Untreated chronic pain is a human rights issue
January 20, 2019 2:32 PM   Subscribe

The clampdown on opioid prescriptions is hurting pain patients. "A report released last month by Human Rights Watch paints a cautionary and at times harrowing picture of what pain patients are experiencing today. Because of well-intended efforts to address the overdose crisis, many doctors are severely limiting opioid prescriptions. Patients who rely on opioid analgesics are being forcibly weaned off the medication or seeing their prescriptions significantly reduced. Other patients are unable to find doctors willing to treat them at all."

The Human Rights Watch report: “Not Allowed to Be Compassionate” - Chronic Pain, the Overdose Crisis, and Unintended Harms in the US.
However, under international human rights standards, actions taken to combat the overdose epidemic should take the needs of chronic pain patients into account. The government should seek to avoid harming chronic pain patients: some patients still have a legitimate need for these medications, while others who have been on these medications for many years but who may not be benefiting from them should be weaned off them safely and in accordance with best medical practice.

...

The medical community at large recognized that certain key steps were necessary to tackle the overdose crisis: identifying and cracking down on “pill mills” and reducing the use of opioids for less severe pain, particularly for children and adolescents. However, the urgency to tackle the overdose crisis has put pressure on physicians in other potentially negative ways: our interviews with dozens of physicians, mostly from Tennessee and Washington State, found that the atmosphere around prescribing for chronic pain had become so fraught that physicians felt they must avoid opioid analgesics even in cases when it contradicted their view of what would provide the best care for their patients. In some cases, this desire to cut back on opioid prescribing translated to doctors tapering patients off their medications without patient consent, while in others it meant that physicians would no longer accept patients who had a history of needing high-dose opioids.

The consequences to patients, according to Human Rights Watch research, have often been catastrophic. Patients like Maria were often left with debilitating pain that made them incapable of going about their daily lives — simple activities, such as household chores or taking care of others, were suddenly impossible. In many cases, patients suffered extreme anxiety and others even thoughts of suicide, as they questioned whether their lives would ever be worth living in such extreme pain. Others, particularly those who struggled to find a medical provider if their treatment still involved opioid medications, felt betrayed and abandoned by the medical community.
Kate Nicholson's (the author of the LA Times piece) TED Talk: What We Lose When We Undertreat Pain
Kate Nicholson was working as a civil rights attorney for the Justice Department when a surgical error left her unable to sit or stand, largely bedridden, and in severe pain for almost 20 years. Using opioids as an appropriate pain management tool, she continued to function as a high-level federal prosecutor. In this talk, Kate pivots from her inspiring and excruciating story to examine the under-treatment of pain, showing how our approach to opioid abuse by 2.5 million Americans is hurting 50 million people in severe or persistent pain.
CDC Data: Opiod overdose deaths vs. opioid prescribing rates

Douglas MacKinnon on the plight of his niece and other CPPs: Suffering people need opioids: Don't throw out the baby with the bathwater
In our zeal to crack down on abuse of these powerful drugs, we have made it far harder for those who need them to live decent lives to obtain them.

Are there serious concerns with regard to opioids in our nation and their potential overuse? Absolutely. Are prescription opioids turned into street drugs? Of course. Do people who start out taking opioids for perfectly good medical reasons wind up hooked and desperate, and hunting for heroin that might be laced with fentanyl? That certainly happens.

But as we crack down, is there a middle ground which can be found which will afford my niece and millions of other Americans the ability to treat their pain, regain their lives, and not be seen as suspect or even criminal by some? Absolutely.

My niece, as well as a very good friend of mine, have spoken openly about being stigmatized as addicts simply for trying to alleviate their pain. Even when they are able to get their pain medication, they are being informed that their dosage is being cut by half or more per guidelines from the Centers for Disease Control and Prevention.

It's an overreaction which is putting upwards of one-third of the 20 million Americans in chronic pain at great risk.
Fox News article/video: As doctors taper or end opioid prescriptions, many patients driven to despair, suicide
Lawrence’s pain returned with a vengeance. He could barely move or sleep. He soiled his pants, unable to make the bathroom in time, Meredith said.

“It feels like every nerve in my body is on fire,” he told his wife.

Meredith said she and her husband went to their primary care physician and asked for a referral to another pain clinic. They were told it would take a minimum of six weeks.

That was too much for Lawrence. In March, on the day of his next medical appointment, when his painkiller dosage was to be reduced again, he instead went to a nearby park with his wife. And on the very spot where they renewed their wedding vows just two years earlier, they held hands.

He raised a gun to his chest and killed himself.
Follow-up: Frustrated opioid patients speak out: 'I now buy heroin on the street'
Pain patients who shared their frustrations and desperation and, in several cases, questions about whether they could go on much longer included a wide range of mothers, fathers, executives, farmers, maintenance workers, doctors, nurses, law enforcement officials and veterans. All described their experience of being limited by their diseases and pain to being debilitated and bedridden, after being tapered down or denied continued prescription opioids.
Related thread: Chronic pain patients driven to despair
posted by homunculus (117 comments total) 64 users marked this as a favorite
 
And then there's this piece, in the BMJ (British Medical Journal): Prescriber’s narcophobia syndrome: physicians’ disease and patients’ misfortune

Heh.
posted by homunculus at 2:36 PM on January 20 [6 favorites]


I wonder how much lasting damage to advocacy for pain patients and disabled people can be traced to the popular TV show House, which depicted its disabled protagonist with chronic pain as a selfish, irresponsible drug addict. And that's the only semi-positive/sympathetic portrayal of a chronic pain patient I can think of from the last 20 years.
posted by nicebookrack at 2:49 PM on January 20 [32 favorites]


Weirdly House helped me out when it came to my own pain medicine saga- After my wisdom teeth extraction and during my first ankle surgeries I had a really really bad time with hallucinations and my doctors were stumped. But on the show House he starts hallucinating because of the Vicodin and I brought that up with my doctors and they were like: OHHHHHH. They switched me over to percoset from the Vicodin for my second ankle surgery, and the hallucinations stopped. But you're 100% right about how that's like the only chronic pain patient on TV in the last few decades, and... that's not great.
posted by Homo neanderthalensis at 3:19 PM on January 20 [10 favorites]


Thank you so much for this post. It frustrates me to no end when the popular discourse around this, especially from doctors, is this sick logic that goes like this:
1. Some folks are addicts whose addiction is bad but who fake being in pain to get access to the thing they're addicted to.
2. Addiction is bad, therefore these folks should be denied access to that thing.
3. It's really hard to tell who's faking and who's in pain.
4. Addiction is worse than pain. It's more important to curb addiction that to treat pain.
5. Pain can't be treated without addictive substances.
6. Pain can't be treated.
7. Pain can't be distinguished from addiction. Addicts are fakers. Therefore everyone in pain is a faker.
8. As a doctor I don't like the idea that there are no more tools left in my toolkit to treat pain.
9. Therefore, pain isn't real. Nobody is in that much pain that I need to be involved in managing it.


Medicine twitter is AWASH in this bullshit and it's extremely real and extremely stupid and extremely distressing. We all need to be thinking bigger, and thinking better than this.
posted by bleep at 3:37 PM on January 20 [87 favorites]


One time I asked a doctor in twitter why there were so few non-addictive options for treating pain and he basically decided to get defensive and insult me by calling me not a doctor. If I was a doctor why would I be asking you this on twitter. It would be more of an insult to call me a doctor who had no better avenues for getting information.

I think doctors are conflating there not being enough treatment options for the problem not existing, because not being able to treat something is unthinkable. If I can't treat it it must not exist.
posted by bleep at 3:43 PM on January 20 [22 favorites]


It's like the whole "I imagined that the thing that got killed was a chicken because the reality of a baby being killed was too much for me" scene from MASH. I imagined that pain didn't exist anymore because the reality of the harm caused by the #1 treatment option was too much for me to bear.
posted by bleep at 3:47 PM on January 20 [2 favorites]


Finally, I want to know what about our lifestyles is causing all this pain in the first place?? This can't be how we were meant to live.
posted by bleep at 3:56 PM on January 20 [8 favorites]


Clearly the over-prescription of Oxycontin and other prescription opiates led to our current crisis.

