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ALO ALTO, Calif. — For Thomas P. Yacoe, the word is “terrifying.”

Leah Hemberry describes it as “constant fear.”

For Michael Tausig Jr., the terror is “beyond description.”

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All three are patients struggling with chronic pain, but what they are describing is not physical agony but a war inside the medical community that is threatening their access to painkillers — and, by extension, their work, their relationships, and their sanity.

Two years after the United States saw a record 27,000 deaths involving prescription opioid medications and heroin, doctors and regulators are sharply restricting access to drugs like Oxycontin and Vicodin. But as the pendulum swings in the other direction, many patients who genuinely need drugs to manage their pain say they are being left behind.

Doctors can’t agree on how to help them.

“There’s a civil war in the pain community,” said Dr. Daniel B. Carr, president of the American Academy of Pain Medicine. “One group believes the primary goal of pain treatment is curtailing opioid prescribing. The other group looks at the disability, the human suffering, the expense of chronic pain.”

Pain specialists say there is little civil about this war.

“There’s almost a McCarthyism on this, that’s silencing so many people who are simply scared,” said Dr. Sean Mackey, who oversees Stanford University’s pain management program.

“The thing is, we all want black and white. We don’t do well with nuance. And this is an incredibly nuanced issue.”

Nuance does not matter to people like Tausig, 43, who has been unable to work or socialize since 2008, when the last of his five spinal reconstruction surgeries left him in constant pain.

He last got a taste of life without opioids a few years ago, when his pharmacy’s corporate parent imposed opioid-distribution limits, forcing him to find a new one.

“Those three days were among the worst of my life,” he said. “I wandered the house at night, legs shaking like a whirling mass of putty, sleepless and without respite from the pain.”

Now, with regulators and health industry leaders continuing to bear down on opioids, and the arrival of a new president whose statements indicate that he might further restrict opioid distribution, Tausig’s worries have deepened.

“It’s put the fear of God in me.”

Michael Tausig has been unable to work or socialize since 2008, when the last of his five spinal reconstruction surgeries left him in constant pain. Elizabeth D. Herman for STAT

The medical community’s battle over painkillers burst out into the open in late 2015, when the New England Journal of Medicine published a commentary in which two doctors argued that chronic pain patients should focus not on reducing the intensity of their pain, but on their emotional reactions to it.

The authors, Dr. Jane C. Ballantyne, the president of Physicians for Responsible Opioid Prescribing, and Dr. Mark D. Sullivan, argued patients should pursue “coping and acceptance strategies that primarily reduce the suffering associated with pain and only secondarily reduce pain intensity.”

The pair argued that patients who mainly focus on pain intensity tend to escalate their doses of opioids and worsen their quality of life.

On NEJM’s website, the comments section devolved to a flame war more suited to YouTube than the staid pages of the nation’s top medical journal, with some accusing the authors of a lack of compassion, and others lauding them for a sane approach to public health and addiction prevention.

But the comments also laid bare a fundamental problem in the debate over opioid treatments: Neither side has much evidence about the benefits or consequences of long-term use because almost no such studies exist.

A few studies have identified a litany of side effects beyond addiction. One survey, by palliative care doctors Mellar P. Davis and Zankhana Mehta, pointed to symptoms including increased risk of depression, anxiety, cognitive impairment, and sleep apnea, among other issues. Patients with lung disease were also more likely to die when their treatment included opioids, according to the survey’s authors, who practice at Geisinger Health System.

Stanford’s Mackey said those risks are important to recognize. But, he said, nearly 15,000 people die a year from anti-inflammatory medications like ibuprofen. “People aren’t talking about that,” he said.

Mackey says doctors being trained at Stanford’s pain center have grown increasingly fearful about prescribing opioids. Elizabeth D. Herman for STAT

On a Monday morning last month, Mackey entered an exam room to greet one of his patients who uses opioids: an 81-year-old physician with a bad back.

The doctor, who agreed to be interviewed on condition of anonymity, said he’d routinely cycled to work until relatively recently, when a degenerative spinal condition worsened. Surgery in October failed to help, and now, he told Mackey, he can only get out of bed if he takes five opioid pills at dawn and sleeps another half-hour before rising.

The doctor wanted to find a way to address his back problem without the painkillers, which, he said, cloud his thinking.

Mackey spent nearly 30 minutes with him, talking about scans, symptoms, and previous treatments. He planned a follow-up consult in January, when another set of test results would arrive.

Over lunch, Mackey reviewed the case.

“Do you get any sense from him of drug-seeking behavior?” he asked. “Is he selling this stuff on the street or trying to score some synthetic fentanyl or heroin? No. All he wants to do is be more functional so he can see patients and be relevant and have a life.”

