very few problems so long as the user has consistent, safe access to the drugs.

It should be true, in principle - there are side effects, but they aren't necessarily life-threatening - but it's not always true in practice. People do overdose on prescription opioids. If you know my background (with non-prescription opioids) and general perspective on the subject it's very ironic that I was planning to be the one to chime in to mention that this

1. Keeping someone alive
2. Controlling pain
.
.
.
47. The possibility of addiction to the prescribed medication

was kinda where we were fifteen years ago, and that things seem to have turned out to be a little more complicated than that. But much of the argument against this approach rests on the assumption that more opioid prescriptions does directly (through prescription opioid overdoses) and indirectly (through introducing people to opioid use in general) lead to more opioid deaths. If the direct hazard to pain patients is overstated, that's important to know, especially since I'm already a little iffy on the indirect link (which probably exists but overlooks that there are a whole bunch of important factors underlying the prevalence of recreational opioid use beyond simple availability).
posted by atoxyl at 5:36 PM on April 5, 2018 [1 favorite]

I'm a huge advocate for believing we often can't change the things around us, but we can often change our emotional reactions. I don't freak out when the stock market goes down. I view this as "my stocks going on sale." I try not to view people who are willfully ignorant about the technologies required to do their jobs. I just know this means job security. Even my tinnitus is something I am often able to view positively. I use that constant tone as a focal point for meditation. Sometimes, I can become the singular ringing note in my ears.

What I have never been able to do, is come up with a way to be thankful for my pain. Yeah, it means I am alive, and I am often grateful for being alive, but I just can't extend this feeling to pain.

I accept it in the same way I accept being nearsighted. Yes, both are a part of my identity, but I want the functional equivalent of glasses for my pain.
posted by cjorgensen at 5:44 PM on April 5, 2018 [12 favorites]

Some achieve pain acceptance, some have pain acceptance thrust upon them
posted by The Underpants Monster at 5:54 PM on April 5, 2018 [13 favorites]

Sincere question: some people seem to actually take pride in being callous toward the pain of others. Doctors who claim their patients expect zero pain in recovery. Newspaper commenters who think homeless people should just stop doing whatever they do to deserve homelessness. "Trolls" who tweet racist things at people like Leslie Jones. Is this pretty much the same worldwide, or is it particularly prevalent in the United States?
posted by mrmurbles at 5:54 PM on April 5, 2018 [6 favorites]

Is chronic pain something more people should accept?

nope

my chronic pain adventure has been going on for almost two decades now. I have nerve damage (neuropathy) from an old athletic injury that has no interest in ever going away. No meds or treatments have worked, though I've been told that I might have luck with some fairly hardcore opiates, but that's a door that I'm thus far choosing not to open. Fortunately, the pain only really becomes intolerable when I aggravate it. Unfortunately, I can't live a remotely "normal" life without aggravating it.

So much for normal.

The old life I knew before is long gone. As are many of my friends etc. There is just so much that I can't really do anymore ... less I aggravate things. So when I see that question:

Is chronic pain something more people should accept?

I have to shake my head at the complexity of my particular answer. Apparently I am accepting the pain because I'm not opting for opiates. But actually no, because I've radically redesigned my life to avoid those things that aggravate the pain. And yet, I'm in pain right now, as I am pretty much all the time -- it's just not bad ... unless I aggravate it.

I guess what I do like about the article in question is reflected in this bit:

“The message of traditional pain management is that you’ve got to manage the pain first and then get back to your life. But entire lives can be lost in the pursuit of pain relief that may never come,” said Dr. Kevin Vowles, a clinical psychologist and associate professor at the University of New Mexico. “The message of acceptance and commitment therapy is that it’s possible to begin to rebuild one’s life even with pain.”

Because I finally got tired (and sick) of the waiting for all the kings horses and all the kings men of the medical/pharmaceutical industry to get me my old life back (all the tests and treatments and programs and waiting lists etc, and yeah, also a bunch of Eastern and Alt-Medical options), and I suppose like anybody who's been permanently disabled, I've focused on living the life that I can live. And honestly, it's not that bad. I've certainly endured more more despairing seasons.

Or as cjorgensen just put it:

I'm a huge advocate for believing we often can't change the things around us, but we can often change our emotional reactions.
posted by philip-random at 5:56 PM on April 5, 2018 [2 favorites]

Using mindfulness on humans to force them to endure more suffering without mercy is an abuse of power and an abuse of the very foundations from which meditation grew. Connecting to the atman means to HEAR the suffering, and tend it with love and resources, not disregard it, not shut it up, not ignore it.

"Shiva told Parvati that the world is an illusion. Nature is an illusion. Matter is just a mirage, here one moment, gone the next. Even Food is just Maya.

Parvati, mother of all material things including food, lost her temper. "If I am just an illusion, let's see how you and the rest of the world get along without me," she said and disappeared from the world.

Her disappearance caused havoc in the cosmos. Time stood still, seasons did not change, the earth became barren and there was a terrible drought. There was no food to be found in the three worlds of Akaash, Pataal and Dharti. Gods, demons and humans kept suffering from the pangs of hunger. "Salvation makes no sense to an empty stomach", cried the sages.

Seeing all the suffering, Parvati's heart melted and she appeared at Kashi and set up a Kitchen. Hearing about her return, Shiva ran to her with all other hungry mendicants and presented his bowl in alms saying, "Now I realise that the material world, like the spirit, cannot be dismissed as an illusion."

Parvati smiled and fed Shiva with her own hands.

Since then Parvati is worshipped as Annapoorna Devi - the Goddess of Food."

When meditation is being used this way against the people, may any who brought meditation to the people be able to right these wrongs, may she who hears the cries of the people and responds be able to render aid.
posted by xarnop at 6:02 PM on April 5, 2018 [41 favorites]

when zero pain is what the patient feels entitled to

do you...understand...that people end up with a physiotherapist because, in many/most cases, they felt "entitled" to nothing at all and worked or moved through alarming pain into injury and consequent excruciating pain, either because they knew no better than to ignore that pain or because they had to? that this is how overuse injuries, sports injuries, musicians' injuries, and workplace injuries, all of which can lead to chronic pain, happen? that they did it to themselves, are acutely aware of that, and have been explicitly instructed by any good physiotherapist to say something and stop if there's sudden pain?

btw how much pain do you think you deserve to be in and should rationally expect to feel? I am asking personally, not generally.
posted by queenofbithynia at 6:13 PM on April 5, 2018 [37 favorites]

also, doctors in every specialty complain about patients with unrealistic expectations, problems that can't be cured, and hopes that can't be met. some of them are very cruel about it; others make it clear that they're angry with themselves for having no answers to give and are just taking it out on the patient. to their credit, most do this in semi-private places, though obviously not private enough to keep people like me from seeing it.

and yet I've never heard an oncologist smirk knowingly about patients who think they are "entitled' to be cancer-free just because they did a few rounds of chemo, the whiny babies. that disgusting and sanctimonious "entitlement" language is the special purview of a certain type of pain specialist and practitioner in pain-adjacent specialties, and they should realize the shame they bring to their fields.
posted by queenofbithynia at 6:27 PM on April 5, 2018 [46 favorites]

We don't prescribe narcotics.

Oh god this fucking bullshit.

A few years ago congress got all nervous about veterans being overprescribed meds, so now none of us can get the things that were actually working at the VA without seeing a doctor literally every month to get a new prescription. Which means people lose their jobs or don’t get their meds. Because no one has twelve days off a year.

I fucking hate puritanical and senseless drug restrictions.
posted by corb at 6:34 PM on April 5, 2018 [26 favorites]

This bounces back to my dashboard on tumblr every few months: Scale of pain severity

0-10 SCALE OF PAIN SEVERITY
10 Unable to Move: I am in bed and can’t move due to my pain I need someone to take me to the emergency room to get help for my pain.
9 Severe: My pain is all that I can think about. I can barely talk or move because of the pain.
8 Intense: My pain is so severe that it is hard to think of anything else. Talking and listening are difficult.
7 Unmanageable: I am in pain all the time. It keeps me from doing other activities.
6 Distressing: I think about my pain all of the time. I give up many activities because of my pain.
5 Distracting: I think about my pain most of the time. I cannot do some of the activities I need to do each day because of the pain.
4 Moderate: I am constantly aware of my pain but I can continue most activities.
3 Uncomfortable: My pain bothers me but I can ignore it most of the time.
2 Mild: I have a low level of pain. I am aware of my pain only when I pay attention to It.
1 Minimal: My pain is hardly noticeable.
0 No Pain: I have no pain.

I remain forever grateful to the friend that told me (while I was sitting in front of her crying, recounting a doctor's visit on the previous day, in which I told him I needed a referral to a surgeon after a year and a half of chronic pain because I could barely put on my shoes in the mornings, and he refused), "THIS" - she gestured to my crying face - "IS A TEN. The next time you go in there, you write TEN. Because ALL of your pain matters. Emotional pain MATTERS."

I did, and I pushed back at the doctor, and I got the surgery, and it worked. Fuck this pain acceptance nonsense.

Anyone with chronic pain can tell you that the problem with the pain scale is that there's no temporal element to it. It's just the pain level AT THE MOMENT. There's no accounting for how long the pain has been endured.

Day after day after day of fours, fives, threes, and the occasional eight, until you've been in pain so long you fantasize about cutting off the part of your body that never stops aching, until you barely remember what your life was like before the pain? Those fours, fives, sixes, trust me, they add the fuck up.

I can't even imagine what the day-after-day nines and tens feel.
posted by duvatney at 6:38 PM on April 5, 2018 [42 favorites]

Seriously, fuck this noise. I’m on record as believing that there’s enough suffering involved in the most basic, full-privilege, no-challenge version of being a living being human. I don’t think pain and suffering are good for you or instructive or righteous. I think that pain and suffering are pain and suffering and we should be doing what we can to alleviate that, not to handwave it away with “You’re just not trying hard enough to accept your pain.”
posted by thivaia at 6:39 PM on April 5, 2018 [14 favorites]

Erislord you are missing:
12. Unconscious.
11. Involuntarily screaming and incoherent.

Those are 9 and 10 for me, respectively. I will never say that I am 10, by definition. And the response at 9 isn't likely to actually be a number you can recognize.

I can't even start with how strongly I disagree with the premise here. I am nauseous and shaking just thinking about finding the adjectives. No, I did not RTFA because PTSD, and I will shake all night just thinking about it already.

Clearly written by some delusional fairy believer who has never experienced serious pain. That's the very kindest thing I can say.

I did browse that article on "opioids don't help chronic pain" when it came out that is way, way overstating its very, very dubious methodology and the basic questions it did and didn't ask. No, I'm not up to debating it with anyone, I'm going to throw my PhD cred down and mic drop at this point, that was ultrafine bullshitte truthy preaching from the mass media health purity zealots and nothing more. I'm going to log out now because as you can see I get very, very, very, very angry about this topic and I like most of you.

Fuck that noise, man. So, so angry.
posted by Dashy at 6:44 PM on April 5, 2018 [25 favorites]

I can remember the genesis of the opioid epidemic fifteen years ago. Doctors were being marketed a "war on pain" where no patient should ever have to live with any kind of pain on an ongoing basis. For the first time, all patients were being asked if they experienced pain. Many who wouldn't have even mentioned pain otherwise were being prescribed opioids. It was suddenly being grossly over prescribed. Not to people in extreme chronic pain. It was being pushed onto patients.

Since then we've learned that a large percentage of patients prescribed opioids for even four days become life long addicts, willing after that one exposure to search for the drug on the street. More people died of opioid related deaths last year than in Vietnam. This is insane.

Long story short. In almost all the cases mentioned above I think pain meds should be prescribed, but in a majority of the cases opioids are being prescribed today, they probably shouldn't be. Addiction is it's own kind of hell. There's a reasonable position to take on this issue.
posted by xammerboy at 6:49 PM on April 5, 2018 [4 favorites]

So I'm very late but read all this while on the bus with great interest.

I have chronic pain, and have since the third grade, which comes and goes. There is always a low level, static equivalent version of pain which never fades, but is livable. Then I have the unbearable flare ups, ranking on the 9-10 from that posted pain scale.

I could elaborate greatly upon my pain etc, and I agree with most people here that patients should be given access to medicines which will help their functioning.
One thing that helped me that I learned in therapy is to view myself as "a well person with pain." It helped shift how I perceived myself and framed up my pain because for so long I viewed myself as broken, defective, a jumbled marionette with no hope of feeling ok, ever. Tie that all up with how pain interacts with depression, and how depression interacts with pain, and it turned out that viewing myself as fundamentally broken was actually making my pain worse. It lowered my mood, and my lowered mood caused more physical pain (I have the sort of depression or whatever the hell it is that nobody can seem to agree on that has physical counterparts). I also felt like less of a victim of my pain, and I began to view myself as a normal person who experiences a state of pain. It sort of gave me an escape route, lifted the burden of the curse a little, and I stopped self-stigmatizing as much. Because severe pain started when I was younger, it has seriously shaped my perception of myself, my state of empowerment, how I relate to others, etc etc etc.
I think this article is very lazy but I am glad Metafilter is having this conversation. It's certainly one that deserves more focus.
posted by erattacorrige at 7:57 PM on April 5, 2018 [15 favorites]

Hey, poffin boffin, what are “the nerve blocks”? I have tried Botox, if that’s what you mean—it did nothing.
posted by epj at 8:06 PM on April 5, 2018

Squeak Attack: “Do people really expect *zero pain*? Or do they just need to get on with their fucking lives and need pain control that will let them do that without barfing or passing out?”