Clearly (to me) Oxycontin had enormous addictive potential. (I tried it. It is certainly one of the most reliable chemical euphoria triggers.) I am not clear as to why doctors failed to see this.

Clearly those who have traveled the road to heroin and fentanyl often began their journey with medically prescribed opiates. Often.

Clearly some people with serious pain issues are now being unfairly punished by the road some have taken to illegal opiate abuse.

I am not clear about why cutting off pain relief to those who need it is considered as something which would ameliorate the current crisis in illegal opiate usage.
posted by kozad at 4:03 PM on January 20 [4 favorites]


I think doctors are conflating there not being enough treatment options for the problem not existing, because not being able to treat something is unthinkable. If I can't treat it it must not exist.

A case study in this from within my lifetime is (I might be getting various names wrong, and welcome correction) how there was Chronic Fatigue Syndrome and then I think something else and finally Fibromyalgia. Or maybe CFS and then Fibromyalgia and now it's something new and more official? But at first it was all imaginary, then maybe it might be a thing but most people are making it up, and finally it's a Real Thing.

Although the whole chronic pain / opiate addiction thing is pretty difficult. I remember not too long ago being at the doctor for a sore shoulder looking for a referral for physical therapy and the doctor nearly insisting on writing a Oxy scrip for me, despite me being on record as having bad reactions to opiates. And another time with broken ribs being given a scrip for a medication which was opiate-based even after actually talking to the doctor about not being able to take opiates and can I just take more naproxen than is recommended on the label? "Oh, here take this, you'll be fine", and then a night of fighting black anger and suicidal thoughts after I took my first dose.

Now if I were to go in complaining of back pain, I'd be looked at side-eye even though I've gone to the same doctors for over a decade and have never done med-seeking behavior. I can't take "the good stuff" so it's not really a problem for me, but I can see how others would work the system to feed their addiction. I can also see how those with chronic pain are frustrated finding treatment.

I guess I'm one of the lucky ones in that the things that are lingering and difficult about my body can be removed from sending me pain signals if I learn to move differently and carefully. I've re-studied and adjusted my movements out of several bad joint and back problems. I walked with a cane for a few years but even worked my way beyond that. I know that's not possible for everyone, and I feel for those who aren't as lucky as I am in this respect.
posted by hippybear at 4:04 PM on January 20 [8 favorites]


what about our lifestyles is causing all this pain in the first place??

This is pretty well covered by a book called Dopesick, which came out last year. I'd highly recommend reading it if you're mystified by how opioid addiction became such a huge problem.
posted by palomar at 4:06 PM on January 20 [2 favorites]


This can't be how we were meant to live.

Honestly? life is pain. I'm not being flippant! We're living longer lives than any hominid would in the wild, we are doing repetitive things at jobs that a Australopithecus would never do- but if we look at the neanderthal- we know that pretty much EVERY neanderthal hunted due to the injuries they sustained. Male, female, child neanderthals all participated in the hunt because of all the damn broken and healed bones we find on their bodies. So yeah, this is how we are meant to live and in the wild a hominid would either have taken some wild poppy seeds, or some other medicinal plant and kept on going, or died in agony. What makes us modern is that we don't have to live with it! We can treat it! But so few doctors have anything even remotely akin to empathy anymore, so they don't. It's infuriating!
posted by Homo neanderthalensis at 4:07 PM on January 20 [37 favorites]


Clearly (to me) Oxycontin had enormous addictive potential. (I tried it. It is certainly one of the most reliable chemical euphoria triggers.) I am not clear as to why doctors failed to see this.

The Sackler family literally lied, cheated, and bribed doctors to sell as much OxyContin as possible. Twitter thread: "The Sacklers wanted to sell OxyContin as an *uncontrolled substance*. The INVENTOR of the drug had to persuade them that - while profitable - this would be a dangerous idea"
posted by nicebookrack at 4:08 PM on January 20 [37 favorites]


This is pretty well covered by a book called Dopesick, which came out last year.

Some Netflix documentary I watched last night talked about Dupont and its chemical contaminating the world and I don't doubt that modern lifestyle has done things to the human body which is making it more susceptible to a lot of things today than it was 100-150 years ago.
posted by hippybear at 4:10 PM on January 20


I'm not mystified by how opioid addiction became a problem, I'm mystified by the lack of any interest in treating pain by the medical community is acceptable by anyone.
posted by bleep at 4:10 PM on January 20 [22 favorites]


I don't think we know very well how pain works in the body, really. We know certain things can make us not feel it as much as we would without those substances, but we don't truly understand pain and how it is generated and thus all our treatments for it are just stabbing in the dark with blunt instruments.
posted by hippybear at 4:14 PM on January 20 [4 favorites]



Honestly? life is pain. I'm not being flippant! We're living longer lives than any hominid would in the wild, we are doing repetitive things at jobs that a Australopithecus would never do- but if we look at the neanderthal- we know that pretty much EVERY neanderthal hunted due to the injuries they sustained.


I think on top of this, we're also allowed to be in pretty bad physical shape, so when we get injured, it can be kinda severe. I lost my parents pretty young, and promised I wouldn't go out the way they did, at the age they did, so I've thought a lot about my personal levels of health, nutrition, physical activity as an investment in myself.
posted by alex_skazat at 4:15 PM on January 20 [4 favorites]


> there was Chronic Fatigue Syndrome and then I think something else and finally Fibromyalgia. Or maybe CFS and then Fibromyalgia and now it's something new and more official? But at first it was all imaginary, then maybe it might be a thing but most people are making it up, and finally it's a Real Thing.

Chronic Fatigue Patients Often Feel Disbelieved in ERs
posted by homunculus at 4:18 PM on January 20 [12 favorites]


About one million Americans suffer from chronic fatigue, most of them women.

Well there's your problem right there.
posted by Homo neanderthalensis at 4:26 PM on January 20 [44 favorites]


alex_skazat, while I'm glad you made that commitment to yourself for you health and that it's worked for you, unfortunately similar lines of thinking can often get turned around as more victim-blaming to judge disabled people and people with chronic pain and to dismiss their complaints. Oh, if you were in better shape you wouldn't get hurt; you wouldn't be in pain if you lost some weight; you wouldn't feel sick if you ate more vegetables; have you tried these vegan health smoothies from this exciting Instagram pyramid scheme; have you tried doing yoga for flexibility and meditation; etc. etc.

Nutrition and physical activity are fairly fraught subjects for people with disabilities and/or chronic pain, because they can be painful and difficult if not dangerous to do "right" when you're already sick, they're inevitably the first subjects doctors will focus on to see if you're doing them "right" when you try to get treatment, and as long as you're disabled, you will not being doing diet and exercise "right" to much of society's critical standards. If you were doing them "right" then you wouldn't be disabled or in pain, of course!
posted by nicebookrack at 4:31 PM on January 20 [48 favorites]




Telling people exercise is good for preventing and treating chronic pain is true, in the sense that studies show that exercising more leads to lower pain levels and improved mobility, but I also hate it and wish everyone who said this would be banned from speaking for six months. I have depression and it got a lot better once I started exercising more, but for many people this is useless or even counterproductive advice. Your entire body is screaming at you not to exercise and when you start it probably hurts more and also you evolved to stop doing the thing that hurts and everyone knows when you're injured, you stop using the thing! Except now you're a stupid bad noncompliant patient because you "don't want to" exercise. I'm pretty sure a lot of people with chronic depression/lower back pain dearly wish they could go on a hike with their kids or go kayaking with their spouse, but for all intents and purposes, they can't. Now they get to feel even worse!

Sorry, this whole exercise as medicine thing really grinds my gears.
posted by threementholsandafuneral at 4:40 PM on January 20 [52 favorites]


Clearly the over-prescription of Oxycontin and other prescription opiates led to our current crisis.

I'm not sure that's even so clear, really.

Clearly (to me) Oxycontin had enormous addictive potential. (I tried it. It is certainly one of the most reliable chemical euphoria triggers.) I am not clear as to why doctors failed to see this.

