Thursday, February 2, 2023

Chronic pain study targets rural communities: Ashley Grant

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Ashley Grant, Body in Mind Research Group, IIMPACT in Health, University of South Australia

Chronic pain doesn’t discriminate. It can impact anyone, of any age, and in any location. However, how it is managed can differ greatly.

For those living outside of the major cities in Australia, it can be very challenging to access the right services at the right time. It’s challenging for health professionals too. They often have limited time and limited resources. Rural Australians challenged by chronic pain often travel to major cities to receive care, which is inconvenient, costly, and frustrating.

It is not surprising that rural Australians with chronic pain often describe feeling without hope and without relief. It is not just about access to care, though. Rural Australians are more likely to experience chronic pain than Australians living in big cities and the contributors to chronic pain are likely to be different depending on where you live, what you do and who you do it with.

In terms of the number of people affected and the impact on physical and psychological functioning, chronic pain is one of the most disabling health conditions we face. What is more, the most common treatment approaches are often very outdated – for example opioids remain a common treatment for people with chronic pain and there are now more opioid related deaths in individuals living outside of capital cities than in capital cities.

The problem of chronic pain is complex, so solving it is going to be difficult. However, progress is being made and researchers at the University of South Australia are exploring how to bring better outcomes for rural Australians challenged by chronic pain.

What chronic pain can look like

Lauren Cannell is a police officer from the northwest coast of Tasmania. She was always the “strong person, the organiser of the family… the person who was in control.” Until her pain got in the way.

Lauren’s pain journey started with a traumatic accident and some common athletic injuries. Then her pain began to spread; it lasted longer than the doctors said it would. She travelled all around Tasmania to see surgeons, specialists, osteopaths, chiropractors, naturopaths, physiotherapists, massage therapists, and sports doctors, all in search of a cure for her pain.

“I couldn’t even tell you the amount of money that I spent just going down this rabbit hole… you’d go and see the surgeon, they’d say, ‘Oh, I think if I did this procedure, that would give you some relief.’ And so, you’d get really hopeful, then you’d wait two months until you had your surgery and then, another month later and nothing’s changed, and then you start again. There’s just this constant rollercoaster of feeling hope and then feeling let down.”

Lauren’s story is shared by others all over the country. Abbie Norrish is from a rural town in Western Australia. Abbie was 15 when she hit her head at the bottom of a pool, knocking herself out. She woke with neck pain that then persisted for years.

Similar to Lauren’s experience, Abbie’s family sought relief from the pain by spending hundreds of dollars a week to see all sorts of health care professionals. Like so many people with chronic pain, Abbie felt confused “Why me? Why this? Why can’t I get better?” She felt frustrated – her pain was stopping her from doing the things she was passionate about doing – like acing school and heading to university. Instead she was overcome by sadness, loneliness and frustration that the pain was taking over her life.

Women make up two thirds of those challenged by chronic pain, but there are plenty of men with very similar stories.

Trevor is from a small rural town in north-eastern Victoria. Through his early twenties, Trevor experienced a number of back injuries and back pain that persisted for twenty years.

“To cope with the pain, I was lying down with hot water bottles on my back for hours every day. I was on opioid medications and not sleeping well and not able to work.”

Trevor’s pain spread through his body, so much so that he would joke with his healthcare professionals when they asked how he was going by saying “my nose is alright today” – implying that everything but his nose was in pain.

Trevor was traveling the four-hour round trip to Melbourne every 6-8 weeks to see healthcare professionals. At the age of 50, Trevor felt he could no longer take care of himself and was taking steps to join a retirement village with a nursing home facility.

Like Abbie and Lauren, Trevor reached the point of feeling like there was no hope – he had tried everything and nothing had taken his pain away.

What recovery from chronic pain can look like

For Lauren, the shift in her pain journey began when she learned that the non-profit organisation Pain Revolution was doing a bike ride around rural Tasmania to share education about modern pain science and management. Through this organisation, Lauren says that a light bulb went on – it all just made perfect sense. She learnt that pain does not directly relate to the amount of tissue damage in the body and that when pain becomes chronic it can actually protect her too well.

