Life after opioids: ‘I went home and cried for a long time. I felt really stupid’ | Australia news | The Guardian – by Celina Ribeiro – Feb 2020
Ms. Ribeiro has written an excellent two-part article on our plight:
For people managing chronic pain, the push to reduce opioid prescription has left them feeling lost and unsupported.
…and with untreated, extreme, and suicide-inducing pain.
Louisa O’Neil inhales deeply when she is asked about her history of pain. Then, dispassionately, like recalling a string of part-time jobs, she lists the history of surgeries, injuries, accidents and conditions that have rendered her in a near permanent state of pain for the past 16 years.
Ligaments ripped off bone, regularly dislocating jaw, jaw replacement, endometriosis, fibromyalgia, separated pelvis, bone grafts, arthritis. It is a long list.
“I wake up in pain, and I go to bed with pain,” she says. “There’s very few moments when I’m not in pain of some form or another. Its just the degrees of how much pain I’m in [that] fluctuates.”
Over the course of the past 16 years she has been on a medical merry-go-round, and tried multiple drugs and techniques for pain management.
In the end, she found that Endone, a medicine containing the opioid oxycodone, worked for her. She would take one a night.
She says it would help reduce the pain sufficiently for her get to sleep. Once asleep Palexia, a slow-release form of the opioid tapentadol, would kick in to help keep her asleep.
Five or six times a year she would take an additional Endone to help with what she describes as “breakthrough pain”. She was told that she was managing her pain well.
Then, earlier this year, she went to her GP in Melbourne for a routine prescription renewal. But this time, it was refused. She left with nothing.
She was taking such a low dose compared to what many of us require that I’m shocked even this was forbidden.
O’Neil was told that her GP had received notice from the government that she and other patients were using Endone in a way it was not intended, which is for acute and short-term pain.
She walked out of the doctor’s surgery shaking. She rang her partner in tears. She knew what she facing – she had accidentally gone through withdrawals before, when forgetting to take her medication on a night away. But she was also terrified of how she would cope with her pain in the long term.
What followed from her Endone being cut off was three days of intense withdrawal.
Without her Endone prescription she now limits what she does.
I have to admit that I could “survive” with less opioid medication if I let myself become bedridden. Without physical strain on my body, my joint pain would be much less severe.
However, I would become completely and hazardously deconditioned, and not being able to do any of the things that give my life purpose and pleasure, I would certainly not want to live that way.
She doesn’t go out with friends like she used to, because she fears she’ll return home in pain with no medicine to help her.
She fears a fall or an injury, and she fears that when she goes for an upcoming hysterectomy that she will not receive adequate pain relief.
Physiotherapy, cognitive behavioural therapy, psychological treatment – all these cost money she does not have.
Her chronic pain means she can only work six hours a week. She spends about half her day in bed, every single day, just to get relief.
Safe fix or over-use and abuse?
In early 2019, the World Health Organisation changed its own guidance on opioids, recognising that while they have a role to play, that role should be limited.
But for many working in the field, there is concern that legitimate discontent about over-prescribing and harms has prompted a knee-jerk reaction, cutting patients off the drugs without adequate research, consultation or alternative.
It is not possible to know exactly how many or what proportion of people coming off pharmaceutical opioids for chronic pain are doing so voluntarily or as a result of their physicians unilaterally changing or ceasing their dosage.
That’s because none of this is being monitored in any way.
No other medication changes are treated so capriciously, no other medications are taken away when they effectively treat symptoms and patients are doing well on them.
This needless assault on opioid pain relief is a throw-back to the Middle Ages when superstition ruled and “medical care” consisted of mostly ineffective and often damaging treatments.
Below is the 2nd article in this series:
Life after opioids: ‘We have not served our patients well’ | Society | The Guardian – by Celina Ribeiro – Feb 2020
More than 3 million Australians are living with chronic pain, and the medical system is struggling to help them as it turns away from its reliance on opioids
guidelines and regulations around opioids are being rewritten.
But those changes have meant that some chronic pain patients are getting caught with no relief.
People who went to their doctors only to ask to have their pain alleviated, and who have come to rely on a medication that they did not realise was addictive, are now being told their medicine is not good for them and, in many cases, is no longer available.
Not good for them”: what the heck does that mean?
If you’re not addicted, your pain is relieved, you suffer no serious side effects, and you are functioning well, what’s “not good for you” about this medication?
various moves are under way to monitor and reduce opioid prescribing. Some states have introduced real-time prescription monitoring to identify patients who are misusing the drugs, “doctor shopping” or being inappropriately prescribed.
