LAURA Ramsey pulls out a journal and reads aloud her litany of pain.
“A feeling of insects crawling on my skin. My arm buzzes. Feeling like I’m wearing a suit of armour. Stabbing sensation in my back. Painful to breathe.”
She’s teary now but goes on.
“Wake up gasping for breath. Fatigued. Miserable.”
It had crept up on her, this chronic pain. Like a frog in water brought to the boil, says the 48-year-old from The Gap, in Brisbane’s west.
She’d suffered episodes of back pain as a teenager, perhaps due to two naturally fused vertebrae, but kept active.
When her sons – now 15, 18 and 21 – were young, the pain grew more frequent. By her early 40s, Ramsey, who worked with her husband in their travel consultancy, found it agonising to hang the washing on the line.
Five years ago, hurting all over, she broke down in tears at her GP’s office.
The quest for answers began. She saw a musculoskeletal specialist. She had injections of steroids and local anaesthetic. She started taking Lyrica, an anticonvulsant also prescribed for nerve damage and fibromyalgia.
The drug made her feel disoriented but she took it for years at its highest dose, preferring the side-effect to the pain. Everything helped for a while. Then didn’t.
She began to delve into the science around chronic pain, pain that goes on for three months or more beyond the time an injury or condition should heal. She did an online pain management course through Macquarie University.
By the time she sat in front of a pain specialist at Brisbane’s Wesley Hospital late last year, Ramsey was ready to act.
In mid-January, Ramsey joined other chronic pain sufferers for the Wesley’s two-day a week, five-week pain management program where pain specialists work alongside physiotherapists, occupational therapists, exercise therapists, psychologists and nurses.
It’s the type of multidisciplinary clinic that the just-released, federally funded National Strategic Action Plan for Pain Management (NSAPPM) says is best practice; the type of approach it argues would benefit the estimated 3.24 million Australian adults – that’s one in five – living with chronic pain.
For Ramsey, it’s been life-changing. “I feel really good right now,” she says, wriggling in her seat and contorting her body to prove her point. She’s mostly drug-free, apart from the odd paracetamol. Sometimes, she has flare-ups but she knows how to deal with them.
The program taught her moderate, precise exercises, mindfulness, the importance of pacing herself and of sleep. It’s much more than that, says Ramsey, and takes commitment, but it works. “I’ve gone from a wild, out-of-control bushfire to these spot fires I can put out.”
Ramsey admits what she learnt about how chronic pain develops is “hard to get your head around”. She understands why some people in pain would struggle to accept the science of nociception and central sensitisation. “It’s not something you grasp all at once, you need to swim around in it for quite a while.”
So how does she explain it? “The pain is not created by the injury you might have … it’s a response our nervous system creates to alert ourselves to the potential of harm,” she says. “It’s the fire alarm that’s going off when there’s no smoke; it’s faulty, it’s sensitised … tiny triggers trigger the alarm.”
The way Ramsey interprets it, her years of back pain, aches and stress fed into a heightened sensitivity. “The more the alarm goes off, the more overwhelming chronic pain is.”
She learnt there’s no simple switch to turn it off. “You’ve got to hack the system; be persistent, keep giving your body the information and at some stage the switch will go the right way.”
Increasingly, however, sufferers are relying on medication for relief. Opioid use is a big concern. Nationally, there’s been a 30 per cent jump in prescription of the highly addictive morphine derivatives between 2009 and 2014 – and almost a doubling of opioid deaths in 10 years between 2007 and 2016.
Australia’s not at the stage of the US, gripped as it is by what US President Donald Trump called a public health emergency, with 49,000 deaths in 2016 and towns devastated by addiction. But if we don’t nip our pill-popping in the bud, the pain is only going to get worse.
Pain is an ancient part of our nervous system, older than our ancestors’ battle with the sabre-toothed tiger. It alerts us to danger – the tiger’s claws hurt, best run away! – and so much more, says Dr Jason Ray, an anaesthetist and pain specialist. “The pain system is integrated into pretty much every other system. It’s closely integrated with our arousal systems, it’s heavily integrated with our endocrine system, the hormones that make you feel and make you do and drive the metabolic rate of your body. It’s involved in your emotional centres,” says Ray.
“This is an important concept because anything aimed at shutting it down has effects on all of those systems. And this is why medication, on average, is not very helpful.”
