The Pain Was Unbearable. So Why Did Doctors Turn Her Away?

[Nevilledog]

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Stephanie M. Lee
@stephaniemlee
A sweeping drug addiction risk algorithm has become central to how the US handles the opioid crisis. It may only be making the crisis worse. https://wired.com/story/opioid-drug-addiction-algorithm-chronic-pain/?utm_source=twitter&utm_medium=social&utm_campaign=onsite-share&utm_brand=wired&utm_social-type=earned… via @WIRED

The Pain Was Unbearable. So Why Did Doctors Turn Her Away?
A sweeping drug addiction risk algorithm has become central to how the US handles the opioid crisis. It may only be making the crisis worse.
wired.com
1:42 PM · Aug 11, 2021

https://www.wired.com/story/opioid-drug-addiction-algorithm-chronic-pain/

One evening in July of 2020, a woman named Kathryn went to the hospital in excruciating pain.

A 32-year-old psychology grad student in Michigan, Kathryn lived with endometriosis, an agonizing condition that causes uterine-like cells to abnormally develop in the wrong places. Menstruation prompts these growths to shed—and, often, painfully cramp and scar, sometimes leading internal organs to adhere to one another—before the whole cycle starts again.

For years, Kathryn had been managing her condition in part by taking oral opioids like Percocet when she needed them for pain. But endometriosis is progressive: Having once been rushed into emergency surgery to remove a life-threatening growth on her ovary, Kathryn now feared something just as dangerous was happening, given how badly she hurt.

In the hospital, doctors performed an ultrasound to rule out some worst-case scenarios, then admitted Kathryn for observation to monitor whether her ovary was starting to develop another cyst. In the meantime, they said, they would provide her with intravenous opioid medication until the crisis passed.

On her fourth day in the hospital, however, something changed. A staffer brusquely informed Kathryn that she would no longer be receiving any kind of opioid. “I don’t think you are aware of how high some scores are in your chart,” the woman said. “Considering the prescriptions you’re on, it’s quite obvious that you need help that is not pain-related.”

*snip*

[hlthe2b]

1. Predicted.. In the past decade, appropriate multi-modal analgesia was made a priority for both

human and veterinary medicine. Now, both fields are being pressured to use ANYTHING but narcotics and the oneness is increasingly on the professional in both to screen for drug abuse/doctor shopping/drug diversion so that even those more rare cases that are clear indications for at least short term narcotic use are more often NOT receiving them.

Good goal, but not if people (or animals) are languishing in unaddressed, acute, or chronic overwhelming pain for which NSAIDs or other "basic" forms of pain relief do nothing.

Yes, multi-modal forms of pain relief strategies are appropriate. But that does not ALWAYS exclude restricted use of narcotics.

[Warpy]

14. Sing it!

our whole system is not only futile, unworkable, and totally broken, it seems to have been designed for maximum cruelty.

[hlthe2b]

17. Yup... and that assumes one can even survive long enough past the total lack of coordination

our system fosters to even become a candidate for long-term pain relief.

I met the physician euphemistically referred to as the "Father of Managed Care" a few years ago in Jackson, WY. His role in promoting HMOs and the primary care physician as "gatekeepers" has led him to regret much of what he promoted and now grudgingly admits health care sans a nationalized system to ensure uniform coordination and metrics is one destined to at least fall short. It was an interesting discussion and eye-opening for several of his colleagues overhearing the conversation.

Here's an old piece that showcases his role over the years:
An Interview With Paul Ellwood Jr., M.D.
https://www.managedcaremag.com/archives/9711/9711.qnaellwood.html


Broken, indeed.

[PatrickforB]

25. Yep, that war on drugs, makin' Murika grate agin'. My wife is often in chronic pain.

It tears my heart out. We fortunately live in a state where cannabis is legal, and also use ibuprophin regularly. She does try to avoid the opioids.

Say, I have an idea! Maybe we ought to take the profit motive out of big pharma, and healthcare in general, and move away from evidence based hueristic medicine which is basically a horrible trial and error affair, and embrace a more holistic healing paradigm. Like shamans. Plant medicine. Eating right.

And, perhaps we should shed the utter soullessness of our corporate culture, and adopt policies that support and materially benefit families.

Oh-oh...gasp! That PatrickforB must be criticizing.........capitalism!

[Biophilic]

2. Brother, this needs to be read. Shaking my head because I haven't a clue how to help. nt

[mopinko]

3. happened to my youngest.

'we cant give you the kind of help you need'
boom. go somewhere else next time.

if her sister hadnt figured out what was going on, i dont know what would have happened.
one of the best hospitals in the country, too.
once confronted, docs gave her help weaning off. but none was offered up front. they just assumed she was knowingly seeking drugs and wanted only more drugs.

