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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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  • I am not going to argue the merits of pain from a medical professional for I not one. What I am is a person in pain. A woman that received high dosages of steriods over 30 years ago to keep me alive. Now I have Osteonecrosis in almost all my joint. Ankles collapsed also stage 3 and 4 in shoulders knees wrists fingers toes. Already had bi lateral hip replacement at 22. My doctors does not see me as a candidate for unnecessary surgery. The pain of AVN is beyond what a human should endure. Now tell me why I do not deserve opioids? Btw, NSAIDS over the years left both my liver and kidneys panels too high. Again tell me why I don’t deserve pain relief?

    • Amen Bridget,,,this is a great point,,,,it should ALWAYS,ALWAYS be between us and our doc’s,,,Not,,the Dr.Government,,It should always be what-ever amounts works for EACH INDIVIDUAL ADULT person,,,A guy 6’4 and 275 pounds will feel nothing from a 5 mg oxy,,,where as a women w/thee exact same condition,,who is 85 pounds and 4’6 will feel effects more,,,based upon her weight/height,,,Thats called scientific fact/logic/humane,, common sense care,,,,yet that was never ever even conscider’d in sick o’s[Klondike bar] blueprints for thee torture and genocide of the medically ill in America,,,He put a shout out to all cpp’s to twitter him,,w/the name of the Doc and clinic who has taken away our medicines,,,and when 99% put his name down,,and PROP- agenda,,,he censorred them all,,The very fact that klondike bar cannot even see the reality he has caused,,is both disturbing and telling!!!!,,Im tell’n u doctors,,,history will be on the side of HUMANE Care /EFFECTIVE CARE,, for thee adult populous in CPP,,,,,all u guys who think this ebm or your opinion of forced endurement of physical pain for cpp’s ..Once the public gets a full grasp of what u all have done,,,,it will be like awakening a sleeping giant,,Forcing humans to endure physical pain from medical illness..Locking them up forcible in warehouses like Waverly,Pennhurst,,,This type of prohibition has never worked,,because it inhumane,,,,,and its time will come to a end,,,Hopefully sooner then later,,All u Doc who have already forced/dropped your patients for your own personal liscence,thus personal gain,,,thus forcing another human being to suffer in agonizing physical pain,,when u had the means to help them,,,,,,good luck,,,,,,when your time comes,,jmo,Got to, go,,have to function whilst I have my MEDICINE!!,THUS LESS PHYSICAL PAIN TO BE ABLE TO FUNCTION,,, dahhh,,,maryw

  • pss,,,Again,,,please,,,,can u physicaly feel the physical pain of another???Is it not thee goal of Doc’s and society as a whole to be a humane society?But,,,again,,simply a answer to the very 1st ??,,can u physically feel the physical pain of another??Thus,,u believe your 25 years working in the field of pain management justify’s you making that decision,on who will get access to effective medical care to lessen severe physical pain via effective medicines,like opiate MEDICINE?Maryw

  • Does the author know about #RegenerativeMedicine?
    Does he know about hyperalgesia when withdrawing opioides?
    It’s a matter of humanism with patients? Or just a topic related the pharmaceutical industry…

    • Mr.Correa,,Do u have the capacity to physically feel the physical pain of another?,,If not,,perhaps you can enlighten me on why anyone would think they have the right to force physical pain onto another living entity via denying them access to effective medical care to lessen severe physical pain caused by medical conditions?Why medical reasearch using rats,opiatephob patients,,is even considered factual science/research of hyperalgesia?I could tell u my medical history,,and I can tell you when medical errors,desease process etc,,inability for ANY medical imaging tests has not thee capability to see soft tissue damage,,your ,”regenerative medicine,” will never apply,,,,But again,,my primary question to you is,,,Are u capable of physically feeling the physical pain of another?Thank u for your time in answering,,,maryw

    • Dear Maryu,

      25 year experience with pain management as Anaesthesiologist permit me to understand “just a bit” of Pain and about opioids…

      It is not the matter to suffer cáncer in order to understand about cáncer…

      Medicine trends are changing from “consensus medicine” to “Evidence-based Medicine” and “Patient-based Medicine”.

    • Dr Correa: please expand on your question “Does he know about hyperalgesia when withdrawing opioides?”

      I’ve been writing for several years on issues surrounding opioids, as a technically trained non-physician patient advocate. In that context, I interviewed Dr Forest Tennant, MD, a few months ago. He is editor emeritus of “Practical Pain Management”, a highly regarded newsletter for professionals in the field. Tennant told me that in over 40 years of practice in pain and addiction management, the only instances of “hyperalgesia” that he’s seen have been in patients maintained on intra-thecal pain pumps. Likewise, no consensus criterion exists for arriving at a differential diagnosis of hyperalgesia, or even for defining what it actually comprises as a medical entity. I must wonder if some physicians assign this term uncritically to patients who actually suffer from genetic polymorphism in the genes which determine the activity of the six key enzymes in the liver which establish metabolism of most meds. Please share your thoughts on this.

    • Your idealog of evidence based medicine is exactly what dam near killed me,,literally!20 years as a CPP experience,,I too know a lot via forced endurement of physical pain,,via your ideology of EBM,,,,and have the medical records to prove it,,,Truth be told,,most doctors,,will save the career over saving 1 patient life,,and useing EBM,, to do exactly that!maryw

  • From Sherry Sherman on Facebook — Something that needs your action TODAY!

    Dr. Andrew Kolodny has issued an epic challenge to the pain patient community. He wants to know — “Outside of palliative care, dangerously high doses should be reduced even if patient refuses. Where exactly is this done in a risky way?” … and … “I’m asking you to point to a specific clinic or health system that is forcing tapers in a risky fashion.”

