Why don’t you hear about chronic pain recovery?
How often do you hear about people that get better after they develop long-term pain? Finding good news about persisting pain seems as likely as finding unicorns.
I am a health professional who sees people with pain everyday, and I realized that while I saw people recovering from persisting pain on a regular basis, other people never heard about it.
Stories of people who return to living well have a good dose of hope in them. Hope is good medicine, so keep reading!
Recovery from Chronic Pain
Many people that came to me in the clinic had pain for years. They didn’t think that there was any way they could recover from their pain, but they must have thought I could ease their pain a little.
Often, they had already done rehabilitation and exercise classes, some of them had procedures and surgery for their pain, and all of them had received passive treatments and medications. On the whole, they expected they would continue to have pain that stopped them from living the way that they wanted to.
I knew that exposing patients to education about the science of persisting pain could help them to pave the way to their recovery. Getting them to believe it fitted with their own story was the hard part!
Through understanding their pain and getting back to their lives, more people were getting better. They didn’t need to come and see me in the clinic anymore.
I was discharging people who thought they would need to see me every week for the rest of their lives. They started to tell me that they had “recovered” from their long-term pain.
It made me so curious!
Stories of Recovery from Persisting Pain
I wanted to better understand what had been helpful for them so that I could use that information for other patients. The stories that these people shared with me were so important that I wrote a book about it, called “Pain Heroes”.
I hoped that by interviewing people who had “been there, done that” and recovered from pain, my current patients might better understand why I wanted them to learn about pain. I wanted these stories written down, so that I could hand them over to people without resorting to saying “trust me, this works”.
I want people to understand that recovery is possible, and to invite people who were struggling with pain to learn that they weren’t alone. There are other people in pain who had similar challenges and were able to overcome their hesitations and doubts and go on to get better.
Everyone’s experience of pain is unique. Your pain story is not the same as any other person, but there are some key learnings here for people in pain, from people who have walked a similar path.
Learning about Pain Recovery
I am sharing some of the wisdom that people in pain have taught me about recovery. I interviewed over a dozen people that self-reported that they had recovered from persisting pain, and there were key 7 themes that emerged:
- Defining recovery
- Feeling safe
- Taking back control of life
- Finding stories that work
- Making sense of grief and loss
- Finding the tipping point
- Being ready for change
Recovery from Pain, Defined
There was not one single definition of recovery for the people that I interviewed.
For some, their function did return fully and life looks pretty similar to how it did before their pain started.
For others, the experience has lead their life in a completely different and exciting direction. For others, full function may not have returned but they no longer define themselves as a person in pain. They say things like “I still have pain at times but it’s just not a major thing for me anymore”.
To me, these statements are the gold medals worn by pain heroes. They mean “I suffered a huge loss, I came to terms with that loss to some extent and I have got on with my life the best that I can”. They still needed some management strategies; ways to manage flare-ups and recognition of early warning signs that they needed to look after themselves more. Part of their recovery process was the permission to set boundaries about what they needed, and to practice self-care.
The Importance of Feeling Safe
Pain feels scary, worrying and upsetting. That’s something that health professionals need to understand. Part of the pain experience is that pain feels threatening, even when damage to tissues is small.
The role of pain education is to decode what pain is saying about danger and safety and help people make sense of the sensations that they’re feeling. With a new understanding of pain as a protector, you can change the way you interpret pain in your day to day life and get back to living well again.
For the people I interviewed, feeling safe again was critical. Knowing that pain is caused by many factors and pain is not a sign of damage was a way to look at their pain with fresh eyes. Talking about the fear and worry of pain helped them to make new stories. This safety enabled people to start new activities, get back to things they had done previously, start to experiment with different strategies, testing their tolerance with small challenges and giving their nervous system time to adapt.
Getting Back in Control of Life
Many of the people that come into the clinic feel powerless in the face of pain that has overtaken their
It wasn’t a linear improvement, but a gradual
Using active treatment strategies for pain was a critical part of regaining control. It wasn’t simply exercising or movement, but active approaches to relaxation, distraction, thought management and goal setting gave people the power to problem solve the parts of their lives that challenged them.
One important observation that people I interviewed had was that to regain control over life, they needed to let go of control over their pain. That sounds contradictory, but it was very important for people who recovered. When they started to understand the way their brain changes with pain, and make sense of the strange and unpredictable nature of pain, they could accept temporary setbacks and challenge the protective boundaries that pain puts on your life.