[Baitball Blogger]

4. Horrifying.

Do they ever check on the doctors who are happy filling out prescriptions?

[Manifestor_of_Light]

5. Women rarely get enough pain relief for menstrual problems.

I had severe cramps for decades, and never got enough pain relief. More than once I went to an ER with menstrual cramps and got stuck in a back room and ignored. I also had endometriosis. I've had a kidney stone, and the pain from severe menstrual cramps is just as bad as that of a kidney stone, for comparison. Also had an ovarian cyst that went kablooie, and that was extremely painful. They didn't go in and operate like they should have, b/c I was part of the great unwashed/great uninsured at the time.

I had a hysterectomy, and never got enough pain relief in the hospital.

Doctors will say "Oh it's your period, so it's NORMAL!" and say to take 800 mg of ibuprofen. Women's diseases are never studied enough to know how to treat them. It's as if men are the model, and women are the strange ones that men just don't understand. I never had a chance to get prescribed opioids, and it burns me up that I couldn't get that relief back in the day. It's gotten better now that there are a lot of women doctors, but still has a ways to go.

[pnwmom]

20. I thought natural childbirth as an adult was easier than my periods when I was a teen.

At least there were gaps of time between the contractions, and I had my husband there to push on my back with the tennis balls to relieve the pain. And my labors were much shorter than my periods; and I only threw up with periods, not with labor.

[soldierant]

24. This fellow entometriosis sufferer (now, thank God, post-menopausal) says

[Maraya1969]

6. I'll never forget when Costco handed me a paper that was supposed to explain why they

wouldn't renew my medications, (I take an opiate and a benzo) and the paper was just basically a notice that, 'You are a drug addict and we will not refill your prescriptions"

I wanted to go through the window and throttle someone. Who the hell are these people? They didn't know my diagnosis. They knew NOTHING.

So I don't deal with them anymore. Life if too short.


Edit: To add that I have had several old dogs - I've adopted older dogs. And they have been on a lot of things including Phenobarbital which I don't know if it is a barbiturate. It was for seizures. I've also had benzos for them a couple times. I don't remember any opiates.

Either way - Fuck all of them. Life is too hard to have third parties making medical decisions for you.

[ShazzieB]

16. Just for the record...

Phenobarbital is definitely a barbiturate. It's right there in the name (see bolding).

I'm so sorry you (and evidently a lot of other people) have had/are having to go though that. We as a society have GOT to find a better way to deal with the opioid crisis. Punishing people for having chronic pain issues that caused them to need this kind of information is NOT the way to go!

[Coventina]

7. The war on those with chronic pain issues continues apace.

I have osteoarthritis at a level that is several decades beyond my actual age, and it's only going to get worse.

I can't take NSAIDS due to my cardiac issues. (no ibuprofen, no Alleve, no aspirin, etc.)

Tylenol does nothing for me.

What does that leave me? Yoga and meditation.
I do both, but they only help to a limited extent. I do have to work full-time, for several more decades, so I can't just sit and meditate all day.

What the actual fuck am I supposed to do? Just suffer increasing pain my whole life?
I'd rather end it, thank you. And I will, if this doesn't change, and soon.

[Earth-shine]

21. You sound like a candidate for medical cannabis.

Perhaps you can get it in your state.

Could be worth a try.

[Coventina]

22. I'm one of those oddball people that gets zero effects from marajuana.

I've tried several varieties and it had no effect on me at all.

The universe hates me, apparently.

[Crunchy Frog]

28. You might want to look into kratom.

It has very mild opioid-like effects, and many people with chronic pain find it to be very effective.

[Coventina]

31. Will do!

Some googling has indicated that growing my own poppies is not really feasible.

[Crunchy Frog]

35. Sometimes you have to dig a little deeper.

If you have a place you can garden, you can almost certainly grow them.

Please see my other post.

[Earth-shine]

29. Famous last words.

It doesn't work until one day you try it and it puts you on your ass, and in front of your friends.

But, that's referring to smoking recreational MJ.

Medical MJ comes in various forms, like pills, vapes, oils, and baked goods (cookies, brownies, etc.)

These all absorb into the body differently, but achieve similar effects.

Have you noticed how your arthritis is worse when you are stressed, and there's some relief when relaxed? It's one of the ways medical MJ can help. It also has natural anti-inflammatory effects.

For a person with few options, I really think you should look into it. Good luck!

[Coventina]

32. Thanks, I will see what my options are.

We have medical mj here in AZ.