Mackey also wasn’t sure the opioids were causing the cloudiness. The patient’s cognitive issues could be the result of non-opioid medications he takes before sleeping, so dialing down the opioids without first exploring other options might harm him more. Without them, his pain would be so severe he would be relegated to bed.

“If you’re 81 and you stop getting out of bed, it’s a slippery slope,” he said.

Mackey, a past president of the American Academy of Pain Medicine, has built Stanford’s pain center into one of the nation’s most comprehensive and well-funded pain research operations. But he said doctors being trained there have grown increasingly fearful about prescribing opioids.

“In many cases that can be healthy, but I’d like to see a thoughtful, balanced approach,” he said. “Opioids are a tool — they’re more often a fourth- or fifth-line option for me.”

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Mackey recalled the case of a patient who had crushed his foot in an accident and undergone 10 surgeries that failed to diminish his “burning, terrible pain.” The patient now relies on opioids.

“People will say, ‘This guy’s on way, way too much opioid medication, you have to take him off,’” Mackey said. “But guess what: He gets up every morning and goes to work and does his job, and he’s been on the same regimen for years and years and tried everything else first.”

Even some of Mackey’s colleagues have issues with that kind of thinking.

Dr. Anna Lembke, who practices alongside Mackey at Stanford’s pain clinic and is chief of the Stanford Addiction Medicine Dual Diagnosis Clinic, published a book about the opioid crisis last year. It was titled: “Drug Dealer, MD: How Doctors Were Duped, Patients Got Hooked, and Why It’s So Hard to Stop.

Lembke believes that long-term opioid use can cause patients to perceive pain even after the original cause of pain has cleared. Some patients, she said, find themselves free of pain only once they have endured the often agonizing effects of opioid withdrawal.

“That’s what we’re seeing again and again,” she said.

Lembke believes people with chronic pain who have taken opioids daily for long periods may never be able to break their dependence on the drugs, and may need permanent doses of medications like Suboxone, which is commonly given to people with opioid addictions.

But chronic pain patients who have not yet started on opioids, she said, should only take them intermittently — “like every three days or so” — to avoid addiction.

The American culture has grown too intolerant of pain, Lembke said.

“Whether it’s surgery or women going into childbirth, there’s an alarmist reaction to pain, and it’s contagious and makes more people anxious, which makes the pain worse,” she said. “We’re terrified to experience pain.”

Mackey has built Stanford’s pain center into one of the nation’s most comprehensive and well-funded pain research operations. Elizabeth D. Herman for STAT

Those who experience chronic pain say these views embolden clinicians, pharmacists, and others to treat them like addicts and criminals.

Hemberry, a 36-year-old multimedia specialist in Leavenworth, Wash., suffers from a connective-tissue disorder called Ehlers-Danlos syndrome and trigeminal neuralgia, an often-excruciating nerve condition for which she occasionally takes opioids.

She heard Lembke interviewed on NPR recently and was bereft. “Every pain patient is now an addict and a failure,” Hemberry said.

Last March, the Centers for Disease Control and Prevention issued guidelines for opioid prescriptions. Those guidelines focused on addiction prevention, opioid trafficking, and medication diversion, and included stern cautions against using the drugs for chronic pain.

To Hemberry, the guidelines seemed reasonable. “But many doctors and administrators have taken a hard-line ‘no opiate’ stance,” she said, and go to absurd lengths to enforce it.

“What people forget is, those who end up on opioid pain management have usually tried everything else unsuccessfully.”

Thomas P. Yacoe, who suffers from chronic migraines

Earlier this winter, Hemberry recalled, she went to the emergency room with a migraine headache, a frequent symptom of her medical conditions. She was seeking a saline drip — one of the few treatments that has helped her pain — and said she wasn’t seeking opioids.

The nursing staff nonetheless grilled her on her medications and chided her for taking too many pills, even though her daily medications are non-narcotic. She turned her head at one point and started sobbing.

Others report a similar lack of empathy.

“What people forget is, those who end up on opioid pain management have usually tried everything else unsuccessfully,” said Yacoe, 61, who suffers from chronic migraines. “I stayed away from opioids for decades. It was really and truly a last resort.”

A patient room at the Stanford University Center for Back Pain. Elizabeth D. Herman for STAT

Some clinicians trace the early roots of the opioid crisis not to the pharmaceutical industry’s marketing of controlled-release morphine pills, but to a 1986 study of 38 non-cancer patients performed by palliative care doctors at Memorial Sloan Kettering Cancer Center.

