Written by: Jinpa Caroline Smith, Executive Contributor
Executive Contributors at Brainz Magazine are handpicked and invited to contribute because of their knowledge and valuable insight within their area of expertise.
I have chronic back pain as a result of spinal surgery I had as a teenager in 1985. There is a big steel rod and various wires and screws in my back and I have no spinal movement at all from my waist up. But it’s only in the last few years that the word ‘chronic’ has resonated with me. Forever. When I was first diagnosed, in 2018, in those first moments of desperation, I began to find myself envious of the terminally ill. Those with an end in sight. I was referred to a pain specialist and put on Tilidine — an opioid.
Opioids are drugs either derived directly from the opium poppy or synthesised in a lab, I found putting the term into Google. Plenty of the top search results were about abuse and recreational use, dropping street names like captain ‘cody’ and ‘monkey’. Now, I’m as familiar with recreational drugs as much as the next girl who first tried them the late 80s rave scene — but on an occasional night out, not every day.
Scientific papers and medical reports popped up too, many focusing on the dangers of overdose and the links between prescription opioids and heroin use. According to The National Institute on Drug Abuse in the US, 80% of American heroin addicts report misusing prescription opioids first. The website End the Epidemic, says ‘nearly 75% of prescription drug overdoses are caused by opioid pain relievers.’
In 2017, the World Health Organisation published a report entitled ‘Curbing prescription opioid dependency’. It traces the use of prescription opioids before 1995, by cancer patients and for those recovering from major surgery, but then notes a dramatic increase, fuelled by funding from pharmaceutical companies. Deaths related to opioid dependency and abuse have been rising steadily ever since. The US is currently gripped by what’s making headlines as an ‘opioid crisis’, with over 180,000 deaths linked to drugs over six years.
I have had a long history of painful medical intervention and a fair amount of hospitalisation, and I have learned to submit and breathe, and trust in medication as the only thing offered to relieve the pain. So, I took what my doctor prescribed. In fact, she also told me it was normal to take a low-dose antidepressant at the same time. So I did that too.
After several weeks, I was not getting any medically condoned euphoric highs, but I was getting confused and forgetful. I was teaching English at a secondary school and the drugs were affecting my work. When I tried to read aloud from E.M. Forster, my lips stuck around my teeth and felt like they were made of rubber. I regularly forgot the names of my students. Not the short-term kind of forgetting that’s usual as we age; I just had no idea who I was talking to. If I took my medication too early, I would go floppy on the tram on the way to work, and occasionally drift asleep and fall off my seat.
The effect wasn’t so much that I wasn’t in pain as that I didn’t care that I was. I floated along for about two hours after my morning dose and then the effects wore off and I suddenly cared more about the pain than if I had taken nothing. My afternoon dose had little effect. So my doctor upped my prescription. Then three months later, she upped it again. The pills didn’t affect my body but my mind. They dulled it. Like the lackadaisical sailors in the Lotos Eaters, the opioid made me want to give up and sink into an insidious, comforting cloud.
I found one study suggesting patients under 70 shouldn’t be prescribed opioids because they are likely to become dependent, and/or tolerant in the first few years of use. Six months since popping my first tilidine, I was taking half the maximum dose. By my calculations, that meant by the time I reached the full dose I should still have at least 40 years of life in front me.
And I was still in pain. It was getting worse. It was my time-generous family doctor who introduced me to the neuroplastic brain. As I sobbed in his office, he told me about elderly ladies who had visited him bent double, unable to stand but feeling no pain because they just didn’t think they were in pain. As a Buddhist, I was intrigued by the link between mind and body. Especially coming from my doctor. I had learned to not expect this approach from western medicine.
Reprogramming my mind not to feel pain felt like colossal mountain to climb with nothing but the folding walking stick I had come to depend on. I was already developing low-level depression, a symptom I now know is common as many of the neurotransmitters involved in pain and mood are shared. But with decades of pain stretching out ahead of me, I certainly had time to investigate a less depressing approach.
Reading Norman Doidge’s The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity changed everything. Doidge explains that the scientific consensus until the second half of the twentieth century was that the brain developed in childhood and then stopped, remaining static for the duration of adult life. But neuroscience has changed its mind. Buddhist practice has long emphasised the power of thought, belief and rigorous mental training to adapt or improve the brain’s capacity to, among other things, calm the parasympathetic system and heal the body. Now western science is catching up.
Doidge’s case studies are engaging tales of people working with their brains, and of the pioneering medics who are testing neuroplasticity techniques. He describes people managing, or even curing, Parkinson’s, autism, blindness and brain damage, using sound, light and exercise as well as ingenious devices to stimulate and reset the brain’s own circuits.
But it was the first chapter I went back to over and over. It describes the work of Michael Moskowitz, a doctor working with patients experiencing chronic pain. He helps them understand the physiology of the brain and how it experiences pain through the ‘pain map.’ It is the mind’s metaphor for the body. I see it as a glowing network of lights and connections in the matter of the brain that mirrors the experience of the body, much as reflexology maps the organs across the regions of the feet. Usually, we feel pain as a healthy response to an acute danger. But with chronic pain this function doesn’t switch off, so the body is in a constant state of tension. Learning from this pain, the brain mistakenly expands the map, taking up real estate from surrounding areas. And so chronic pain syndrome develops.