Since I'm a teacher, I might not qualify, though.

[Demovictory9]

41. youtube chiropractors - some videos helped me a bit

[OMGWTF]

8. My brother committed suicide with two guns to his head when he couldn't stand the pain anymore

because the docs in WA state cut him off cold turkey from opioid pain meds for his broken back. They killed him.

[Coventina]

10. They absolutely killed him.

My deepest sympathies to you and your family.

[Beaverhausen]

15. I'm so sorry

They indeed killed him. Cold turkey? That's totally f'ed up.

I watched my husband suffer through his doctor cutting his dose by 2/3 but at least he did it slowly.

[tblue37]

30. I am a chronic pain sufferer. I was also cut off cold turkey.

[WhiteTara]

9. When I had endrometrosis

(one of the first 6 patients listed) I was pretty much treated the same way. That was in the early 70s. Nothing has changed....especially the pain associated with the condition.

[Hekate]

11. We just go from one extreme to the other in this country. It is FUBAR

[dalton99a]

12. We now have the equivalent of a secret credit score for prescriptions

Beyond that, things get a little mysterious. NarxCare also offers states access to a complex machine-learning product that automatically assigns each patient a unique, comprehensive Overdose Risk Score. Only Appriss knows exactly how this score is derived, but according to the company’s promotional material, its predictive model not only draws from state drug registry data, but “may include medical claims data, electronic health records, EMS data, and criminal justice data.” At least eight states, including Texas, Florida, Ohio, and Michigan—where Kathryn lives—have signed up to incorporate this algorithm into their monitoring programs.

For all the seeming complexity of these inputs, what doctors see on their screen when they call up a patient’s NarxCare report is very simple: a bunch of data visualizations that describe the person’s prescription history, topped by a handful of three-digit scores that neatly purport to sum up the patient’s risk.

Appriss is adamant that a NarxCare score is not meant to supplant a doctor’s diagnosis. But physicians ignore these numbers at their peril. Nearly every state now uses Appriss software to manage its prescription drug monitoring programs, and most legally require physicians and pharmacists to consult them when prescribing controlled substances, on penalty of losing their license. In some states, police and federal law enforcement officers can also access this highly sensitive medical information—in many cases without a warrant—to prosecute both doctors and patients.

In essence, Kathryn found, nearly all Americans have the equivalent of a secret credit score that rates the risk of prescribing controlled substances to them. And doctors have authorities looking over their shoulders as they weigh their own responses to those scores.

[Major Nikon]

13. Just another symptom of the complete failure of US drug policy

If we could only make drugs even more illegal then surely someday it must have an effect on addiction, right? Never has worked and never will. You’d think after more than 100 years of trying the same thing over and over and failing someone would wake up and smell the coffee.

[ShazzieB]

18. Yeah, make them even more illegal, that's the ticket!

[lonely bird]

19. A couple of comments...

Insurance companies make decisions regarding medications which everyone obviously knows. They serve no purpose except to act as rentiers extracting profit at the expense of providers and patients and thus must be eliminated.

Michael Lewis’s book “Premonition: A Pandemic Story” brings into sharp relief the fact that we do not have a healthcare system outside of the VA.

As for opioids? Destruction of economies, insurance companies insinuated into diagnoses, fearful providers and self-righteous bloviating politicians all play a roll.

[WhiskeyGrinder]

23. People who are looking for pain relief are in pain, whether it's from their back, their uterus or

their addiction, and I am fine with giving people the pain relief they need.

[Crunchy Frog]

26. They don't like it when people show up in pain.

At least that was my experience when I had a kidney stone.

They treat you like you're some sort of criminal or degenerate. My own Dr. who I'd had for years treated me that way.

Best insurance against being stuck in unbearable pain with no relief is to get a poppy garden growing. IMHO.

Kratom can also be effective for some chronic pain conditions.

I wonder if and when the pendulum will start to swing in the other direction. I had my kidney stone back in 2015.

[Coventina]

27. Hi there Crunchy! We seem to meet up in these threads!

I remember you describing your horrific experience with the kidney stone.



I am interested in the idea of growing my own poppies. Is there a certain species that is the one that matters?
Is growing them legal?

I remember you mentioning Kratom before. Where does one obtain that?
My understanding is that Kratom is completely legal.

Hope all is OK with you.
I haven't been on DU much lately, been busy in "real life."

[Crunchy Frog]

34. Hi there.

The opium poppy is called Papaver somniferum. I'm not sure about the legality of growing them, but you can buy the seeds online, or even in stores that sell garden supplies, like hardware stores. At least you could just a few years ago.