Everyone knows opioids are addictive, but there's been a lot of back-and-forth over the years about how much risk is associated with the medical use of opioids - in the short term or in the long term - and I think it's gonna keep going back and forth.

There are a lot of things that get conflated in the framing of the story of prescriptions and the opioid epidemic. There's a ton of evidence that Purdue was super shady about the marketing of their extended-release opioids, of course, and I'm sure there are real stories of people who were prescribed OxyContin for pain without any idea what they were getting into and ended up overdosing or getting into heroin. I'm not sure that ought to be treated as the most representative story, though, versus for example someone who was introduced to diverted OC as a recreational drug and switched to heroin when pills became prohibitively expensive.
posted by atoxyl at 4:55 PM on January 20 [8 favorites]


> About one million Americans suffer from chronic fatigue, most of them women.

Well there's your problem right there.


Invalid: How the medical establishment undermines, misdiagnoses, and gaslights women

The Pain Isn't In Your Head. And Other Truths Of The Female Experience
posted by homunculus at 4:58 PM on January 20 [26 favorites]


hear, hear threementholsandafuneral. When I was extremely, suicidally depressed I walked for hours every day in the hope that it would help. Ha. I was basically a zombie staggering around and I'm lucky I didn't accidentally on purpose walk into traffic.
posted by kitten magic at 4:58 PM on January 20 [33 favorites]


kitten magic, I did the same thing (and stopped eating) for years to the point I was seriously underweight and had a very low pulse and had doctors tell me how great it was I was so active. The cult of physical activity is real.
posted by threementholsandafuneral at 5:02 PM on January 20 [26 favorites]


Honestly? life is pain. I'm not being flippant! We're living longer lives than any hominid would in the wild, we are doing repetitive things at jobs that a Australopithecus would never do- but if we look at the neanderthal- we know that pretty much EVERY neanderthal hunted due to the injuries they sustained. Male, female, child neanderthals all participated in the hunt because of all the damn broken and healed bones we find on their bodies. So yeah, this is how we are meant to live and in the wild a hominid would either have taken some wild poppy seeds, or some other medicinal plant and kept on going, or died in agony. What makes us modern is that we don't have to live with it! We can treat it! But so few doctors have anything even remotely akin to empathy anymore, so they don't. It's infuriating!

posted by Homo neanderthalensis at 4:07 PM on January 20 [4 favorites −] Favorite added! [!]


What's the next level past eponysterical?
posted by nonasuch at 5:04 PM on January 20 [12 favorites]


I think on top of this, we're also allowed to be in pretty bad physical shape, so when we get injured, it can be kinda severe. I lost my parents pretty young, and promised I wouldn't go out the way they did, at the age they did, so I've thought a lot about my personal levels of health, nutrition, physical activity as an investment in myself.
Counterpoint: my excruciating recurring back injury, which made me miserable periodically for twenty years, started when I hurt myself lifting weights when I was 21. You can live a perfectly moral life, according to the food-and-exercise-moralizers, and still end up with pain.

Honestly, I think the answer to what lifestyle factors cause chronic pain is that most people have been in pain for most of human history. If it's worse now, it's probably because people now survive things that would have killed them prior to modern medicine, and the cost of surviving is sometimes that you have to live with pain. I think that most people's mouths probably hurt most of the time prior to modern dentistry. Pain is not new. The belief that we are entitled to not-terrible lives is new, and it's a good development.
posted by ArbitraryAndCapricious at 5:09 PM on January 20 [43 favorites]


The cult of physical activity is real.

What I wrote was about my personal experiences, and I framed it as such. It wasn't an attack on anyone or a way to pass judgement. I was building on the, "we aren't engineered to live like we are" comment, which I quoted. That's it.

I'm also working with the cards I've been dealt just like everyone else when it comes to the incredible existential void of living, often in mental and physical anguish, only to one day die.
posted by alex_skazat at 5:09 PM on January 20 [7 favorites]


I’m fairly certain that my records have me listed as a drug seeker. Because I often went to the ER for pain. From observable hemorrhaging ovarian cysts. The last time before my surgery, they literally gave me a Tylenol and sent me home. I had my ovaries removed a month later. (My pain management in the hospital and during recovery from the surgery was absolute crap, too.)

I recently went to a geneticist about connective tissue disorder, and while I don’t have Marfan’s or EDS, I do have connective tissue issues. I was dumbfounded when the (female) doctor offered to refer me to a pain management clinic when I talked about my baseline pain level. No one has ever offered that as an option before. I’m not going to go, though, because I’m also tainted by having inpatient rehab on my record. No pain meds for you, wino!

Ironically, I have a paradoxical reaction to opioids. They keep me awake and I actually get really productive when I take them. They help the pain, but don’t get me high.
posted by Ruki at 5:10 PM on January 20 [5 favorites]


What role can cannabis play in easing pain, especially as the substance is gradually decriminalized?
posted by doctornemo at 5:13 PM on January 20 [2 favorites]


"Screaming pain so bad that we can't get out of bed" isn't something I think most societies have been plagued with this much, no?
posted by bleep at 5:14 PM on January 20 [4 favorites]


the incredible existential void of living, often in mental and physical anguish, only to one day die

My first instinct was to do a MetaFilter: with this, but then I realized I just needed to QFMFT.
posted by hippybear at 5:14 PM on January 20 [2 favorites]


Cannabis helps with my pain, probably more the CBT compounds than the THC. But this is just anecdote and not data.
posted by hippybear at 5:15 PM on January 20 [4 favorites]


I've told this same story time and again. I have several bad spots in my neck. They cause me pain all the time. The Doctors told me that I could have a fusion, or a pig bone replacement, but they also told me that I might never get any relief for the damage and pain. My Doctor told me the operation was questionable at best. It was also quite expensive, even with my insurance. I weighed the risk / benefits and the costs as well. I opted to manage the pain with opiates. I was on a pain management regimen for over 10 years. It worked out like this. 1 Doctors visit every 6 months $20 Copay. Prescription cost were $8 x2 = $16 That makes it $196 + $20 = $216 Every six months. Now we skip forward to the more modern times, the fight the addiction times and we get the following (since the laws changed) Doctors visit required every time you need a prescription filled, so it goes up to 6 x 20 = $120. Now blood test are required each month, to ensure I am not overdosing on opiates. That cost goes up to $90 for my part of the lab work, so we're looking at 6 x 90 $540 and then we have the drug cost (which have now gone up also) 2 x $10 x 6 = $120. So now we're at $120 + $540 + $120 = $780 every 6 months. They've managed to legislate me into extra cost of $564 every 6 months / $1128 a year. Now comes the bad part. I lost my job, and my insurance. I couldn't afford those cost. I came off the opiates cold turkey. That was not fun at all, not after being on them for all those years. I never took more than 4 a day. I was so scared of being a junkie. 4 a day no more no less. Skip forward and I am employed again. I have insurance. I still have this pain in my neck. All day, every day. It's like having a migraine that never goes away. Now I cannot get a Doctor to work with me like my old Doctor. I can't even get a pain management Doctor to work with me. I have so many drug allergies, it is difficult to get a pain regimen that works and is affordable. So I spend my days now in constant pain. Like a dull enemy that is wrapped around my shoulders and I can't get rid of him. Thanks to a bunch of junkies, and greedy pharma-corps folks, the legal folks are screwed by the illegal junkies. All this added legislation has done is hamstring the folks that do stuff legally.
posted by CygnusXII at 5:15 PM on January 20 [23 favorites]


I had the worst flare up of my chronic ankle pain (after 7 ankle surgeries) last night largely *because* I am on androgens now and hitting the gym. Couple the gym with all the work I do in the garden and for my family and honestly? I'm in the best shape of my life. Still lay awake at night last night wondering if the dilaudid from my last surgery was still good and not expired. So unfortunately being in shape- not a bulwark against pain. I'm still gonna hit the gym- but maybe i'll try to stretch more. There is absolutely no winning sometimes.
posted by Homo neanderthalensis at 5:17 PM on January 20 [1 favorite]


Cannabis helps with my pain, probably more the CBT compounds than the THC.