Ray includes anti-inflammatories in this as well as opioids. Ray, who has a pain medicine practice at inner Brisbane’s St Andrew’s War Memorial Hospital and is a visiting medical officer at the Royal Brisbane Hospital, emphasises he’s not talking about cases of acute pain, such as after surgery, injury or for cancer, when these drugs “have their place”.
Chronic pain is different. Most cases – although not all – start with acute pain that is treated with drugs. The healing process occurs. But the pain – exacerbated by stress, previous exposure to pain, depression, anxiety, grief at the loss of function, failure to move for fear of pain – goes on.
And so, quite often, does the use of drugs but “almost none of them are safe to take long-term”, says Ray. It says so on the drugs’ packaging, he points out, and why would a drug company put that there if they weren’t compelled to? Yet the bulk of the chronic pain patients referred to him take them habitually. GPs have a demanding job with limited time, he concedes, but too many write repeat scripts for patients. “It’s so much easier to write the script than fight (with patients seeking repeats),” he says.
It’s insulting, distressing and wrong to tell patients the pain is “all in your head”, says pain specialist Dr Jason Ray at St Andrew's War Memorial Hospital. Photo: Tara Croser.
“People come to me, taking their opioids, still in pain. I have to say things like, ‘If they worked, why are you here?’ Some patients will rail against that concept. ‘They do work!’ ‘Well,’ I say ‘why have you waited an hour to see me, travelled across the state?’”
Ray knows chronic pain sufferers have it tough. He sees middle-aged tradesmen crippled by back pain.
He sees car accident victims and arthritis sufferers who just want their lives back.
He sees joint reconstruction patients still in pain who have been told by “a crusty old orthopod” that the operation went well, the scan is fine, “that it’s all in your head”. That infuriates him.
“My patients tell me all the time that they’re told that and it’s insulting and distressing,” says Ray, who, after 25 years in the field, reckons he could count on one hand the people he’s suspected were inventing their pain. “They’re a bloody whinger, it’s all in their head. People do say that to patients, sadly.”
It’s not in your head, but it is a condition of the brain, says Carol Bennett, chief executive of Painaustralia, which was funded by the Federal Government to develop the NSAPPM. It’s a vital distinction to make. “There is a nuance there and it’s an important one because it does affect the stigma that people experience when they have these conditions.”
The physiology is complex, with scientists exploring a variety of causes of the brain’s response, but the NSAPPM summarises the result like this: “Chronic pain can and does occur even if there is no injury or existing condition as the nerves and spinal cord become oversensitive and magnify messages when there is no active damaging stimulus. When the nerve messages reach the brain, the brain may interpret and react by experiencing pain.”
Or, like a faulty fire alarm. Some patients, such as Ramsey, like to know about the brain’s role in chronic pain. They draw comfort from it. But pain specialist, Dr Sara Lindsay, who consults at the Wesley’s pain program, stresses that treating chronic pain requires a whole-of-person approach.
This is where multidisciplinary treatment comes in. “Everybody in health tends to separate patients down to ‘I’m here for your arm,’ or ‘I’m here for your head,’” says Lindsay. “That type of approach doesn’t work well when you’ve got such a deep-seated, far-reaching problem as persistent pain.” By the time the condition has set in, says Lindsay, muscles have weakened, posture changed, bad habits and unhelpful mindsets formed. “Often a sense of helplessness and catastrophe.”
On their first day at the Wesley’s program, patients are assessed by all the health practitioners. Throughout the course, some may need more sessions with a psychologist, others with the exercise physiotherapist. Ramsey, who excels in analogies, compares it to having a gloopy substance that you can’t contain by pushing one way but if herded from a range of directions, can be controlled. This bio-psycho-social approach as advocated by NSAPPM does not promise a cure but a way of managing the pain.
Part of that is understanding that movement is important. Down the hall, patients graduating from the five-week course are in their final session with exercise physiotherapist, Matt Pullen.
He’s at the whiteboard, talking them through exercises. “You want to feel something; if you’re feeling nothing, you’re not going to make change. Learn from it. Pull back a little bit next time maybe. But don’t catastrophise. It’s not the end of the world if I’ve got a bit of muscle soreness.”
Patient Dave Taylor, 36, from Warner, about 22km north of Brisbane, offers an insight. “I might be a little bit stiff but I’ll have a stretch, I’ll be all right.” Pullen smiles. “That’s what I like to hear,” he says. “Stiff, stretch, I’ll be all right.”