The world contains both. Debilitating pain exists on a continuum. The existence of people who cannot function without relief is not an argument against pain being a complex relationship between expectation, attitude, and analgesics.

To answer the question, yes, there are indeed people with expectations of zero pain. If you don’t know a physiotherapist to ask about it, as in my example, you might quiz a dentist or a nurse.
posted by Construction Concern at 8:07 PM on April 5, 2018 [1 favorite]

queenofbithynia: “how much pain do you think you deserve to be in and should rationally expect to feel? I am asking personally, not generally.”

I don’t think people deserve pain, queen. Pain exists, though, and it causes distress. Some amounts of pain are situationally appropriate. For example, if I suffer a traumatic amputation I expect a more significant and distressing experience of pain than when I knock my knee on the post of my desk.

Pain is not always a signal to stop what you’re doing. That’s why, under the guidance of a professional therapist, we perform certain motions despite pain. The idea is that there is a therapeutic benefit to the motion. Some patients in pain have trouble getting that idea at first. Good therapists help them figure it out.

Certainly that’s been my experience with chronic pain. Does that answer your question?
posted by Construction Concern at 8:17 PM on April 5, 2018 [1 favorite]

Between 8% and 12% of those who take opiates for chronic pain management develop opiate use disorder, and fewer than 1% of those who are prescribed them at all. Around a third of US citizens are prescribed opiates each year and around 0.005% of the US population dies each year from overdose on commonly prescribed opiates, although it's difficult to disentangle how many of these deaths are actually from people overdosing on their own prescription as opposed to black market products (sources: hhs.gov, census.gov, drugabuse.gov).

There's no drug that will make everyone instantly dependent, because the vast majority of people simply do not have the type of personality which is susceptible to misuse. Even amongst those who do become dependent, most will not die as a result.

That's not to lessen the tragedy facing those who do, and those who become addicted, but it does hopefully put into perspective that the risk is not overwhelming, particularly for short term use.

I think informed choice is a better answer than outright proscription, particularly when we know that prohibition of any kind inevitably strengthens the black market and leads people to obtaining more dangerous, unregulated products.

Those that can and do choose to manage their pain without opiates should be offered that informed choice, just as those who cannot should retain the informed choice of using them.

Just my outsider perspective as a non-USian.
posted by walrus at 8:43 PM on April 5, 2018 [8 favorites]

not to be like, grim as fuck, but my friend who also chose this method of pain management died of liver failure before she was 40.

If sclerosis is going to get me it'll have to get in line and take a number. I'm scheduled to turn 69 next month...
posted by jim in austin at 8:44 PM on April 5, 2018 [5 favorites]

It's also not achievable in America's current healthcare system, so.

A million times this.

Oh god, I can’t believe I’m jumping into this, but here goes...

Hi, I’m a doctor that treats chronic pain with opiates. (Please don’t look me up, my chronic pain practice is 150% full and I am up front about my sympathy for people’s suffering but my inability to take any more of it on). I am also a better doctor than 98% of my colleagues and regularly put myself way behind in order to spend the amount of time necessary to adequately understand and treat my patients appropriately. This is all happening in a milieu where insurance companies are squeezing me to see more than four patients an hour so I can pay my nurse, where your insurance company sure as hell would prefer to pay for your methadone than pay for your MRI and expensive spinal injections (by the way, methadone is a terrible, terrible drug for a whole lot of pharmacologic reasons and if you’re on it, it’s only because it’s cheap and you need to get switched off it immediately. METHADONE KILLS PEOPLE, even those who take it as prescribed). We also have evidence that chronic pain correlates with PTSD in 80% of cases and greatly complicates pain treatment and the only thing scarcer and more expensive in this country than quality health care is quality mental health care. We have astoundingly few other options to treat pain with besides NSAIDs and opiates. Neuromodulators like gabapentin and tricyclics kinda sorta work in some patients. Lidocaine patches and nerve blocks do work, but fuck if I know how to get someone to pay for that if you’ve got the poor people’s insurance. Same with acupuncture and massage. I truly believe there’s something there with cannabinoids and I freely recommend people try it but there’s extremely little research and lots of people can’t take it or it’s just too expensive and not effective enough. And when I do see my chronic pain patients, we spend 30 minutes talking about meds, activity level, side effects, their chemical dependency risk factors, their mental health, and how much hassle their insurance company is giving them that we are then out of time and I walk away feeling unsettled that we never discussed their latest neurology consult or whether that new immunomodulator might treat their psoriatic arthritis better. I literally spend more than all of the time I have allotted for them on the opiates and none on the underlying cause of their suffering. Or whether they got their fucking mammogram done because I’m really worried about that lump.

And all the while, the clear message physicians are receiving is that if you prescribe chronic opiates you’re a bad doctor who can’t say no. The Medical Quality Assurance Commision’s monthly newsletter arrived just today and literally half the names listed who’ve lost their licenses this month were for overprescribing. I myself have had patients with legitimate objective sources of chronic pain kill themselves (inadvertently? Who knows they’re, not around to say) with medication I prescribed.

And pain clinics, holy shit what a joke. If there is a dumber group of doctors out there practicing I don’t know who they are. Every consult I get back says either “Here, take all you want!” or “Nope, opiates are always too risky, go back to your PCP to discuss alternatives.” (What the FUCK do you think I sent them to YOU for?!)

Oh hi! I’m also a doctor that treats a shit ton of chemical dependency. In exactly 100% of the cases of heroin addiction I treat, the problem started in a doctor’s office with a prescription. Sometimes it was a surgery with a long recovery, sometimes it was prescribing a “temporary” supply until someone could get definitive treatment that took months for insurance to approve and oh hey guess what now you’re habituated to something that is incredibly difficult to stop. Sometimes grandma with terminal cancer died in hospice and there’s all these extra pills lying around. So now the doctor is being dragged into something they have neither time, nor training for, nor any kind of control. So they get cut off and heroin is so damn cheap and available now. I have no doubt I have created heroin addicts after they’ve been cut off after months of “lost” prescriptions, escalating doses, double dipping, or trading pills for other drugs. Yes we have policies for no lost prescriptions, drug testing, prescription drug registries but doing all of that is just eating up more and more of the time that I don’t have to do this thing right.

I cherish my chronic pain patients, I really do. They have amazing stories: lumberjack vs chain saw 20 years ago*, crane fell on me and I spent 2 years learning to walk again, my spinal cord is completed pinched off and I’m paralyzed but no surgeon will operate on me because I’m 400 pounds. I can see the times that it really works and I see these people every month and I get to know them and their families well. Mostly I’m inspired to see them struggling to do the things we discuss in an effort to improve their function and maybe even wean their dose.

I am all in favor of any ideas and research that might lead to improvement in treatments and recognition that a quick script is not the only way and in fact is risky and inadequate. I first heard about “Pain Acceptance” on the Vox podcast. It sounds like Mindfulness which is a concept that has been revolutionary in my personal life and for at least some of my patients. Is it going to fix all chronic pain? Fuck, of course not! But some people have benefitted so cut this shit some slack.

But I guess my big beef with all of the controversy is that the liability always comes down to the individual provider when we operate in a system that assigns almost no value to care that requires compassion, expertise, and time and that’s why you get doctors that will only say “no” or doctors that will quickly hand out anything to move on to the next person and have created a generation of addicts. Patients should demand better and doctors sure as hell should demand better. In the meantime, I take care of the maximum number of chronic pain patients that I can handle safely and that’s why my receptionist tells new people on the phone “I’m sorry we don’t prescribe chronic opiates here.” Go ahead and flame me, I know you’re angry and suffering.

*the first time I met lumberjack vs chainsaw we spent an hour together that I didn’t have, he telling me about his experience, me telling him about my approach, part of which always includes some kind of physical exercise, whatever you can do. Later that day I was at my gym and there is my lumberjack taking a tour a checking it out. Years later, he’s still there, he mostly does water walking but we shoot the shit in the steam room regularly. I still think he’s on way more methadone than is healthy (ok he’s my one guy on methadone, only because it is literally not possible to pry that much methadone off of someone). I’m sure he’s the one I will lose my license over, but he’s happy, he can play with his grandson and attend his daughter’s wedding. He’s like seven feet tall and covered with deep gashes and he scares the hell out of everyone, but I love him.
posted by Slarty Bartfast at 8:44 PM on April 5, 2018 [139 favorites]

No, give people access to safe / clean painkillers. If people don't want them, that's fine. But give them the option to decline.

I’ve often felt that the solution that would make *my* life easier is to legalize it all and then let me act as consultant to those who want it.
posted by Slarty Bartfast at 9:07 PM on April 5, 2018 [10 favorites]

I have tried Botox, if that’s what you mean—it did nothing.

yeah, that's basically it although i also get something for occipital neuralgia which is i guess some other kind of thing? maybe a steroid? it feels cold? just poked into the back of my head. i don't even ask anymore when a doctor comes at my face with a needle. just stab me, it's fine.

ugh, it sucks that nothing is giving you relief though.
posted by poffin boffin at 9:14 PM on April 5, 2018 [2 favorites]

a certain amount of pain has to be worked through in order to heal

Wait, what exactly is the "work" that you think people with, e.g., autoimmune diseases or cluster headaches need to be doing in order to get better that an opioid would allow them to slough off from?

When you say things like this, is there ever a tiny little flag that gets tripped in your head saying, "hmm, I am using some of that same the problem with you is, you don't work hard enough rhetoric that is used to unfairly attack many marginalized groups, maybe I should examine my premises a little?" Just curious.

I also find it quite telling that people seem to think that those of us who are concerned about blanket programmatic restrictions on access to opioids need the evils of addictions explained to us. It's an abstract phenomenon for you guys, opioid abuse, it's something that is bedeviling some community out there, but surely you can rigorously reason your way to a solution! I assure you that I, and I suspect many others here, have more than sufficient first-hand exposure to the phenomenon. We are not concerned about opioid restrictions because of some failure to be able to imagine What It Must Be Like.

Anyone who is all violently concerned about opioid prescriptions because omg, people are DYING!!! who at the same time hasn't given a thought to harm reduction is acting out a moral panic, not thinking. People die of opioid abuse. A lot of them die because they are buying street drugs of uncertain composition and strength. A lot of them die because after a stint in rehab they don't realize that they've lost some of their tolerance. A fair number of them die of the secondary problems that come with IV drug use generally. You could save many lives without torturing chronic pain-sufferers if you had safer injection sites everywhere. But that, that is unthinkable, whereas telling people they need to work harder to get through their pain, that makes sense. That's a narrative you understand.
posted by praemunire at 9:25 PM on April 5, 2018 [31 favorites]

Since then we've learned that a large percentage of patients prescribed opioids for even four days become life long addicts, willing after that one exposure to search for the drug on the street.

No, no we haven't. Think about that for two seconds. Honestly. Is it even plausible? How many opioid addicts do you think there are, vis-a-vis every person who's ever had significant surgery and had a short-term script for a narcotic?

This is a genuinely challenging problem which implicates many broken systems in our society (and, yes, has been amplified by some bad actors in recent years). I think people of good faith can have different opinions on how best to manage it. I certainly don't have all the answers. But, God, I am constantly stunned and perplexed by the dynamics that drive people to repeat things like the above statement without even thinking to do a fact check, because it fits their worldview so perfectly. It really amazes me, what people will say and believe about drug use, like tales from a fantasy realm whose very implausibility lends verisimilitude.
posted by praemunire at 9:38 PM on April 5, 2018 [32 favorites]

The generally accepted rule is that it takes daily use of about 30 MEDs (morphine equivalent doses, 30 is equal to approximately 4 regular strength Percocet per day) for 2 weeks to develop some meaningful tolerance and uncomfortable withdrawal upon abrupt discontinuation. Certainly, there must be people who get their first taste and decide “I feel great! This is how I want to feel forever!” but that’s an extremely edge case that is easy to spot and deal with and not at all representative of the millions of people who have some combination of physical and mental distress that feel better on opiates and who make this an extremely complex and emotional issue.
posted by Slarty Bartfast at 10:03 PM on April 5, 2018 [19 favorites]

that is to say a certain amount of pain has to be worked through in order to heal

I have trigeminal neuralgia, which is chronic and progressive. It's either on (my facial nerve misfires and I have searing continual facial pain that makes me nearly vomit, and I cannot eat, drink, speak, breathe, or do anything but curl up into a ball making plans to kill myself) or it's off (my nerve isn't misfiring). THERE IS NO HEAL. I will have this forever, unless my doctors hit upon the perfect surgical procedure that knocks it out, but even then a huge percentage of the time it comes back.

