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.
It takes 10 minutes.
“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.
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, “even though it was working for me”. The doctor told her he could not re-prescribe. O’Neil did not want him to get into trouble.
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 do I do for those nights when I don’t sleep and the Palexia isn’t working? So yeah, a lot of fear. I was pretty devastated actually,” she says. “I just felt like a drug addict.”
What followed from her Endone being cut off was three days of intense withdrawal.
“It’s like someone is wringing out your muscles like they would wring out a wet rag. Just this cramping in your legs. You can’t get relief. So you don’t sleep and you spend most of the night trying to walk off this pain because if you lie down it’s just so intense,” she says. “It’s like your muscles are being clamped, and clamped, and clamped.”
Without her Endone prescription she now limits what she does. 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.
O’Neil knew her body was reliant on the drug. She didn’t mind going off it. But she didn’t want to do it this way. It did not seem fair.
Safe fix or over-use and abuse?
For decades opioids were reserved for short-term and severe pain relief, prescribed after surgery or accident or in palliative care. But drug companies in the 1990s began to market the drugs as safe and effective for long-term pain relief, a promise welcomed by doctors keen for a safe fix for patients presenting with chronic pain.
Prescription rates soared. In the five years between 2009 and 2014, opioid prescribing in Australia increased by 30%. In 2016-17, nearly 15.5 million opioid prescriptions were dispensed through the Pharmaceutical Benefits Scheme. These numbers do not include codeine, which was available in pharmacies without a prescription until February 2018.
And harms have increased too. In 2018 three people died every day due to opioids. That accounted for two-thirds of all drug-related deaths. Of the opioid deaths, 70% involved pharmaceutical opioids. Every day in Australia there are 150 hospitalisations due to opioids, and 14 emergency department visits – a 25% increase between 2007-08 and 2016-17.
In response to this global trend – which is particularly prevalent in the US – researchers, governments, doctors and medical bodies started to look again at opioid prescription practices. Patient groups in the United States sued the pharmaceutical companies for promoting the use of these drugs in the treatment of chronic pain. 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.
There was really never enough when it came to this drugLeah Dwyer
In Australia, concerns about misuse of opioids by patients has led to real-time prescription monitoring services being rolled out in some states. Last year, the chief medical officer wrote to 4,800 general practitioners who represented the top 20% of opioid-prescribing doctors in the country, alerting them to their outlier status in a bid to reduce over-prescribing.
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. Opioid prescription growth has slowed. Between 2013-14 and 2016-17, there was just a 5% increase in prescriptions. Pain charities report doctors and clinics outright refusing to prescribe opioids at all, and patients who have been following doctors’ orders for years being suddenly cut off or involuntarily tapered from their medicine.
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.
What is known is that, having developed a dependence on pharmaceutical opioids, withdrawal is extremely difficult, physically and emotionally. And whether forcibly tapered or voluntarily cutting back, many people are going through that process and their post-opioid life alone and largely unsupported by the medical system that made those drugs so readily available in the first place.
‘It was hell’: the voluntary taper story
It was when Leah Dwyer took three Mersyndol in the morning instead of two that she knew something had to change. She had been buying the drug, which contains the opiate codeine, without prescription or monitoring for eight years.
She had tried many medications and allied health treatments for her cervical dystonia (severe muscular contractions in the neck), which was diagnosed 13 years ago. She had been very fit and active before her diagnosis. With a severely autistic son, she did not have time for pain. She found Mersyndol worked, and took tramadol for flare-ups. She did not know that Mersyndol contained the opioid codeine, nor that tramadol was a milder form of opioid.
“In the beginning, they always work. That’s the tricky thing with opioids. In the beginning you will feel ‘Oh thank god! Finally! Something is taking away this pain,’” she says.
“And then they stop seeming to work so well, so you take a little bit more or you take them with more frequency. I started out taking two before bedtime, and then gradually two first thing in the morning, for a couple of years. And then I started going through a very complicated divorce, and my pain increased dramatically during this time, and I added a couple more at lunch time, and then I added a couple at dinner time, and then I added a couple mid-morning. And there was really never enough when it came to this drug.”