What does “inappropriately prescribed” mean?
If you’re not addicted after years and your dose is fairly stable, opioids are much less harmful (and usually much more effective) than almost any alternative.
Carol Bennett, CEO of Painaustralia, says: “In short, there appears to be a general reluctance across the medical community to prescribe opioids, even in instances where it may be clinically indicated.”
The medical indication for opioids is now simply overridden by bureaucratic rules, rules made by people who know nothing of pain, only addiction.
Dr Simon Holliday, a GP and addiction medicine specialist in Taree, which has high rates of opioid use and chronic pain, says that up until a few years ago there was a permissiveness about opioid prescribing.
“There is almost a crusading zeal to stop people using bad stuff,” he argues; a well-intentioned pushback against opioid prescribing by patients who have been harmed, or by police, hospitals and regulators concerned by the increasing numbers of people being hospitalised in relation to the drugs.
Holliday fears the rise of a 21st century temperance movement. In its 20th century incarnation the movement resulted in severe limitations on how physicians could use opiates, following an era where they were a commonly used, unrestricted medicine and recreational drug.
A social and medical experiment’
“We are conducting a large-scale social and medical experiment,” says Darnall.
“Look, we’ve already done it. We did it with opioid prescribing in the first place. Practice patterns got way ahead of the science. And it didn’t work.
Now we’re conducting societal experiment number two, where we’re de-prescribing without having sufficient scientific evidence on how to do this the right way, how to protect patients.
What’s the most frightening aspect of this is that no patient outcomes are being tracked. We are discontinuing the effective medical treatment of pain patients without looking at the results.
This would be criminal malpractice if it involved any other medication.
“You may have a patient that has been on a stable dose of opioids for 10 years, and then you start de-prescribing. We are now exposing them to new risks for opioid overdose, for suicidality, for actual suicide, for withdrawal symptoms, for increased pain.”
Thank you, Beth! I admire how thoroughly she has changed her previous viewpoint that most of chronic pain was caused by catastrophizing (you can see all my posts complaining about this flippant dismissal of our biological pain using the “catastrophizing” tag.)
- People living in chronic pain are a highly marginalised group. They tend to be more isolated, and live in lower-socioeconomic and regional areas.
- Nearly half of chronic pain patients also suffer anxiety and depression.
- Suicide rates are two to three times higher than the general population.
And for a cohort that Painaustralia says already has a high prevalence of a key suicide risk factor – a lack of a fear of death – the fear and anxiety associated with withdrawing from a medication that they believe has been helping them manage their pain can be overwhelming..
This lack of “fear of death” is simply overruled by the “fear of life with pain”. When pain becomes literally unbearable and doctors withhold the only remedy that’s effective for a patient, there are really not much other choices to relieve the intolerable pain.
Darnall says the risks associated with de-prescribing depend on the extent to which a patient is participating voluntarily.
And this isn’t stressed nearly enough. It’s one thing to try to rely on fewer opioids when it’s a reversible choice you make for yourself, but another beast entirely when a doctor simply cuts you off unilaterally.
When they have little or no control, a patient’s pain and symptoms can be amplified, and they can feel abandoned and victimised by the medical profession, she says.
These are not just “feelings” – they are facts.
Pain patients are being “abandoned and victimized” by not just the medical profession, but also society at large.
While Holliday would like to see fewer patients started on opioids, he says that it is unreasonable to expect some long-term users to be able to entirely cease their use.
“It’s going to be there,” he says. “Just saying to people ‘Stop them. They’re a bad drug. You’re a bad person for using this drug,’ is a disastrous, unethical approach. I think that precipitous thing does happen; it’s happening in the United States and it’s happening in Australia. I think it’s really wicked.”
The problem with pain
The tricky thing about pain is that it is created in the brain. Pain is a distress signal from the body relayed to the brain, which responds with physical discomfort. Studies have suggested that pain is formed by a combination of bodily, psychological and social factors, and the extent of pain may not necessarily correlate to the extent of injury. Nevertheless, the pain is real.
Chronic pain is an increasing issue in Australia and the developed world.
- an ageing population,
- increasing rates of cancer survivorship and
- advancing rates of obesity,
the risk factors for pain are growing.
Some 3.37 million people live in chronic pain in Australia today.