Finding the Best Way to Learn About Pain
Everyone that I interviewed talked about the importance of understanding pain to feel safe again and to take back control of their lives. There were many different ways that they did that.
People had individual experiences in the way they challenged their old beliefs. Often significant things driving their pain were hard to find. Some people enjoyed reading books or online information, some people found a teaching relationship with a group or individual was best, and some people had to develop some knowledge through experiencing what could change.
There’s not just one way to change pain, once you have some new knowledge on board. The most important take away was not how change happened, but that it was possible once those old beliefs about damage were re-conceptualized.
Acceptance, Grief and Loss
What this book project helped me to understand was the loss and grief that is tied up in someone’s pain experience. Loss and grief were intimately connected to how pain affected someone’s life, and seemed to be inseparable from the pain itself.
In most cases, its fair to say that the losses experienced were far more important to the person. The losses people experienced were ugly. In the interviews I heard about not being a “proper” mother, blocking people out for fear of being a burden, missed sporting dreams, careers lost and valued relationships fractured beyond repair through lack of understanding. The stories in my book made it so breathtakingly clear how difficult the experience of pain was. These stories illustrate just how much pain could impact someone’s life, and yet they could still change it around for the better.
Getting to the “Ah-Ha” Moment that Turns Pain Around
In the book, the people that I interviewed told many different stories of the relationships that they had with health professionals. Some of the stories weren’t positive, and it can be hard to get good help with pain.
Quite a few of the people mentioned finding a TED Talk or a book that led them to look for different kinds of health professionals. Often they mentioned a person that helped them “turn the corner” to get curious about doing things differently. You’ll find some of those inspiring people on the PainChats advisory board or among the diverse specialists who contribute to PainChats!
Learning about pain, and trying new things takes trust and commitment. Building a relationship with trusted health professionals, where people felt safe to ask more questions and have hard conversations seemed to be part of the recovery process (5,6). They needed empathic and compassionate health professionals that understood how unpleasant pain can be.
Readiness for Change
This was an important reflection that a few of the people that I interviewed had. They didn’t “get it” the first time they heard about how pain can change. Anger, sadness and loss got in the way, and looking for a fix was more important than learning about pain. There were lots of stories of resistance, of not being on board with an active approach to treating pain, but they got there in the end.
When they reflected on their journey so far, they recognized that seeds of change were planted a few times, and hearing new messages repeatedly was what was needed for them to try something new, and layer by layer, start to get back to life. And nowadays, when I get a sense that they are on the fence about the information I have given them, I offer to loan them a copy of “Pain Heroes” and hope that my intentions in putting the book together will help push them to the right side of the fence.
Since the book has been published, many people have emailed me and let me know how reading these stories has helped them understand that pain can change. It is essential for more people to hear that story.
- Moseley GL, Nicholas MK, Hodges PW. A randomized controlled trial of intensive neurophysiology education in chronic low back pain. Clin J Pain 2004;20:324-30.
- Van Oosterwijck J, Meeus M, Paul L, De Schryver M, Pascal A, Lambrecht L, Nijs J. Pain physiology education improves health status and endogenous pain inhibition in fibromyalgia: a double-blind randomized controlled trial. Clin J Pain 2013;29:873-82.
- Louw A, Diener I, Butler DS, Puentedura EJ. The effect of neuroscience education on pain, disability, anxiety, and stress in chronic musculoskeletal pain. Arch Phys Med Rehabil 2011;92:2041-56.
- Rufa A, Beissner K, Dolphin M. The use of pain neuroscience education in older adults with chronic back and/or lower extremity pain. Physiother Theory Pract 2018:1-11.
Ferreira PH, Ferreira ML, Maher CG, Refshauge KM, Latimer J, Adams RD. The therapeutic alliance between clinicians and patients predicts outcome in chronic low back pain. Phys Ther 2013;93:470-8.
- Fuentes J, Armijo-Olivo S, Funabashi M, Miciak M, Dick B, Warren S, et al. Enhanced therapeutic alliance modulates pain intensity and muscle pain sensitivity in patients with chronic low back pain: an experimental controlled study. Phys Ther 2014;94:477-89.
Alison qualified as an osteopath in 2001. She has a Masters of Pain Management from Sydney University Medical School and Royal North Shore Pain Management Research Institute. She has lectured at Australian Catholic University, Victoria University, RMIT, George Fox University and Deakin University Medical School. Alison works in clinical practice helping people with chronic pain, runs seminars for health professionals and has also written a book called “Pain Heroes – Stories of Hope and Recovery” .