A ‘civil war’ over painkillers rips apart the medical community — and leaves patients in fear
https://www.statnews.com/2017/01/17/chronic-pain-management-opioids/
PALO 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.”
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.”
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.
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.”
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.”
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.”
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.”
Filed under: General Problems
It truly IS a civil war. I’m guessing Dr Mackey has some pain experience, and Dr Lembke dies not.
This is the pain training most doctors never get.
This was, I believe my first time writing. And yes, it is long
I am due for a re-write; but I am going to get this started-
An interesting tidbit: 1963 GlaxoSmith
Eventually GlaxoSmithKline applied for ~20 patents on the alkaloids of kratom…
Hmmm, Who has ties to this company…
A little bit of why it matters to me:
To the Doctors, CDC, FDA…
You have taken away my pain meds. Put me through withdrawals, without a thought of what that may be like.
I am not a slacker.
I am educated, and if I had things my way, I wouldn’t be taking anything.
I used to be extremely active &
I had plans and goals for my life.
When I turned 16, my first real job was as a lifeguard.
I got my foot caught on the outside of the pool, as I went in, to get a little boy.
I dislocated my ankle, and had a cast put on too tight.
It cut off the circulation and killed the nerves.
My leg was allowed to remain on too long and the nerve damage spread, it’s now full body CRPS ( CAUSALGIA), with organ involvement & trigeminal and ocular nerve damage- as well as now being documented in my brain.
It’s shutting down my organs one by one and it will eventually kill me.
It has caused me to have gangrene, pulmonary embolisms (2), sepsis, blood poisoning, infections so bad I’d spend 2 months in the hospital, and 4 months in a nursing home- with debridement occurring 2 times a day, every day.
A wire brush scrubbing on my bones.
I’ve had 11 bouts of osteomyelitis.
Picc lines for 6 months to a year.
Because of the damage to my sympathetic nervous system, I have such brittle bones that my vertebrae are either broken, fractured or collapsed, an artificial hip – my other hip and knee need to be replaced.
200 + surgeries, trials, guanethadine experiments, “tried to shock my nerves into functioning,” … a human Guinea pig…
Bi lateral Lumbar sympathectomies, bilateral brachial plexus surgeries… contrast therapy, desensitization therapy, physical therapy and skills for daily living ( of which, I could teach them!)
Psychological counseling, at which I was tested, and informed that this was my new life, it was not psychosomatic, but I would eventually experience the mental treats that come along with what is considered the most PAINFUL condition known to humans; depression, isolation and anxiety…
but I must fight it..
As well as what would come with all of this-.others walking out of my life, because they couldn’t deal with it.
Doctors who weren’t able to help, so the blame game began… “malingering” ” med seeking” ” attention seeking ” etc… referred to more psychologists, psychiatrists…
Sent away, and told to find a qualified specialist, who knew about the condition that I had…
That’s not including the 3 amputations…
Or the last 9 months that I’ve been undergoing jaw surgery, bone grafts and screws in my jaw… only to find out that it’s all got to be removed. Without meds- thank you CDC
Large amounts of bone has been lost.
So now my teeth are going to be lost.
No implants, And dentures aren’t covered by Medicare or Medicaid.
Large pieces of bone will now have to be placed and screwed in… and guess what- Novocaine doesn’t work on me, and nobody will put me under.
I SCREAMED, CRIED AND TRIED TO COVER MY MOUTH, the first time they did this to me…
and now it must be removed and I know what is coming, now.
No pain meds, no sedation, no matter…
AS I sit here once again, in this oral surgeons office- correcting this, and waiting…
I am just another tortured person, who doesn’t matter to our government.
I have been on Every medication, taught or learned self hypnosis, biofeedback, visualization and any form of dissociation that I can do.
I’ve been put on meds that NEVER underwent trials, for conditions that they’re being used for.
I was compliant on my opioid PRESCRIBED medications for almost 30 years.
No request for early refills, no lost prescriptions, no failed hoop jumping.
I HATED WHAT THEY DID TO MY HEAD!
It was always a battle within:
don’t take them= pain becomes out of control and hard to get on top of
Take them= my mind was numbed, not the pain.
My world became veiled, by a grey, mind numbing fog.
No colors, no beauty, joy…
I lost all hope.
It’s called full body CRPS w/ additional complications, organ involvement; that’s what the cast caused.
There’s not one aspect or person ( family/ friend/ co-worker/ or even doctors) that hasn’t been negatively affected by the pain or medical events, that I deal with every second, of every minute, every hour of every day – week- month and year since I was 16.
I am now 56 years old, and on borrowed time!
Doctors won’t perform any surgical procedures unless it is life saving due to how high risk I am.
However, they actually did me a favor- by helping me find other methods of pain relief, through their false opioid prescription action…..
