Chronic pain patients driven to despair

June 29, 2018 9:02 AM

Unintended consequences: Inside the fallout of America’s crackdown on opioids.

Chronic pain patients, such as Stewart, are driving extraordinary distances to find or continue seeing doctors. They are flying across the country to fill prescriptions. Some have turned to unregulated alternatives such as kratom, which the Drug Enforcement Administration warns could cause dependence and psychotic symptoms. And yet others are threatening suicide on social media, and have even followed through, as doctors taper pain medication in a massive undertaking that Stefan Kertesz, a professor at the University of Alabama at Birmingham who studies addiction and opioids, described as “having no precedent in the history of medicine.”

The Pain Refugees: The forgotten victims of America’s opioid crisis

“But can’t it be possible,” he added a moment later, “to tackle addiction and care for those who are in real pain? Can’t we do both? Why do you have to harm some people in order to help others?”

Marc Mentel, the chair of the Montana Medical Association’s Prescription Drug Abuse Task Force, voiced a similar thought when I spoke with him. In the name of saving lives, the Missoula-based physician said, “I worry that we may be throwing the baby out with the bathwater. But suffering is suffering.” Untreated pain and opioid addiction, he noted, have a great deal in common. They both tend to be accompanied (and exacerbated) by conditions such as depression and post-traumatic stress — and both are rampant in areas with the fewest resources to deal with them. He referred to it as a perfect storm of scarcity: a lack of access to addiction specialists, a lack of mental health services, and a lack of the knowledge and the wherewithal to effectively treat chronic pain. Throw in poverty and joblessness, and the vicious circle becomes apparent. As a society, we’ve found it easier to dismiss pain patients as addicts, and to regard addicts as criminals, than to confront the tenacity of these American maladies.

Pain patients pushed to the brink: Overdose prevention efforts have had unintended — and dire — consequences

The nation’s struggle to corral the runaway opioid overdose epidemic with new restrictions on pain medications is backing pain patients into a corner. Patients are being dropped by their doctors, forced to cut their doses drastically and endure dangerous withdrawals, or abandoned to cope with a medically created opioid dependence on their own. Patients who have always taken their medications as prescribed say they are treated like drug addicts and are increasingly driven to despair.

Lost among the thousands of overdoses the health care system is trying to prevent is a small, but worrisome shadow effect of suicides among chronic pain patients who feel their suffering is the unintended consequence of the response.

Some links via @maiasz (MeFi's own).

posted by homunculus (42 comments total)

Yes indeed. Every time I've tried to talk about how a friend actually, like, needs strong painkillers for serious chronic pain, people - even here - have handed me a lot of stuff about opiate addiction.

It makes you despair of humanity sometimes since we can't even get our heads around this fairly non-complex matter - it should be easy to understand that there are two aspects to this problem, and that while balancing both may require some care, balancing both is important. But people don't get that, no-sirree bob they don't.
posted by Frowner at 9:05 AM on June 29, 2018 [46 favorites]

I don't know that "unintended" is a fair categorization here. That word suggests that a certain set of consequences were not predicted (or predictable). These consequences were seen, and known, and accepted. What's the terminology used when military command sends a unit into a firefight while previously knowing that a certain percentage of those soldiers are expected to die?

That is a fairer characterization of this decision process.
posted by Silvery Fish at 9:14 AM on June 29, 2018 [17 favorites]

I swear, at least part of our opioid crisis is derived from our draconian approach to all drugs in general. Medical research on the efficacy of cannabis and psychadelics has been horrendously stymied.

I don't know that these drugs would necessarily do anything for chronic pain, but then again, neither does anyone else, because we can't research these things!
posted by explosion at 9:15 AM on June 29, 2018 [20 favorites]

Why should they, when engaging in moral panic is so much easier and more fun? And attacking opiate addiction via making people's lives generally less shitty is really hard work.
posted by praemunire at 9:15 AM on June 29, 2018 [5 favorites]

For anyone who hasn't heard of Kratom yet here is a good guide from the lovely boys at Street Fight radio.
posted by Space Coyote at 9:56 AM on June 29, 2018 [6 favorites]

I mean, it's kind of the perfect storm of American health care, right?