Most were treated with oxycodone, methadone, or levorphanol in small daily doses — less than half the surgeon general’s current recommended starting dose — and 24 reported acceptable or adequate pain relief, while two patients developed “management” problems with the drugs. (Both had histories of substance abuse.)

According to Carr, of the American Academy of Pain Medicine, the conservative opioid treatment approach used in the study, and the modest benefits reported, reflect the current practices and expectations of many doctors.

But a growing number, he said, are being pressured into a zero-tolerance policy.

“Because if one isn’t anti-opioid enough, there’ll be protests,” said Carr, who is also founding director of Tufts University’s Pain Research, Education, and Policy Program.

Other experts note that, as opioid restrictions tighten, the medical system and insurance industry have done little to support opioid-withdrawal efforts, help more physicians learn how to help patients manage pain, or enable access to alternative therapies.

In some cases, patients seeking to treat their pain have turned to street drugs like heroin or synthetic fentanyl, while others have instead chosen suicide. (In one high-profile case recently, a man who committed suicide left behind notes saying he could find no help for his chronic pain; at least two of the roughly 20 patients interviewed for this article said they had considered suicide because of their pain.)

Everyone wants the number of opioid overdoses to fall. But patients like Tausig don’t want to be made to suffer.

Tausig, a single father of two teens, said that every month he needs to fill a prescription, he’s fearful it will be denied.

Whenever he thinks he might meet with a new pharmacist or clinician, he dresses neatly to hide his tattoos. He said he thinks they can cause people to rush to judgment or even stigmatize him as an addict.

“You’ve got the wars on the medical side, but then you’ve got the governmental people stepping in, who have no idea,” Tausig said. “All they know is drugs: bad.

“They don’t see a struggling single dad in the most expensive place in the US who’s just trying to get through the day.”

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  • It’s been several 5 month’s since my pain meds were stopped. I commented here a few times. Signed petitions recommended by Paulette..thank you.
    I had to have a mental health evaluation for consideration of continuing/getting back pain medication. That was done August 9th. I had a follow-up for a thoracic block 11 August…here I’d be getting what Jesse (mental heath guy) and the pain management people decided. After everything I’ve read I knew I’d never get approved for pain meds again. At the end of my follow-up appointment Jennifer say’s “your mental health evaluation”…. I kinda didn’t wanna hear ..not sure what she really said..”we’ll start you out on a low dose and go to higher long lasting pain meds”….. I was shocked and relieved as my pain had become non stop kill menow pain.
    Hopefully others have this option.
    Thanks for listening

  • Corrupt state politicians, the oligarch owned mainstream media, and the bought-and-paid-for DEA have colluded in sync to invent the entire “Opioid Crisis”. But please read the document I posted below, which was written in 2005…It proves that the imaginary “Opioid Epidemic” was first invented in 1999, when Congress pressured to shut down the DEA for it’s massive failure in the “war on drugs”. https://www.cato.org/publications/policy-analysis/treating-doctors-drug-dealers-deas-war-prescription-painkillers

  • I have experienced both sides of this.

    I shattered the bottom half of my knee (schatzger type VI tibial plateau fracture for those interested to Google) and also had Compartment Syndrome (Google) in all of the muscles below my knee.

    Docs at the trauma center wanted to amputate, and 15 years later I would happily go RIGHT NOW if they would take it off, but I am stuck because when I was too messed up to make the decision for myself my (now ex) wife refused the amputation and forced a “quad compartment fasciotomy” (Google) – cutting open every muscle in my lower leg.

    I had a total knee replacement at age 42, which was SUPPOSED to eliminate my pain but made it exponentially worse. A revision surgery 6 months later was no help.

    The pain is excruciating, and fentanyl patches were a godsend. It still hurts but the medicine makes it tolerable, I am disabled but can have something resembling a life.

    I sleep with a cryotherapy (Google) device all night every night, and an IR thermometer which shows the bad knee to be 102-104 degrees at the skin while the good one reads in the low 90s proves (along with other obvious physical signs) that SOMETHING is seriously wrong in there but numerous surgeons have been unable to determine WHAT – so my only option offered is to “take the implant out and try again.”

    The leg is such a mess I was told from the beginning I’d only ever be able to get 2 implants which normally last about 10-15 years depending on activity. Were I to take the shot in the dark of a redo, with no guarantee it would fix ANYTHING, THAT WOULD BE 2 and I’d be unable to walk at all before reaching age 60 or so. Not really an option.

    Personally I HATE the way the opioids make me feel, I have never taken more than prescribed, and occasionally void and give back that month’s prescription paper when I have a month worth left from past months that I did not take. They make me nauseous, cause insomnia, and turn my guts into concrete no matter what I try to prevent it. A man should not need stitches after using the “facilities”, not to mention the pain involved there too.