Until now…
Yes, this nerve damage is going to kill me, and I’ve been on death’s door far too many times to count!
Because of your “new guidelines,” I don’t fall into your terminal cancer pigeonhole.
Even if I wanted to be back on opiates, I wouldn’t be able to find a doctor who would prescribe them; my doctors and medical coverage just dropped all of the pain management patients.
Unless you were a terminal cancer patient.
And recently even the terminal cancer patients, have been dropped.
So I found something ” other than opioids.”
Just as the CDC GUIDELINES stated to do…
and are being acted upon as if they are law, when the CDC IS NOT ABLE TO ENACT LAWS…
Kratom:
lets me have a clear head
Helps with the pain
(far more than the pills).
I am able to get myself out of bed [the past 10 years I’ve been bedridden].
NOW I can get into my wheelchair and into the front room.
I have been sincerely smiling.
Laughing.
Trying to find a way to do a hobby or something.
I’ve participated in the California Rally, and visited with my district representatives assistant.
I had 2 wonderful women with me, and we were accompanied by our significant others
I’ve had company over, and didn’t have to stay in bed- wishing that they would leave- yet happy for the company… I enjoyed every single second!
At least now, I have a desire to try …
instead of arguing with the doctors about quality of life/vs no quality of life.
I take a total of 1 1/2 tsp a day, of kratom, instead of 300 mgs of oxytocin and morphine, plus benzos and others
I don’t take the above amount, all at once.
No, it doesn’t get rid of all of the pain
but I am able to tolerate what I have left, far more than I ever could have on the pills!
I can once again see beauty, feel joy and experience the intense differences between colors.
Kratom has allowed me to find a little saving grace in my world of sheer agony
Why do you want to take that away?
Why don’t you do an experiment: for one month… Just one.
Put yourselves in a wheelchair, tie your legs together so you can’t use them.
Get up, get dressed, fix your food, go to work ( no servers, no drivers, nobody doing anything for you….)
It’s only 30 -31 days.
In fact: get by on 725 a month… take buses, go from pharmacy to pharmacy, and doctors office – pay copays, rent.
You know that kind of thing.
Do it while you’re in so much pain, you have to remember to breathe
.. all the while remaining by yourself because you are just as tired of talking about the pain and “what now” things,
as everyone else is, hearing about it.
Only 30 days. ..
It’s Not a lifetime, like we are subjected too.
Most of all because of Kratom I found a very special group of people!
The love and appreciation that I have for you is beyond deep!
I’ve gained so very much, in a short amount of time…
A herb..
A frigging leaf . .
I learned more,
discovered more,
felt more.
I have experienced more love and acceptance then I have in my entire life.
Incredible !
***THIS IS THEIR FEAR***
Now, instead of fearing the “KNOWN” stalker that’s about to pounce,
& by no means do I want to be back in its grip!
The unrelenting excruciating torture.
But a big part won’t be with it!
All of the self doubt
the worthlessness unimportant insignificant shadow of chronic pain/illness/ the glances of disgust…
And now, once again I have that peace back.
Because of all that you’ve taught me..
My self discovery…
I’ve gained so much!
I Was safe enough to be vulnerable, and was able to process all of that “stuff”
THE stuff that my system and mind was too overwhelmed by just existing, & mere survival; too simply getting thru each minute: that as I “growing up”
even though I know of my stated intelligence-
I was retarded by the pain
The pain that is once again looming in my near future, but my disease has now progressed.
But just not enough, too fit your definition of “terminal,”
as I am not a cancer patient
So according to the CDC, FDA, DEA and AMA….
As well as all the other Federal Government agencies the United States of America;
it’s okay…
It’s acceptable
That MILLIONS of people like us- SUFFER and DIE a slow, intolerable agonizing death.
Torture and genocide are now the norm.
Suicide is occurring in heartbreaking numbers, but you don’t hear about that….
You only hear “another drug addict overdosed”
VS the truth… MY TRUTH, and MILLIONS OF OTHERS TRUTH-
untreated pain patient became forced to choose…
Torture
Or
The ultimate sin, of committing suicide.
Or NOW,
Become a Felon- in order to make a buck… BILLIONS of them
..
on our avoidable suffering,
blood and
Our dead bodies
we are turned into felons
Agonizing…
suffering..
Or the black market, the streets, & prisons
BECAUSE imho, history is about to repeat itself…
Prohibition of Alcohol, and how well it worked…
How much it accomplished..
How safe it made the streets…
How many entrepreneur’s it created…
That history SHOULD BE A clear and obvious BLATANT EXAMPLE of what is NOT a good thing for THE PEOPLE
I’m curious….
Is our Justice system set up for MILLIONS of people who are SICK, INJURED, have CHRONIC DISEASES. People with MENTAL HEALTH ISSUES or people who HAD been dealing EFFECTIVELY with ADDICTIONS..