High levels of THC can actually exacerbate pain in many people. Strains favored for pain relief feature high CBD content.
posted by Thorzdad at 5:18 PM on January 20 [4 favorites]


Thanks to a bunch of junkies

ever stop to think how many of these "junkies" you deride have a similar story to yours?
posted by Homo neanderthalensis at 5:19 PM on January 20 [46 favorites]


[Hey everyone, this is a tense topic, let's try to avoid stigmatizing language and personal attacks on other posters.]
posted by Eyebrows McGee (staff) at 5:20 PM on January 20 [12 favorites]




Cannabis works really well for some people, and should probably be the first thing some people try. But it doesn’t work for everyone. Some people literally need high dose opioids, and they are essentially being tortured in service of...idek, honestly. Fucking nonsense.
posted by schadenfrau at 5:31 PM on January 20 [13 favorites]



"Screaming pain so bad that we can't get out of bed" isn't something I think most societies have been plagued with this much, no?


I have been listening to a podcast about the Salem Witch Trials, and one of the first women accused was on the outs from the community (and thus an easy target) because she'd been bedridden with a vague illness for over a year and thus had been absent from church.

If you read accounts of every day life from history, you'll find a lot of people either well-off enough to be dealing with their pain by taking to their beds for months or years or, for those for whom that was not an option, just grinding themselves down to nubs and frequently drinking themselves into a stupor. For a long time, alcohol was the only reliable treatment for pain, and the absolutely ludicrous historical accounts of how much people were drinking bears that out. I mean, for one thing, everyone had mouths full of infected, rotting teeth.
posted by soren_lorensen at 5:59 PM on January 20 [65 favorites]


I talked to my doctor and he says it's the increased addiction but mainly the DEA.

Simply put, doctors are very reluctant to write scripts unless 'needed'.

So, folks go to heroin like my best friend and die of a fentanyl o.d.

If the government were serious, the budget for treatment would be higher but noooooo!

It's like it's one little piece of genocide we watch gather in the pot.

Oh and this piece of flim-flam


"Lastly, he believes that physicians can work to shape the way the rest of the country views addiction by actually speaking about it and treating it as a chronic illness, not as a moral failing."
posted by clavdivs at 6:05 PM on January 20 [5 favorites]


Oscillate wildly between extremes with moral judgements thrown in seems like the American way I guess.
posted by ovvl at 6:13 PM on January 20 [12 favorites]


For a long time, alcohol was the only reliable treatment for pain, and the absolutely ludicrous historical accounts of how much people were drinking bears that out.
And then in the nineteenth century, when opium became available, laudanum (tincture of opium) was freely available in Britain and the US and was cheaper than alcohol. If you were a poor person who needed to work or your children would starve, you could walk into your nearest shop, buy some nice cheap tincture of opium, and proceed on with your day, hopefully with your pain numbed enough to do your job.

There really weren't any good old days.
posted by ArbitraryAndCapricious at 6:15 PM on January 20 [39 favorites]


"Screaming pain so bad that we can't get out of bed" isn't something I think most societies have been plagued with this much, no?

Uhh, perhaps, if you take into account all the people who died in excruciating agony from whatever, that in this modern age has just been reduced to keeping us "Screaming pain so bad that we can't get out of bed". Or maybe in the "societies weren't 'plagued' by anything, because if you couldn't go to work because of an injury and you and your entire family starved to death, that's not society's problem" sense as well.
posted by sideshow at 6:53 PM on January 20 [14 favorites]


Clearly those who have traveled the road to heroin and fentanyl often began their journey with medically prescribed opiates. Often.

You'd be surprised at how little solid data there is on this. Obviously it's the preferred narrative, because it separates largely white opiate addicts from those people, all the addicts of the prior generations who were derided and condemned, practically hunted. But the lack of data on this makes it hard to understand how risky it is to prescribe opiates, and who are high-risk groups to prescribe to, and what supports could be provided to reduce the risk. It's maddening.

Meanwhile, I have talked to people directly involved in the regulatory response to the opiate problem who literally think dependence and addiction are the same thing. It's exhausting.
posted by praemunire at 6:56 PM on January 20 [42 favorites]


My pain management in the hospital and during recovery from the surgery was absolute crap, too.

I went to the ER a couple of years ago with what turned out to be a small bowel obstruction. It was my first experience with that level of pain. I naively thought being surrounded by medical professionals meant someone would take care of that. I should have known better, but experiencing it myself was a real change in perspective. I cannot imagine what I'd do if I chronically had pain like that. Addiction would be a small price to pay to relieve it.
posted by Mavri at 7:10 PM on January 20 [16 favorites]


Another example of the medical system utterly corrupted by the pharmaceutical industry.
posted by Jode at 7:13 PM on January 20 [3 favorites]


I attended a presentation by someone who was was researching pain dismissal. It included some qualitative survey data, and she shared one of her favorite responses to a question asking how people with chronic pain feel when people dismiss their pain: "Fuck you, I'm in pain."

I want that on a t-shirt. The proceeds can fund research into how to fucking treat chronic pain patients like human beings.
posted by brook horse at 7:32 PM on January 20 [15 favorites]


"Screaming pain so bad that we can't get out of bed" isn't something I think most societies have been plagued with this much, no?"

"If you read accounts of every day life from history, you'll find a lot of people either well-off enough to be dealing with their pain by taking to their beds for months or years or, for those for whom that was not an option, just grinding themselves down to nubs and frequently drinking themselves into a stupor. For a long time, alcohol was the only reliable treatment for pain..."

Historical example: Isabella Clark Macdonald (1809 – 1857), the wife of Canada's first Prime Minister Sir John A. MacDonald, was chronically ill for 12 years until she died at the age of 48. She was frequently so tired and in so much pain that she was unable to get out of bed. Doctors prescribed her laudanum - a mixture of wine, opiates & spices.

Laudanum was an immensely popular drug, widely prescribed, from the 1660s on through to the early 1900s.
posted by Secret Sparrow at 8:09 PM on January 20 [6 favorites]


7. Pain can't be distinguished from addiction. Addicts are fakers. Therefore everyone in pain is a faker.

And that attitude leads to misdiagnoses which can put patients in danger: Pain Deniers Endangering Lives
posted by homunculus at 8:15 PM on January 20 [6 favorites]


Meanwhile, I have talked to people directly involved in the regulatory response to the opiate problem who literally think dependence and addiction are the same thing. It's exhausting.

I think there are good reasons to maintain the ability to use those two terms to mean different things, but I want to point out that I also think the distinction between those terms is something else that has been leveraged to separate "good" from "bad" drug addicts.
posted by atoxyl at 8:19 PM on January 20 [3 favorites]


If you read accounts of every day life from history, you'll find a lot of people either well-off enough to be dealing with their pain by taking to their beds for months or years or, for those for whom that was not an option, just grinding themselves down to nubs and frequently drinking themselves into a stupor.

In stories published before modern medicine, go back and look at every lazy/deadbeat/crazy/irresponsible character and ask yourself what might have been wrong with the real person the author was thinking of when they wrote that character, and suddenly you'll see a lot of people who probably had things we'd recognize. The mother who had her young daughter basically running the household, the lazy servant who is always trying to find places to sleep instead of doing the work, all these tropes came from somewhere, but these people were usually ignored by history and used as either comic relief or petty adversaries in fiction.

And I think that's a big part of why, now, people who present with these same characteristics get so widely dismissed by the medical profession. The actual history bit, I suspect, matters less than the fact that our cultural narrative leads "laziness" and "complaining" to be some of the worst-perceived character traits.
posted by Sequence at 8:29 PM on January 20 [46 favorites]


I'm waiting at a pharmacy for some new pain meds while deciding if this is a headache or a migraine starting up. Pain is not all the same flavour, like wine is not whiskey but it still destroys. There's the slow grind of just manageable pain that fills your brain up and takes away the color of the world. I prefer intense agonizing pain because it can't be dismissed. When you're clammy and retching, at least you get meds.

Today's doctor told me I was too coherent to consider changing meds. I actually like him so far, and they are reasonable about pain meds, but the idea that you have to perform an internal state to their standard (brainfog or some level of tiredness or pain) is so irritating. Just accept that I am not lying about my own stupidity and pain.