THERE IS NO WORKING THROUGH. There is no heal.

TN is nicknamed the suicide disease for a reason. I absolutely believe that if I hadn't gotten most of my pain under control with a massive, ever-changing concoction of expensive and toxic medications, I would be dead now.

In return, I pay hundreds and hundreds of dollars a month...just to live. I have given up my ability to have children. To sleep in ever, since I have to take meds every six hours. To go anywhere without a huge bag of pills.

I am better off than so many. And the drugs that treat my condition aren't pain pills—they're anti-epileptic drugs that slow my nerve so it doesn't fire all crazy. Except now, thanks to our society's inability to understand pain and addiction and actually treat and help people who are addicted to opioids, one of the medicines I depend on to literally live is becoming more and more suspect since, even though it's not a pain med, it's being turned to by people for an additional or alternative high.

My pain can't be worked through. I'm human, and I'm entitled to live. So fuck the sanctimony I read in this thread, and fuck our bodies in which we're often trapped, and fuck the message that this is any of our faults.
posted by mynameisluka at 10:56 PM on April 5, 2018 [52 favorites]

There is no drug, ever, anywhere, that brings some set of happyfun feelings, that will not cause instant addiction in some users - some people are going to try it once and spend the rest of their lives chasing that high.

This fact is absolutely irrelevant to how easily available it should be. Availability should be based on
* Possibility of accidental (or deliberate) overdose or other harms (in the case of opioids, fairly high),
* Functionality towards its purpose (also pretty damn high)
* Cost of medication (pretty low; pharma companies may drive up the cost but opium is cheap, which is how it got so popular)

And probably a few other factors I'm not thinking of. But "some people will get hooked" is meaningless, even if it's "some people will get hooked in the amount of time it takes to heal from a single surgery." If the stuff is cheap and easy to split into small doses, there should be NO PROBLEM with this.

It's easy to OD, and it causes motor control problems... so we need good education about do not take this with booze and no, you really really cannot operate a forklift under the influence and so on. There are good reasons for not legalizing it like marijuana has been legalized in some places, but there are no reasons not to make it available for those who need it, and no reason to decide that "need" means "would be writhing in agony for more than 3 hours/day if they don't get it."

The more I look at the war on pain drugs, the more I realize that the US has a terror of any policies that require people to cope with consequences. We ban things that can be problematic because all our support systems are based on blaming someone, and with drug overdose/addiction/misuse, it's often hard to sort out exactly who to blame. So instead of recalibrating for "no blame, just people who need something," we try to remove whatever was setting off the "problem without an evildoer" alarm.
posted by ErisLordFreedom at 11:10 PM on April 5, 2018 [16 favorites]

Slarty Bartfast does make a good point about the amount of time doctors receive in order to treat patients, honestly.

I still see military medical providers even though they are the veryvery judgiest about my weight, sex life, and fertility and even though they are never, ever, there on a weekend and I have to tighten my belt and take a day off work specifically because I can sit down with a primary care provider for 45 minutes to an hour and explain every little thing wrong with me and exactly how I’m hurting and they can send me to specialty clinics for the stuff they can fix. And having that time matters. My husband’s gallstones, for example, went unnoticed for five years of providers who only could take fifteen minutes with him. When he had a doctor who was able to sit down until he figured the problem out? They were like “holy shit you have a bladder chock full of gallstones and must have been in excruciating pain for years!”

And like - having a physical therapist able to walk you through exercises twice a week helps, and all kinds of great stuff that we just can’t do because medical appointments are not considered a good reason to miss work in this country anymore. And that’s not physicians’ faults, really, that’s “our lives are full of things that are bad for our condition because of the way the world works.”
posted by corb at 11:14 PM on April 5, 2018 [8 favorites]

I didn’t know that so many of us suffer chronic pain. I salute my fellow travelers in misery, and I thank you for all your pissy, pointed comments above.

I’ve tried just about everything modern Western medicine can throw at my fibromyalgia pain: NSAIDs, Cox II inhibitors, tricyclics, SSRIs, SNRIs, SSNRIs, Tylenol 3, and Ultram. Nothing works. I’ve tried various other approaches, too, of desperation, and those failed as well. The place where I get medical care has one of those big “no opioids” signs. Until recently, I used gabapentin for the migraine, but it’s not working for that now and never helped the fibromyalgia (but I am so pissed off that morons are fast working to ruin that drug, too). Alcohol is one of my migraine triggers, so I can’t even drink the pain into dullness.

So I’ve accepted, over the course of 30 years, that fibromyalgia means I’m going to be in pain every waking minute. (I’ve come to learn, too, that I’m one of the lucky ones who gets a respite while sleeping.) I’ve learned to accept this so well that I don’t consider it my primary medical concern; it’s No. 3 after chronic fatigue syndrome and chronic migraine. I accept that I have to deal with those, too, for that matter, but they all take one hell of a bite out of my life.

Every drug has its side effects and the potential to hurt as well as heal, and we accept this. No one has the right to keep a useful medication from a patient in need. Pain is a harm in and of itself, and the first rule of medicine is to do no goddamn harm. The Calvinists, whether in government, medicine, or next door, can fuck right off.
posted by bryon at 1:44 AM on April 6, 2018 [18 favorites]

I kept scrolling and scrolling to see a response that actually engaged with what the article is about, which is the effectiveness of acceptance and commitment therapy, kind of an offshoot of CBT, for treating people with chronic pain.

It's about a mode of therapy in addition to medication. I agree that the framing is kind of fucked, but as someone who has been enormously helped by ACT (admittedly for phobias and anxiety) I'm a bit perturbed by the backlash.
posted by nerdfish at 2:32 AM on April 6, 2018 [11 favorites]

There's a shift away from focusing on drugs as the basis for chronic non-cancer pain management purely because none of them work very well. Opioids may give some short term relief but there is development of tolerance and increased pain sensitivity that make them not fit for purpose. Opioids induce neurologic changes which actually increase the body's perception of pain long term. And every other magic drug invented in the last decade has turned out to be a lot of overblown hype too. So we are left with non pharma methods.
posted by chiquitita at 2:52 AM on April 6, 2018 [1 favorite]

Along with everything else that's been said here, another problem is that when you live in a society that measures how "deserving" people are in terms of their financial contributions to said society, and that expects people to be self-supporting, you can't tell people to just accept their pain unless you're also going to advocate for a society that thoroughly supports people who are unable to provide for themselves financially or otherwise because pain incapacitates.

I mean, I go back and forth between trying to accept the smaller scope of life that my health issues seem to dictate and trying to push back against that and find ways to function anyway. Part of that is because there are things I want to accomplish in life and I don't want to give up on them unless they really are impossible. But part of it is also because I need an income in order to be able to live and because I don't have anybody else to take over all the physical and practical chores that daily life requires. My earning ability is already pretty heavily curtailed and I've cut back on basically all the non-essential chores, but if I weren't constantly taking nsaids I wouldn't even be able to support myself at the current level. (I keep trying, because I worry about the long-term effects of ibuprofen etc. - but I always get to the point where I just can't get through the day or the hour in a functional state without it.) So if you want me to just live with the pain and its resultant level of (non)functionality, you'd better simultaneously be working to make that an actual viable option. As it is, I don't really have the choice.
posted by trig at 4:05 AM on April 6, 2018 [18 favorites]

Day after day after day of fours, fives, threes, and the occasional eight, until you've been in pain so long you fantasize about cutting off the part of your body that never stops aching, until you barely remember what your life was like before the pain? Those fours, fives, sixes, trust me, they add the fuck up.

#QFT

Only skimmed the thread but this stood out. Add into that major depressive disorders where a series of 678s slips your brain right back into suicidal ideation mode.
posted by tilde at 4:50 AM on April 6, 2018 [10 favorites]

oh dear god endo pain. I hit 10 regularly, but no ER so long as I can tell nothing has "broken". Something breaking would be an 11; the pain is distinctly different, even if similar.

Anyone who lacks experience with pain and is curious, well, I've had a broken wrist (both arm bones fractured and fissured), tore open my right elbow while playing street football on asphalt – there's still asphalt in my elbow and I have a 4" long, 1" wide scar, I've been pushed up against an old-school cast iron fireplace and have a 6" long scar on a bicep from it, have multiple knee scars from skidding on more asphalt as a kid, sliced open both my thumbs with knives while carving, have slipped and fallen on ice and had doctor-mandated bedrest for the pain.

All that? Well, the football elbow injury happened when I was 18. My knees were, again, also skinned, as well as both hands from breaking my fall. A dear friend, a Boy Scout, picked out as much asphalt as he could before the EMTs arrived. Unmedicated eh. I helped him. Because compared to endo? It was "4 Moderate: I am constantly aware of my pain but I can continue most activities."

So if you're able to imagine having a six-inch long gash that's deep enough to see your muscle and bone, and it's a four on your scale? Yeah.

Broken wrist got close to an eight. The ER people were all, "you're coherent? after surgery?? O.o;" and I was like, why not man, it's not like it's my gut ripping itself apart. When I went to have the three pins pulled out, I refused strong pain meds so that I could get home earlier. My surgeon was like, "what the fuck?!" and I was like, dude, check out my elbow scar, let me tell you about it. So he let me, and I watched my wrist as it looked like raw chicken being poked and pulled. Went home fine on my own in public transportation an hour later.

Endo? Endo is getting the six-inch elbow gash and the cast iron burning stove over, and over, and over again in your gut every few minutes for 48-72 hours, while the muscles surrounding it cramp, and while your body is also trying to push stuff out, and with the radiating-pulsating-stabbing pain you get with a broken limb.

Men have told me it sounds like being kicked in the nuts repeatedly, and given the sensations I imagine that's true. So imagine that for 48 hours minimum.
posted by fraula at 5:33 AM on April 6, 2018 [19 favorites]

praemunire: “Wait, what exactly is the "work" that you think people with, e.g., autoimmune diseases or cluster headaches need to be doing in order to get better that an opioid would allow them to slough off from?”

My comments concerned people in physiotherapy recovering from injuries, surgeries, degenerative conditions, et cetera.

Do read all the relevant words before going off half-cocked.
posted by Construction Concern at 5:41 AM on April 6, 2018 [2 favorites]

When my back went out, the first time, the ER nurse asked me what my pain level was, on a scale of 1 to 10. I answered. Then she asked the most horrifying question I ever hope to be asked:

What pain level would I like it to be?

The idea that the answer to this question would ever be anything other than "zero" -- that constant pain might become something that is just... normal, and that that happens frequently enough that that would be a reasonable question for an ER nurse to ask... man. If I'd been able to just curl up and die at that moment that is exactly what I would have done.

I had a lot of time over the next few months to experiment and learn about various levels of pain from a spinal column that I came to think of as my own personal gom jabbar.

Paragraphs of ugly detail deleted; no point. I'll just say that "pain acceptance" is for people for whom there is no other choice. Anyone who wants to use it for "oh but what if you get addicted" should have to spend a month or two going through it themselves, first; or stfu and hand over the pills.
posted by ook at 5:52 AM on April 6, 2018 [11 favorites]

I'd written a completely different comment trying to be rational and calm. But fuck it. I read the article, and it was a total fluff piece, playing to an audience ready to believe if we poor sods with chronic pain would toughen up, we wouldn't need so many of those bad, bad opiates. As to ACT, I didn't learn anything substantive about it, just that's it's a branch of CBT.

Based on the shallow definitions for ACT given in the article, I'll hazard a guess that a significant percentage of chronic pain sufferers are already there. Most of us will likely have been in therapy, taken anti-depressants for depression as well as pain relief and have no serious expectations of being totally pain free again. In that context, we are trying our damnedest to maintain a modicum of daily functioning, taking joy from the small things we are still able to do and getting through the dull aspects of a normal day. All the while trying to minimise the potential poisons we ingest, inject or infuse to manage our injuries or conditions.

Pretty ACT-like, yeah?

Articles like this only serve to inflame and polarise discussions and give ammunition to those that would have all access to opiates restricted to those within hours of death. And as someone said earlier, rather see us disappear.

I've gone through the details of my condition in a previous similar thread. I've also said before that this is more than a US issue. It's becoming a bigger topic in Australia month by month.

I work with a whole collection of specialists, the core team being my GP, Rheumatologist and Psychologist. The priorities are always 1) Manage and control the underlying disease 2) Manage the remaining symptoms, including pain 3) Manage side-effects and secondary conditions. For me that's 1) Biologics and cortical-steroids 2) cortical-steroids, analgesics and opiates 3) PPI's, MTX and anti-depressants. I spent a long time working with a Pain Management specialist developing a flexible approach to opiates. We got there after a year or so of trying a lot of alternatives. The goal was never to be rid of pain, but to be as functional as possible. I want to add that exercise and sport has been a large part of pain management for me, but sometimes it's down to making sure I complete at least one activity, however small.