The morning she took three, she went to her local pharmacist and blurted out: “I take too much Mersyndol.” The pharmacist looked her straight in the eye. “I know,” she said.
When it comes to taking you off drugs, there’s nothing there to helpGary Harrison
Dwyer went home and cried for a long time. She was embarrassed. “I felt I had been really stupid,” she said.
But she devised a plan to taper. What followed was pure hell, she says. “An opioid ensures that your brain becomes very sensitive and demands the drugs by producing more pain. And that horrible catch-22 is the reality of opioids.
“The things that I felt during those eight to 10 weeks were much worse than anything dystonia could throw at me. Constant sweating. Shaking. Insomnia. Nausea. Racing, depressing, anxious thoughts. And extreme pain. My pain level skyrocketed. And many, many times during that eight weeks or so I thought about giving up,” she says. But she continued on, just she and her friendly local pharmacist, until the drugs were out of her system. She read articles and listened to podcasts about tapering off opioids. There was no other support on offer.
Dwyer was lucky. She works in allied health, so has a high level of health literacy. It has taken two years – not an easy two years – for her to devise her own pain management strategy, involving anti-inflammatories, swimming, breathing techniques, CBT and other strategies. Once off the drugs, a lot of the things she thought were her condition eased: sleep was better, her tremor was less, and her “brain fog” lifted.
“I do look at those eight years as really wasted years. Wasted in terms of time, money and hope,” she says. She gets angry at herself, and at pharmaceutical companies, but she’s willing to let go of that.
“All I hope is that we know better now, and we do better for patients, people who live in chronic pain and people who are still dependent and addicted to this horrible drug,” she says. “We should be doing better.”
‘The hardest thing I’ve ever done’: the regional story
Gary Harrison lives in regional NSW, and about four years ago, he took himself off tramadol. Alone. Bit by bit, over two months, he just cut it back. A few weeks before speaking to Guardian Australia, he took himself off Targin, Palexia and baclofen. He did not like being on the drugs.
While the growth in opioid prescribing has slowed in recent years, the variation between dispensing rates has increased; which means that as some physicians turn their backs on opioids, some continue to prescribe at high rates. In 2016-17 there was a five-fold variation between the highest and lowest dispensing areas. Just 0.18% of chronic pain patients have access to pain clinics in Australia, which tend to be in metropolitan areas, even though regional and rural areas have higher rates of chronic pain and opioid prescribing.
“Once you leave the city you’re left with a GP. They’re not pain doctors, but they’re trying. I found it very, very hard in regional NSW to get any real care,” Harrison says. In his experience and region, he says, “doctors are for writing scripts and handing drugs out. They’re not really for taking them away.”
Coming off the drugs alone, on his own plan, was the hardest thing he has ever done. And, he says, “if you try to do it too quickly, the emotional side is really un-nice”.
“Depression is the biggest side effect of taking medication away, and depression can kill. Depression is not nice. It’s not nice living with pain anyway. You get depressed regardless. And then you start taking medication away and you’re dealing with withdrawals from hard-core prescription medication, I just think there needs to be a bit more support to do that.”
Currently Harrison is managing his pain with a combination of prescription drugs, pharmacy drugs and home-made cannabis cookies. He has no medical background, but tinkers with his dosages in the aim of reducing his medication to its lowest possible level. He is about to embark on another effort to reduce his non-opioid medication, Lyrica. He thinks it’ll take three months.
“I think we’ve got a wonderful health care system in Australia, but when it comes to taking you off drugs, there’s nothing there to help,” he says.
“There’s no one.”
• In Australia, the crisis support service Lifeline is on 13 11 14. In the UK Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. Other international suicide helplines can be found at www.befrienders.org
Tomorrow, the second part of this feature talks to experts about opioids in Australia