I hoard meds too after running out once during a doctor going on holiday. Six weeks without meds would be - several ER trips. And I'm easy. Just awful. I would drink smallbeer all day as an alternative, anything. That poor man.
posted by dorothyisunderwood at 8:30 PM on January 20 [14 favorites]


but the idea that you have to perform an internal state to their standard (brainfog or some level of tiredness or pain) is so irritating.

especially because they don't usually tell you which one they like best, so you have to guess.

for years and years I thought that crying would play really badly in a doctor's office and stoicism was the way to go to earn their respect and possibly, subsequently, their professional care. but when I'm in enough pain that I have to work hard not to cry, I can't talk. like literally can't, it's subjectively a lot like the aphasia I get with migraines. also, when I'm unable to keep from crying, I can't talk intelligibly. this is terrific for communicating with doctors, they absolutely love it

[ they do not love it]
posted by queenofbithynia at 9:36 PM on January 20 [13 favorites]


I suffer from chronic, debilitating migraines and the only medication that currently works is rationed by my insurance so that I do this “how bad is the headache likely to be” calculus before taking any. Which means there are times when I miscalculate and I take it too late to be any use and turn into a speechless vomiting zombie. And this drug isn’t even addictive. My new neurologist finally offered me Botox injections and I am starting those next month with optimism. I live with Bipolar too, and I would absolutely rather deal with the mood swings over the migraines. Chronic pain just grinds you down.
posted by Biblio at 10:09 PM on January 20 [8 favorites]


Screaming pain so bad that we can't get out of bed" isn't something I think most societies have been plagued with this much, no?

Consider the first nearly complete Neanderthal skeleton, La Chapelle-aux-Saints, the one that gave people a misguided view of Neanderthals. That individual suffered the following disabilities:
...extreme tooth loss, chronic gum disease, temporomandibular joint arthritis, severe osteoarthritis in his lower cervical and upper thoracic vertebrae and degeneration of vertebrae. He had osteoarthritis in both shoulder joints, a rib fracture, degeneration in a right foot joint and severe chronic degeneration osteomyelitis in his left hip.


This meant he required the following care:
direct support including fever management, help with hygiene, repositioning and manipulation during flare-ups of infection, and severe pain alongside accommodation such as providing suitable soft food and ensuring he wasn’t left behind when camp moved. His spine and upper body’s disabilities meant he couldn’t have been flexible and strong enough to help hunt or transport items while his lower body, the diseased left hip, worst of his conditions, would have caused significant pain and issues when using his left leg for weight-bearing, balance and mobility.


He lived into his 40s.

And he's not the only one. There's evidence throughout prehistory of people being disabled, of living with obvious pain and infirmity, and being cared for by loved ones and the culture at large. It is part of the human condition.
posted by happyroach at 10:30 PM on January 20 [27 favorites]


The entirely of the fentanyl problem is due to this idiotic crackdown. It would have been possible to expand access to maintenance therapy. Instead, we left the dumb patient limits in place while the need for access to maintenance skyrocketed, leaving people the choice between weeks of withdrawal symptoms leaving them unable to conduct their own self care, much less work and finding what they could on the street.

Even assuming it was necessary in the first place, the transition was handled as poorly as possible, largely at the behest of the entirely out of control DEA.

Combine that with states literally prosecuting doctors for patients overdosing or otherwise abusing their medication and it's no damn wonder we are where we are. Yes, sometimes people end up taking what seem like massive amounts of opioids after years and years of treatment. Blame human physiology, not doctors. (In the main. There were a few doctors knowingly prescribing to people for diversion, but the vast majority of prosecutions were not for such behavior.)

Basically, in any situation that can be affected by our drug laws, you can be fairly certain they are at least partly responsible for the problem. Thus it has been since 1968 and will continue to be until we drop the puritanism and treat addiction as the disease that it is. With that done, there's no huge risk even if a patient does end up going beyond dependence. With proper and caring treatment rather than cutting patients off, it's eminently treatable in cases where the medicine is causing more problems than the underlying pain.
posted by wierdo at 11:04 PM on January 20 [8 favorites]


Consider the first nearly complete Neanderthal skeleton, La Chapelle-aux-Saints, the one that gave people a misguided view of Neanderthals.

Is that the one that was thought to be the remains of a "Rickety Cossack?"
posted by Homo neanderthalensis at 11:38 PM on January 20 [3 favorites]


This really happened: once, while I was staying with my extremely sober, good Catholic-type aunt, she developed what turned out to be kidney stones. After a long night in the ER, she returned and said this: “I don’t understand why people take drugs. All they do is take the pain away.”

Why, yes.
posted by schadenfrau at 12:13 AM on January 21 [26 favorites]


196 + $20 = $216 Every six months. Now we skip forward to the more modern times, the fight the addiction times and we get the following (since the laws changed) Doctors visit required every time you need a prescription filled, so it goes up to 6 x 20 = $120. Now blood test are required each month, to ensure I am not overdosing on opiates. That cost goes up to $90 for my part of the lab work, so we're looking at 6 x 90 $540 and then we have the drug cost (which have now gone up also) 2 x $10 x 6 = $120 ....... [my emphasis]

It's hard to be absolutely certain, CygnusXII, but I think those blood tests are meant to ensure you are actually taking those opiates and not selling them on to someone else.
posted by jamjam at 1:09 AM on January 21 [3 favorites]


Receiving maternity care through the NHS has been a fascinating experience, not only because I truly get to experience the NHS at its finest, but also because of the role midwives play in coordinating care for patients. I get the sense that many NHS midwives are experts in spotting when their patients are downplaying their pain. Case in point - I was having chest pain and difficulty breathing starting in my second trimester. I mentioned it offhand in a checkup in a lol pregnancy is weird way, and my midwife immediately zeroed in on that. Long story short, she sent me for an ECG that came back abnormal and I'm now seeing a cardiologist and OB/GYN alongside my midwife.

I'm okay, the baby is okay, and I'm getting great care, but none of that would have happened if my midwife hadn't really pressed me about the pain I was experiencing and made a very clear, urgent plan to investigate and treat. It made me realise how much pain I've downplayed or glossed over around medical practitioners because I just didn't expect I'd be believed and I didn't expect anything would happen. To be taken seriously by someone who is in a position to do something is truly extraordinary.
posted by nerdfish at 3:06 AM on January 21 [16 favorites]


jamjam That makes it even worse. It assumed I was a drug dealer, and makes me pay through the nose to prove I was not one, to the tune of hundreds of dollars a year. My Doc told me that the test were to ensure my liver was not getting damaged by the opiates... Who knows, maybe that was what was going on, or not. I do not know, since I am not a Doc myself.
posted by CygnusXII at 4:12 AM on January 21 [4 favorites]


My brother suffers (in the strongest sense of the word) from massive chronic back pain. He is on disability but is still subject to the same dosage reductions already described. He copes by drinking. A lot. It is not fun to talk to him on the phone.
posted by JanetLand at 5:07 AM on January 21 [3 favorites]


I had a complicated surgery that, secondary to the actual surgery, required removing massive scar tissue off of a few nerves which has resulted in me taking gabapentin as part of recovery. This surgery was necessary to me as AN ATHLETE. I also work a rather senior corporate job while working on a degree and teaching on the side. By any other measure, I am a good citizen, spouse and worker.

However, when I go to the damn pharmacy to get a gabapentin refill - which by the way, is helping me get feeling back in my right side while letting me resume life as noted - I feel nothing short of being a criminal.

The latest was that my doctor and pharmacist had no problem dispensing my meds but because my insurance says it's too early, I have to go an entire week with NO MEDS or pay out of pocket which I ended up doing. Apparently without telling any of us, my insurance made a new rule for 2019 saying they can only dispense a certain amount and because my prescription is for a different amount means they just don't dispense by default because of the opioid crisis. It is beyond frustrating.