The biologic I was on for the most of 2017 lost effectiveness mid year. My disease was no longer controlled, I was on increasingly higher doses of prednisone, I only slightly ticked up my opiates. It was an hellacious six months. I'm on a better path now, returning to a previous biologic that had some benefit. I've tapered the steroids. AND I've ticked down the opiates. Accepting some of the pain while still trying to regain daily functioning.

As a last note, my taking opiates does affect the loved ones I live with. But in a positive way. They allow me to shop for and cook most dinner meals and be a part-time caretaker for a special needs child. Am I still in pain? Fuck yes. Do I accept that as fact and get on with as much as I can? Fuck yes.

/s Oh, my, goodness. ACT works! /s

Don't take opiates away.
posted by michswiss at 6:13 AM on April 6, 2018 [21 favorites]

“Pain acceptance” is a thing that should probably only be discussed by people with the relevant experience. You really don’t get to have an opinion if you have no idea what you’re having an opinion about. At least not without being a huge privileged asshole.
posted by schadenfrau at 6:17 AM on April 6, 2018 [14 favorites]

A couple of comments deleted, please reload the page. This is only going to work if we assume good faith and don't dismiss others' genuinely held concerns out of hand.
posted by goodnewsfortheinsane (staff) at 6:21 AM on April 6, 2018 [1 favorite]

My wife suffers chronic pain and has discovered that while opioids work great for acute pain, they are apparently pretty shitty at managing chronic pain, at least for her. She has to go to the doctor every month and get randomly drug tested to make sure she isn't using marijuana in conjunction with the opioids (which we know empirically works **VERY** well for her) because we're in Texas and marijuana is still felony level criminal here.

She got fed up and decided to see if the hydrocodone was actually doing her much good. She used to take three pills daily, she cut back to two and noticed no real increase in her pain level. She's cutting back to one and seeing if that seems to produce any change. Her plan is that if she finds there's no real benefit from taking the hydrocodone she'll just stop and I'll commit to committing a felony on a regular basis by finding a place to buy her some marijuana (I'm white, she's black, thus I'll be the one committing a felony on the assumption that it'll be easier for me to get away with it and I'll potentially face lower penalties if I do get caught).

From what we've read marijuana by itself is nowhere near as effective at managing pain as marijuana in conjunction with opioids. But Texas won't let us do that and in fact takes active measures to avoid people getting the most effective treatment for their pain. Isn't that nice?

As for "pain acceptance", fuck that noise. She has no interest in just learning how to writhe in agony more quietly for the benefit of those around her. She wants to stop hurting and I don't think that's an unreasonable want.
posted by sotonohito at 6:51 AM on April 6, 2018 [22 favorites]

Bullshit. Humans should not have to live with debilitating pain. We don't let our pets suffer, do we?
I handle my pain w/o narcs, for now, but there's going to come a time...

And if one more "medical professional" tells me to envision one more fucking box to put the pain in, I'm going to lose it.
posted by james33 at 7:28 AM on April 6, 2018 [5 favorites]

When people talk about lives being shortened/deaths from painkiller usage, I wonder if they think about how many people, absent access to pain relief, will commit suicide?

My mom had painful arthritis that incapacitated her, and I'm terrified that I'll get it too. I don't want to hurt. I think it's insane to tell anyone they should be ok with hurting. Having severe, debilitating pain for years is a nightmare I'd gladly take anything to escape.

And people denied access to legal methods will seek out illegal ones, we know this. And I would too, if it was bad enough. And yes, that might kill me, but without any relief there's a good chance I'd decide "fuck it, I'm done" so the real choice there is between maybe a little more life with less pain, or ending it all.

What the hell is wrong with us that we see people hurting, with access to problematic solutions like opioids, and instead of saying "we need to find better solutions for these hurting folks!" we say "pfft, they're just a bunch of junkie weaklings who need to sack up and live in pain."

I literally cannot comprehend it.
posted by emjaybee at 7:49 AM on April 6, 2018 [17 favorites]

My comments concerned people in physiotherapy recovering from injuries, surgeries, degenerative conditions, et cetera.

Do read all the relevant words before going off half-cocked.

And yet of all the subgroups involved, and from which people have spoken up here, you chose the one that allowed you to speak of pain sufferers judgmentally, moralistically, as if their problem was literally that they wanted to go through life with zero pain, those entitled doofuses. (Extra bonus: citing to anonymous third party experts who know the real truth of the experience! Ask any social worker, they'll tell you--! You know, people are saying that--!)

I'm not going off half-cocked here, I'm demonstrating a basic capacity to recognize a bad rhetorical move.
posted by praemunire at 8:00 AM on April 6, 2018 [12 favorites]

Telling people with chronic pain to "accept it" is no different than telling depressed people to "cheer up". It's useless, insulting and betrays a lack of empathy.
posted by tommasz at 8:15 AM on April 6, 2018 [19 favorites]

And here's the rub. They would force her to rotate her meds. They wouldn't let her stay on anything for too long. I figured it was to preserve the efficacy, like she would get too tolerant of one particular kind, but no, she actually had a doctor tell her, "We don't want you getting addicted."
While my father lay dying of cancer, he alternated between asking the nurses to "lean on the morphine bag and push it all in" and worrying that he'd get "hooked on the dope." That bullshit is heavily ingrained.

We don't prescribe narcotics
My previous rheumatologist's practice got bought out by one of those big medical management corporations and that was one of the first things they started saying after the purchase was complete. So I said fine, they don't work for me very much anyway, I'm game to try something new. That something new was Lyrica. After a few months of weight gain and moderate pain reduction, I noticed that all my morning meetings were surprisingly hard to get through. Routine discussions of something at work that we'd talked about the afternoon before, were now confusing and made next to no sense. I even had trouble understanding my own emails from the afternoon before. And suddenly, around lunch my shit started to make sense again. Then it dawned on me, I took my dose in the morning before work and at night before bed. So I stopped taking the morning dose. I was still stupid in the morning. So I stopped taking the evening dose. And I wasn't dumb anymore.

When I told my doctor that it made me stupid, she said that wasn't a side effect. When I asked for something different, that wouldn't make me stupid, she said she could prescribe narcotics. When I said I DON'T want to be stupid. she repeated that she couldn't do anything other than Lyrica.

It's not that there's a problem with chronic pain, it's that there's a problem with the training of doctors to see limited solutions. My new doctor tried a variety of meds and even suggested CBD oil, just to see if it worked. Because she understood, being dumb or in pain isn't viable option.
posted by teleri025 at 8:19 AM on April 6, 2018 [8 favorites]

When I told my doctor that it made me stupid, she said that wasn't a side effect.

WHAT
oh my god YES IT DOES this is a KNOWN THING
RRRRARRRGH
posted by halation at 8:23 AM on April 6, 2018 [12 favorites]

I've seen some hot takes in the comments here about pain management and opioids. They seem to indicate that there's not a crisis of death and destruction caused by opioid addiction and that even if there is, it's not as important as the crisis of chronic pain. Is that a misreadng? (I'm thinking of the 1... 47. list above). I am not a doctor, or public health expert, but I was under the impression that the current opioid "crisis" (panic?) was a direct result of doctors recognizing that chronic pain was undertreated, as well pharma reps pushing new non-addictive opioids that turned out to be extremely addictive. Is that wrong? Or, is it that there's just a tension between pain management and avoiding addiction?
posted by runcibleshaw at 8:24 AM on April 6, 2018

useless

I guess my only pushback on this is from my own experience, wherein literally no treatment I have tried for my chronic pain has done much at all other than the Lyrica that made me drowsier so I could sleep tolerably. in my case I don't really have much choice other than a certain kind of acceptance that allows me to find mental space to survive in the world day to day without collapsing into despair about the futility of my attempts to treat the condition thus far

I understand this requires a very generous interpretation of "acceptance" that leans more towards general psychological self-care and also totally understand that any practice of medical doctors, particularly those specializing in chronic conditions, telling people to "accept" pain is functionally identical to telling those people to "get over it" and all the harmful, dangerous, life-wrecking implications of that.

for me, though, psychological treatment of my feelings about my pain is a necessary component of overall pain management because nothing else works any better, and I empathized deeply with those in the article quoted as struggling with the same kind of mental self-care in a context where just thinking at all can be difficult. seeing that part of it more as processing grief makes sense to me, if you want to think of it that way -- the loss of a former self.

like I agonize daily about no longer being able to run. I used to run almost daily, it was what kept me healthy and fit and treadmill running was by far the best exercise I could do because the passivity of it (either I keep running or I fall over) made it easy to convince myself to keep going. and that's gone permanently for me at this point, and the pain is a constant reminder of that among other things. my wife tends to think of my pain as something that still can or will be "cured" at which point I get back to running, but I just don't think that's particularly viable at this point, and it's not mentally healthy for me to live in that state of presuming the old status quo will magically return with the right combination of drugs and stretching. even on my best days I'm a 3-4 on that pain scale; nothing has changed that and it's taxing to dream of the change at this point, it's kind of like daydreaming about the lottery constantly. acceptance of my current condition as chronic, as permanent, is necessary

I don't know. this is of course a very intensely personal take. and I'm really sensitive to everyone's hard negative reactions to the piece. but as a personally-applied (rather than externally prescribed) additional component to the aggressive and persistent search for pain reduction in any and all forms, I find the concept valuable
posted by Kybard at 8:28 AM on April 6, 2018 [9 favorites]

Is that a misreadng?

yes.

opioid addiction is a severe public health problem. we need to find ways to fix that public health problem that don't worsen another public health problem, which is chronic pain. that pharmaceutical companies lied about the addictive qualities of their products and came up with dosing schedules that increased the likelihood of patients developing addiction is true. but it is also true that many other people are not addicted to opioids and need them to function. it's not that people in the comments somehow don't care about the issue of opioid addiction. it's that they're seeing or living the harms brought about by the shitty way the US is currently trying to address the issue of opioid addiction: by refusing to treat pain adequately or, in some cases, at all. they are rejecting the idea that the only answer is to swing the opioid pendulum in exactly the opposite direction, shrugging off the problems of those left in pain as less-important than OMG THE OPIOID EPIDEMIC.
posted by halation at 8:34 AM on April 6, 2018 [16 favorites]

When I told my doctor that it made me stupid, she said that wasn't a side effect.

WHAT
oh my god YES IT DOES this is a KNOWN THING

When I went with my mom to the doctors to get her off of gabapentin (which was causing cognitive issues and balance problems) and onto something else, they were sort dismissive of the cognitive thing as well and I was like "Uh, I've done the research and what's more, I've known this woman for 40 years and I can tell that she's gotten cognitively slower and forgetful over the past year since you've had her on gabapentin. Try something else -- it's neuropathic pain, you don't even have to think about opioids."

Now she's on amitriptyline AKA Elavil, an older tricyclic antidepressant, which is controlling her nerve pain and she's back to being my smart mom. But if I hadn't gone in there with her and insisted, she'd still be on gabapentin and falling all over the place and forgetting everything and worrying about Parkinsons or alzheimers. It's a great drug for some people, but it didn't work well for my mom. The bioavailability of it works really strangely as well.
posted by elsietheeel at 8:36 AM on April 6, 2018 [13 favorites]

As a child I was under-treated for migraines, and then later when I was a mother of infants and toddlers and my income was necessary to keep a roof over our collective heads I had to be up and a-doing as much as possible even when I had a migraine. I had so many of them there was no way to stop functioning or the babies would have died from diaper rash, and from my childhood I had absorbed the idea that there was neither an effective painkiller, nor was it reasonable to stop functioning.

One technique I learned was to observe my pain: I have a headache. where is the epicentre of the pain? Is it above the eye, to the right? to the left? central? Is it throbbing? searing? If it is pulsing, how fast is it pulsing? How far does it radiate out? Stared at calmly and described, it became more manageble.

One thing I learned was that if I could stop thrashing long enough the pain would abate so that I could hold perfectly still. Motionless in pain was less painful that thrashing in pain, but was a difficult state to reach. I would be sitting there with pins and needles in my legs knowing I needed to change position, but holding off as long as possible.

I discovered pacing - pacing steadily in the dark helped a lot with pain also. As a young teenager, thirteen or fourteen years old, summer nights when the humidity invariably had triggered a migraine I would walk from one am to four am, steadily, somnmbulistically in the darkest places possible, and preferably with my eyes closed. Sometimes it had to be in the house, back and forth up and down the hall. Sometimes it might be outside, perhaps on the bridle path on Montreal mountain. But walking gave relief. It would get me to the point where I could go home and sleep, perhaps from four am to ten am before I would wake to another summer day and begin the cycle again.

Of course there was anxiety when I was in pain, but for me the anxiety was, "How can I keep functioning? How can I keep going? Must keep going!" To the extent that even if I could have gone into a dark room and sat very, very still, I didn't think to do it because there were dishes to wash or other things that I could do to keep the household from sliding into unmanageable chaos.

