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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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  • What these Government agencies are doing is fighting chronic pain disease patients. We use legitimate prescription medications for a disease. The crisis is that they are targeting the wrong people. Chronic pain is now the epidemic. We are being caterogized and descriminated against for a medication we require to reduce our pain. No other chronic disease patient is targeted for their use of a prescription medication.
    What about the good of opioid medications. They are lifesaving medications for millions of Americans who live in constant, debilitating, chronic pain.
    The misuse of medication by legitimate chronic pain disease patients is .02-.6 %. It is misuse of illegal opioids that leads to abuse by citizens.
    The FDA, DEA, CDC and all other Government agencies need to go after the illegal fentynal and heroin producers and manufacturers, also, methamphetamine, cocaine and all other illegal drugs. Addicts will always have the illegal drugs and find a way to get them.
    Why is it that our physicians are no longer able to Doctor us? Why is it that these agencies can now Doctor us and practice medicine without a medical license? I believe it is up to our physicians to treat us adequately and humanely with medication, so many of us desperately need, for our disease.
    This targeting is wrong! It is discrimination against legitimate chronic pain disease patients who use our MEDICATION responsibly.
    Addicts will find and use the illegal drugs of their choice. We pain disease patients are not addicts, we are PATIENTS, with an incurable disease. Medications are readily available to us for our conditions, that happens to fall into the same category as the illegal drugs.

  • When will the government EVER figure out that there will ALWAYS be a drug problem.In the 80’s it was cocaine.The 90’s it was Methamphetamine and so on.Their answer is to squeeze it out and that never works.All they are doing is making life even worse for people like my 67yr old mom who has every orthapedic problem in the book and has hell getting meds for it.I said yrs ago when they started squeezing the drs and pharmacists too hard that the only thing that was gonna do was push the addicts to heroin and thats EXACTLY what happened.I understand that there has to be tight regulations and the people just seeking highs need to be weeded out but you dont punish millions of decent law abiding citizens who are in absolute agony every day of their lives for the mistakes of others.Opiates are just the new drug of choice.As soon as this gets old they will run to another.The cartels and other scum are who’s benefiting off this bc the heroin and fentanyl substitute are all over the streets.They could take all opiates off thr market and they will still have tons of opiate overdoses bc now its all coming from the streets.im sure some innocent people who are not prone to abusing any drugs or alcohol were accidentally addicted to pain killers bc of few irresponsible drs but most cases of people abuseing opiates is the type people who always want a high and if it wasnt opiates it would be something else.opiates have been around a long time.its nothing new its just that its was their time ti bc the hot drug of choice so listen up drs and dea and cdc…don’t destroy lives of poor people who suffer from severe pain bc of the addictive personality traits of other people who most probably just faked back pain to get pain killers bc all their buddies said they were “the bomb”.my mom has taken 1 vicoden a day for 10 yrs.her pain is severe but she would never take any more.the one was so she could get out of bed.there is no harm in continuing to give them to people who act responsible with them like her.they give blood and urine test to make sure you r taking them and that you take the correct dose.if they have all that they should continue.weed out the losers don’t hurt the innocent who look to you to help give them quality of life

  • You know, they make these maternity vests that fathers can wear that mimic what the pregnant woman goes through. Too bad someone wouldn’t make something like that that would put pressure on their backs that causes pain as well as neuropathic sensations. These vests would not be allowed to come off until they wore it for a week at a minimum. Hopefully the lack of sleep, trying to work while in terrible pain, trying to live a ‘normal’ life would make enough of an impression that they would be more receptive to allowing us to have our meds.

  • i was just wondering if any of those people who are against opioid use for chronic pain have a true understanding of what it can be like to try to go through even one day trying to move fast enough to get away from the nagging back pain that a bulged disk in your back can cause. Also being woke up almost every night and have a hard time returning to sleep only to wake up for work with pain before i even go to start my day.I was a single father for my son and i work for a paving company.i have been taking 3 thirty milligram morphine tabs for approximately 12 years and they work to make my life bearable.I have never asked for more pills because my goal is not to get high or rumdummy i just want to get by without being miserable.i’m not saying this plan is for everyone but it works for me.
    Thanks for listening
    Richard Lawrence
    P.S i am currently 53 years old and have fought this since i was 25 years old.I was running a john deere 450c cat when i hurt myself while trying to hurry for my boss and finish a job i was working on.

