A Hopeful Message For Chronic Pain Sufferers
How My Mum Conquered Chronic Pain
13years ago my mum — Debbie — fell over when checking her post box and sprained her wrist. She was 45 years old at the time and had no idea that more than a decade later she would still feel pain in her hand.
At first doctors dismissed her complaints saying it was all in her head. It wasn’t until one doctor finally diagnosed her condition — chronic regional pain syndrome — that we realised they had all been right. It was all in her head because chronic pain syndrome is a neurological disease. It’s a problem with the brain, not the injury itself.
But just because she had a diagnosis, it didn’t mean she had a good treatment plan.
First she was placed on Gabapentin, an anticonvulsant often prescribed to epileptics. The medication did little for the pain. Instead it made her hallucinate that people were trying to break into her house in the middle of the night.
When her doctor heard this, he was quick to take her off of it.
Later she was given steroid shots in the stomach that she says made her sick for days. These were administered for several weeks until doctors agreed they were causing more damage than good.
Eventually she was placed on Lyrica — another drug given to epiliptics to help with neuropathic pain.
What resulted was an 8 year degradation of life. She became like a walking zombie both mentally and physically. I watched her age 20 years over those short 8 years. She was slipping away, her hand more crippled than ever, the pain sharper, more intense.
So where is the hopeful message? Rest assured, this story does have a happy ending, and even a reversal in age, but before we go up, we must go down.
The climb from rock bottom
When I plot out the timeline of my mum’s journey with chronic pain, I say the mending began the day she arrived in Melbourne in 2014.
I still remember the moment she walked out of the hostel, tears in her eyes, her hand stiff and crab-like. She was a shadow of herself — emotionally broken and experiencing severe physical pain. Her hand had almost completely seized up. She could barely move her fingers. And cognitively she was just as crippled. Dosed up on medication, she was weak and confused.
While most doctors in Melbourne continued to struggle to help her, she was lucky enough to find one — Dr. Krishnamurth. She gave mum a referral to Barbara Walker Centre for Pain Management at St Vincent’s hospital in Fitzroy.
It was this referral that was to forever change her life.
The course was to run for 3 weeks — 40 hours each week. On the month leading up to the course, doctors slowly reduced her medication until she was off it altogether. Suffering from heavy nausea and excruciating physical pain, she began the course.
The Barbara Walker Centre for Pain Management Course
At the beginning of the course, facilitators videotaped each person doing a lap up and down the hallway. It wasn’t until after the course when we compared the videos of before and after, that we all saw just how claw-like her hand had been.
As well as reducing the pain in her hand, mum says the course helped with increased mobility — preventing her hand from seizing up altogether — and mental resilience.
When I ask her what exactly they taught her in the course, she says, “really just exercises you can do, and mindfulness.” So exercise for rehabilitation and mindfulness for pain management.
When I ask her what she found most interesting about the course, she says, “It was the surprise really. I was expecting them to help with the pain, but instead they ignored it altogether.”
I knew exactly what she was talking about. It reminded me of something Dr. Russ Harris — a medical therapist and author of The Happiness Trap — had told me a year earlier. He had mentioned a pain management study done in Sweden using mindfulness back in 2005. It showed staggering results for mindfulness rehabilitation in chronic pain.
Acceptance and Commitment Therapy for chronic pain
Dr. Russ Harris is a medically trained doctor and ACT coach. ACT stands for Acceptance and Commitment Theory. You can think of ACT like an extension of CBT (cognitive behaviour therapy).
ACT is like CBT, but based entirely on mindfulness. So where CBT teaches people to ‘control’ their thoughts, ACT’s focus is on getting people to ‘defuse’ their thoughts.
ACT teaches people to notice and acknowledge their thoughts, and to let their thoughts come and go without buying into them.
Dr. Russ Harris explains that ACT also stands for Accept, Choose and Take Action:
“Accept your thoughts and feelings is about learning how to open up and make room for difficult thoughts, feelings, emotions, sensations, urges and memories… learning how to let them flow through you without getting into a battle with them,” Harris says.
“Choose a valued direction is about clarifying your values — your heart’s deepest desires for how you want to behave as a human being — and using them as a compass to guide you through life.
“Take action involves turning your values into actions — acting effectively and doing things that are important, meaningful and life-enhancing. By using your values for guidance, inspiration and motivation, you behave like the person you want to be and take action to build a richer, more meaningful life.”
The Swedish ACT mindfulness pain study
The study Dr. Russ Harris was referring to was a randomised controlled trial run in children aged 10 to 18 years old.
The control group received regular treatment. This involved analgesic (amitriptyline) medication and 30 hours a week spent learning conventional psychological approaches to pain, such as trying to directly reduce it, avoid it, or distract from it.
In contrast, the ACT group had only 10 hours of treatment per week and did not receive medication. In their treatment, they were taught not to try and escape from or get rid of pain, but rather to be with pain.
They were taught that pain itself isn’t the problem. It’s how we respond to pain that’s the problem. They learned how to let the pain be present without fighting it and without being dominated by it.
Dr. Russ Harris describes the technique as learning “how to let difficult thoughts and feelings float on by, and learning how to be self-compassionate and self-supportive.”
These simple changes to how we frame our situation can allow us to respond to pain in new, more flexible ways.
For instance, the Swedish adolescents were asked to identify what they would do differently if pain were no longer a barrier in their lives. Many of the children said they would hang out with friends, play sports, study for exams etc. Then they were encouraged to do these things, despite the pain. In other words, they were encouraged to not let pain hold them back.
What resulted was a significant reduction in pain in the group that learned ACT compared to the control group. It didn’t matter that the ACT group received one third the training and no medication, they still felt less pain.
These results held true in a 6 month follow up. The findings were later published in Pain Magazine.
A life worth living
It worked for mum too. It’s worth noting that the Barbara Walker Centre for Pain Management course used more traditional CBT therapy than the ACT study in Sweden. Still, both courses are rooted in the same fundamental training — mindfulness and letting go.
Today she experiences much less pain because she has taught herself to get on with things. She does lawn bowls and darts because these are things she would want to do if she had no pain in her wrist. She also makes a point of using her sore hand a little each day, such as picking up the kettle and turning door handles. This prevents it from seizing up.
She also uses red light therapy. A gift from my brother. She does 30 mins a day in front of the red lamp, which she says helps with her circulation and mobility.
And to help her mind? Well, the hard news is that just last week she had a mini-stroke. It was enough to scare all of us. And while she is recovering remarkably fast, what it has done is remind us all that she needs to rest her mind even more than she currently does. The good news, however, is that mindfulness can help with this too.
Just today she signed up for a 10 day silent meditation retreat. I did one 3 years ago and as well as giving my brain a rest, I saw a significant drop in my pain levels. I have never experienced chronic pain myself, but since the meditation retreat I can tolerate far more acute pain. It was never something I was expecting to get from a meditation retreat, but it’s what happened.
I wonder if it will help her too.