The good news is, because the brain is plastic it can also unlearn the map and reduce the pain, or even not experience it at all. I devoured Moskowitz’s website and the accompanying ‘Neuroplastic Transformation Workbook’. I stopped seeing my pain doctor. And I stopped taking all medication.
Instead I began to carry two laminated cut-outs of the brain in my bag. One was of the brain with the 16 pain centres firing, the other was of the brain with just a few firing. I visualised these 16 pain spots disappearing, being snuffed out by a dark lapis-lazuli blue the texture of oil pastels. I told my brain to ‘stop producing Substance P!’. It doesn’t matter what substance P is. It’s science’s metaphor for my brain’s mistaken reaction to an acute danger that is not there. Luckily, as an English teacher I’m good with metaphors. A few years later, I am still talking to my brain, anthropomorphising the pain regions of my brain as characters that I coax into doing all the other things they are in charge of — smelling peppermint, remembering the past — tricking them into not doing pain. I try to use each pain spike as an opportunity. My belief that pain is manageable is improving – but slowly.
I am able to function with a keen mind again. In fact, these exercises sharpen my mind and combine with my meditation practice. They keep me engaged in facing my pain, not ignoring it. Doing this kind of work keeps me fully present, clear. I am convinced this offers more hope than depressing it.
I cannot say with certainty that this is a long-term fix, but I maintain that believing it will be is part of the treatment. Despite a new and unwelcome development to my condition, in a painful hip, I have to keep exercising that faith, developing it like a muscle. Shrinking the pain map, re-imagining the body. I have started seeing a chiropractor recently who enthusiastically told me about his first-class thesis on how much the mind does pain, not the body. It re-energised me and reminded me that the management of my pain is down to me, not to a doctor or a drug company. My pain is often gaspingly bad, but no worse than it was on opioids. I get pain-free glimpses that I think I must be imagining. But to imagine fiercely and consistently changes the brain. And I can read Forster aloud.
But I am not at all sure I would have embarked on this difficult journey had opioids offered genuine relief.
Most medical studies I found were understandably concerned with the short-term dangers of opioids. I had to dig for anything on their efficacy as a pain reliever. When I was researching this, I read study by Erin Krebs, a doctor whose research focuses on the benefits and harms of opioid analgesics and the management of chronic pain. She produced a paper in 2018 that, incredibly, was the first of its kind to examine the effects of long-term opioid use with patients with chronic pain. Until then studies had only been undertaken for up to five weeks, which seems woefully inadequate when you note the word ‘chronic’.
Krebs’s study showed that not only did opioids fail to give greater pain relief than other types of medication, but by the end of the study patients were actually in slightly more pain. Worse still were the impacts of side effects in the opioid group, some of which I have described. These findings have startling implications, not least for the pharmaceutical industry.
Anna Lembke, an addiction specialist at Stanford University, advocates training doctors in other approaches to chronic pain. She says, “We need to change our narratives around pain, encourage notions of resilience and understand the limits of modern medicine”.
One of the FAQs on Doidge’s website is, ‘Can you give me a referral — the name of a person who practises neuroplasticity who lives in my area?’ The answer is ‘No -unfortunately not.’ His first book, ‘The Brain that Changes Itself’, has sold over a million copies. The techniques are cutting-edge, largely unacknowledged or unpractised by the medical profession, loitering hopefully on the edges of the mainstream, yet to undergo the necessary trials. The PoNs device, a small strip which sits on the tongue and neuromodulates and resets the brain, underwent testing during the writing of the book. This year it finally was given FDA approval for use with MS patients. Ironically, the FDA had already approved the NSS-2 Bridge device — a small electrical nerve stimulator placed behind the person’s ear, that can be used for up to five days during the acute withdrawal phase of opioid addiction.
If it took until 2018 for a full study questioning the efficacy of opioid pain medication to be published, and until 2023 for approval of a non-pharmaceutical intervention, how long will it take for long-term studies in the new world of neuroplasticity to be commissioned? And if the patient is no longer reliant on medication and given agency, what are the chances of it being funded?
Jinpa Caroline Smith, Executive Contributor Brainz Magazine
Jinpa Smith is a narrative coach, teacher and writer. But she is also a longstanding Tibetan Buddhist, nomad and survivor of Cptsd. She and lives with chronic pain syndrome a cat. A life of travel, teaching drama and poetry, being a mother to a Quantum Physicist, and exploring life from the spiritual to the sexual to the intellectual, has given her a unique blend of humour, compassion and wisdom. She believes that journey metaphors can be useful, but so can cycles. There is no arrival, and we are all just doing our best to be happy. She works with people across the planet online and in person, rewriting stories and changing habits.
Effect of opioid vs nonopioid medications on pain-related function in patients with chronic back pain or hip or knee osteoarthritis pain the SPACE randomized clinical trial. / Krebs, Erin E.; Gravely, Amy; Nugent, Sean; Jensen, Agnes C.; DeRonne, Beth; Goldsmith, Elizabeth S.; Kroenke, Kurt; Bair, Matthew J.; Noorbaloochi, Siamak. https://jamanetwork.com/journals/jama/article-abstract/2673971
This is a report on research into meditation and mindfulness as an alternative to opioid medication https://www.mindandlife.org/pain-relief-without-opioids/
Where does it hurt? Pain map discovered in the human brain http://www.ucl.ac.uk/news/news-articles/1211/281112-pain-map
What is the Mind? His Holiness the Dalai Lama , Cambridge, MA https://www.lamayeshe.com/article/what-mind