Undiscovered Countries: Pain and Hope

"Damn it, Bones, you're a doctor. You know that pain and guilt can't be taken away with a wave of a magic wand. They're the things we carry with us, the things that make us who we are. If we lose them, we lose ourselves. I don't want my pain taken away! I need my pain!"

-- James T. Kirk, (Star Trek V: the Final Frontier)

Pain is like a memory. As such, it’s quite possible that writing this article could be regarded as an act of self-harm. It’s not just that it hurts to write, although it does; it’s that when I started thinking about this subject, reading around it, even jotting down notes, I felt the usual pain in me flare up again, and for a while I considered calling it off. A psychiatrist would call that “avoidance”. I would call it “learning from experience.”

Looking back, those early years when I began to feel chronic pain are a blur. Unable to home in on a diagnosis, doctors ordered tests and scans – X-rays, MRIs, ultrasound, nerve conduction studies – but waiting lists regardless of wherever I happened to be (i.e. university in the UK, first home in North America and then other places once I started working and found myself transferred all over the world) were invariably months long. I ended up going for one scan privately and spent days reading books and watching videos on how to read MRIs until the official verdict arrived: there may have been a slight narrowing of the foramen in my spine (the bony arches on the side of each vertebra, through which nerves pass). Bone spurs, in other words. But the specialists couldn’t be sure, and when my MRI finally arrived months later, it came up clear. No spurs, no narrowing. The mystery continued.

I don’t know which the professionals ran out of first: options, or interest. But eventually there were no more tests to be done. The best diagnosis any doctor could settle on was “some kind of repetitive strain injury”. (RSI, which experts now refer to as repetitive strain syndrome, is a group of tendon and muscle disorders associated with overworking. Tennis elbow is one. So, too, are carpal tunnel syndrome and cubital tunnel syndrome, both of which were suspected at various points.) A year into my pain, I was still searching for a cure, pursuing every treatment, supplement and crank self-help book I could. But I was wasting my time. By then, my pain had already become chronic.

To be human is to hurt. Almost all of us experience pain every day; most of the time, we are better off for it. Pain is a defense mechanism, one that helps us to avoid harm. Without it, our lives would be much shorter and considerably more gruesome.

Although pain is frustratingly subjective, it is, at least for the most part, relatively predictable. You spill a hot cup of tea, and the moment the liquid scalds your skin, damaged cells release chemicals that activate nociceptors – a body-wide network of pain detectors – in the surrounding tissue. Those nociceptors transmit a signal through the nervous system: an alert is fired to your spinal cord, triggering a reflex reaction (removing your hand from the hot object). At the same time, another signal passes to your brain so it can work out how bad the damage is, and therefore how much it needs to hurt to discourage you from doing it again. Pain researchers commonly compare that moment to a gate being opened: the worse the injury, the wider the opening. The problem arises when, in some cases, the gate stays open. The pain becomes chronic.

Chronic pain – any pain that persists for longer than three months – is a vast and growing public health problem. The numbers are unclear (unlike cancer, there is no national register). By some estimates, between a quarter and a third of the UK population live with ongoing pain; for those who are 75 or over, that figure rises to more than half. Conservative estimates suggest that chronic “primary” pain – that which has no identifiable physical cause affects approximately 1.5 billion people, or about 20% of the world's population. For those with this condition, myself included, pain is no longer a symptom: it is the disease itself.

Pain flare‑ups would happen seemingly at random, and last days or weeks at a time

Despite its prevalence, we understand relatively little about what causes some pain to become chronic. Certain risk factors make one more susceptible: biological sex (women are more likely to report chronic pain), genetics, smoking, depression, poverty. But the exact chemical and neurological conditions that cause pain to linger are still the matter of intense study. What seems certain is that something causes the pain circuitry in the body to become over sensitized, inferring pain even if no damage has occurred. In some cases, even the lightest touch can trigger a pain response; for patients with this condition, allodynia, it can be agony just to get dressed.

In my case, one of the most confounding aspects of my new situation was how unpredictable and nonsensical my symptoms would appear. Pain flare‑ups would happen seemingly at random, and last days or weeks at a time. The pain would move around: one day it would be in my forearm, then my armpit, then the back of my hand, before settling in my ulnar nerve. I felt as if my bones were being haunted by an unseen foe.

Meanwhile, I was burning through my salaries by paying for physiotherapy, chiropractors and buying new posture-correct home office setups. I started wearing a wrist brace, then an elbow brace, then a knee brace; my cupboard filled with various physiotherapy tools. FlexBars, resistance bands, knobbly massage wands – from their curious glances, I think the delivery folks and post persons thought I was buying up a dungeon’s worth of dubious toys. None of them worked. All except my rather overflowing collection of walking canes – my third appendage if you will, which has been my steady companion to places unknown and unseen through mud, grass, field, ice, snow and rain. There is something strangely reassuring of feeling the relative solidity of a cane’s tip anchoring you to the ground like gravity.