Essentially, I feel as a patient that America has just shrugged and passed the hassle and fall out of people with a differnent set of issues misusing drugs that I need onto me to deal with. There has to be a better way than coming home from the pharmacy in tears every few weeks. I am temporarily a pain patient and I don't have any answers about addiction, and I also do not feel qualified to do so but I do know someone is not doing their job. Good oversight puts guard rails in place and when done right, balances the administrative burden and legalities with responsible use.
posted by floweredfish at 5:25 AM on January 21 [7 favorites]


Another huge reason it seems like we hear about people in chronic pain way, way, way more than we ever did before is right in front of you - internet access. Think of legions of housebound, hidden people who don't get talked about, much less heard from. Now there's Twitter. It took me a while in the disability sphere to work this out.
posted by lokta at 5:35 AM on January 21 [28 favorites]






First, the danger of dying from opioids, unlike the danger of dying in a car crash, can be readily avoided by most people.
Yeah, no, fuck this sober, rational analysis by the good people at Reason.
posted by Etrigan at 8:51 AM on January 21 [2 favorites]


By any other measure, I am a good citizen, spouse and worker.

I know you aren't saying or implying anything to the contrary, but: bad citizens, bad spouses and unmarried people, bad workers and the unemployed, and criminals all deserve to have their prescriptions filled and their pain treated.
posted by queenofbithynia at 9:38 AM on January 21 [29 favorites]


My loved one who had her medication taken away a year ago has just recently had it restored. It's like a miracle seeing her slowly come back to life. It gives me hope.
posted by The Underpants Monster at 9:44 AM on January 21 [3 favorites]


I have chronic pain from rheumatoid arthritis. I am also an attorney who works in the disability field, which means many of my clients also live with chronic pain. I've seen a lot of ugly stuff around this - people who spend at least one night a week in the ER begging for pain relief because they don't have the money to get in to a regular doctor, people buying on the street, people taking up heroin after the governor cut the Medicaid coverage for opiates so that only people with terminal illnesses could get them. The governor was then surprised when the heroin trade exploded, because it apparently didn't occur to him that people weren't going to subscribe to his version of "morality" and just quietly be in pain because he thought they should. I've gotten to see how much about who gets care is about class and the larger perceptions around whose pain matters. I've gotten to see addicts get screwed over and refused care, because any history obviously means they can't be in pain, right? So wrong.

For my own history, I've learned to go to the doctor dressed reasonably nice - business casual, show I'm not wasting their time. I've learned how to talk about what I'm dealing with, and to exploit the privileges available to me as a white professional, something I feel really gross about but also something I will continue doing because I need opiates to function, to stay in the workforce, to be able to sleep and take care of myself and my cats. I present as harmlessly as I can, as a slightly anxious patient with a bunch of weird stuff going on. When I needed to go up to five pills a day, I cried in the office until they agreed to it. I'm not different from my clients, from the people I work with every day who can't get pain relief because of their race, class status, and criminal histories. I have privilege they don't, and that's all.

This fall my pain clinic decided to take action against the opioid crisis by encouraging all of their patients to register for our state's medical marijuana program, something I'd been trying to convince them of since moving back here. This has been really positive for me, and apparently is letting a number of people reduce their opioid intake. For me, I'm sleeping better, better able to deal with my nausea, and having an easier time in the evenings.

Every time I read anything about the "opioid crisis" all I think about is everyone who is pushing through pain to keep working, to keep functioning, to stay housed and keep their kids, and how much easier it would be on all of us if pain care were taken more seriously.
posted by bile and syntax at 10:04 AM on January 21 [30 favorites]


As a person who has endured chronic pain for most of my life, I have to struggle not to just scream in rage/frustration/outrage about the recent restriction of opiates in the U.S. However, I do want to bring up one rarely mentioned thing about medical cannabis as an alternative (or complement). It can definitely improve quality of life/be a game-changer for many people, but the regulations around it can leave you trapped in your home state/province/country. You cannot (reliably, legally) travel with it. As a result, even if you manage to establish a stable pain relief program that incorporates cannabis, you are S.O.L. if you have to travel outside a legal jurisdiction for work or family obligations, or recreation. That's one upside to opiates that doesn't get enough mention, imo--geographic mobility. Yet another thing that I'm enraged and bitter about. Sorry, bad pain day. My apologies.
posted by skye.dancer at 10:42 AM on January 21 [15 favorites]


I've talked about my endometriosis a lot. I've had two surgeries. One thing I haven't talked about because it still haunts me is what waking up from major surgery was like as a pain patient in 2018.

I woke up crying in pain. I have a very high pain tolerance, and I was hysterical, sobbing. My mother turned white as a sheet and my partner had to tend to me instead. No one could determine what pain relief they were allowed to give me, even though they had my current med list and had even coordinated with my pain doctor prior to the surgery. It took what felt like forever and what my partner says was about 30 minutes of this before they were finally allowed to give me some gabapentin, which helped a little but I was still wrung out. While this is going on, they filled my bladder with saline and had me getting up to sit on the toilet because I wasn't allowed to leave (! how could they think of discharging me in that state!) until I peed it out.

This is after 4+ years of being seen by a pain management doctor, having nerve blocks, taking drug tests every 3 months to prove I was taking what I was supposed to and nothing else, submitting to med checks, being on buprenorphine pain patches and tramadol, not anything more than Schedule 3 narcotics. I was the model pain patient. And yet I was left to go through hell because of the usual bureaucracy -- which I had done everything right to mitigate BEFORE surgery -- plus the added hysteria over opioids.

I'm still in pain, though it has gotten better. I'm still in pain management. Now my insurance is refusing to pay for my patches until I try two other things, so I'm paying out of pocket. I'm trying to taper down but I had another flare in December and I don't have a choice if I want to keep working. I try to just keep going.
posted by fiercecupcake at 11:57 AM on January 21 [9 favorites]


(I can't even get into what experiences I've had in pain doctor's offices, because I don't want to cry at work. You can do everything "right" and still be treated like a criminal and a time-waster. And heaven help those who aren't perceived as "good patients.")
posted by fiercecupcake at 11:59 AM on January 21 [16 favorites]


When You Live in a Constant State of Pain
Chronic pain is the most complex and difficult feeling to describe. It is my constant feeling. It is the same as asking someone to describe how breathing and blinking feels. It is less of a feeling, it is more of a state of existing.

Every time I go to the doctor or emergency room, they ask me to rate my pain on a scale of one to 10 and describe it. It is almost impossible to remember the last time I had a pain-free day, I have days that are manageable but not close to pain-free. This makes it impossible to rate my pain, if I have no “one” on my scale. I have days with less pain to compare it to but that is the extent of my ranking ability. Chronic pain patients cannot be asked to identify their pain the same way as people without. It is totally different. It is comparing a child who has not had a true meal in months and is legitimately starving to death to someone who had to fast for 12 hours. It is simply not the same.
posted by homunculus at 12:18 PM on January 21 [13 favorites]


I am, I believe, the perfect use case for opiates. They work exceptionally well at relieving my pain, have no side effects except constipation, and when I took codeine for a cough, I had exactly zero positive response such that I could even begin to imagine why anyone would be addicted for non-pain relief. (I've only taken stronger things when I had pain I had to get rid of.) And I know, without a shadow of a doubt, that if I ever needed strong painkillers for a chronic condition, that I would be fighting forever for them -- a woman! who is fat! And I'm cis and white.
posted by jeather at 1:46 PM on January 21 [3 favorites]


My Doc told me that the test were to ensure my liver was not getting damaged by the opiates.

Opiates have next-to-no effect on the liver - by far the most dangerous painkiller for the liver is good old paracetamol/acetaminophen/tylenol/calpol/panadol/whatever you call it in your country.
posted by kersplunk at 2:01 PM on January 21 [8 favorites]


which weirdly they insist on mixing with most opiates because we'd rather you die of liver disease than become an.... ADDICT!! (GASP)
posted by some loser at 2:33 PM on January 21 [8 favorites]


Interesting article on kratom, which many CPPs use as an alternative to opioids to manage their chronic pain. The author's partner takes it for her EDS pain.