Taylor adjusts his position in his seat. The Australian Defence Force employee had a back operation in December last year after a work incident left him with a spinal injury that put pressure on his sciatic nerve. “Worst pain ever and I’m a fairly tough cookie”. The operation was successful but Taylor has persistent pain. The course has helped him manage it. A fit bloke before the accident, he’s learnt not to fixate on pure strength but flexibility and movement.
Exercise physiotherapy helped Ramsey the most, too. She’s a few months further down the track with her therapy than Taylor, and says she benefited from small, precise exercises. One of them was to cross her arms over her chest and move from side to side. “Those are the ones I found really hard,” she says.
She admits it looks simple. “You wouldn’t believe it works. If you’ve been in pain for a long time, had operations, been taking drugs, told by doctors they can’t help you, why would you believe that? What those tiny exercises do is break down the movement. My nervous system had become accustomed to treating all kinds of movement as dangerous. That’s why I couldn’t hang the clothes on the line. My brain was saying, ‘You’re doing something very dangerous; I’m going to send out pain signals’. But,” says Ramsey, moving side to side, “can I do that pain free? Can I do 10 of them? Can I do 20? Eventually, my brain went, ‘Yeah, it’s just that thing, it doesn’t matter’. Without setting off the alarm. You’re provoking it back to normality.”
GOING THROUGH THE PACES
The pain in Linda Watson’s shoulder had become so all-consuming, her life so miserable, she was sitting in her car, contemplating suicide. Ten months after radiation for lung cancer that damaged her tendons, and on a daily, high-dose patch of the opioid Fentanyl, Watson was a tormented zombie. “My life was four walls, absolutely riddled with pain,” says Watson, 68 from the outer Ipswich suburb of Springfield.
The fact she’d been accepted into the Princess Alexandra Hospital’s multidisciplinary pain clinic had not stopped her suicidal thoughts. But the fact she didn’t act on those thoughts and decided to attend the publicly funded clinic was a turning point in her life. After the course’s first day in late 2017, she felt hope. “Because there, there and there, other people were telling my story. All the people in that group were exactly like me, with chronic pain.” She felt no judgment from staff. “They listen. And believe. Hallelujah!” She attended two courses: Pacing Plus, which runs for five weeks, and Aspire, an eight-week course. Watson started small drills, like rolling on an exercise ball. She ate better. “I’d been in so much pain I’d just have a peanut butter sandwich.”
She started to pace her activities, doing a bit at a time. She learned what happens to a brain in chronic pain. “Unbelievable stuff, how can that be happening?” Most useful to Watson was learning about mindfulness. “I was really ready for that,” she says. “They teach you how to escape the pain. I have a beautiful picture on the wall at home and I turn on my music and look at the picture – the pain is going bang, a-bang, a-bang – then I might close my eyes.” When she opens them some time later, “I do a couple of deep breaths and I feel so much better. You’ve relaxed your body, relaxed your mind.”
Watson still lives with pain. “But I can cope. I cope really well”. She’s off Fentanyl. She’s started making crystal jewellery. “And I can cuddle my grandkids.”
Michael Deen, the team leader of the PA’s pain service, says watching people such as Watson manage their pain and re-engage in life is “an amazing experience”. But not every chronic pain sufferer is suitable for a pain clinic. Some opt for surgery or other medical treatments; others “aren’t ready” to accept it works. “Some storm out saying, ‘That’s bullshit’,” Deen says.
And spaces are limited and it takes time to get in. Last year, the PA saw 556 patients, 130 of whom went into the Pacing Plus program, with just 20 in Aspire. The waiting time for the bulk of patients is about 12 months. The RBWH and other public hospitals also have clinics, with about the same waiting period. Options in regional areas are woefully inadequate - Townsville has the only public clinic north of the Sunshine Coast. Private clinics will treat sooner but if a patient is not covered by a health fund or WorkCover, the cost at the Wesley, for example, is $5713. This needs to change, says PainAustralia’s Bennett. The sooner a person with chronic pain sees a multidisciplinary team, the better their chance of living well. Right now, according to the report, up to 80 per cent of patients are missing out on access to pain specialists and multidisciplinary care.