I definitely kept going too long. If I kept moving, if my stamina was great enough I sometimes wound up on the floor twitching. Once having gone shopping with the entirely family, I ended up on the tarmac of a parking lot unable to control my limbs or sit up, under the front bumper of the family van. Keep going too long and I might end up with echolalia or aphonia. I ended up trying to finger spell in sign language, "emerg". Migraines are a seizure disorder, after all, and if I didn't get a chance to hide in a dark room I could make them look like one.

I am convinced that the ability to face my pain gave me the ability to control my own endorphin production. By going still into the pain it gave me the ability to feel the pain abate. I would end up relaxed in pain. Pain might make me go boneless and weightless, dreamy - not free from pain by any means but drifting in pain, like in a bath of hot water.

The winter I fell on the ice and broke my arm, the pain from the break was equivalent that evening, to the weekly Monday migraine that I got from working an overnight shift every weekend. It was painful but not enough to make me feel I should call in sick to work.

Then one day, they gave me a triptan. Oh boy, did triptans make me stoned. They took the pain away and I couldn't stop giggling and falling on the floor giggling. My delighted children climbed on board and rode me like a horsie while I grinned at them and giggled. The triptan took the pain away and behind the pain I was higher than a monkey on laughing gas.

I had surgery in February. It must have been traumatic to my body, but I ended up enjoying myself enormously. I sat there grinning like an idiot, amused by everything. My poor in-laws who came to take me home! In the wheelchair I cried to be pushed, "Faster! Faster!" like a boisterous five-year-old. Wheeee! The pain killers were the residue of the surgical anesthetic and my own endorphins. The pain from losing both breasts and sixteen lymph nodes ratcheted as high as a two on the pain scale. Huh, ow, yeah, that is a bit uncomfortable...

My mother, bless her, had a different attitude to pain. Her attitude to pain was much closer to panic. She would run for the pain killers. The pain originally was emotional, not physical, and that required her to drink herself unconscious each day. When my father was dying of cancer he didn't want to take painkillers and she was begging him to take the morphine the palliative care nurse had brought. She couldn't bear the thought of his pain even though it meant less morphine for her to steal afterwards. My anxiety was to keep functioning. Her anxiety was to evade the pain.

It seems to me that there is definitely something in this pain acceptance technique. It's basically the one I blundered into, and it works for me. On the other hand, even mentioning it to my mother would ratchet her pain level up. It would frighten her to think about her pain, and being afraid makes the pain worse. It's a non-starter. I'm going to guess that pain acceptance is a form of deliberate disassociation. Anyway, for me, it works.

There's an old north country expression, "Pain must be tholed." It pretty much means "Pain must be experienced," or "Pain must be endured." Of course this aphorism came about in the days when painkillers were not readily available and it was the only technique they had. Pain acceptance may have been the only thing that most people could use to support themselves.

I am guessing that pain acceptance can only work depending on internal physiological factors. I happen to be able to make endorphins easily and have been trained to do so, but if I had not been able to produce them in the first place, I don't think I would have gotten much relief from staring at my pain.

In the comments above people have mentioned doctors who withhold painkillers because they fear and mistrust them, and doctors who prescribe them because they fear and distrust pain. I agree that there will be disapproving puritans who either disbelieve that other people feel pain or who believe that other people deserve to feel pain, and the more the better, and they will use pain acceptance to deprive people of pharmaceutical pain relief. In the States this is especially so. Your insurance system already condemns people to die for spurious reasons. But for me pain acceptance is wonderful survival technique.
posted by Jane the Brown at 8:45 AM on April 6, 2018 [13 favorites]

I'm going to suggest that pain acceptance has a better chance of working when good supportive pharmaceutical strategies are concurrently employed. It also may be that it will only work for people for whom opiates or other drugs do not. But I really believe that pain acceptance is not simply a plot to take opiates away from people who need them. Although it could be readily swiped to be used in such a plot.
posted by Jane the Brown at 8:51 AM on April 6, 2018 [5 favorites]

my wife tends to think of my pain as something that still can or will be "cured" at which point I get back to running, but I just don't think that's particularly viable at this point, and it's not mentally healthy for me to live in that state of presuming the old status quo will magically return with the right combination of drugs and stretching.

god, this is so stressful. and i absolutely get that when people do this it's almost always them trying to be positive and help you have what they perceive as a healthy outlook towards your condition, and not that they're being dismissive to the particular (chronic, progressive, etc) nature of your condition. but it's still like. it makes me want to scream a lot of the time, when people are talking to me about "when you get better" because that day isn't actually coming.

there's no magic pill, or combination of pill and PT, or mystical herb or magic fucking magnetic bracelet that's going to make me "better" or, more importantly, Make Me How I Used To Be. there's just the stuff that can make it less bad, and it doesn't always work exactly the way we're hoping it will, or exactly the same as it did yesterday, or the day before, or that day last week which was GREAT, or the week before which was horrible.

i frequently try to explain that being blithely optimistic to people with chronic health issues is just as unhelpful as catastrophizing and worse case scenario-ing all the time but it's apparently a really hard thing for fully abled people to accept.

it took me a couple of years to stop the "i can do that when i'm finally better" thinking and get into the "i can do that when i am feeling up to it, in that moment" thinking, and i definitely did not get there by someone smugly telling me that i could no longer use pain medication to help me function.
posted by poffin boffin at 9:04 AM on April 6, 2018 [28 favorites]

Actually, I did skim the articles. And here's the thing, accepting your pain IS worthwhile. I tell everyone-especially those with illness - that they MUST see a therapist. Because this shit is TOUGH and you have to find coping mechanisms.

But for many of us it's not as simple as the article said of "I will be in pain sitting at home or I will be in pain going out." The pain is not equal.

I will be MORE sick and MORE in pain by trying to do something. And I have to do something to actually treat that and bring me somewhere functional so I can DO THE THING.

It's like if you sprained an ankle. We've all likely had something like that, right? So you can do your regular stuff, grocery store, cleaning, and it hurts. Maybe you need a bit of Tylenol. But then someone says "Hey, you have go to up and down 30 flights of stairs without anything more than Tylenol on your sprained ankle." Like, clearly that would aggravate your injury! You either shouldn't do it, or if you MUST do it then you need something for the pain, right?

That's the life with chronic illness and pain. My pain gets much worse trying to do anything active or anything outside the house. It is not the same amount of pain/illness as sitting on the sofa.

Again, I have something called POTS. My body literally doesn't circulate my blood properly -among other things- and thus when I try to walk around or stand up my body thinks it's dying and floods itself with adrenaline. Imagine the worst panic attack - heart pounding, headaches, feeling faint, vertigo, severe nausea, pain - just from walking around.

Except I can't breathe through this panic attack. No amount of CBT or breathing exercises will stop it because it is actually, on a base level, not functioning. Nothing will help until I sit or lay down and probably take some meds. I used to get SO ANGRY at myself with the breathing exercise my therapist gave me didn't work. But in fact, my body is doing something outside of my control completely. The switch is broken. (In fact POTS is often misdiagnosed as a panic disorder.) There are levels of pain and illness that are simply NOT manageable without medication.

Again, that is not to say that these things aren't useful. They ARE. There is a lot of learning your new limits, grieving your old life, finding a new balance, trying to be positive with what you CAN do and not what you can't. But the danger is then leaving people with nothing more than mental exercises and criminalising what is for some people the only thing that can get them out of bed. The danger is taking away something without something concrete to fill that space.
posted by Crystalinne at 9:27 AM on April 6, 2018 [14 favorites]

I have chronic pain (hello, endometriosis). I have had Acceptance and Commitment Therapy, and I would highly reccomend it; it made my pain better, and it helped me find ways to manage it and my life around it. A lot of people upthread seem to be jumping to dismissing it as useless or even offensive because it is about learning to live with a negative and changed circumstance. But raging against the circumstance doesn't make it any better - that rage doesn't help chronic pain, in the same way it doesn't help if you have permanently lost function in any other way.

ACT does not make the pain go away. ACT is not about dismissing suffering. I still have pain, I still have fatigue - but I am living my life in a more positive way than I was before. I had ACT as part of treatment by an NHS multidisciplinary pain team, who were excellent. I have still on occasion been prescribed opiates for acute pain - ACT isn't about accepting all pain.
posted by Vortisaur at 9:33 AM on April 6, 2018 [14 favorites]

Actually, thinking a little more about this - I feel like I should just have a default comment along the lines of "just because the healthcare system in the USA is irredeemably broken, it doesn't mean that [approach under discussion] doesn't work, it means that it doesn't work within your irredeemably broken system". This has been relevant to numerous healthcare threads.
posted by Vortisaur at 9:35 AM on April 6, 2018 [9 favorites]

A lot of people upthread seem to be jumping to dismissing it as useless or even offensive because it is about learning to live with a negative and changed circumstance.

My reading of the thread is more like, there's so much moral panic and pearl-clutching going on right now by people who don't understand the medical intervention for pain and are already making it difficult to obtain, that we can see how this is going to be used as a weapon against us instead of as a weapon in our own arsenal against pain and disability.
posted by The Underpants Monster at 9:43 AM on April 6, 2018 [28 favorites]

My comments concerned people in physiotherapy recovering from injuries, surgeries, degenerative conditions, et cetera.

Do read all the relevant words before going off half-cocked.
posted by Construction Concern

Construction Concern -- I caught this distinction, and in fact can very much relate to it, as physio has been very good for me for some things over the years. But neuropathy is neuropathy -- a damage that can't be undone (unlike neuralgia which is pain for which the prognosis is still uncertain).

Anyway, I'm sorry you've caught so much flack in this thread. If nothing else, it illustrates that one of the key symptoms of chronic pain is rage. Born of frustration, born of the pain itself, and entirely rational insofar as it's an acute evocation of what is being felt. I remember reading somewhere that we tend to reserve it for family mostly, and care workers, because they're the ones who more or less have to take it. Though I suppose the relative anonymity of a place like Metafilter also opens up the floodgates.
posted by philip-random at 10:00 AM on April 6, 2018 [2 favorites]

Now she's on amitriptyline AKA Elavil, an older tricyclic antidepressant, which is controlling her nerve pain

Yes to this -- the only med I've found that actually gives me anything but side effects, and even the side effects are comparatively mild.

my wife tends to think of my pain as something that still can or will be "cured"

this has become my personal "Fuck You" trigger (though I often don't speak it out loud). Giving up on a "cure" was a huge turning point in my being able to lead a comparatively functional life (notice I didn't say normal). So nowadays, fewer things are more rage-inducing (other than the pain, of course) than the ignorant optimism of others. You wouldn't tell a amputee that their foot might grow back. Please try to think of neuropathy in the same way.
posted by philip-random at 10:10 AM on April 6, 2018 [9 favorites]

Intriguing take, that people here are mad because of chronic pain, and not because people condescending to those in pain is inherently enraging.
posted by XtinaS at 10:14 AM on April 6, 2018 [18 favorites]

that people here are mad because of chronic pain, and not because people condescending to those in pain is inherently enraging.

I don't think it's either/or. Condescension is inherently enraging, but my pain tends to remove my propriety filters and inspire righteous lashing out.
posted by philip-random at 10:21 AM on April 6, 2018 [2 favorites]

I've yet to experience chronic physical pain, so obviously the decent stance for me to have here is none at all. I don't know the pain these folks feel so I sure as shit am not qualified to tell them what they should or shouldn't do in that circumstance.
posted by GoblinHoney at 10:21 AM on April 6, 2018 [7 favorites]

Pain is so complicated. I am part of a pain management program that used to include opiates, and that program required that I see a therapist. I didn’t think I needed to, but I wasn’t particularly against it.

I went from the bedridden to Able to live a mostly normal life – and a large part of that was due to the therapy. I don’t take opiates for the pain anymore- largely ibuprofen and Tylenol and maybe marijuana when it’s bad bad. And please don’t tell me that means my pain is not very bad, because I know that was my view hearing something similar back in the beginning. I believed there was no way that amount of pain could be managed with anything other than weapons grade narcotics.

Therapy was never formally called pain acceptance, at least not to me, but that’s what it was. Over time, I did learn to accept the pain and manage it. The problem was that I viewed my pain as an emergency- and a lot of people do this, because that’s what acute pain is there for, it’s an emergency to say stop what you’re doing and address the pain. But when it becomes chronic, it’s not helpful anymore. And this is what we don’t understand, why some pain becomes chronic. And we know that for some people, pain signals continue in chronic illness or lingering injuries, and in others, the brain realizes nothing can be done, and ignores the pain signals, so essentally, you no longer feel that pain. But we don’t know why. And the kicker, the part of the reason that pain acceptance is being viewed as important is that we do know that some people with chronic pain are unable to lead normal lives, while others continue to lead normal, active lives. They may have to transition to a new life, but they are doing it and it barely slows them down. We don’t know exactly why people cope differently, but there does seem to be a lot of evidence that’s it has something to do with how the person views pain. Erattacorrige’s example of a well person with pain is one such view. For me, I shifted my viewpoint to chonic pain being common and manageable. That other people do it, so can I.

