By Leah Dwyer
I was addicted to high intensity spin classes to stay slim and fit. I put myself under enormous pressure to be the perfect mother to my severely disabled son while ignoring a crumbling marriage.
Then I fell over in a mother’s race at my son’s school.
I went straight to the gym to do a personal training session and a spin class. When my neck seized up a few days later, a physiotherapist diagnosed me with whiplash and a mild concussion. I ignored his instructions and toughed it out at the gym, which meant 5 spin classes a week.
About 6 weeks later I still had neck pain and restricted range of motion, and had developed an intermittent myoclonic jerk – my head would randomly twitch to the left as if I was being zapped by a cattle prod. I went to my GP and she sent me to a neurologist, who diagnosed me with a neuromuscular condition called Cervical Dystonia (CD). He gave me a script for a mild opioid and an anti-depressant – standard drugs for chronic pain. The neurologist also declared that Botox injections were the only medical solution for the involuntary muscle movements and that if I didn’t have Botox, I would most likely be house bound within 5 years.
Wow! Talk about a life changing 20-minute consult.
What is Cervical Dystonia?
CD feels like waking up with a crick in my neck every morning.
“Dystonia is a disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures. The movements may be painful, and some individuals with dystonia may have a tremor or other neurologic features. There are several different forms of dystonia that may affect only one muscle, groups of muscles, or muscles throughout the body. Some forms of dystonia are genetic but the cause for the majority of cases is not known.”The National Institute of Neurological Disorders and Stroke (USA)
Doctors, Doctors and Doctor Google
I had Botox for a year; incredibly painful injections at the base of my skull. It did nothing for the pain or stiffness. At the end of the year, I decided to quit the Botox and formulate my own treatment plan. This included remedial massage, strength training, an over-the-counter pain reliever and a good tequila.
Most persistent pain patients try everything and I was no different. One of the therapies that seem to work temporarily better than anything else was remedial massage. And yes, I heard the words, “You’re so tight!” many times. As long as the therapist didn’t hurt me by trying to force my muscles to relax, I would often feel more mobile and in less pain. This intrigued me and I decided to become a remedial massage therapist.
As part of my constant quest for answers, I saw a pain specialist. Unfortunately, the pain specialist gave me no answers and deeply angered me by declaring that there was nothing on the scans that warranted the amount of pain I was in and he’d like me to see the clinic psychologist. I screamed all the way home.
A fortuitous Google search brought up a TED talk by Aussie neuroscientist Lorimer Moseley called, Why Things Hurt.
I was mesmerised. I watched the video three times. Then I cried.
It was the first time I felt normal.
Learning about pain changed everything for me. Knowledge put me back in the driver’s seat and changed the route I was on. I learned that pain is complex and multifactorial, that my brain produces the experience of pain that I feel in my body and that pain does not automatically mean tissue damage. I learned that I could slowly rewire my brain and calm my nervous system. I learned about Moseley and Butler’s DIM SIM therapy and began seeking out safe activities and thoughts – safety in me (SIMs). I was also more mindful of the dangers in me (DIMs) that contribute to turning up the volume of my pain – stress and catastrophising thoughts. I learned that I had a lot more control over my pain experience than I previously thought. This knowledge gave me more self-efficacy, which changed my life. I sought active therapies such as Cognitive Behavioural Therapy (CBT) and physiotherapy. I tapered off all the drugs and took up sea kayaking, which is more of a meditative workout.
Once I began learning about pain, I wanted to become a consumer advocate by working with Painaustralia and Moseley and Butler’s Pain Revolution. I felt it was my responsibility as a survivor to help others find their way. Listening to other’s lived experiences of pain is a powerful way to learn about pain. During my darkest days, I felt so alone. Learning that not only was I normal but that others were going through similar experiences and proactively changing their pain via pain neuroscience education was a revelation.
I’m not going to sugar coat it; this is hard work. As a patient, I have days when I want to just take a pill to make it all go away. As a clinician learning to explain pain to a multitude of different clients has been very challenging but one of the most worthwhile things I have done as a therapist.
When you learn how pain works, you begin understanding why you have to change your thoughts, beliefs, emotions and the way you do things every day. Ultimately, this is when the change begins to happen. Lasting change that alters someone’s pain experience. Moving away from a damaged tissue equals pain model (Cartesian model – named after René Descartes) and towards a biopsychosocial model changed how I thought about my pain and the drivers behind it. I realised that my spin class obsession, my collapsing marriage, and the stress of a disabled child all contributed to a fertile ground for a chronic pain condition.
As a clinician, it taught me that the old structural pathological model that I had been taught was outdated and would often send patients on a wild goose chase full of DIMs. Massage therapy can be a really SIMful experience if the client feels heard and leaves with relaxed muscles and a bit of pain education.
The irony of being a massage therapist with a neuromuscular condition is not lost on me. Work is often physically challenging at the best of times so adding a constant tremor and moderate to high daily pain is, well, a pain in the neck. However, Dystonia is the reason I became an ‘explain painiac’, a consumer advocate and a much better massage therapist.
- Pain Revolution’s Resources for People in Pain
- DIM/SIM Therapy – Patient perspective
- Restricting access to opioids could drive pain sufferers to buy harder drugs on the black market, experts warn (featuring the author)
About the Author
Leah Dwyer is a Remedial Massage Therapist at Ryde Natural Health Clinic. Leah lives with chronic pain due to Cervical Dystonia and as a result has a keen interest in pain science. Leah is a member of the Painaustralia Consumer Advisory Group, Pain Revolution Comms Committee and the Agency for Clinical Innovation Pain Network Group. She has discussed opioids, chronic pain and pain management with the media and is currently working with NPS Medicinewise on a series of opioid resources for GPS. She is passionate about massage therapy, educating people about pain, neurophysiology and the simple power of effective touch. Leah is also a mad keen sea kayaker and can be found most mornings looking for dolphins and turtles on Middle Harbour.