1. Observe that opiates are potentially addictive
2. Develop a new opiate pain medication, which is of course under patent, that you claim has a much lower risk of addicting patients
3. Market the everliving shit out of your new drug, encouraging doctors to hand them out like Pez because there's no downside to treating chronic pain
4. Whoops, turns out your new drug was just as addictive as the last generation was, and now the country is gripped by a heroin addiction as addicts turn to cheaper opiates
5. No one involved in 1-4 suffers any consequences whatsoever, and the principals get to keep the billions of dollars they made by devastating entire parts of the country
6. Observe that there's still an unreasonable number of opiates being prescribed
7. Declare this problem, which you created, to be a moral crisis, and lobby for legislation to clamp down hard on doctors who overprescribe
8. When doctors respond rationally by refusing to prescribe painkillers for patients with actual chronic pain, smear the patients as drug-addled hypochondriacs to avoid scrutiny falling on you

Step 9 would be "Profit!", except that's what the pharma industry has been doing for all of the last twenty years.
posted by Mayor West at 10:26 AM on June 29, 2018 [46 favorites]

Legal hair-splitting: One man's addiction is another's prescription...the difference is simply a matter of having the appropriate documentation. There should be no problem, here...this is another manufactured crisis.

Donald Trump has said he already knows how to solve the problem of opiate addiction...but America "just isn't ready for it, yet...just not ready...".

Get ready, America...
posted by littlejohnnyjewel at 10:29 AM on June 29, 2018 [6 favorites]

now the country is gripped by a heroin addiction as addicts turn to cheaper opiates

If a human is cut-off from the supply by either the doctor or the insurance firm - what is the outcome expected to be?

Example I know of from the court papers: At age 12 - determined to have schizophrenia. Not treated. Age 32 drinking to the point of liver failure. At the hospital where opioids were introduced. Later - Felony theft of drugs from dying elderly person (once cut off by doctors). Now on paper and can't find a job it seems. Divorced and a cycle of failed dating relationships.

Where was the problem here - the opioids? Booze? Untreated or resisting treatment of other issues? Pointing at opioids here is the low-hanging fruit in the computer based public record where one can do a count operation.
posted by rough ashlar at 10:44 AM on June 29, 2018 [4 favorites]

I was recently doing some research on non-addictive analgesic options for severe pain and ran across this article in JAMA, suggesting that, for short-term management of severe pain in an emergency room situation, a cocktail of 400 mg ibuprofen and 1000mg acetaminophen (paracetamol) is just as effective at pain reduction as common opioid treatments.

(This alternative does not effectively address the need for longer-term, chronic pain management, as there can be serious side effects associated with longer term use of ibuprofen and acetaminophen.)

I was taken (ahem) aback when I got into researching chronic back pain management, when I learned that lower back pain (LBP) is the #1 cause (!) of disability in the world, and one of the top 3 reasons people seek medical attention. (Gatchell, Polatin, et al., in J. Occup. Rehabil. 2003) I really had no idea.

Epidural steroid injections seem to be one of the most helpful interventions for LBP, but I also know of two personal acquaintances who have been on long-term opioid use for back pain, despite the injections.

(Incidentally it was also surprising to learn that pre-injection x-rays and MRIs, ostensibly used to help guide decision making prior to selecting an injection site, have been shown largely to be useless and a waste of money.)

The last ten years of my Stepdad’s life, he was dealing with severe pain from diabetic neuropathy. I can’t imagine what it must be like to go through life in constant pain like that.
posted by darkstar at 11:06 AM on June 29, 2018

One-third of cancer patients report insurers refused to cover #opioid meds, and 1/4 report pharmacists refused to fill their #opioid Rx.

FFS.
posted by homunculus at 11:10 AM on June 29, 2018 [19 favorites]

I've been telling people this is going to go badly for a long time...
posted by atoxyl at 11:13 AM on June 29, 2018 [3 favorites]

One-third of cancer patients report insurers refused to cover #opioid meds, and 1/4 report pharmacists refused to fill their #opioid Rx.

Which is even crazier when I think back to when opioids were the only serious painkillers insurers would approve because they're so cheap.
posted by Thorzdad at 11:15 AM on June 29, 2018 [1 favorite]

I think I live in the twilight zone honestly. Or maybe San Francisco has much more humane opioid policies. When I started getting funky nerve pain earlier this year I grinned and bore it until I couldn't dreading getting a pain script. My surgeon not only wrote the tramodol script, it kept refilling even though I took maybe 5. Now after the hardware removal I took much more than 5 (over the course of a week, getting a pin out hurts at first)-but that's tramodol.

Whats bizarre is that for my upcoming abdominal surgery I was informed that the potential for pain was a lot higher than mere hardware removal (I didn't want to say- bone graft and fusion doc, I think I can take it, but shes most likely right, I'm just a big dumb tough) and When I told my doc that you know, tramodol don't really work so great on me, its just that I'm allergic to everything else, (rip vicodin and percocet, you worked very well until you tried to kill me with hallucinations and rashes) She wrote me a script for fucking dilaudid! I didn't even know it came in pill form! I only knew they gave it to me in my IV in surgical settings and unlike other drugs I tolerated it well. I suppose, while I'm not really look forward to this surgery, at least I won't be in too much pain. I have a feeling this is one of the perks of living in San Francisco- more humane pain management policies. But I still slightly side eye my OG surgeon for giving me so many tramodol refills, I have a sneaky suspicion there will be *many* more hoops to jump through to refill the dilaudid.