But why did I fall into one category naturally, and others into the second? One thing I observed some time ago, is that when I’m sick with a cold, I’m out of commission, whereas others can work through it. I’ve noticed that seems to be a pretty normal division, the people who can’t function when sick, and those that can. I see the face of the people that push through, they’re not experiencing less of a cold.

I think it’s learned behavior. Growing up, when I or my sister were sick, it was an emergency. We stayed home and in bed. I was sick at home a lot. As was my sister. We were always at the doctor. I think it had to do with my mother having a childhood where that wasn’t an option, but also a way to compensate for my sister and I being physically and emotionally abused by my alcoholic father. So we learned to curl up and not do anything when feeling slightly ill. (My sister too suffers from letting small illnesses fell her.)

Oh and people with abusive upbringings are significantly more likely to develop chronic pain as adults, so yay! I can’t remember the numbers, but iirc, it’s a large number.

And there’s is they mental health component- I was in a bad marriage and I stuffed so many feelings down, including acknowledging my bad marriage. I didn’t want to see myself as someone that would fall into the same bad marriage as my mother did with my father. My husband didn’t hit me, but was manipulative and abusive in ways I am only just beginning to appreciate. He was an addict- and looking back as an anecdote, every time he was prescribe opiates, he always tried to get more, and had to be cut off more than once. But I was in denial about his addiction too, because he assured me his drinking wasn’t a problem, even as I saw the bottles pile up and him slipping into heavier drinking after I would go to sleep. But I knew, somewhere inside, I knew and I pushed those thoughts away. Until my pain therapy, actually.

That made the pain much worse. I’m not sure I’d quite call it depression (though it was at my lowest), but I was also engaged and happy in other ways, so it was hard for me and even my therapist to fully see until I was climbing out of it.

What got me to a better place, to managing my pain and really pushing to get back to some form of normalcy, was that therapy. I took physical Therapy more seriously, I made myself exercise in bed, I grimaced through pain I would have normally retreated from. I started to have less pain. I incorporated the idea that movement reduces chronic pain, which is counterintuitive to everything my body was telling me. But I also learned I need to do this in moderation, and slowly. I am someone that is on or off by my nature. And it was pushing through a lot of the early pain, and then falling apart that complicated things. Treating my body like it was young and able to overcome with no regards to the work involved in overcoming.

I am not perfect. I still fall into old habits. And I’m ignoring a couple issues I should deal with because I went to so many doctors during that time. I recently had a pretty significant pain flare up, and my first instinct was to crawl in bed to rest. By day 3, the pain was awful as was my mental state. So I walked a couple blocks. Then a couple more. The flareup is still bothering me weeks later. But it’s getting better, even with the occassional setbacks.

But the flip side of all this is that I would not have gotten here without opiates to manage the pain in the beginning. If I didn’t have that when I wasn’t starting physical therapy, I would not have stuck with it. And I chose to stop taking them, after 3 years of continuous use and regular use prior. I’m lucky in that I don’t seem to have the addiction issues my husband did, nor which runs in the family. I tapered against the wishes of my pain md and didn’t tell my therapist because I wanted to make sure I could do it first. I had dependence and I was scared. But I weaned myself down, and I was done. Because it was what was right for me. It’s not right for everyone. Though my experience kinda backs up what a lot of research is saying, opioids are not great for long term pain relief. I know I was having hyperalgesia and it was making my pain worse. My dr didn’t think so, but the pain became more defuse and intense when my dose was wearing off.

The other part of this story is that my recovery is/was costly. Lots of searching for answers, a couple incorrect diagnoses, a heap of mri’s, spinal injections, physical therapy, and then the aforementioned psychotherapy which finally helped me reframed my relation to pain and illness. A program I’m still in. One I’m proud my therapist pointed out that I rarely talk about the pain anymore, where as that used to be what my session was. Because now, pain is just an aside to my life. Before, it was my life. That does not mean I don’t have days of blinding pain where I just have to deal with the pain. But they are just something I deal with as they come. Those days suck, but that’s okay.

But all this treatment is expensive. You know what isn’t? A bottle of pills. It’s so much easier for doctors to try and hand off pain relief via a prescription than manage chronic pain. Even insurance hates paying for physical therapy. I didn’t know that “maintenance” physical therapy was excluded from most plans. Who knew? And even when covered, those copays add up, especially if you’re laid up and out of work from your pain. And physical Therapy only works for some stuff. Migraines ain’t gonna get better with physical therapy.

If anything, pain acceptance can’t gain too much ground as a sole method of treatment- it’s time intensive and expensive. Not that insurance won’t try to get doctors to distill it down to a single page worksheet. And as others have said, it has to be part of a comprehensive pain management program.
posted by [insert clever name here] at 10:28 AM on April 6, 2018 [14 favorites]

> there's no magic pill, or combination of pill and PT, or mystical herb or magic fucking magnetic bracelet that's going to make me "better" or, more importantly, Make Me How I Used To Be

Yeah, I've had to work on "accepting" that I will never be the person I was before my head injury, which included being someone who got a headache maybe once a year. I now have a headache all day, every day. Some days it's very faint, and I think that's as good as it's going to get.
posted by The corpse in the library at 10:31 AM on April 6, 2018 [1 favorite]

I’ve noticed that seems to be a pretty normal division, the people who can’t function when sick, and those that can. I see the face of the people that push through, they’re not experiencing less of a cold.

I think it’s learned behavior.

I'm not so sure. I have this ridiculous high tolerance for pain - it's not that I don't feel pain; I do, but it just doesn't send those alarm bells off in my head saying, “Danger! Emergency! Get the hell out of Dodge!” until it's at a really high level.

And, according to my mother, it's been this way since I was a baby. She tells about taking me to the doctor when I was somewhere between one and two years old and getting chewed out because obviously any child would be non stop screaming and crying for days with an ear infection that bad. It was the same with all my childhood injuries. It's why I always try to get a family member to come with me to the ER or to a new doctor whenever pain is one of the symptoms, because I want a “character witness” to the fact that I absolutely would not be there if the pain was minor.

We have to fill out a form at the pain clinic every month, and one question is, "What is your reasonable pain goal?" with the number scale. So if there are people running around with an unrealistic expectation of zero, at least in my county somebody's keeping track.
posted by The Underpants Monster at 11:19 AM on April 6, 2018 [1 favorite]

When people talk about lives being shortened/deaths from painkiller usage, I wonder if they think about how many people, absent access to pain relief, will commit suicide?
That's what ultimately happened to my late husband. Doctors were useless, so I found painkillers on the street, which I did for 6 years. But when those ran out the last time, he had a mental breakdown after a few days and took his own life.
And today is the 4th wedding anniversary that I've had as a widow. I broke my arm at work 2 weeks ago and required surgery. I cannot tell you how guilty I felt when they were giving me painkillers and how much I wished for a time machine so I could go back to give my husband a little more relief during the times he truly suffered.

Lots of love to all of those who deal with chronic pain and to those who take care of people with chronic pain. It's not easy, and a bunch of people who don't understand what the hell chronic pain entails for patients and caregivers are making things so much worse.
posted by luckynerd at 11:21 AM on April 6, 2018 [24 favorites]

My reading of the thread is more like, there's so much moral panic and pearl-clutching going on right now by people who don't understand the medical intervention for pain and are already making it difficult to obtain, that we can see how this is going to be used as a weapon against us

Another thought came to me. It's kind of like watching people who don't understand what a scientific theory is using the "It's just a theory!" argument to justify teaching creationism in public schools and doing nothing to prevent climate change.
posted by The Underpants Monster at 11:24 AM on April 6, 2018 [9 favorites]

Oh I love you, The Underpants Monster. Same here. As a migraine person, when I shattered my elbow I somehow managed to either manage the pain mentally or go so deeply into shock that it didn’t wear off for HOURS.

(Which was inconvenient because I went from “oh this isn’t so bad, I’m fine” to “OH MY GOD WHAT IS THIS FUCKERY” around 11 pm that night).

So I can live through most of my migraines without meds and I do — I’ve found very few that work on me, so I just don’t bother — which means I’m not running to the doctor for them constantly. Consequently, when I DID get sidelined by a multi day, please-kill-me one, I had to have my husband drive me to the doctor.

I HAVE NEVER HAD MY PAIN TAKEN MORE SERIOUSLY IN MY LIFE.

Anything I would have said (or have said) about the headache pain was automatically taken more seriously when HE said it.

And then I thought back to my second failed elbow surgery, and the (caught by the state for self-prescribing) doctor who said he “didn’t want to be [my] enabler” when I asked him the difference between two pain meds I had been prescribed and how my absolutely unflappable boyfriend’s jaw dropped since he knew I didn’t even bother taking ANY drugs most of the time and I realized DAMN, a lot of this is just sexist nonsense. I have only had my pain taken seriously by one doctor in my life without having a male companion directly in the room, and that is just bullshit and will not be solved by any kind of mindfulness exercise.
posted by bitter-girl.com at 11:34 AM on April 6, 2018 [26 favorites]

I am a woman with chronic pain. I am very grateful for the people in my life who've taught me cognitive pain management just as much as those with the behavioral and medical pieces.
posted by hollyholly at 11:48 AM on April 6, 2018 [5 favorites]

You are not familiar with fibromyalgia. You are familiar with one person who had fibromyalgia, with whom you had an apparently contentious relationship that you blame on narcotics use, and from which you have generalized to “chronic pain sufferers” in the stupidest, most inhuman way possible.

You don’t know what you’re talking about. I mean that literally. Whatever issues you had with this person in your past, kindly deal with them yourself and refrain from projecting them all over people who already suffer more than you can comprehend.

Try to grow your capacity for empathy while you’re at it.

Here's what I've tried to do in this thread:

* I've tried to acknowledge that everyone's pain is their own. I don't understand it and can't.

I have tried to draw two lines, though:

* Opioids/opiates aren't a "cure" to pain in the same way that insulin is a cure for diabetes.
* Opioids/opiates have negative side effects. Just like the pain itself, these side effects impact the people one is close to.

That's all. I haven't been perfect in making that case, but I don't believe I'm alone there.
posted by billjings at 11:48 AM on April 6, 2018 [3 favorites]

I have this ridiculous high tolerance for pain -

Yeah, the turning point for one of my doctors was when I didn't flinch when he was doing some prodding in what should have been a particularly sensitive area. I could feel it and registered it as pain, but nothing worth responding to. As he put it, my ambient pain had clearly reached an "abnormal" level ... and thus he started taking me seriously ...
posted by philip-random at 12:00 PM on April 6, 2018 [2 favorites]

I have written and deleted a ton of comments for this thread over the past day. That article made me so angry that, no matter how I engaged with it, 90% of the comment was expletives. And duplicative: pretty much every person in this thread with chronic pain has said what I wanted to say, usually better with fewer swears.

Anyway, I haven’t seen anyone make these particular observations, so, no duplication, and I’ll try to keep the swears to a minimum.

As a Buddhist with an extensive mindfulness practice, who has endured over 35 years worth of chronic pain, I have had 1000% enough of having CBT and its relatives foisted on me in order to gain access to pain treatment and sleep treatment. I am tired of having my own practice rejected as inadequate and being forced to perform my understanding of CBT to the satisfaction of psych professionals. I am fed up with having to recast every coping strategy I have using the lexicon of CBT (and now ACT, I suspect).

Pain acceptance, seriously? I want to scream: I would be already be dead if I hadn’t mastered pain acceptance by now! And here is this new thing, ACT: another set of boxes I am going to have to check off in order to be eligible, because the medical establishment refuses to acknowledge that I have already done my damned homework? Screw that!

And we know that will 1000% be used:

1) To shame non-conforming pain patients who should of course just try harder to “accept” their pain rather than treat it (mind over matter! think positive! just smiling can improve your mood!);
2) To limit access to pain-relieving, quality-of-life sustaining medications (e.g. gabapentin, opiates, muscle relaxers) to pain patients; and
3) To condemn marginalized groups (who can’t pony up $50 per visit for therapy, office visits, or drug tests) to suffer or go drug dealers to get relief.

None of this is to say that ACT is not a valuable tool in a treatment toolkit! I am legitimately happy for all the folks who have been helped by CBT, DBT, and ACT, particularly those with chronic pain. This is a curse that I would not wish on anyone.

However, this approach also exists in a social and economic context* and it will 100% be used to reinforce the already polarized and morally charged cultural discourse around chronic pain and lead to more suffering. And articles like this don’t help, they just reinforce the toxic subtext.