But actually all you need is ordinary, culinary poppy seeds thatyou find in the spice aisle. Those actually come from poppies that have been grown for pharmaceutical purposes. The seeds are a byproduct that they can make some extra money off of.

Most of them will grow, especially if you keep them in the freezer or refrigerator for a few weeks before planting.

The other thing you can do is buy unwashed poppy seeds, and make a "tea" out of them. Be very careful with them because they can be EXTREMELY potent.

I don't know how easy they are to find now. There used to be several different brands available in bulk at Amazon, complete with reviews as to which were the most potent at any given time. Amazon finally got wise and stopped carrying them, and I think the brands in question may have started washing them as well.

It's been a long time since I was on a big kratom buying spree, but I could probably help you to find places where you can get good info on vendors.

As you can probably tell, I did lots of research, some of it rather risky, after I had my kidney stone.

I'd be happy to inform you about anything I've learned or can find online. Just PM me with any questions.

Sorry to hear that you're in so much pain. Things really suck in this country right now.

[Coventina]

36. Thanks for all this good info!

It gives me some ideas to explore, but I'll PM you if I have questions.

The horrible irony of all this, is that after googling about growing your own poppies, the consensus seems to be that the easier and less risky option (from a potential law enforcement problem) is to just buy on the street.
How sad is that?

For people who are desperate to treat their conditions, they are being driven to the illegal drug trade, instead of potentially just growing a small supply for their own use.
How does that make any sense?

It drives me to despair, because I don't have the first clue on how to find a dealer, much less one that I could trust to be selling a product that won't cause more harm than it helps.

All I want is to not hurt! I am not interested in "getting high": I have a job I love, and want to keep, not to mention a family that I don't want to hurt with either an addiction or accidental death.

Is wanting to be pain-free that unreasonable?

[Crunchy Frog]

37. You're not unreasonable. Our society is unreasonable.

I would give kratom a try first thing.

I can try to find some Facebook pages where you can get good info.

Reddit used to have a really good kratom group where you can learn about, or even interact with vendors, but Reddit changed their policy and they no longer allow vendors names to be mentioned.

The drug warriors are active everywhere.

[JI7]

33. I thought of endometriosis when I read the subject line

becsuse I have read many stories from women who have it that they went through the same thing.

[Ms. Toad]

39. Interesting -

We hoard pain meds for my spouse who has had endometriosis, but she never had any pain with it. The pain she needs pain meds for is for kidney stones.

[Ms. Toad]

38. This is terrifying, and creates a substantial risk that patients who need pain control most

will be denied it.

Cancer often causes extreme pain.

The number of different doctors treating you and/or prescribing for you bumps your score up.

I have two cancers. With each, I immediately gained a team of 3 additional doctors, each of whom might prescribe me opiods for pain control depending on what caused the pain (primary tumor + surgery, chemotherapy, or radiation). or which one happened to respond when I was in pain.

Fortunately, I have not had need of much pain medication - but that is somewhat atypical for cancer patients.

The distance you go for treatment plays a role in bumping your score up.

The second cancer is very rare, and aggressive. The standard recommendation is that I be ***at least*** evaluated, if not treated at a high volume sarcoma center. Those are often quite a distance from where one lives. Had it not been for a diagnosis in December 2020 (near the peak of the last COVID surge), I would have traveled from Ohio to Texas - since that is where the best sarcoma treatment center is. That's quite a distance - and it would also have tripled the number of doctors who might be prescribing pain meds.

I am sick and tired of the misuse of drugs driving medical care, dramatically increasing the costs for those with chronic pain (whose medical visits quadrupled when the limit on pain meds went to 3 months), and decreasing access to the medication needed to ensure that pain does not interfere with recovery.

ETA: And that is why we hoard any opiods we get. If a doctor is willing to give any of us a prescription for pain meds - whether we believe we need it or not, we take it. I don't use many (my post-surgical pain is typically limited to 3 days, max, more often 2. Doctors typically give me 7 days worth). Any we don't use are tucked away for my wife's kidney stones We probably have a month's supply stored up - which we would have no need to hoard if access to pain meds were more sensible. My wife has had kidney stones 4 times. They never pass, but doctors won't do the stone busting treatment until she tries to pass them. Her urologlist can never see her in sooner than 2 weeks, and even though we all know what is causing the pain, and that he can't do anything for her until she tries to pass it, he can't call in a prescription to manage the pain.

[OhioChick]

40. The sad thing is...

You can't blame all doctors.

My kids are only allowed to write "X" amount of scripts for narcotics per month, if they go over that amount, they could have their licenses revoked.

It is all kept track of in a data base.