As someone who has a fair amount of chronic pain but who can't really risk taking opioids unless surgery or injury (I get allergic to stuff super quick so meds have to be rationed with me- they're are so many antibiotics I can't take the real risk is if I were to get allergic to more, and then get a MRSA- there might not be anything to treat me) I am both incredibly frustrated that something as fundamental as pain relief is becoming geographically dependent ie: the humane policies of SF versus anywhere else- but also, I would like some alternatives. Because right now all my alternatives tend to be surgical and while I don't have much of a choice in the matter this time, it would be really nice if newer drugs could be developed- so that selfishly if I get allergic to what I can currently take pain wise- I'd have a fucking option besides prayer.
posted by Homo neanderthalensis at 11:36 AM on June 29, 2018 [1 favorite]

Silvery Fish hit the nail on the head. You can't really call the results of your actions "unintended" if you know damn well what those results will be and choose to act anyway.

Speaking personally, I'll take an "opioid crisis" over a "human beings bedridden, in agony, and unable to participate in life and society crisis" every time.

This is playing out among my loved ones right now, and it get me as mad as a hornet.

Re: steroid injections, they do work really well for some people, but you can't just keep getting them indefinitely.
posted by The Underpants Monster at 12:58 PM on June 29, 2018 [12 favorites]

Whats bizarre is that for my upcoming abdominal surgery I was informed that the potential for pain was a lot higher than mere hardware removal (I didn't want to say- bone graft and fusion doc, I think I can take it, but shes most likely right

Yeah, I've had both my bones and my innards operated on, and the innard-fiddling was more painful. I had a morphine pump for days afterward - a double-edged sword because morphine makes me itch like fire ants. They had to put ice packs under by back while I lay there.
posted by The Underpants Monster at 1:07 PM on June 29, 2018 [1 favorite]

It’s almost as if declaring war on things doesn’t work. Which is crazy talk in this fucking country, I know.
posted by Celsius1414 at 1:39 PM on June 29, 2018 [11 favorites]

Man I’m so lucky Dilaudid doesn’t give me fire ants- Percocet did sometimes, the increase in the fire ants sensation was the first clue I was developing an allergy (second clue- rash from ankle to my hip WOMP WOMP) urg This next surgery is going to suck so hard.
posted by Homo neanderthalensis at 2:03 PM on June 29, 2018 [2 favorites]

Nothing like going through the medical system with chronic pain and realizing that not only can a lot of injuries not really be fixed but also we don’t understand pain enough to find something that works and isn’t pleasurable to the point of causing abuse. Every medical/chemical suggestion above may help with pain but it doesn’t stop the pain really.

Low back pain definitely isn’t some new kind of malady. If this is the best we can come up with, what did people do in the days before opiates?
posted by LizBoBiz at 2:29 PM on June 29, 2018 [2 favorites]

Whats bizarre is that for my upcoming abdominal surgery I was informed that the potential for pain was a lot higher

They were not lying. Be prepared to use that Dilaudid.
posted by praemunire at 2:46 PM on June 29, 2018 [1 favorite]

Low back pain definitely isn’t some new kind of malady. If this is the best we can come up with, what did people do in the days before opiates?

Drank, mostly.
posted by clew at 2:57 PM on June 29, 2018 [10 favorites]

this article in JAMA, suggesting that, for short-term management of severe pain in an emergency room situation, a cocktail of 400 mg ibuprofen and 1000mg acetaminophen (paracetamol) is just as effective at pain reduction as common opioid treatments.

At 2 hours after administration! What the fuck is the point of measuring the effectiveness of acute pain relief two hours later? Jesus that's a stupid piece of research. It it wasn't p-hacked it might as well have been, for all it adds to our knowledge about how to manage acute pain.

Anyone who has ever been in acute pain for which they've taken ibuprofen and paracetamol and then got prescription pain relief knows the difference; trying to kid is that the drugs are of basically the same effectiveness is just insulting.
posted by howfar at 3:33 PM on June 29, 2018 [13 favorites]

But I still slightly side eye my OG surgeon for giving me so many tramodol refills, I have a sneaky suspicion there will be *many* more hoops to jump through to refill the dilaudid.

