Pain Mgmt Leader Criticizes Opioid Restrictions

A ‘civil war’ over painkillers rips apart the medical community | By BOB TEDESCHI @bobtedeschiJ  Jan 17, 2017

I see it as a great positive when one of the leading pain physicians in one of the leading pain management programs at one of the leading universities (Stanford).

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.”

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.

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.”

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.

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.

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 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 [opioids], 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.

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.

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.

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.

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.

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.”

Some clinicians trace the early roots of the opioid crisis 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.

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.)

“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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5 thoughts on “Pain Mgmt Leader Criticizes Opioid Restrictions

  1. Allison Morris

    From personal recent and current experience that this is not what is going on at Stanford pain management and that they are completely against opioids. Dr Mackey is out of touch with what those under him are actually doing. I saw Dr Mackey 3 years ago and the first thing he did was tell me to stop taking opiates that my primary was prescribing for me which I have been taking for a long time but they started to lose effectiveness. I did stop taking them on my own and decided to follow their instructions. Dr. Mackey started me on low-dose Naltrexone program. Tried it for three months had zero pain relief but also had fatigue which may just be because I was exhausted from being in so much pain. After that I could not get a visit with Dr. Mackey again because he is too busy doing research and giving lectures and writing articles. So they move me to a nurse practitioner. I saw the NP for about five months during which time I was prescribed a number of different drugs again none of which helped with pain at all plus add a lot of side effects. I was pretty much bedridden by this point. In pain and frustration demanded that they switch me to a doctor. They switch me to Dr. Newmark who is 100% no opiates. Over the last 2+ yrs he has prescribed probably about 6-7 different drugs, sometimes having me on four different drugs at the same time, none of these provide any pain relief and they don’t seem to get it. Keep saying I don’t meet the requirement for opiates in that opiates can cause constipation. I would gladly take constipation over debilitating pain. I’ve stopped going to see him because I feel hopeless and what’s the point. But now I want to go see Dr. Newmark again and bring a copy of this article.

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    1. Zyp Czyk Post author

      What a horrible experience!

      I was already on opioids when I thought I’d give their program a try several years ago. During my evaluation, the PT was great and the psychologist too, but then I saw a female MD and it was a disaster.

      She was callous and indifferent and as she was walking out of the door, she casually said: “First we’ll get you off opioids because WE haven’t found them effective for fibromyalgia”. (I had been wrongly diagnosed with fibro and they had no intention on investigating further and discovering that I actually had a genetic condition).

      Especially after hearing your story, I’m so glad I had the good sense to leave and not enter the hell of their pain mgmt program. When I told my PCP the story, she told me she could prescribe opioids for me! That was a true miracle and I’m grateful every time I’m having intolerable pain. I would not be alive today without proper pain relief.

      A previous doctor had tried all those other awful meds on me and I thought I’d lose my mind – they made me sick and crazy with side effects and also did zero for my pain. I tried so many “alternative medicine” methods too and spent thousands of my own money in desperation, still without relief.

      I hope showing this article to your doctor can make a crack in their stupid blind wall of total resistance to opioids. What they did to you isn’t practicing medicine – it’s simply torture.

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      1. Allison Morris

        Thank you for your reply. Makes me know I am not alone with my experience at Stanford. Twice I have told Stanford personnel that I was suicidal because I am in so much pain and agony and have only pain and no enjoyment. The last time was Dec 2016 in my visit with Dr. Newmark. His response was to reduce my Namenda, recommend I increase my vitamin C intake to 2000 mg/day and again suggest I sign up for their sleep study. Why would reducing a drug that currently helps zero help more? Curious – anyone else have this at Stanford where when you complain about pain they keep wanting you to sign up for their sleep study evenif you have no problem sleeping?

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        1. Zyp Czyk Post author

          I guess it’s the only thing they can offer to still make money off you :-)

          However your sleep quality might be low. I take trazadone to get the best sleep I can. What disorder have you been diagnosed with?

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          1. Allison Morris

            I feel like they are short sleep study patients and need more volunteers. Over the past 3 years pain management has suggested it to me at least 4 times. I have EDS Type III and spontaneous cerebral spinal fluid leaks. Plus the secondary issues that come with those like IBS-D, migraines, osteoporosis, spinal stenosis, etc. I should also add that Dr. Newmark said he presented “my case” to a review panel and they agreed I did not meet the criteria for opiates. However, I, the patient, was not allowed to appear before the review panel and of course when your own doctor is the one presenting a case why you should get opiates with no rebuttal there is no reason why the panel would disagree. I should have been allowed to appear before the panel.

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