By 2050 it is estimated there will be 5.23 million. A report by Deloitte put the annual cost of chronic pain in Australia at $139.3bn. Globally the cost is estimated to be equivalent to the cost of cancer and diabetes combined.
The emotional dimension of pain and pain treatment is critical, and while a placebo is often understood as a sugar pill, Darnall says it is more complex than that.
The placebo effect is the belief that a treatment will work. That belief in turn improves the chances of a treatment working.
“Improve the chances” is still a far cry from effectiveness and the placebo effect was completely ineffective for me.
I believed so many alternative treatments would work because I was an early “natural health” crusader in the 1980s, but they all failed me.
I believed doctors when they told me that other medications or treatments would work, but they didn’t.
Why didn’t the placebo effect work for me? And so consistently not work?
What will fill the vacuum left by opioids?’
This is the big question that no one seems particularly concerned with. “No opioids!” is a simple and completely ineffective response when no alternatives are available.
She says that while it takes a few minutes to write a prescription for a pain condition, it can take an hour to sit with a patient and understand
- the context of their pain,
- its origins,
- what makes their pain feel less,
- what exacerbates it,
- what they do in the morning,
- what they did up until that appointment,
- what they eat,
- how much caffeine they drink.
This is no different than treating other chronic illnesses, like RA, diabetes, MS, etc.
And then, from that point, develop strategies such as
- lifestyle changes,
- cognitive behavioural therapies,
- physiotherapy and so on.
These strategies require multiple professionals, multiple visits to doctors, and education on the part of GPs.
And even though I’ve done them all and still do some, there are some kinds of pain that simply require opioids to ease.
However, Holliday says it is unrealistic to expect GPs to reproduce these time-intensive strategies within a local surgery environment, particularly when GPs have had their benefits schedule effectively frozen for six years.
Both pain patients and their doctors are suffering serious abuse under the inappropriate control of anti-opioid zealots without a lick of experience in pain management.
But, with adequate funding and education, GPs can provide good chronic condition care, pain or otherwise.
“Forced tapering is a problem,” says Ashton-James.
“Tapering in and of itself is not harmful if done well – but that’s a big ‘if’. It takes quite a bit of resources to do it well.
The insanity is spreading. Crafty health and insurance industry profiteers saw how well this worked here in the US. This is not even about illegal drugs, this is about saving money, a targeted genocide against sick people, injured workers, and others they feel are costing the system money. The right wing ideologues have made it very clear, that they don’t believe certain people should exist.
Just like the new corona virus, if you can’t count it, it does not exist. https://www.painnewsnetwork.org/stories/2020/2/27/overdose-crisis-could-be-worse-than-we-thought The big tech corporations, and healthcare corporations collect massive amounts of data, yet we don’t even know how people are dying. This is not an accident, this data was inconvenient, and bad for profits.
“Hill and her colleagues found that almost 72 percent of unclassified drug overdoses that occurred between 1999 and 2016 involved prescription opioids, heroin or illicit fentanyl — translating into 99,160 additional opioid-related deaths.”
Like we saw with the infant and maternal death rate, the numbers were difficult to tease out of the data. The health industry always advertises data and the EHR did not function or standardize anything. It is very simple they only collect the data they can use, or that promotes a false narrative. We have no idea how many suicides, alcohol related or other prescription drug related deaths there have been either. These unclassified drug deaths, suicides, and deaths attributed to underlying causes, are not accidental. People recently hospitalized, would have had some traces of an opioid in their system, so conflating opioids with the COD would protect the health industry.
We live in dangerous times, where “experts” parrot false narratives that protect industry, while dehumanizing sick people. In the US healthcare is a really profitable business, and under-counting certain deaths is profitable. They will pick up any data point that amplifies something beneficial for the industry. They used to so called opioid crisis, to demonize the poor, the sick, the surgical mistakes, and criminalize people seeking healthcare. None of this was accidental, they could not have the insurance companies paying for injured workers, people with certain conditions, and older stressed and broken down workers.
The industries saw this coming, they have great data access. They had to flip the narrative to justify the deaths. Describing any injured worker, person with a painful genetic condition, or even the recipients of the broken healthcare system, as addicted, was designed to dehumanize. Anyone too old, broken down or in too much pain from years of no healthcare, to work an 8 hour shift at Walmart or any fast food job, had to be reclassified. They are no longer human beings, or fellow Americans, they are craven drug addicts. Just like they demonize the poor, homeless, it is important to demonize the sick. The for profit healthcare system, and the obscenely profitable insurance companies demand it.