I tried alternative therapies. I started an expensive CBD habit, adding to a growing cupboardful of supplements. And I read every book and paper I could find chronic pain, hoping to find a cure. The list of potential suspects grew to include trigger points (knots in the myofascia, sheath-like material that surrounds muscles), poor diet, blocked chi and, according to one bestselling book, subconscious self-directed rage. I consumed this material avidly, trying every treatment suggested. I have no doubt that many of those things work for other people. But not for me.

Then there was the medication. Having flirted with addiction in my history, I refused to even consider opioids, so was instead prescribed anti-inflammatories and put on to the global healthcare pathway of neurological pain drugs: amitriptyline, an antidepressant often also used to treat nerve pain; pregabalin; and later, gabapentin, an epilepsy medication that I later discovered is popular in prisons because it can enhance the high from other substances. Getting prescribed the correct drugs was a painful process too. For example, amitriptyline did nothing for the stabbing that by then had settled in my inner elbow but did make me so drowsy I would occasionally drift asleep during the day; when I asked to change medication, the GP practice explained that, because the effect of these drugs can be slow, I was expected to endure them for at least several weeks before being prescribed something new. (This strategy is unintentionally cruel and clinically misguided, given that studies show that the longer a person is in pain, the harder it is to get rid of.) I eventually persuaded the doctors to skip that step – crying down the phone with a suitably overwrought performance will do that – but, even then, the stronger medication didn’t dull the pain, either.

It wasn’t just me, at least. I later discovered that, according to the latest research, gabapentin helps only around one in seven patients with neuropathic pain like mine (and even then, does not eliminate the pain, merely reduces it). The other drugs aren’t much better. In fact, a comprehensive review by researchers found that there is little evidence that most of the antidepressant-class drugs used to treat chronic pain have any effect beyond that of a placebo. (They found one exception: duloxetine.) The lack of evidence for antidepressants, and the deadly epidemic of opioid addiction, are among the reasons that certain authorities recently amended their recommendations for chronic pain to focus on psychological treatments. Back then, however, I had no idea All I knew was that, starting in my late 20s, I had suddenly become a person who owned a pillbox and a medication schedule. and, even after all that, I was still in pain.

Just over a year in, my doctors had apparently exhausted every diagnostic possibility. Short of sending a surgeon in to dig around in my nerve canals – risky if they’d even try – there was nothing they could do, and so I was referred to the specialist pain clinic at my local hospital. These clinics are staffed with nurses, physiotherapists and psychotherapists. At my first appointment, a nice, well-meaning doctor told me upfront: “We’re not here to provide a cure, but we are going to try to help you manage the pain as well as possible.” I was put on a new course of physiotherapy and given a dedicated pain psychotherapist. I started a pain diary; tracking hurt the way some gamblers track the horse races. Rather than feeling seen, I felt abandoned. The message seemed simple: if I wanted a cure, it was now up to me.

At some point in my pain journey – I forget where now – I was introduced to the distinction between “pain” and “suffering”. Pain is acute sensation, dictated by nociceptors and nerve pathways. Pain is verbs: stabbing, burning, aching. Suffering denotes everything else caused by that pain: avoidance, anxiety, loneliness, depression. If pain is what our nerves tell us, suffering is how our minds react.

When other people asked about my pain, I tended to respond in a typically stoic fashion. “It’s fine,” I’d say. Or: “You know, good days and bad days.” The truth is that I was suffering. I could barely work. Hobbies – video games, walking – were all casualties. They were replaced with research: books, scientific papers, YouTube videos. Being a writer who has long written about humanity and its foibles, I had endless questions about my condition but nobody whom I could easily address them to. In reality, my pathological search for a cure was only making me more and more desperate.

Other people were sympathetic – at least, at first. The thing about chronic pain is that it is invisible (except for the cane and the occasional hobbling). For most people, pain is temporary, so after a while everyone forgets. “Oh, the arm thing? Is that still going on?” my colleagues would say, half-heartedly. Friends stopped checking in. The receptionist at the GP surgery started to seem irritated at the sound of my voice: “Is it about your back again?” Others were well-meaning, if ill-judged. I remember clearly the time one doctor, after listening to me worry aloud about never being able to work again, suggested earnestly: “Well, is there a job you can do that doesn’t involve your hands?” Like what? Most roles don't have an autopilot setting.

To be in chronic pain is to live in phases. The pain would ebb and rise like a tide, though what lunar influence lay behind it eluded me. I would have a good week followed by a bad month. Progress is never linear, the doctors would say. I worried endlessly. A year became two years. My symptoms changed – the locus of the pain slithering around my arm and up into my neck, like some kind of parasite – but my mood didn’t. I grew used to living in this new body, always hurting, always tired, always angry. The anger made me ashamed; the shame led me further into the spiral.

One of the strangest things I’ve learned about pain is how bound it is to attention. Soldiers in the heat of battle ignore injuries which could otherwise be fatal; nurses distract babies before administering shots because scientists have proved it will hurt less. Distract the brain from pain with another sensation, and the original pain is reduced. Perversely, this is true even with chronic pain: one of the only times my arms wouldn’t hurt was when I had a headache.