How a Kratom Ban Will Create Health Risks and Suffering—and Fuel Terrorism
posted by homunculus at 5:57 PM on January 21 [1 favorite]


Another more surprising alternative pain medication: This man, full of tumors, grows psychedelic mushrooms for his pain. Legalization activists want you to meet him. He isn't so sure.

I've read about psilocybn's effectiveness in treating depression, but I'd never heard of using it for chronic pain until I read that piece. Since Oregon is considering both legalizing shrooms while also further restricting opioids, I imagine more CPPs in Oregon are going to try it.
posted by homunculus at 8:28 PM on January 21 [1 favorite]


2012 - out of work for 1 year with Fybromyalgia flare up. Gabapentin and Fentanyl patch was the only combo that worked. I fear daily a flare up because I have no idea how I will ever get treatment in the current climate.
posted by Manic Pixie Hollow at 10:44 PM on January 21 [4 favorites]


The Department of Health and Human Services is accepting public comments on their Pain Management Best Practices Task Force until April 1st. People with chronic pain can share their views on pain management and opioid prescription policies with the HHS.

Request for Public Comments on the Pain Management Best Practices Inter-Agency Task Force Draft Report on Pain Management Best Practices: Updates, Gaps, Inconsistencies, and Recommendations

(I should have put this in the FPP, dagnabit.)

Via Anne Fuqua (@PainPtFightBack): "More fuel to fire everyone up and get those keys a clicking & comments submitted to the HHS Pain Management Best Practices Task Force Docket!"

(I mentioned Fuqua in a comment above; don't miss the corrections she makes in the second link)
posted by homunculus at 10:44 AM on January 22 [3 favorites]


I'm not mystified by how opioid addiction became a problem.

I am! Maybe my doctors aren't giving me the good stuff?

I had hip surgery 2 years ago and an emergency surgery nearly a year ago to repair an outside fracture to my tibia and fibula after a skateboarding accident. In both cases I was discharged with a prescription opioid (generic for percoset for the hip, oxycodone for the leg). In both cases I was also prescribed an anti-nausea medication so I could actually keep the opioid down after I took it, and a stool softener to combat the constipation. With the hip, when the anti-nausea medication wasn't enough to help me keep the pill down, my buddy's GF gave me some of her weed (thank jeebus!).

In both cases I quit taking everything in a number of days, instead of the weeks it was prescribed for. I'd rather just grind through the pain than feeling like I need to throw up and not being able to take a crap. I still have a bunch of unused pills sitting in a bottle in a cabinet somewhere. They feel weirdly too valuable to throw out (yes, I know, take to a pharmacy for safe disposal).

I've asked my doctor how it's possible that we have an opioid epidemic - apparently there's a set of people that get enough of a positive feeling from enough of these drugs to actually get addicted, but I'm not in that set? He told me to knock on wood and roll with it.
posted by allkindsoftime at 11:56 AM on January 22


This is a bit hyperbolic, but it's got some good information in it: Opiophobia: The Irrational Fear of Opioids
posted by homunculus at 12:55 PM on January 22 [1 favorite]




Yeah, pain relief and sleep are the only positive effects I get from opiates; there's no euphoria or high. When I was on a morphine drip for days after my hysterectomy/oophorectomy I had to lie on ice packs to make the itching bearable and take Ativan to stave off the dry heaves.
posted by The Underpants Monster at 1:05 PM on January 22


I loved my plastic surgeon's hot take on my pain. I was grimacing or something and he said, "You must find a way to manage your pain!" and then abruptly left the room.

Also my former shrink's take: My pain (after an L-1 incomplete spinal cord severing) was all in my head.

And the one doctor who real with me yet fled the room after proclaiming: "You will have pain for the rest of your life"

Or the time I went to the ER and the doctor said, "I will take away your pain if you promise not to die" and I was like yeah man and woke up to be resuscitated with an angry doctor because he'd almost sent me to OD land. He was pissed at me, no joke. And I was like ???? I tried not to die sorry.

Oh, and for a chronic pain model that is not House there is Donald Rumsfeld. He managed to royally fuck over a lot of Iraqis while experiencing chronic pain. He's not too inspiring tho.
posted by angrycat at 6:02 PM on January 23


Since I recently joined Twitter I've started mirroring my MeFi posts as Twitter threads to see how that works over there.

Thread: The clampdown on opioid prescriptions is hurting pain patients
posted by homunculus at 1:28 AM on January 24


> The Department of Health and Human Services is accepting public comments on their Pain Management Best Practices Task Force until April 1st.

Tell the Task Force! Advice on Commenting to the HHS Task Force on Pain Management
posted by homunculus at 4:14 PM on January 26


bleep: "Medicine twitter is AWASH in this bullshit and it's extremely real and extremely stupid and extremely distressing."

Selection bias distorting perceptions and creating stereotypes is a widespread problem across professions. If as a, oh, say computer support specialist all you deal with all day is people asking "silly" questions or some people calling every week with the same problem you start thinking everyone is an idiot. If you are a cop you start thinking everyone is a crook or at least shady. It's also a component of Trump's Mirror.

That doesn't excuse it of course but I find the realization tkes soe of the edge of my fustrations when encountering of of these "everybody is"s.

The Underpants Monster: "Yeah, pain relief and sleep are the only positive effects I get from opiates; there's no euphoria or high."

Me too. Even a T3 just knocks me out.

angrycat: "Oh, and for a chronic pain model that is not House there is Donald Rumsfeld. He managed to royally fuck over a lot of Iraqis while experiencing chronic pain. He's not too inspiring tho."

Well there is also JFK.
posted by Mitheral at 9:25 AM on January 27 [2 favorites]


When I was on a morphine drip for days after my hysterectomy/oophorectomy...

In 2011 or 2012, when I had a laproscopic appendectomy (my appendix was fine, the pain was from a ruptured ovarian cyst that was the size of a large egg) I had a dilaudid drip. When I had my hysterectomy/oophorectomy last summer, I was given a Tylenol drip. Same hospital.
For me, the first surgery was much easier to recover from because i had much better pain management. The second surgery, a doctor yelled at me for still taking the prescribed Percoset two days after coming home from the hospital.
posted by Ruki at 11:48 AM on January 27 [1 favorite]


I'd love to find out who decided that acetominaphen was a painkiller and force him to get a simultaneous appendectomy, tonsillectomy, and wisdom tooth extraction with nothing else for the pain.
posted by tobascodagama at 12:38 PM on January 27 [7 favorites]


Tylenol must work for some people, I assume, but like tobascodagama it has zero effect on me. Ibuprofen works very well for me, and Aleve and aspirin have decent effects, but Tylenol might as well be sugar pills.

I'm really grateful my surgeon took my pain seriously when I was having various procedures leading up to my hysterectomy. The first time I had a biopsy and D&C, I ended up in a corner of the recover room with zero painkillers, in such pain I was literally setting off the monitor -- I presume because I was in light shock. But they'd come over and reset it and wander off again, and when I asked if I could have a painkiller, it was 'oh your doctor isn't around'. Eventually they managed to scrape up two pills, and within 15 minutes I was fine. But they couldn't send me home with anything so I had to fight my way through the on-call line and convince someone to prescribe me, all the time super-anxious, near panicky, that that level of pain was going to hit again when the meds wore off.

But my surgeon was super-apologetic when she heard about what happened, and when I said I needed that not to happen again, she agreed and ever after was always extremely careful to make sure I had both recovery painkillers and went home with a prescription.

Also, I am never ever disposing of my various leftover prescriptions from that period, because as far as I can tell, these days asking for a painkiller gets you identified as a drug seeker, even if you have externally verifiable, obvious pain -- I got treated as one for asking if I could get a prescription while waiting for antibiotics to knock down an infected root canal. Despite having the entire side of my face swollen with pus!
posted by tavella at 7:53 PM on January 27 [4 favorites]


One of the things I feel most lucky about as a pain patient is that my first rheumatologist took me very seriously about it, and the fact of the past treatment plus the particular diagnosis makes people take me more seriously about it. For my friends and clients who have more nebulous or variable conditions, it's much harder.