They needed to justify the despair pain and hopelessness. It is really important to collect only the data that supports the false narratives. The government agencies that were supposed to be collecting data, have been told by industry what data they are allowed to collect. Our nation is at a tipping point, turning to fascism. It was important to demonize sick people, along with any others they could scapegoat.
The mail just came, by PM physician is going into Concierge Medicine. I have been waiting for the shoe to drop. I am impressed that he stayed practicing for so long in this climate.
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On boy, do I feel for you… such a potentially life-destroying issue, and it raises up such a sickening fear that it kind of makes you want to throw up, doesn’t it?
I’m so sad to see you, too, thrown off the opioid lifeboat that was keeping you afloat in your pain. I pray that we can all find another lifeboat before we drown in this sea of pain and sorrow. Someday, the big ship of normalized opioid use will appear, pluck us out of the waters, and set us back on firm “ground”. May we all live that long.
I have one more appointment where I may get a referral. There are few remaining pain specialists left in our area, and the few that remain are promoting steroid injections and whatever else they can make a few bucks on. I think I may have about 2 months, so am trying not to even think about it. I tried to find a basic primary care, that was rather a nightmare. At no time did either the assistant or the NP even make eye contact with me. The assistant went over the meds I am on, apparently the computer did not update, and there was a glitch.
They had a big poster on the dangers of opiates on the door in the treatment room. I had to explain to each of them twice that (at the time” I had a pain management specialist, who prescribed my medications, and had no need of any from them. It was like they did not believe me. By then i was pretty frustrated, I explained that my specialist told me that for my insurance I needed a primary care physician. The one I had seen before, that was an MD and pretty cool, retired, he was 82. That left me to find another. They have nothing new for chronic pain, no referrals to anything non drug related nothing.
I have pretty low expectations anyway, they tried to talk me into a series of routine tests that you are supposed to get at a certain age. No human interaction ,just the requisite tests on the checklist. My imaging was lost a couple of years ago, so I have no interest in putting myself through these tests. I had some blood work done recently and it was fine. I explained that I was already traumatized by a previous surgery, so I do not want to undergo any tests that are intrusive, or could lead to a false positive. ( They get paid for these intakes, and have to talk people into the tests, to prove they were there) The healthcare facility is not too kind to people with chronic pain anyway. I got a blank stare back from the NP, they don’t even have an MD anymore. She was too rushed, and too into entering data twice on her computer to bother with the likes of me. I shudder to think if I had a real health issue, but they are fine for the occasional flu shot, or if a step on a rake or something.
As the assistant was leaning over her computer, going through her checklist, I thought is was odd how they “screen” for depression. She did not look up and asked, “Do you suffer from depression?” I wanted to say, Why the hell would I tell you. Instead I asked her what was the right answer? It was ridiculous. Thank goodness I am in pretty good health, this really should be terrifying. I went in there a few months ago, to ask about my insurance, that was an exercise in stupidity. They have a “benefits counselor” a 22 year old who claimed he had a social work degree. He was even more confused by my insurance than I was. He was wearing a surgical mask, so I asked him if he was contagious. I guess that irked him, . He was an anti vaxxer working in a medical clinic. That right there should have sent me packing.
The clinic in my community was recently taken over by a religious non profit. This company is pretty bad, but I guess they save the state money. These contracts go to the most incompetent, companies with political connections. It is highly unlikely they are going to get any better, the computer glitch is more of a feature than a bug. They make it appear they are providing healthcare, and anything more complicated than a flu shot, is out of the question.
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Your experience sounds like exactly what my mom deals with, but I’m still hoping that my 12 years at this medical group categorizes me as some kind of “legacy patient” and that they’ll keep doing the same opioid prescribing my PCP did for all those years. What else can we do but hope until the last minute when the door is slammed on our lives?
I went to my mom’s doctor with her at Kaiser and it was much like you describe: just a person going through the checklists on the screen, asking the required questions whether or not they applied to a 90 year old woman, so hurried they seemed to be verbally sprinting.
They spoke so fast I had to repeat everything slower for my mom. They have simply limited her to 2 Vicodin per day, no matter how bad her EDS pain gets – it’s Kaiser policy, they say. I’d be bed bound at that level and my mom can barely force herself to walk the dog because her hips and back hurt so bad. They’d rather have her confined in bed by pain and nag her about exercising than give her the medication that would allow her to get out and about and have a real life.
The cruelty is astonishing.