  • I was bedridden for 12 years until I finally went to a pain clinic and started taking morphine. I got my life back again! After 15 years of being on morphine with no problems and excellent pain control the pain clinic has been weaning me off my pills, 30 mg a month. I was taking 200 mg morphine a day, and now I am down to zero. Recently I ended up in the hospital with a bleeding ulcer, and needed 2 blood transfusions. A month later, I am still weak and breathless from severe anemia and the ulcer is not healing up. Plus I am going to have a huge hospital bill to pay. All this pain and suffering because I took NSAIDS to replace the morphine. The pain clinic told me 6-8 a day would not hurt me, yeah right.
    So now I have intense back pain PLUS stomach pain. The pain clinic never gave me anything for withdrawal , if I sleep 5 hours a night that is a good night. I get very little sleep, I wake up every hour, and never do I have a sense of well being anymore.
    I am totally MISERABLE!
    What really makes me angry is that I never abused my pain meds in any way. I never needed a bigger dose, I never felt drugged up, I just had excellent pain relief.
    This is just ridiculous. I am going to try laser therapy, its like my last resort. I am praying it works as I am my 82 year old mother’s caregiver, and if I can;t take care of her anymore she will have to return to the nursing home.
    I don’t think these pain clinics realize what their patients go through and how not having decent pain control can ruin your life.
    I just hope I do not end up bedridden again, but its a real possibility.

  • I felt sickened as I read this article. I am a 55 year old registered nurse with 3 children. I suffer from chronic pain with fibromyalgia and degenerative disc and joint disease…diagnosed when I was 26 years old. I am currently taking 4 Norco 10/325mg per day and Gabapentin 300mg 3 X A day and Ibuprofen 800mg 4 X per day. This does not make me pain free by any means but I am at least able to work and function. I have been seeing the same group of doctors since I was 12 years old and my main primary care doctors since I was in high school. Lately he has become cold and lacking of empathy with remarks to me like: no one has the right to be pain free, nobody dies from withdrawals, fibromyalgia is just depression, etc. This entire group of doctors has decided to stop prescribing opioid pain medication except to those with cancer. Apparently if you’re dying then suddenly opioids work for chronic pain and if you’re dying you have the right to be “pain free”…as if pain free is even possible…most people with chronic pain are in chronic pain even with pain medication…I know I am never pain free. And I would like to state for the record…I had all 3 of my children without so much as a Tylenol…because acute pain ends…that keeps it tolerable, but chronic pain is different…it is never ending. I am not just afraid, I am furious with people who don’t know what chronic pain is and those who think because they can go on in chronic pain without pain medication that everyone should be able to do the same. I spent more than 20 years in chronic pain before I took a narcotic pain medication and guess what…I wasn’t even prescribed the medication for pain…no my PCP just let me suffer…he never offered me anything for pain…at 27 years old I asked him if I could have an antidepressant for pain…it shocked the shit out of him. I never asked for an opioid pain killer…NEVER. I was prescribed Lortab as an off label use for very severe OCD. It worked very well and the huge and added benefit was that for the first time in my life I got relief from neck and back pain that had plagued me since I was a teenager. It is now about 15 to 20 years later and that doctor has long since retired and my PCP was more than fine with taking over the responsibility of managing my medications…now he can’t handle the scrutiny but expects me to continue to work in a very demanding job in chronic and untreated pain. I’m sorry that there are so many people overdosing on opioids but I should not have to pay the price and suffer because these people and their doctors weren’t more careful.

  • I have been reading articles all over the web about how many people want us CPP’s to be taken off our Opioids. One of which is the FDA. This article ran in the MedPage Today:

    http://www.medpagetoday.com/painmanagement/painmanagement/65894

    I started on Opana this year to manage my pain and it did a wonderful job. The problem is, it is sooo expensive (as are all the new tamper resistant extended release Opioids) that I was driven into the donut hole in April. I’ve never had any exposure to the donut hole so didn’t think about it when I started the drug. All I knew was that I had been forced off my other Opiate medicine last year and on to Morphine (I’ve never understood it, saying one Opiate is preferable to another) which made me incredibly sick even on anti-emetics. I was so disappointed to have to stop taking it. Then I realized that I’m stuck, Morphine is the only ER Opiate that is a generic out there. So that means even though the politicians and all the others that want to force us on to the ‘new’ tamper resistant ER Opiates, we will not be able to afford them!!! ALL of them have patents that won’t run out till 2020 or later. So, what are we to do in the meantime??? Why is the FDA allowed to dictate which meds should be revoked? Just because it’s not totally tamper resistant shouldn’t mean it needs to be taken away. Totally tamper resistant isn’t out there and if one was I wonder if it would really work.

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