Bennett says chronic pain has been neglected as a key public health issue in the same way mental health and dementia were until recent years. Yet with an ageing population, patient numbers are set to increase. “This is a condition of our times,” she says. “We can’t afford to just keep ignoring this; we’re already paying a price, we’re going to pay a bigger price.”
The strategy makes more than 50 recommendations, including recognising chronic pain as a condition in its own right, with its own Medicare item and greater funding of and access to multidisciplinary care. It also seeks a reduction in the prescription of medication for chronic pain, with stricter hospital discharge procedures and better training of GPs.
Says Bennett: “If you look at hospital discharge, people do tend to be given large doses of opioids to manage their pain. (And) we see that 70 per cent of GP chronic pain consultations result in a medication script. That’s pretty high, especially when you consider best practice management is multidisciplinary care.”
Australian Medical Association Queensland president, Dr Dilip Dhupelia, says GPs regularly reassess patients’ care regimes and are well-trained in pain management. But he agrees more multidisciplinary services are needed and supports the NSAPPM’s call for targeted training of GPs with an interest in pain management. However, Dhupelia says a strong public awareness campaign is needed to re-educate a community that has “been conditioned to believe that a tablet is the only thing that will take away their pain”.
Bennett agrees public awareness is key. “There’s no point just training GPs, we need the community to have a higher level of awareness,” says Bennett. The next step is for state health ministers and the federal health minister, Greg Hunt, to approve the strategy at the upcoming Council of Australian Governments meeting. “Anything less will be incredibly disappointing,” says Bennett. Then the battle for funding begins.
Kate Crosbie walked out of rehabilitation hospital, on crutches, and that was it. No follow-up with a physiotherapist, psychologist or pain specialist.
Just scripts for codeine and Lyrica and the advice that she would be on drugs for the rest of her life.
She was a long way from home, in London, but the 32-year-old is passionate about advocating for Australians with chronic pain to get appropriate treatment.
Now living in Broadbeach, on the Gold Coast, she wants to spare others the trauma she went through.
“After I was discharged was the hardest time. The painkillers gave me brain fog and I was tired, irritable, in limbo. I felt like I was sliding.”
But she knew she was lucky to be alive after a terrifying ordeal in June 2015. It started with excruciating neck pain. By the end of the week, her legs “were flopping like Thunderbird puppets” and she was rushed into emergency. A cluster of blood vessels inside her spinal cord had haemorrhaged and would not stop bleeding. She needed an operation or she’d die.
Crosbie woke up from surgery unable to move from the neck down. Slowly, movement returned and she spent four months in rehabilitation. Her muscles were weak, her balance skewed, and she had peripheral neuropathy – a sharp, burning feeling, mostly in her hands.
But Crosbie is independent, and was determined to get her life back. She gave up the drugs. Her clarity returned. She did exercises. She used music to relax. She adjusted her mindset.
“It’s just questioning myself,” explains Crosbie. “Saying, ‘Well, you’re going to be in pain if you sook about it, or you can try to ignore it and live your life.”
She had plenty of reasons to be down: she had to quit her job, her relationship broke down and her London dream was over. There was still no help on return to Australia. “I’ve seen a lot of GPs and no one has said, ‘We’ll send you to counselling, or physio or OT or a pain specialist’,” she says. She’s grateful she’d been into physical fitness before her trauma, something she believes helped her recovery. “I feel lucky I could draw from experiences and learn to live with it but not everybody has that. We definitely need to offer people more help.”
Crosbie works in medical imaging on the Gold Coast now where she sees lots of people come in “to get another scan to hopefully find a solution to their pain. But it’s not always that simple. That’s why it’s so important we have a bigger approach to this.”
Her hands still give her pain, they’re “constantly on fire”. “But it’s not my body saying, ‘Something’s wrong, stop’, which is what a lot of people think when they have chronic pain,” Crosbie says. “I don’t fear pain anymore; things are going to hurt but I’d rather something hurt and live my life than be in this tiny box where I can’t do anything because I’m scared.”
Not by a long shot. In 2017, a neurosurgeon told her she’d never skateboard, snowboard or surf. She bought a skateboard a week later. She hit the snow last year. Plus, “I bought a big mini-Malibu, and started surfing”. Last year, Crosbie competed in the Australian Adaptive Surfing Titles and made the national team. “It’s amazing what you can achieve,” says Crosbie, “if you stop putting limitations on yourself.”