And yeah, I'm also in the group where opiates offer sleep and pain relief, but no kind of buzz. This is really common for people with chronic pain, that opiates bring us to somewhere near enough normal to function, but getting high on them is a ridiculous proposition - I'd have to take quite a bit to even feel anything besides the relief, and since I'm not looking to go out like Dee Dee Ramone I'm going to pass on that.
posted by bile and syntax at 12:24 PM on January 28 [4 favorites]


Beyond the Stigma: Chronic pain is the other side of the opioid epidemic
Sounia said he has already lowered his own prescription dose on his own, and his doctor has reassured him she won’t reduce the dosage further. “She’s not going to abandon me; she’s been right there since day one,” he said. His insurance company recently notified him that his current dosage has been approved for another year.

But he knows other pain patients who are being “tapered” off their medications — and he knows two New Hampshire patients who took their lives after their doctors stopped prescribing painkillers.

And he worries about what will happen to him when his doctor retires.

For those who don’t understand what’s at stake for people like him, Sounia suggests: “Try living a day in a pain patient’s shoes.”

“You wake up, you’re in pain; you go through the day, you deal with pain. You go to bed, you fight the pain to get some sleep, and then nine out of ten times you can make it through,” he said.

He said he understands why some patients give in to despair when their medications are cut off. “If someone takes all your hope away ... you’re going to become desperate,” he said.
posted by homunculus at 2:57 PM on January 28 [3 favorites]


When I had my hysterectomy/oophorectomy last summer, I was given a Tylenol drip.

My God, that's barbaric! I feel like I've walked into that scene in Star Trek IV where McCoy is horrified at all the primitive 20th-century medicine going on in the past.
posted by The Underpants Monster at 5:36 PM on January 28 [4 favorites]


Let’s start with the price of heroin. In the early 1980s, a gram of pure heroin cost about $2,200. Today that same amount costs less than $500, nearly an 80 percent decrease. A bag of heroin today will set you back about $5, the cost of a pumpkin spice latte. And prices continue to fall with the introduction of new and more powerful synthetic opioids, such as fentanyl.
. . .
. . .

It’s a different story for naloxone, a drug patented in 1961. Naloxone is near miraculous in its ability to reverse an opioid overdose within minutes. Prompt access to it could prevent some or all of the 115 opioid overdose deaths that occur in the United States every day. Naloxone is cheap to make, and has been off patent since 1985.

Given the ongoing devastation of the opioid crisis, you might expect that naloxone would be widely available at a low price. Not so. A decade ago, a lifesaving dose of naloxone cost $1. Today, that same dose costs $150 for the nasal spray, a 150-fold increase. A naloxone auto-injector, approved in 2016, costs $4,500.
The "opioids crisis" is not about saving the lives of drug users.

We don't give a crap about that.
posted by jamjam at 7:43 PM on January 28 [7 favorites]


Chronic pain patients held protests around the country yesterday. A couple of examples:

Arizona: ‘Afflicted not addicted’: Chronic pain sufferers rally for access to opioids

Oklahoma: Chronic pain patients in need of opioids take anger and frustration to Attorney General’s office
posted by homunculus at 8:10 PM on January 30 [1 favorite]


Something else that's come to mind from homunculus's comment:

I'm currently trying to taper down off my opioids. I've gone from a 15 mcg patch to a 10. I've gone from up to 4 tramadol a day to 1 (and very rarely 2). I'm motivated to do it, and although I did have a flare in December on the lower dosage it was short and I got through it.

But.

I'm afraid to get completely off the opioids in this environment. If (and more likely when) the full force of the pain came roaring back, would I be able to get back on them? Would I be able to get the medication that makes the difference between being able to work and being home on the couch? To their credit, my doctors won't give me a definitive answer. They know that the whole system is shaky right now. There's a disincentive for me to get completely off the pain meds, because I'm afraid I won't be able to access them again if I really need them.
posted by fiercecupcake at 7:22 AM on February 4 [2 favorites]






There's a disincentive for me to get completely off the pain meds, because I'm afraid I won't be able to access them again if I really need them.

If I was in your exact situation, I would keep getting them for this reason.
posted by homunculus at 6:30 PM on February 6 [1 favorite]


FDA: Pain Patients Dependent On Opioids Are Not Addicted
The U.S. Food and Drug Administration has released new guidance to drug makers to streamline the development of buprenorphine products to treat opioid addiction. Commonly known by the brand name Suboxone, buprenorphine has long dominated the market for addiction treatment.

Of importance to pain patients is a statement about the guideline by FDA commissioner Scott Gottlieb, MD, that seeks to clarify the difference between opioid addiction and patients who need opioids for pain relief.
posted by homunculus at 6:32 PM on February 6 [2 favorites]










Maia Szalavitz (@maiasz, MeFi's own) has an excellent new piece out in the NY Times:

When the Cure Is Worse Than the Disease: In an effort to reduce opioid addiction, doctors are cutting back on pain medication — and sometimes leaving patients to suffer.
As many as 18 million patients rely on opioids to treat long-term pain that is intractable but not necessarily associated with terminal illness. In 2016, seeking to curb opioid misuse, the Centers for Disease Control and Prevention introduced guidelines outlining a maximum safe dosage and strongly urging doctors to avoid prescribing for chronic pain unless death is imminent. The guidelines were supposed to be voluntary and apply only to chronic pain patients seeing general practitioners. Instead, they have been widely seen by doctors as mandatory.

This attempt to save people from addiction is leaving many patients in perpetual pain—and thus inadvertently ruining, or even ending, lives.

...

By working to reduce prescribing, government regulators, insurers, law enforcement officials, legislators and other policymakers have ignored the genuine dangers of leaving people in agony, including suicide and increased risk for heart attacks and strokes. And with the Trump administration having pledged to cut the manufacturing of opioids by pharmaceutical companies by an additional 10 percent, even more patients are at risk.
Via
posted by homunculus at 3:11 PM on February 9 [3 favorites]


I normally respect the CDC, but it's hard for me to fathom the cruelty and indifference that led to this sort of recommendation:

"strongly urging doctors to avoid prescribing for chronic pain unless death is imminent."

You are in constant agony, but we won't treat you unless you plan to do us the favor of dying soon. Seriously, what the fuck, CDC?
posted by tavella at 9:02 PM on February 9 [7 favorites]






Crackdown on opioids has its own victims: People who need them to live

I'd never heard of stiff person syndrome (SPS) before. It sounds absolutely awful. The reporting on the crackdown on CPPs is revealing so many different ways a person can suffer.
posted by homunculus at 11:29 AM on February 13


From homunculus's crack down link "The epidemic began in 1996, when drugs like OxyContin hit the market and opioids were prescribed not only for terminal illnesses like cancer treatment but for relief from even routine pain, such as a toothache, instead of an over-the-counter NSAID."

That just absolutely enrages me. First of all, opioids were regularly being prescribed before 1996: Tylenol 3, that is codeine combined with acetaminophen, was the standard pain prescription from at least the late 70s on. I got prescribed it, my mother got prescribed it, I used to use leftovers to handle my worst period days before the advent of Advil. So the presentation of it was all fine until we got *weak* and let people have pain treatment is bullshit. Second of all, again the bit with only people who are dying deserve to have pain relief.

And third, toothache as routine pain? I had a hysterectomy a few years ago, and I had a "toothache", in this case an infected root canal, about a year later. I took Vicodin for 2 days after major abdominal surgery and after than Advil 600mg was enough. For the tooth, I had to take it for nearly a week until the antibiotics had knocked down the infection enough and the the pus had been absorbed enough that I wasn't in agonizing pain. It wasn't the worst pain I have ever experienced, but it was in my top 3, and one of the others was having an infected lymph node in my jaw opened, cleaned out, and stuffed with a dressing under topical anesthesia that entirely failed to work.

This is the kind of evil bullshit that leads to the poster above who was only allowed Tylenol for pain relief after major surgery.
posted by tavella at 3:26 PM on February 13 [8 favorites]


FFS. Apparently one of the chronic pain patients highlighted in the HRW report has been flagged by the DEA following a DOJ action against 2 Tennessee pharmacies.

Twitter thread.
posted by homunculus at 2:52 AM on February 15 [1 favorite]






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