    Further, as time passed and the tolerance-genie raised its ugly head, I found I’d gone from a 25 mcg fentanyl patch up to 150 mcg. I was so sick I could barely function due to the well documented fact that use of opioids destroys a man’s body-chemistry – yet none of the Docs involved considered that possibility and I had to figure it out for myself.

    I also figured out that it was possible to “reset” that tolerance-mechanism by REDUCING my dose below the target, suffering a couple of months of increased pain and constant minor withdrawal symptoms (physical dependence and addiction are NOT AT ALL the same thing) while my brain removed the extra opioid-receptors that create tolerance, then going back up to the target dose – which then worked as well as before.

    With medical supervision (withdrawal can cause strokes, seizures, etc) I have succeeded in lowering my fentanyl dose from 150 mcg to 50, and the “breakthrough pain” med from 180 tablets per month to 100 – I intended (still do) to go lower still, but life circumstances became such that I simply couldn’t handle the added stress of further reduction at this time.

    Again, that I reduced AT ALL was at MY REQUEST – so it should be hard to call me an “addict”…

    Unending, excruciating pain will make you consider things you’d never otherwise dream of, though for me I never had thoughts of suicide, I did seriously consider parking outside the ER, putting a tourniquet above my knee and blowing the bottom half off with a shotgun in order to force them to amputate as they should and would have (if not for a woman who readily admitted that she made the decision because she didn’t want to be married to a guy with a stump) and bring an end to my suffering.

    I thank God that I found a Pain Management practice who gave me the opioids that make my pain tolerable – though the fact that they missed the sickness the meds caused me, and just increased my dose as tolerance built over time – but then that Doc was getting paid $185 for a 5 minute visit every month when I had to pick up prescription papers – I guess $17,760 for an 8 hour workday is a decent wage, but I digress…

    Studies show that people like me – who REALLY DO have extreme, chronic pain, get no “high” from prescribed doses, while those who abuse them are almost entirely folks who either never really needed them or continued taking them after the genuine need had passed.

    Still, I’m treated as an addict by “substitute” pharmacists who don’t know me or my history, and others who simply can’t comprehend genuine suffering.

    Even my Doc demands random urinalysis to check that I am not taking more or less than prescribed – less being a possible indicator that a patient is selling their meds to addicts, as well as being occasionally ordered to “come to the office tomorrow and bring your meds” so they could count and verify that the count matched the prescribed dose for the days that had passed since the prescription was filled. Even 15 years later, having passed every single test with flying colors, I still have to do this!

    Thankfully my state finally passed a medical MJ law, and in the next 6 weeks or so I hope to begin transitioning off of opioids entirely. I’m not sure yet how that will work – the random urinalysis checks for illegal drugs as well, MJ being one by their definition despite state law, I guess we’ll see… I may need the fentanyl for life but could eliminate the need for a second opioid for “breakthrough pain.”

    Bottom line, Please – don’t judge me or others until you have limped a few days in my shoes! Try to imagine having a tack sticking through your shoe-sole, becoming more painful with every step and you MIGHT have SOME idea of a fraction of the pain I live with daily.

    Being honest, I probably would have ended up taking my own life if not for the pain relief opioids have given me, despite all the negatives that come with them. The thought of having to live out my life with that level of pain is likely more than ANYONE could bear!

    Personally, I think those who abuse medications would be abusing heroin if the meds were not available, so we are really discussing a non-existent issue. I’ve never met anyone who really needs opioids who didn’t despise them as I do.

    Hopefully this will provide some perspective…

  • I’ve had to take five days of paid vacation time in my quest for a one-time prescription for flank pain this week. Because my regular doc is overbooked, I went to one of her colleagues and the ER for treatment. I have none of the indicators of drug seeking, and yet, both refused to give me anything stronger than ibuprofen, even after I told them ibuprofen is not working. I’ve had a bad back for 40 years, and for 40 years, every time it flared up I got codeine-plus-whatever, took the pills, healed, and never asked for a refill. That is not the behavior of a drug-seeker, but of a pain-sufferer.

  • There are those who do need pain meds–like the comment below. Here is the problem. We have an epidemic of chronic pain due to poor lifestyle. In other words there are too many obese people. This is from a PT mind you who sees it everyday–and again–I did not say EVERYONE.
    But most of the chronic pain is due to obesity and anxiety and inability to control their lives or live in a healthy lifestyle. We should not be researching for these types, catering to these types or helping these types. They have a simple choice–change the lifestyle or be in pain. We are bankrupting the system with the obese and their multitude of problems that we can’t solve. We keep rotating in physical therapy which is a waste of time and a huge waste of money. Those are the people that need to be targeted–and by the way, many of those are on disability for basically being fat. But it will never get solved in a society that can’t even admit that fat isn’t healthy.