“I first heard them saying your pain is in your head” she remembers, “but I soon realised that was not at all what they were saying. No, they were saying that our pain system is all about protection and when it stays turned on for a long time, it becomes the problem.” 

It wasn’t that her brain was deceiving her, which felt cruel, but that her brain was working too hard to protect her. “It was just like the start of understanding that pain can work in a different way… it’s not necessarily connected to injury or being broken.”

Lauren described what she felt when the lightbulb came on as ‘scientifically based hope’ and it powered her to change how she was thinking about pain and what she was doing to recover.

Abbie found her truth by diving into books on the brain and pain. She came across some similar ideas and that you can retrain your overprotective pain system.

It wasn’t easy. “I was really conflicted because I was so sure that my neck was damaged but I was also open to this idea that the brain is powerful and changeable.”

Abbie decided to commit to being curious about this new way of treating pain. She started exercising in a different way – she describes it as ‘exercising according to brain science’. She broke up the movements that had been painful into smaller bits and slowly progressed. Little by little.

While many healthcare professionals along the way were well meaning, compassionate, and really wanted to help, Abbie said “the only way through was prioritising self-responsibility…going on a learning journey and setting new goals.”

Abbie’s own pain experience was so profound that she went on to become a physiotherapist and now treats people with chronic pain for a living! She also works for a non-profit focused on upskilling rural healthcare professionals to better manage people with chronic pain.

Trevor found his path to recovery through attending a pain program at a large regional hospital. He describes the moment things started to turn around was when he changed perspective, took responsibility for his own life, and started a journey towards recovery, not just pain relief.

“I changed my attitude… starting to think about the need to have a life, even if that meant having a life with pain.”

He re-engaged with meaningful activities and learned how to better manage his stress. Trevor realised he needed to be involved in his own care, not just seeking help from a pill and a healthcare professional to fix him.

“Pain is a lot more complex than that… a big part of it is being stressed and being able to effectively manage all of that in your life.”

Once he grasped this, he was able to wean off his pain medications. That took a full year but now, six years later, he is again employed full time and living a meaningful fulfilling life.

Key messages about pain

Abbie, Trevor, and Lauren all found that learning that ongoing pain does not mean ongoing damage – even though that is exactly what it feels like – was a pivotal part in their pain recovery.

Both Abbie and Lauren expressed that it took time for them to fully grasp this piece of information and that it was at first difficult to accept. Abbie shared that, “it wasn’t until I fully believed with every essence and cell of my human being that this idea that pain doesn’t equal tissue damage was true, that I fully recovered.”

This is a consistent theme of research into people who have recovered from chronic pain and researchers are now concentrating on developing more effective and efficient methods to bring this understanding to people like Lauren, Abbie and Trevor.

If these stories sound like yours, consider talking to your healthcare professionals about some of the concepts in this article and seeing how they may apply to your own situation.

Working with a healthcare professional to learn more about your pain, learning how to shift the way you think about pain, learning how you can use movement and exercise to treat pain and how you can learn the fine art of ‘doing enough to promote recovery but not so much as to flare up’. That sweet zone of activity can be tricky to find – some call it the Goldilocks zone – but it gets easier the more you practice.

How can you get involved in improving pain outcomes for rural Australians?

The IIMPACT in Health research group at University of South Australia is presently conducting a needs assessment of chronic pain management in rural Australia.

We are interested in speaking with individuals from rural Australia who experience chronic pain and healthcare professionals who manage chronic pain in rural settings. We want to know about your experiences, how you access care, and ultimately how we can all work together to improve the outcomes of people with chronic pain.  

If you are interested in participating in this interview-based study, please email: painruralaus@gmail.com.

We also run clinical trials on new treatments for chronic pain conditions such as complex regional pain syndrome, chronic back pain, chronic neck pain and chronic phantom limb pain. If you would like to register your interest in these trials, please email tracy.jones@unisa.edu.au  

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