DO WE have prisons set up for that?
Aren’t the prisons currently Overcrowded
Yeah, GOOD IDEA
Make something that is Natural and working, a HEALTHY, NON VIOLENT ALTERNATIVE. Illegal…
when it is cheap,
effective,
creates reliable contributing & working members of society…
Decreases crime
has no significant side effects… when it is utilized wisely.. a whole unadulterated product,
One in which more synthetic drugs are NOT needed, and more, and more..
Hmmmm, I don’t want to think it,
believe it…
but I see where the “priorities” are……
Do you?
All of the people who have found recovery,
found a much more effective and safe alternative manner, in which to deal with the pain: mental or physical..
It doesnt cure
It doesn’t get you “High”
All of the people who are now OFF of OPIUM DERIVATIVES, (THAT ARE CURRENTLY KILLING ALMOST 200 PEOPLE
A DAY )
Prescribed or Illicit
Medical, Mental, Addiction…
it DOESN’T MATTER
All OF THE PEOPLE who are CHOOSING and DECIDING what medical care is right for them Under CONSTITUTIONAL AMENDMENTS,
“OUR” BILL OF RIGHTS
“OUR “RELIGIOUS BELIEFS
“OUR” FREEDOM TO CHOOSE
WE ARE CAPABLE OF MAKING SOUND, RATIONAL, REASONABLE DECISIONS
As PERSONS OF THE UNITED STATES OF AMERICA.., not property
THE LAND of the FREE.. ?
UNITED WE STAND..
INDIVISIBLE …
( AND WE MUST!)
and
JUSTICE FOR ALL
??
We WERE a good, strong, proud PEOPLE OF THE UNITED STATES OF AMERICA …
Someone
Some place, in POSITIONS that have ALLOWED them to abuse power, and use it for their own agendas…
Has forgotten:
We are Individuals
We are free
We are over 18
We are adults
We are not committing crimes
We are contributing members of society
We ARE IMPORTANT
There is no “I”
in “WE THE PEOPLE”
There is no “I”
in “WE ARE”
There is no “I” in
“FOR ALL”
There is no “I” in
WE ALL MATTER!
WE ARE NOT PROPERTY of the United States
WE ARE “FREE” from torture
Free from undue taxation
Free to choose
I personally don’t know when the FDA was made “God”
When did THE PEOPLE VOTE TO GET RID OF PATIENT/DOCTOR PRIVILEGE?
WHEN DID THE PEOPLE VOTE TO PUT ONE SELF SERVING AGENCY WITH ITS OWN AGENDA IN BETWEEN THE PATIENT AND THE DOCTOR ?
I must have missed this election
The ForDeathAgency
Everyone must report too them..
Must ask their permission
Must go by their rules, regulations and policy…..
Must submit body, mind and all property whether it be just or unjust
If a law
Amendment
Or any Policy doesn’t suit the FDA’s needs at that Second…
don’t worry,
in record time,
bypassing all procedures in place TO PROTECT THE PEOPLE
those will be completely irrelevant at that Second…
in order to grant those who Pay more $ too those abusing the power so blatantly, with forethought and knowledge….
premeditated murder
Premeditated injury
To change and approve a natural product into a dangerous, disease causing medicine,…. a DRUG
AND PUSH IT…
Didn’t president Trump say something about the Death penalty?
Must have heard it wrong ..
We were created with the ability to make decisions.
Free to decide what we BELIEVE IN
FREEDOM OF RELIGIOUS BELIEFS
Or at least that is the ILLUSION OF THE UNITED STATES OF GREED AND MONEY
wants you to believe
I know right from wrong
I am over 21
I can buy Alcohol
I can buy cigarettes
I can drink and cause myself brain and liver failure
I can smoke and cause myself AND THOSE WHO DON’T SMOKE, major health issues
AND THROW the butts( filters) down and kill children, animals, and pollute the water
There is a tea law…
It was passed Over 100 years ago
FDA doesn’t like:
Healthy
Natural or
Free
But I’ve been given what I’ve craved.
I AM OKAY
WE ARE OKAY
WE ARE KRATOM!
LeaFUsalone
Leafitbe
Kratompiates
Man,,,,this M.D. CLINIC so-called professional,,,,,really displays why we are in soo much forced physical pain,,,telling all ,,that patients basically have no ability to give input on their care,,,this place is scarey people,,,but since it is prudent to study the ways of our adversaries,,,,,,it does give the true reason why we are being forced to endure our physical pain from medical illness,,,Comments like,,no discussion allowed,,or calling us ,”lamme;s”’,,truly show the true combination/definition of arrogance +ignorance truly does kill,and commits acts of torture soo inhumane,,it should be illegal,,,wait,,torture is illegal right??thank god,,,,,maryw