Here's one toxocologist's take on tramodol:

“What’s wrong with tramadol?” is something I get asked a lot

Answer: Plenty

Thread ->
[...]

5. In other words, giving a known dose of tramadol is like giving venlafaxine and morphine in an unknown ratio.

Seriously, why do that?

darkstar: 1000mg acetaminophen

Lay person here, but isn't that a lot of acetaminophen in one go? Like "Ow, my liver!" territory?
posted by mandolin conspiracy at 3:42 PM on June 29, 2018 [3 favorites]

what did people do in the days before opiates?

We don't know, since poppy seeds have been found at Neolithic sites and the Sumerians (who called it the "joy plant") were definitely using opium for medicinal purposes.
posted by Halloween Jack at 3:47 PM on June 29, 2018 [4 favorites]

Not that unusual a dose, no. I take 1000mg of acetaminophen in one go on the regular.

Instructions on the package say take one or two 500mg pills every 4 to 6 hours, to a maximum dose of 4000mg per day.
posted by Secret Sparrow at 3:48 PM on June 29, 2018 [2 favorites]

That twitter thread that was linked by mandolin conspiracy is fascinating especially where the toxicologist notes that tramodol is metabolized wildly differently from person to person- I never understood why my dad who is a large man takes maybe one pill for his chronic back pain/slipped disc situation and it works so well for him where I can sometimes take 3 and it barely touches the pain. I am feeling much better about my script switch I’ll tell you what!
posted by Homo neanderthalensis at 3:52 PM on June 29, 2018 [2 favorites]

Homo neanderthalensis, you might be interested in this piece by Juurlink as well....

Tox & Hound: Tramadont, in which he says:

And because tinkering with monoamines in the dorsal horn of the spinal cord modulates pain transmission, that is tramadol’s analgesic mechanism of action #1.

So why is tramadol lumped in with opioids? Because one of its metabolites (O-desmethyltramadol; ODT) is a genuine agonist at mu opioid receptors, binding with an affinity 300 times that of tramadol itself. (Note: ODT should not be confused with founding member of the Wu-Tang Clan, ODB (Ol’ Dirty Bastard), who collapsed and died in 2004 with cocaine and — I kid you not — tramadol in his system.)
posted by mandolin conspiracy at 4:04 PM on June 29, 2018 [2 favorites]

Aren't most "opioid" deaths from heroin and illegal fentanyl? But somehow Vicodin and Oxycontin get lumped in with them? Is this like whipping up a moral panic about a "stimulant crisis" and grouping together crystal meth, Adderall, and venti lattes, or am I really missing something?
posted by Ralston McTodd at 4:26 PM on June 29, 2018 [4 favorites]

Pill Limits Are Not a Smart Way to Fight the Opioid Crisis

The undeniable reality is that prescription pills (often mixed with other drugs) do produce fatalities, sometimes in patients who receive them as part of medical care. Nonetheless, about three-quarters of the roughly 42,000 opioid-related overdose deaths in 2016 were caused by heroin and illicit fentanyl. Deaths associated with commonly prescribed opioids (in cases where there is no heroin and fentanyl present) have fallen only slightly since 2011 (from 10,346 to 9,688 in 2016, a figure that includes typical pain medications but not methadone), despite a 48 percent reduction in high-dose opioid prescriptions since that time. These realities challenge the assumption that prescription control will have a big impact on the overall toll of opioid deaths. Meanwhile, anyone with a conscience has to ask what will happen to patients whose medications for pain are reduced in order to meet a presidential mandate of one-third by three years.

posted by homunculus at 4:39 PM on June 29, 2018 [4 favorites]

Ralston, the crusaders say that prescription opiates cause opiate addiction which then leads to abuse of deadlier opiates. This is partly statistical (yes, most heroin addicts have at some point finagled prescriptions for vicodin or Percocet), partly a rehash of the "gateway drugs" panic, and partly an attempt to blame Big Pharma for the deaths. It would be nice if it were big corporations that we could shut down, but alas - fentanyl is easily synthesized and isn't going anywhere. If we don't ship it by mail from China, chemists can make it here.
posted by Easy problem of consciousness at 5:00 PM on June 29, 2018 [4 favorites]

I’ve been taking 1/2 a Nucynta twice per day for my back for like 5 years. The amount I’ve had to spend for regular refills at a pain clinic is just ludicrous . I show up , they ask me a few questions and then give me two or three more months. Then I get $160 bill after insurance and then another $30 or so from an anesthesiology practice (wtf). and I get random pee tests and the one time I lost my Rx was a MAJOR FUCKING DEAL. And I used to take more and cannot for the life of me figure out what the attraction might be. This particular opioid is a big nothingburger for me in terms of feeling high or craving it. I wish I was off it but surgery and injections do nothing and of course massage or a yoga class isn’t covered by insurance.
posted by freecellwizard at 5:46 PM on June 29, 2018 [3 favorites]

This particular opioid is a big nothingburger for me in terms of feeling high or craving it.

