In keeping with Chronic Pain Australia's theme for National Pain Week Nothing about me, without me today we have consumer representative Lara Pullin Gundungurra (pictured above and below) sharing her pain story and some tips for clinicians managing patients with persistent pain.
- Believe your patient!
People living with persistent pain have often had other people questioning their experiences. We are reassured when the professional working with us acknowledges that persistent pain exists, is relatively common and that hope exists! Knowing that many people live with persistent pain, and learning about the options, begins to lessen the impact on our lives and can be the first and major step towards reclaiming our lives.
- Help them to navigate the maze of resources
- Take a multidisciplinary, collaborative approach
My GPs really do deserve a medal for their care and support for me over the years. When my GP sent me to see the first pain specialist, he literally saved my life. It was a turning point nearly two years after my accident. Modern surgery and medicine had done what they could to save my life on a few occasions. However, the pain persisted and people thought that I should have healed from all the fractures, injuries and surgeries and that I should be back to mothering and working again.
How did that specialist save my life? Firstly, by believing me, by believing that the pain I was experiencing was real. By letting me know I was not the only person experiencing this type of persistent pain. And by explaining to me there was a scientific explanation for what my body and mind was experiencing. And that with a multidisciplinary team approach, in which I would also have an important role to play managing my own care, he could reassure me that things would change for the better.
Psychiatry in particular was helpful in providing a reference point for myself and for other practitioners that I wasn't 'crazy', nor was I 'imagining' or 'putting on' the pain. I came to understand that I was just one of a growing number of people living with persistent pain. Psychologists likewise were often a part of my team, helping with their specialist skills in the management of Post-Traumatic Stress Disorder that developed after my family's accident, and the recurring episodes of anxiety and depression that developed. Psychologists helped with realising there should be no shame in asking for help.
Physiotherapy has helped in different ways, from teaching about expected normal range of movement and the stages to return to that function, and various pain relief from ice or heat, immobilisation or movement, breathing exercises to keep lung function up when I was confined to bed, stretching and muscle strengthening, and various therapies like traction, manipulation and TENS.
Occupational therapists were also wonderful with very kind and practical approaches to modifying either my approach to the world or the world's approach to me! By that I mean they could suggest other ways of doing things, or useful aids or modifications to the home or office to allow me to do what I needed to do.
Social workers are also a valuable resource, and perhaps the greatest gift they gave me was in recognising my resilience and teaching me to become my own best advocate. Mindfulness and meditation are great skills to the person living in or with pain.
These days there are so many resources available, especially if you have internet access, so I think the hardest thing is learning how to evaluate which resources are trustworthy and reliable. There is always someone trying to sell the latest, greatest cure online. Often these so-called ‘cures’ are also associated with a cost.
So when patients come across information about new treatments for pain, encourage them to discuss these with your team to see what they think. It might be checking with their GP about a claim about stopping or starting a particular medication. Or checking in with a physiotherapist whether claims that a certain type or amount of exercise or yoga works best.
I have found tools such as the chronic conditions care plan useful. I have a copy of this and it reminds me of what I need to do, such as visiting other allied health providers. I also develop a pain plan to deal with flare ups and how they can be settled. There is a small but very helpful publication called the Pain Tool Kit, which has practical advice about self-management of pain.
There are many support groups - this could be an online group or forum (again you might want your care team to help evaluate their trustworthiness). Or it could be a face-to-face support group that the Australian Pain Management Association supports.
The stigma of persistent pain will only go away if we are all honest about it.
For more information on persistent pain in Queensland, visit the network’s website.
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