*For instance, I bet that if there were a guaranteed basic income, accepting pain and diminished ability might be a lot easier for a lot more people.
posted by skye.dancer at 12:27 PM on April 6, 2018 [33 favorites]

The thing is, I think, the first reaction of most people with chronic pain to things like this is visceral panic, and if you're not intimately familiar with chronic pain it's not immediately obvious why. Here's why;

1) We are pretty much all doing this already. There's not much choice. I don't know anyone with chronic pain whose pain is completely controlled by any medication. I don't know anyone with chronic pain who expects ever to have a pain level of zero. At best, the right medication balances bringing your pain down to a level where you can more or less function at least some of the time with not knocking you on your arse with side effects.

And from the other end, I've never once seen a medical professional who didn't suggest that I should try to not mind being in pain. Some of them did it in a compassionate and constructive way, most in a very dismissive one. Particularly if you're a women, it is absolutely standard for any doctor you see to just not believe you, about how much pain you have, about what you're doing to try to manage it, about how you feel about it emotionally. The default assumption is that you are anxious and neurotic, that you haven't tried to manage or work through the pain already, and it is almost impossible to persuade them otherwise.

So presenting the idea that you might try just accepting the pain, that it's possible to just not let it impact your life too much, as if it was something new and radical...isn't helpful. Doctors do this, patients do this. And it can be very difficult for patients to convince people that we do it. So anything that seems to further encourage people to believe that we don't need help to lessen our pain, we just need to learn not to mind it, is frankly kind of frightening. We already have to fight so hard to have our pain treated at all.

2) I think the idea of pain acceptance is actually totally sound. Like mindfulness, CBT, all those things. They don't work for everyone (mindfulness makes me catastrophically worse, for instance), and it's important to acknowledge that they don't, but for many people, they really are helpful. Given that we already know most people with chronic pain are not likely to ever be pain-free, it makes complete sense to try and give people emotional tools to deal with that. But it needs to be part of a programme of pain management, not the first and only thing you offer. And it already is often the first and only thing.
And especially for women, I honestly think this is dangerous. It's already so difficult for most women to convince a doctor to look for a physical cause for any symptom, much less something as subjective and hard to prove as pain. You know how long it takes on average for a woman with my condition to get a diagnosis? Fifteen years. You know how many have been told by at least one doctor that it's stress, anxiety, conversion disorder or otherwise all in their heads? 97%. It is a real danger, and it's hard not to feel that something like this feeds into it.
Honestly, my reaction to this isn't based on thinking it's a bad idea. It's not. Finding ways to psychologically manage chronic pain is a really valuable thing. It's that I know it will be misused. It already is. This stuff is used to dismiss patients that doctors don't want to take seriously - women, POC, poor people, disabled people, people with vague, frustrating, hard-to-treat conditions. That's the problem - not what it is, but how it's misused.
posted by BlueNorther at 12:35 PM on April 6, 2018 [33 favorites]

Um, sorry for the novel. Turns out I Have Thoughts And Feelings about this.
posted by BlueNorther at 12:36 PM on April 6, 2018 [6 favorites]

You know how long it takes on average for a woman with my condition to get a diagnosis? Fifteen years. You know how many have been told by at least one doctor that it's stress, anxiety, conversion disorder or otherwise all in their heads? 97%. It is a real danger, and it's hard not to feel that something like this feeds into it.

I think this is a great point and perhaps might explain some of the differing reactions in this thread, this tendency for doctors to focus immediately on psychological causes/solutions for some patients, and immediately on physical causes/solutions for others, often along gendered lines or by race. It has negative outcomes for everyone. A male acquaintance of mine struggled for three years with an undiagnosable condition, enduring multiple failed treatments, even a surgery, before anyone suggested it could be stress-related or a conversion disorder. A female acquaintance of mine struggled for five years with an undiagnosable condition, and everyone she saw insisted therapy or antidepressants should fix it, and if that didn't work it had to be 'stress' or all-in-her-head, before anyone suggested that wait, no, maybe it was a physical disorder after all.

I myself went from having a doctor flat-out deny I was experiencing symptoms, to grumbling about the 'waste of time' it was ordering testing for me, to scheduling an emergency same-day appointment when the testing came back to get me on medication... to telling me, at a three-month check-in for the first medication we tried, that "no medication is perfect" and I needed to start accepting that I'd continue having symptoms, no matter what. No offer of a different medication, additional treatment, or even an increased dose. Nope, I was being too demanding, expecting too much.

TFA does a very poor job at understanding this well-known dynamic. It doesn't even mention these concerns. For those who have never encountered this dynamic, please consider that many in this thread have, and do, and will continue to struggle with this dynamic.
posted by halation at 1:00 PM on April 6, 2018 [20 favorites]

* Opioids/opiates aren't a "cure" to pain in the same way that insulin is a cure for diabetes.

Insulin doesn't cure diabetes.

Your self-righteous posts make me livid so I will leave that at that.

Fwiw, I don't have chronic pain and don't take any drug. I did have an opiate addicted father who ODed January 2016, so I think I have all the bonafides you'd want.
posted by small_ruminant at 1:15 PM on April 6, 2018 [32 favorites]

I think we need Maias in here.

For sure it helps no one if we get so caught up in stereotyping addicts that we're willing to cause more suffering in the name of preventing addiction.
I'm so sorry, small_ruminant, that just sucks.
posted by BlueNorther at 2:25 PM on April 6, 2018 [6 favorites]

When a problem like the epidemic of opiate-related deaths arises in America, the first thing we do is look around for some group of people to blame it on, however tenuous their causal connection to it might be.

And we almost always seem to choose people to blame that we're mistreating in some way, probably because we already see them as bad in order to assuage guilt we ought to feel (but don't!) about treating them so shabbily in the first place.

The key piece of evidence that this is what we're doing with the opiate epidemic and sufferers of chronic pain, in my opinion, is that in these discussions we never get around to mentioning that there is a strategy that might be much more effective and much less painful.

Namely, making opiate antagonists such as Naloxone widely available to a point of ubiquity so that anyone who overdosed would have a better than even chance of getting Naloxone in time to save their lives -- and the linked article, by the way, makes no mention of Naloxone or any other opioid antagonist.

It wouldn't be that hard to do or that expensive, and we wouldnt have to take opiates away from people with chronic pain, though we probably would have to prevent Big Pharma from pulling a Shkreli with the Xone Pen.
posted by jamjam at 2:59 PM on April 6, 2018 [7 favorites]

Two things that don't seem to be in the discussion. 1) If you want a population with chronic pain, the vets of our current endless war are a good sample set. 2) Chronic pain, like any trauma, can cause PTSD which ads another layer of misery and complication.
posted by Lesser Shrew at 3:18 PM on April 6, 2018 [5 favorites]

Insulin doesn't cure diabetes.

Your self-righteous posts make me livid so I will leave that at that.

I'm sorry for being self righteous. I didn't know I was doing that. I'm not sure I know how to say what I'm trying to say without being self-righteous, either.
posted by billjings at 3:27 PM on April 6, 2018

* Opioids/opiates aren't a "cure" to pain in the same way that insulin is a cure for diabetes.
* Opioids/opiates have negative side effects. Just like the pain itself, these side effects impact the people one is close to.

Your first point is literally a falsehood. Literally.
You second point is true, but it also applies to your valorized insulin, so I'm not sure what the point is meant to imply.

How is that not true? I mean, we can nitpick at the definition of "cure," but we know that diabetics physically cannot produce insulin. This isn't the case for opioids: the body is way out of balance, but constantly being on an opioid doesn't seem to restore that balance to a stable point.

As for the second point, it was said upthread: insulin users don't become inured to insulin and overdose.

When I say that narcotics are not like insulin, I am *not* attacking anyone's right to take them. I *affirm* anyone in pain's right to take any medication that alleviates that pain.
posted by billjings at 3:48 PM on April 6, 2018 [1 favorite]

Namely, making opiate antagonists such as Naloxone widely available to a point of ubiquity so that anyone who overdosed would have a better than even chance of getting Naloxone in time to save their lives -- and the linked article, by the way, makes no mention of Naloxone or any other opioid antagonist.

Weirdly, the Surgeon General agrees with you. This is a really good idea. This is the first time in 15 months that I have praised the action of a member of the Trump administration. I hope everyone here, especially everyone who is so opposed to other people taking opioids, will purchase Naloxone and learn how to use. This is like learning first aid and CPR--it's a way to actually save lives.
posted by hydropsyche at 3:54 PM on April 6, 2018 [6 favorites]

>Your first point is literally a falsehood. Literally.

>>How is that not true?

Diabetes is a failure of the the body to produce or use insulin. Administering exogenous insulin does not cure diabetes. It does relieve many of its symptoms, at least until it doesn't. Sort of like opioids relieve pain, until they don't.
posted by Mental Wimp at 4:25 PM on April 6, 2018 [23 favorites]

I spent about 8 months having very classic gallstone attacks and was told by 5 different doctors/nurse practitioners that they were heartburn/IBS/psychosomatic and that I should treat them with yoga/Tums. When I finally got an ultrasound, my gallbladder was so diseased it had just shriveled up and effectively died.

A few years later I had tooth/jaw pain which steadily worsened over the course of months until eventually no amount of Advil (I mean, like 10) could ease it enough to let me sleep.

I was examined, found to be healthy, and was told it might be anxiety-driven TMJ and I should investigate mouth guards.

Eventually the abcess was so large I could feel it inside my mouth with my tongue. When I pointed it out with a mirror I finally got a root canal.

What else? Oh the symptoms of PCOS that I raised and were dismissed until I actually had an ovarian cyst rupture in the middle of the night (very painful, confirmed later by ultrasound). The foot that doctors told me was probably fine but when I insisted on the X-ray turned out to be, in fact, fractured.

So yeah, I'm leery of "pain acceptance" because in my repeated experience, when I am in pain and feel like something is wrong, something has been wrong, sometimes seriously so. But telling a doctor about it is like a court of freaking law, and the doctor is both your opponent in believing anything is wrong with you, and also the judge who determines whether you will actually get any help.

And this is the experience of women with privilege. College educated, decent insurance, EFL. But I've gotten this shit from doctors in multiple cities, at multiple points in my life, male and female, at practices that cater to middle and upper middle class patients.
posted by mrmurbles at 6:34 PM on April 6, 2018 [36 favorites]

I lived for over two years with chronic pain and was never offered any prescription pain killers at all. I told the doctors that Aleve was making me sick and ibuprofen gave me rebound headaches and they... didn't care, I guess. So, my doctors are already accepting pain! Too bad it's my pain. I wasn't suicidal from the pain but I understood how people could be.
posted by The corpse in the library at 6:48 PM on April 6, 2018 [13 favorites]

So yeah, I'm leery of "pain acceptance" because in my repeated experience, when I am in pain and feel like something is wrong, something has been wrong, sometimes seriously so. But telling a doctor about it is like a court of freaking law, and the doctor is both your opponent in believing anything is wrong with you, and also the judge who determines whether you will actually get any help.

I want this printed on a t-shirt.

I'm a white, educated, skinny woman who isn't bad at advocating for myself and is good at code-switching. And my experience is pretty far along the good end of the spectrum. No one has actually outright accused me of drug seeking, or openly called me neurotic. But I have depression on my files, and as we all know, women once diagnosed with depression (even depression that responded well to treatment and has been in remission for more than a decade) are permanently immune to all physical conditions. And I have been politely, kindly and relentlessly dismissed, from the physio who thought that perhaps I was just finding my pain particularly distressing, and had I thought about increasing my antidepressants, to the consultant who literally refused to look at me throughout the entire appointment, even when I deliberately dislocated my finger to show him how easy it was, and told me he really didn't think I needed to worry, and no, a standing heart rate of 130 bpm didn't need any investigation...that's relatively good treatment.
So yes, I am twitchy about "pain acceptance," because I now live with the perfectly rational fear that one day something will go life threateningly, rather than just life alteringly, wrong with me and I will not be able to convince anyone to investigate or treat me. Because all my past experience, and a lot of other peoples', suggests that will be the case.
posted by BlueNorther at 7:01 PM on April 6, 2018 [25 favorites]

there's so much moral panic and pearl-clutching going on right now by people who don't understand the medical intervention for pain and are already making it difficult to obtain

I think a lot of people don't understand how much has changed in the last 2-3 years around getting a simple prescription for opioids. Many many doctors outright refuse to prescribe for anyone, and those who do are restricted heavily. Even with a sympathetic doctor who _wants_ to treat you, it's not easy to maintain a small dosage.

And I'm an upper-middle-class middle-aged married white man with a fancy-sounding job, so I'm not even facing any other discrimination or issues.

Many/most of us who rely on these drugs to function are legitimately worried we will lose access to them soon. So anything that pushes "alternatives" is inherently suspect to me. And most of us have tried just about everything else (even if you don't want to, doctors basically force you to before they'll give you something you already know works these days). Of course if there's a new effective treatment I'd love that! But I'm super suspicious that its just a way to say "oh hey you don't need this super effective treatment you've been using for over a decade anymore".
posted by thefoxgod at 7:11 PM on April 6, 2018 [22 favorites]

How is that not true? I mean, we can nitpick at the definition of "cure," but we know that diabetics physically cannot produce insulin. This isn't the case for opioids: the body is way out of balance, but constantly being on an opioid doesn't seem to restore that balance to a stable point.

