Life after opioids: ‘I went home and cried for a long time. I felt really stupid’

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,Life after opioids: ‘I went home and cried for a long time. I felt really stupid’ 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.Life after opioids: ‘I went home and cried for a long time. I felt really stupid’ 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.