Some writers are more prone to dark moods than others. After all, unlike most other professions or hobbies, we have to spend an inordinate amount of time in our own heads with our lives and experiences to mine. The urge to hurt myself became darker. Ultimately the only way to not live with pain, I figured, was to not live at all. The idea was like an earworm. Once it caught on inside my head, I couldn’t seem to rid myself it. “What if?” quickly turned into “How?”. The only thing stopping me was the thought of what might lie beyond. (In this, too, it turns out I am not alone: as many as half of all chronic pain patients may report suicidal thoughts. In the US, nearly one in 10 suicides is a chronic pain sufferer.)

Ironically, as life advanced my errant thoughts were superseded by circumstance, and NDEs (Near Death Experiences) intruded upon my plans to cause myself injury. Like I mean, how rude (!) Some of those are chronicled here in this blog, but those are separate tales.

I found a better therapist, privately. If I had waited for a government system appointment, I might not be here now – and, well, a number of years or so later, here I am, writing this story.

The medical professionals who have most helped me through this journey have been the unexpected ones: the osteopath who took me and my curiosity seriously, even if the treatment did nothing; the pain nurse who helped me navigate medication withdrawal; the physiotherapist who, as I will describe, taught me more about the importance of getting some joy back into my life, and in so doing saved me more than any exercise. And a pair of extraordinary doctors who, on opposite sides of the globe have been there through it all. One is the calmest, most Zen lecturer to ER doctors on mindfulness; the other is both my friend and university contemporary of four decades. They never gave up trying to find out what was going on. And there are some more recent friends who, while not medically trained, are still in wellness and healthcare, helping me realize that as much as physical recovery is a necessity, so too must there be a modicum of mental peace and that there's nothing better than to surface and air the dusty compartments of my soul.

At other times, the global healthcare system has caused me as much suffering as the pain itself. I have muddled through years of appointments and tests, dealt with physicians ranging from the uninterested to the incapable. Rarely have I felt like more than a list of symptoms, or a name to cross off a waiting list.

As of this year, I will have been physically hurting for decades. For most of that time, I have held on to hope: the hope that I was just the right scan, the right referral, away from the person who would diagnose the thing. The person who would fix it – fix me – and make my life the way it was before.

A few months ago, I went for a routine checkup with the consultant at my pain clinic (neither of which I will name here). The appointment did not start well. The consultant, a surly man, seemed to take an issue with my blunt tone, and how unhappy I was about my treatment. He asked me what I wanted from them. To get better, I thought. Instead, I explained that among my ever-changing symptoms was a strange anomaly. Surely, I thought, there must be a physical reason behind it. Something in the spine, a pinching somewhere. That, I thought, couldn’t be just in my head.

I don’t recall the exact details of the rest of the conversation because of my emotional response to what happened next. At some point, after condescendingly explaining that “all pain is psychological”, the consultant made a joke: “If you really want the pain to go away, I could give you a hammer, and you could take it to your big toe.” I think he was making a point about attention. All I heard was a medical professional, inside a pain clinic, making a self-harm joke towards someone who had been dealing with recently suicidal thoughts. This reminded me of another guy – this one well-renowned – who’d spent much of his session time praising my resilience in condescending tones and then spending thirty minutes on soliciting my advice on how to get published.

It’s funny: a few months earlier, that interaction might have sent me into another spiral. But, to my surprise, in the weeks after the appointment, something inside me lifted. I finally accepted that, as well-meaning as the medical professionals might be, they were no longer really trying to make me better. Not better in the way that I intended. To most of them them, I was a lost cause. The sensation was not of failure, but of closure.

A few months ago, at the urging of my excellent new therapist, I started reintroducing the hobbies I had neglected for so long. I revisited Dragon Age: Inquisition; I threw myself back into playing within the world of the Witcher; I started to make an effort to go out more and even consider the occasional social non-business event. I anticipated that most of those things would lead to agonizing flare-ups. Instead, my life, and my mood, improved measurably. And, because pain intensity is so clearly linked to emotion, as my mood has lifted, so has the pain.

Pain researchers now understand that the key to recovery from chronic pain is neuroplasticity: finding a way to retrain the brain through a combination of cognitive behavioral therapy and other methods, to try to desensitize the nervous system. To convince my body that it is no longer under attack and close the gate for good. Pacing, as pain therapists call it – short bursts, here and there – is crucial. But so, too, it turns out, is joy. So now whenever a cat comes up to me, I hold it as tightly as I can, despite my allergy.

The pain isn’t gone – it may never be gone; I know that. But, for now, it doesn’t have control. I still have so many questions that remain unanswered. But I’ve learned that even if I can’t rid myself of pain, I can at least ease the suffering.

"I've found that even in the darkest of circumstances, there is a light. Sometimes only a glimmer. Trust that light. Find a way back. No matter what it takes."

-- Jean-luc Picard, 'Two of One' (Star Trek: Picard)