    Of course, pain patients must respond. If you have been forced to taper and you have been harmed by a specific doctor or clinic, please issue a tweet in reply to Dr. Kolodny @andrewkolodny. If you don’t have a twitter account, now is a good time to get one. Don’t be shy. Don’t hold back. Tell it like you have experienced it in 140 characters. COPY, PASTE, SHARE.

    Here is an example from my own Twitter account, within 140 characters:

    @andrewkolodny @CDCgov @WarOnPainPts @PainNewsNetwork @NatPainReport I’m one of thousands harmed by opioid denial and involuntary tapers.

  • Please, Please, PLEASE all the people who are putting verifiable information out there as well as statistics, please list the website where you got your information from. The ONLY way we are going to get some form of resolution in our favor is to provide proof to the powers that be that the information they are using (and spouting as facts) is in fact WRONG. That is the beginning we need in order to effect change. I spent hours writing Congressman Rooney an email outlining what facts I knew and what my life is like but of course they are all tied up at the moment with the new ‘health care bill’. His response was “Thank you for your recent e-mail. I appreciate your taking the time to share your thoughts with me and have duly noted them. Hearing your feedback is essential to my work here in Washington and I will keep your views in mind should any relevant legislation come before me for consideration”. That is what we need to do, but we need proof and someone in power who sees things our way. I’ll be glad to see what people post.

    • LD, I read a lot of the literature surrounding the opioid crisis and the government’s war against pain patients. If you’re interested in acquiring a bibliography of over 100 recent sources, then feel free to send a note to lawhern@hotmail.com.

      Some of the names you will want to research: Maia Szalavitz has written extensively in Scientific American and elsewhere, disproving the silly notion that prescriptions of pain killers to chronic pain patients had anything to do with the so-called “epidemic” (other than creating a reservoir of drugs that non-patients diverted to the street). Another well grounded writer is Dr. Stefan Kertescz, who has pointed out that prescription pill counting cannot possibly deal with an epidemic created by users of street drugs. A third voice is Dr. Forest Tennant, editor emeritus of Practical Pain Management. A fourth very fundamental source is an article by three doctors in pain management practice with the (approximate) title “Neat, Plausible, and Mostly Wrong — A Response to the CDC Recommendations for Chronic Opioid Use” See https://medium.com/@stmartin/neat-plausible-and-generally-wrong-a-response-to-the-cdc-recommendations-for-chronic-opioid-use-5c9d9d319f71

      I’m not as optimistic as some folks that the government can be led to see sweet reason or pay attention to facts on the issues surrounding chronic pain versus addiction to opioids. Too much corporate money is going into campaign contributions to keep our legislators compliant for the financial gain of drug companies and insurance groups. I think it will be necessary to sue hospitals and insurance companies for fraud and malpractice. There’s no reasonable hope of suing CDC or FDA.

      I’ve been writing in this field for some time as well. If you’d like to read some of my commentaries, feel free to visit http://www.face-facts.org/Lawhern

      Go in Peace and Power
      Richard A. “Red” Lawhern, Ph.D.
      Patient Advocate

    • If u are looking for truthful data,,,I have posted the stats here and other sites,,about the death rate,ie,,your suicide rate,,since Dr.Government has become judge ,jury and executioner to all thru no fault of their own have chronic physical pain..The site I look’d up the rate raiseing simple was Suicide in 1993 thru 2016,,the web pulled up a exact site,which the Author of the site requires permission 1st,,Soo,,,,but,,Since Dr.Government started playing Dr..the suicide rates have doubled,,ie,,1993 thru 2000,,,DOWN,,, 4.5 %,,,which is about 5,000 human beings,WHEN DOCTORS WERE ALLOW TO BE DOCTORS,,Since 2000-2016,,it has rizen from the year 2000=21,000,,,,to the year 2016,46,000,,,,,,,6,000 alone in 1 year w/those lovely cdc guidelines,,,,Furthermore,,I requested to my Senatore,,,Tammy Baldwin,,,to please allow a box on all death certificates for the coroners to be able to check,,”death due to untreated physical pain,,”’,,,I was told ,,”prove it,”,,NOW THANK GOD,,, I am a sane chronic physical pain person,,, FOR SOMEONE ELSE,, might of done just that,,,by blowen their head off,,,,,,For ask yourself 1 question Mr.Government man,,,,as a human being,,,,,NOT A POLITICIAN,,, a actual human being,,,would u want to live the rest of your life,,in forced physical pain,,every second of your days,,via denial of access to effective medical care to lessen YOUR physical pain,,via opiate MEDICINE???or would u choose death,,to stop that physical pain,,if your MEDICINE to lessen that physical pain was taken by the federal government????
      I can tell you,,10000 of chronic physical pain human beings see this OVER REGULATION of our doctors,are meds,and us as a act of WILLFULL torture and genocide of the medically ill who need opiate medicine to live a life in NO FORCED PHYSICAL PAIN,,,,by the federal government.
      I COULD ON,,, with all the WRONG u government type have done to destroy human beings lives in non-stop physical pain,,,but ,,Mr Lawhern has thee most trust worthy data/information around..U want truth,knowledge in a language u politician can understand,,,u talk to him,,He is very well respected because of his knowledge,his EXPEREINCE,,, with chronic physical pain HUMAN BEINGS,,,and treats all of us w/the respect we deserve,,,,,maryw

    • LD, I always get them crappy letters back from Governors and senators, they’re always telling me how much they’ve done to help me. Now when I get them back they telling me they’re experiencing hi influx of emails and they’ll have to get back to me later on it. You need to join LinkedIn, and read the pain News Network. Richard A lawhern PhD has assembled all the facts to prove the CDC FDA and DEA or nothing but terrorists. If you haven’t seen his post go to lawhern@hotmail.com

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