That's the thing--if you're really in pain, you're not going to get euphoric off a suitable dosage of an opiate. I just had a quite painful procedure done (many doctors keep you overnight for pain control, but, no, I had to go for the cutting edge people), and I could tell when I was starting to recover and could switch to the next tier of pain relief when the Percocet did anything more pleasant than reduce me to a state of woozy moderately-less-misery.

There were low-hanging-fruit pill mills that really did need to be shut down and almost certainly funneled people towards addiction, but with those largely gone I wouldn't be surprised if we saw little to no further reduction in prescription-opiate-only-related deaths based on reducing that supply alone. I know I've said it a million times, but maybe we could try figuring out how most people actually progress to addiction so we can determine if there's actually any benefit to making it so hard to get a prescription to weigh against the undoubted suffering we are condemning chronic-pain patients to.
posted by praemunire at 9:57 PM on June 29, 2018 [4 favorites]

Paul Offit wrote a good overview of the history of opioids in medicine, from "Morphine for teething" to "OMG drug seeker moral panic death." It's one of the essays in his book Pandora's Lab but might also be available stand-alone somewhere.

The other problem is the lack of comprehensive care for people in chronic pain. An adequate care model would incorporate massage and psychology and biofeedback and a whole bunch of stuff that is not "let me write you a script for Percocet with my Percocet pen."
posted by basalganglia at 8:42 AM on June 30, 2018 [3 favorites]

I think that if we're going to treat addiction as a chronic disease, like cancer, we have to work on screening for addiction like we screen for cancer. We have mammograms, colonoscopies, skin exams, and the like to look for pre-cancers or cancers in their earliest, treatable stages. Likewise, we tell people to go to their doctors if they note a new lump or suspicious symptoms.

If we treated cancer like we treat addiction, we'd be waiting until the patient was riddled with metastatic disease and then sending them to "Cancer Anonymous" meetings.

Rather than let chronic pain patients just suffer, we need to offer wide-ranging ways of treating pain (through physical therapy, legal marijuana, massage, biofeedback, etc. as basalganglia suggests) and we'd have a way to screen for people vulnerable to addiction and catch them, like fish in a net, before they become full-blown addicted (and without just letting them suffer).
posted by Rosie M. Banks at 10:51 AM on July 1, 2018 [4 favorites]

I just got a letter from my insurance company talking up their new level of substance abuse coverage. It got me to thinking about all the people who, when they're not able to get appropriate treatment within the medical establishment, are going to start self-medicating like never before with whatever they can get their hands on. I guess they have to wait until then to get society to care.
posted by The Underpants Monster at 9:49 AM on July 2, 2018

And by care, you mean imprison. Because that’s what we do. Declare war and imprison. Should be on the currency in Latin.
posted by Celsius1414 at 10:07 AM on July 2, 2018 [1 favorite]

Chronic pain patients, overlooked in opioid crisis, getting new attention from top at FDA
posted by homunculus at 9:16 AM on July 6, 2018

Lock-In Programs May Be Doing More Harm Than Good—And Congress Is Considering Expanding Them
posted by homunculus at 8:30 AM on July 11, 2018

Pain patients beg FDA for more options, easier access to opioids: People with chronic conditions cope with prescription restrictions and limited alternative therapies amid the nation's opioid crackdown.
posted by homunculus at 8:34 AM on July 11, 2018

In other news: How most Australian media outlets where duped on a study of “Medical” Cannabis
posted by homunculus at 9:00 AM on July 11, 2018

now the country is gripped by a heroin addiction as addicts turn to cheaper opiates

If a human is cut-off from the supply by either the doctor or the insurance firm - what is the outcome expected to be?

Florida cuts off oxycodone: Death, devastation follow. "With the best of intentions and the worst of plans, Florida’s long-delayed 2011 crackdown on pill mills ignited the heroin crisis, not just in Florida, but across more than half the country, a Palm Beach Post investigation found."

Via
posted by homunculus at 3:04 PM on July 18, 2018 [1 favorite]

The race against pain: As clinics close, patients need new doctors before pills run out
posted by homunculus at 2:16 AM on July 29, 2018

New efforts to control opioids become ‘funhouse mirror image’ of prior policies
posted by homunculus at 2:16 AM on July 29, 2018