    • Interesting take from PT. If you could back that up with data or research.
      The comment “epidemic to poor life style” is quite interesting as well.
      Hmmm, where do I begin?
      Obesity is a response to a stimulus therefore it is brain driven and by human genome code where everyone is different. Therefore education on the world stage has ranked USA as 33. Considering some states have been left in large debts as they migrated to other countries left people unemployed, bankrupt, suicides, and the list goes on.
      Usually, in some cases of obesity, it’s an event psychological and to discover that by one self need mental health coaches. Since your in PT, the money is not there in mental health as it would solve many issues.
      Is the USA a humanitarian country, not really. I won’t get into the over 100 drinking water contamination systems however you can look up Erin Brovkovich for the environmental problems.
      Wages have not kept pace inflation for the past 40 years. Therefore purchasing quality food or adequate nutrition is expensive to those that live paycheck to paycheck.
      The human brain pleasure centr when a child is born to nearly walking needs food, love / nurturing, social acceptance, and what they discover with hands down the diaper.
      Disrupt anyone of those things or activate the human genome in the pleasure center of the brain, we have a plethora of healthcare problems with obesity being one of them. It’s not just about nutrition as that’s one component to many for responsible chronic pain management.
      It would be interesting to see your research that nutrition will fend off even some obesity along with any mental health guidance and if you offer nutrition in PT how that works out under this multi layer one issue.

    • Really Charles???and exactly what is your MEDICAL DEGREE?CAN U ANSWER THIS FOR ME,,OH ,”GOD,” OF PAIN MANAGEMENT,,,WHY,,WHEN I WAS 5’7 AND MAYBE 100 POUNDS SOAKING WET,,FOR IT HURT TO EAT,,HOW MY OBESITY CAUSED MY CHRONIC PAIN??OR HOW OBESITY CAUSED EVERY MALE DOCTOR ON THE PLANET TO SAY,,OH SHE LOOKS GOOD,,,WHEN U COULD SEE EVERY RIB IN MY BODY,,EVERY BONE IN MY BODY,,,FROM A MISSED,,SIMPLE GALLSTONE LODGED IN THE PANCREATIC DUCT??YET,,FOR 15 F—- YEARS,,,BECAUSE GOD KNOWS WOMEN OVER-REACT TO PHYSICAL PAIN DON’T U KNOW,,,I WAS FORCED TO SUFFER IN SEVERE PHYSICAL PAIN DUE TO A WHOLE FREAKEN ,”GALLBLADDER THAT LOOKED LIKE A GRAVEL PIT ,COMPLETELY CALCIFIED,,FEELING EVERY SINGLE ONE OF THE STONES LODGEING GOD KNOW WHERE,,BUT HOW OBESITY TOLD THE E.R. DOCTORS I WAS A DRUG SEEKER,,NO PAIN MEDICINE FOR U,,GO HOME IN FORCED PHYSICAL PAIN FROM PANCREATITS ???TAKE A ASPIRIN,FOR WE KNOW AS DOCTORS AND SHRINKS CHRONIC PAIN IS AL IN YOUR HEAD,, OH AND FOR GOOD MEASURE PT ,,STATES CHRONIC PAIN IS DUE TO YOUR OBESITY AT 5/7 100 POUNDS??
      SEE,,,ITS PEOPLE LIKE U,,,,WHO HAVE STUPIDILY USED YOUR BRAIN FOR BIGOTRY/PREJUDICE AND CRUELITY TO HARM PEOPLE..EXACTLLY HOW IS TELLING SOMEONE THEIR FAT GOING TO HELP STOP THEIR PHYSICAL PAIN FROM SURGERY/SPINAL CORD FLUID LEAKS/OUR SCARRED THORCIC SPINAL CORD??
      HEY I GOTTA A OPINOIN too,,WHY NOT TRY A DIFFERENT PROFESSION,,,SINCE YOUR COMPASSION AS A HEALTH CARE WORKER IS IN THE GUTTER!!!maryw

    • I agree in many cases.

      5# makes a difference in my pain, so I’ve been careful about my weight – though the 50+# of natural muscle I lost due to my body literally eating itself due to opiod induced body chemistry problems (any man on these meds- GET YOUR TESTOSTERONE LEVEL CHECKED!!) probably helped reduce pain somewhat, being so sick I looked like a cancer patient, and could barely get out of bed make it something I wish hadn’t happened…

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