As for the second point, it was said upthread: insulin users don't become inured to insulin and overdose.

When I say that narcotics are not like insulin, I am *not* attacking anyone's right to take them. I *affirm* anyone in pain's right to take any medication that alleviates that pain.

You don't know shit and should really shut up about this. If you're going to keep using diabetes / insulin as your windmill, you should at least try to be accurate about it. Type 2 diabetes was at one point the fastest growing chronic condition in the US. It is currently the fastest growing in China, mainly due to the westernisation of diets in the major cities. This is often a disease associated with a lifestyle and can, in many cases, be managed through diet and exercise. Succumbing to insulin in these cases would be the same moral failing as someone with chronic pain needing medical support.

For those with Type 1 that are insulin dependent, there are all sorts of negative impacts on family and loved ones. Constantly needing to monitor blood sugars, keeping the insulin cool, managing multiple injections daily, needing to modify diets and timing of meals. Possibly needing the installation of a pump.

And as other's have said, insulin isn't a cure and everything isn't suddenly hunky-dory for type 1 folks*

As to your other assertion that taking opiates always has negative impacts on caregivers / loved ones. Bullshit. It sounds like it did for you, and for that you have my sympathy. But don't take your brush and paint it across everyone else. I've already outlined my personal approach. Opiates for me are taking a tablet a couple of times a day. I have never experienced a buzz or a high of any form from my meds. To repeat myself from earlier, the impact if anything is positive as it allows me to contribute to the family.

* I had three direct relatives with type 1 insulin dependent diabetes. All three were burdens on the family at some point. All three died of complications of the diabetes. Stop with your comparisons.
posted by michswiss at 9:06 PM on April 6, 2018 [21 favorites]

One technique I learned was to observe my pain: I have a headache. where is the epicentre of the pain? Is it above the eye, to the right? to the left? central? Is it throbbing? searing? If it is pulsing, how fast is it pulsing? How far does it radiate out? Stared at calmly and described, it became more manageble.

That's basically an ACT technique. ACT is like an inverse CBT, where, instead of trying to change or 'manage' distress, you observe it, let it happen, and find ways to do things that matter to you while distressed. It's enormously helpful for intrusive thoughts, anxiety, and, in my case, some pretty extreme claustrophobia that was interfering with my ability to use public transport.

I can totally understand how the word 'acceptance' is a slap in the face for people experiencing debilitating chronic pain, but it sounds like it's a highly effective therapy modality in addition to the medical care that so many with chronic pain have enormous difficulty receiving.
posted by nerdfish at 12:49 AM on April 7, 2018 [16 favorites]

I agree, nerdfish. It absolutely is a really useful tool in itself - and just in this thread, quite a few people have described using versions of it to good effect. I do myself. It's a big part of the problem with how chronic pain patients tend to get treated, that we're left feeling so anxious and defensive that we react badly to suggestions of stuff like this which actually can be really useful if used properly.
posted by BlueNorther at 7:49 AM on April 7, 2018 [2 favorites]

I've seen some hot takes in the comments here about pain management and opioids. They seem to indicate that there's not a crisis of death and destruction caused by opioid addiction and that even if there is, it's not as important as the crisis of chronic pain.

Nobody here thinks the crisis of addiction-related deaths and destruction is unimportant, but that it's not related to treating chronic pain, except in the sense that lack of treatment often leads to the addiction crisis problems.

If people are starving, and people are rioting in the streets because there's not enough food, the solution is not to further restrict food so they won't have the strength to riot. Handing out tips on "how to work when you're hungry" and the occasional outright Breatharian propaganda tract will not fix the base problem.
posted by ErisLordFreedom at 9:12 AM on April 7, 2018 [19 favorites]

A friend with chronic pain (unofficial fibro) described ACT as enabling her not to make pain worse. The pain is still there, and doesn't get better than that, but at least it doesn't cascade into extra bonus pain. (The effect from ACT was not 'just' to be less unhappy and anxious about the pain, it's less actual bodily pain.) Maybe that framing would make it obvious, to anybody who thinks this can make opioids go away, that it can't?

Away from the pain severity itself, she certainly had to accept that she has this pain and this chronic disease, and that she has to build her life with the fact that it may never go away, but she will say fuck off to an idea that it will never. The fact that her condition is poorly understood, poorly treatable medically, and poorly accommodated socially, is not something to accept. It's also not a coincidence that it's a female-associated condition, and that's not something to accept either. General problem of how to not accept while not shredding yourself.

(Another thing not to accept is lack of medical care. I'm told a whole lot of severe chronic pain is from well-understood and medically treatable conditions, but complex ones that take a lot of attention and continued care -- this anecdotally from a conversation with a hospice nurse (talking about outside of the terminal context). She guessed we need about twenty times the pool of doctors and nurses equipped to handle this kind of treatment. It would also extend people's lives, if that helps.)
posted by away for regrooving at 12:58 AM on April 8, 2018 [5 favorites]

the brief fearful time i had chronic pain, the one thing that the medication worked for and made it survivable was being able to sleep, i think it's important to discuss how important sleep is to being able to cope, mentally, with anything, you become an animal without it, it's not the same, obviously this especially affects carers in addition to people with pain
posted by maiamaia at 3:29 AM on April 8, 2018 [10 favorites]

also, the risk that doctors or insurers might fob you off with 'treatment for hysteria' instead of painkillers is a risk from private healthcare and medical power structures, which risk other things too, not a direct result of mindfulness/whatever, although it does create this option in a 'viable' form for them to fob you off with it
posted by maiamaia at 3:47 AM on April 8, 2018

the brief fearful time i had chronic pain, the one thing that the medication worked for and made it survivable was being able to sleep,

yeah, I've found no meds that deal with my actual pain ... but I did find something that worked for sleep. It doesn't so much make the pain go away as somehow wedge itself between the actual injury and my worry-about-it centers. And at a rather low dose. I don't take it every night, I sometimes go months without it (because side effects), but when I need it, it's huge to know that it's there ... and it works, and thus I can be only slightly crazy.
posted by philip-random at 9:42 AM on April 8, 2018 [1 favorite]

Addiction is it's own kind of hell. There's a reasonable position to take on this issue.

No, it really isn't. Millions of habitual coffee drinkers prove quite well that there is no fundamental issue that makes dependence and addiction terrible. At least with respect to opioids, the problem is that we lump dependency and addiction into one bucket and refuse to treat either one seriously.

Maintenance therapy is a thing and it works even for people who have a strong compulsion to continue their addictive behavior. It isn't a magic bullet, but for most people it gives them enough distance to be able to look at their life clearly and make decisions about the future. Problem is that doctors are highly limited in the number of patients they can treat, making it mathematically impossible for everyone who needs it to get treatment. Nobody who is taking pain pills habitually in excess of their need wants to deal with the shit one has to deal with to get street drugs, but when your choice is between being unbearably ill for a week while dealing with the underlying problem that started you down that road and losing your job before you come out the other side, people make the choice that seems rational in the moment: not grenading their entire life because the DEA got a bug up their ass and scared all the doctors.

And no, most people with chronic pain don't end up addicted precisely because they know opioids are the only tool left in the tool chest for them and are deathly afraid of developing a tolerance and losing what little relief they have. Plus, studies have shown repeatedly over the past 40 years that most people simply don't get addicted even when they do become dependent, pain or no. Were it not so, you'd know, because nearly every high school kid would be a raging addict passed out in the gutter or whatever it is that Puritans think happens when someone develops an addiction.

In reality, people mistake the dysfunction that often leads to drug abuse as a result of the abuse when it really isn't.

Even if there is a kernel of truth somewhere in this idea of living with pain (as if that isn't something every adult doesn't already do to some degree!), it's completely irrelevant at this point. It's actively unhelpful in solving the actual problem we are supposed to be dealing with.
posted by wierdo at 11:24 AM on April 8, 2018 [11 favorites]

"choice between [list of shit that happens to people trying to detox without medical assistance] and buying heroin off the street," even. Chronic sleep deprivation makes it hard to finish sentences, it turns out. ;)

In my view addiction and dependence are just two sides of the same coin. One's circumstances and support system are what determine which presentation a given person will have, to the extent that determinism is a valid thing, anyway. The tools exist to eliminate 90%+ of opioid addiction by the end of the year if we really wanted to do that. The AA model of addiction prevents us from getting there, sometimes quite literally when treatment facilities/groups refuse to accept people on maintenance therapy.

Maybe once we've dealt with the immediate crisis we can circle back to this moralizing about whether people claiming to be in chronic pain are just whiny babies who need to learn to live with it or human beings who don't deserve to be tortured just because we who haven't been there think we know better than them what their immediate needs are.

Anyway, enough rambling on about it. It's not like it makes any difference. The experts responsible for the crisis know all this but persist in their genocide because the facts are irrelevant and the people affected are by definition unworthy of our attention according to the prevailing view.
posted by wierdo at 12:03 PM on April 8, 2018 [3 favorites]

Unfortunately, wierdo, you're right. We pretty much know how to help people with addictions, & in places where it's been tried it's very effective. We just...don't want to do those things, for a whole slew of nasty political and moralistic reasons.
posted by BlueNorther at 4:03 PM on April 8, 2018 [3 favorites]

To be honest, just giving heroin addicts a roof, some heroin and clean works isn't always the worst idea in the world.

Which, yo, is exactly how certain groups of long term heroin users are treated here in the Netherlands. Too dependent and old on heroin to be able to stop using it and it's cheaper to just provide it in a controlled manner rather than have users turn to petty crime to earn enough to buy it themselves.

This in a context where heroin use is almost literally dying out as heroin users' average age keeps going up and few newer, younger users replace those who die of old age.
posted by MartinWisse at 1:11 AM on April 9, 2018 [3 favorites]

> I'm told a whole lot of severe chronic pain is from well-understood and medically treatable conditions, but complex ones that take a lot of attention and continued care

My wonderful physical therapist, who did more for my post-concussion syndrome than any other expert, told me that a lot of PTs and doctors don't want to take on adult concussion patients because the treatment takes so long and the healing is so slow.
posted by The corpse in the library at 9:26 AM on April 9, 2018 [2 favorites]

To be honest, just giving heroin addicts a roof, some heroin and clean works isn't always the worst idea in the world.

Opiates and opioids are way, way less toxic than ethanol. Full stop. Any increased rates of morbidity from the former compared to the latter are strictly a function of how society regulates them. If you've ever observed someone in the late stages of alcohol addiction, you see just how bad it is. Organs are shutting down, neurological function is shot, motor function is debilitated, and a constant influx of the drug is necessary to prevent total collapse. Although there may be some physiological morbidity arising from chronic opioid use (e.g., sleep apnea), problems with opioid addiction are mainly with supply quality and scarcity and, for injection users, safety of administration. I'm not addressing pathologies that may lead to addiction, which are probably the same for both, but that's another topic.

In spite of ethanol's toxicity, there are hundreds of millions who use it regularly throughout their lifetimes without significant morbidity associated with it, and, in fact, there may be some benefit from it. There is no reason to believe the same would be true of opioids were they regulated in the same way.
posted by Mental Wimp at 10:08 AM on April 9, 2018 [6 favorites]

Damn it, "the same would not be true were they regulated..."
posted by Mental Wimp at 12:46 PM on April 9, 2018 [4 favorites]

Just a reminder: the data shows that people getting hooked on opioids from prescriptions and fatally overdosing is more hearsay than fact, and people with chronic pain have been paying the price for misreported info:

"Last month, researchers from the U.S. Centers for Disease Control and Prevention admitted that it had “significantly inflated” the number of deaths linked to prescription opioids in 2016. Rather than the 32,445 overdose deaths attributed to prescription opioids in 2016, they concluded that it was 17,087. The error resulted from prescription opioid-involved deaths being tallied with deaths resulting from illegally manufactured fentanyl.

The CDC is now taking a more conservative approach, the researchers said in a paper published in the American Journal of Public Health. That new approach will “better differentiate deaths involving prescription (pharmaceutically manufactured) opioids from deaths involving illicit opioids (heroin and illegally manufactured fentanyl).” "

posted by a fiendish thingy at 10:57 AM on April 10, 2018 [8 favorites]

So were they only counting fake presses in the "prescription drug" tally or were they also counting illegally imported fentanyl sold as fentanyl? Also, it makes me wonder if they're doing the same thing with carfentanyl and the more recent analogs that the Chinese manufacturers have been making instead so as to attempt plausible deniability.
posted by wierdo at 6:35 PM on April 11, 2018

One thing I don't understand is ...

One thing?

Why is fentanyl getting mixed in with heroin, etc?

To what end?
posted by tilde at 7:19 PM on April 17, 2018

Because it's really cheap to make, and because it's very powerful it's easy to smuggle (because it doesn't take a lot to cut a batch of heroin. Or meth! It's showing up in meth!).
posted by rtha at 9:12 PM on April 17, 2018 [1 favorite]

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