Long read

Meet my friend pain


Reported by Tom

Published on Monday, February 14th, 2022

Equality Health
Long read

Meet my friend pain


Written by Tom

Published on Monday, February 14th, 2022

Equality

Health

For 17 long years my wellbeing was undermined by chronic pain. The savage flare ups of pain I’d experience during gym workouts and sports sessions compelled me to ditch exercise and miss out on the feel-good chemicals it releases. Without those ‘happy hormones’ flowing through my brain, I struggled to keep my inner-gremlins at bay and my mood was generally low.

man looking glum
Weight-lifting had to go because it hurt my right shoulder.

Weight-lifting had to go because it hurt my right shoulder, which was the first part of my body to fall victim to persistent, unexplained and seemingly unresolvable pain. Any time I did any upper body resistance work, my right shoulder would feel as though someone was plunging a hot needle deep inside it and wriggling it around. And then it would burn and throb for weeks afterwards.

Without those ‘happy hormones’ flowing through my brain, I struggled to keep my inner-gremlins at bay.

Then, as my mysterious condition worsened, manifesting over time in my left shoulder, mid-back, left hip and left knee, I found myself waving goodbye to running, Thai boxing, tennis, tag rugby and, finally, cycling.

Hiking was the only activity that wasn’t problematic, but I couldn’t do that on a daily or even a weekly basis.

The problem started in the choppy winter of 2003/4 when I came back to London after a seven-year stint of living in Vietnam. A few weeks after my return, I noticed I’d get a needling burning sensation in my right rotator cuff whenever I held an overhead bus strap. Unbeknownst to me, this signalled the start of a near two-decade long battle with persistent pain.

man holding bus strap
I noticed I’d get a needling burning sensation in my right rotator cuff whenever I held an overhead bus strap.

For a while I ignored the problem, assuming it would go away. But several months later it was still causing me grief, not only on the bus but also whenever I used my shoulder to throw, pull or push something.

There was no clear cause. I had no underlying physical illness or condition and I hadn’t sustained a recent injury. It was a mystery.

Full of misplaced optimism, I took myself off to the British School of Osteopaths in Soho, believing its practitioners would rid me of my niggling pain in just one or two sessions. I’d be a gym-beast again in no time, I thought.

There was no clear cause. I had no underlying physical illness or condition and I hadn’t sustained a recent injury. It was a mystery.

Nothing doing. Over the next few months different osteopaths stretched, poked, twisted and massaged me and achieved nothing. In fact, it was while I was with them that I developed new persistent pains in my left shoulder and mid-back.

The osteos scratched their heads and tried to explain what was happening.

“It’s your sitting posture,” said one. “It’s the way you’ve been doing weights. Too many imbalances in your body,” said another.

They were clutching at straws. I could tell.

One female osteopath, at her wits end, cried out: “But you’ve got such a strong body! I just don’t understand it!”

Crestfallen after months of getting nowhere with me, she handed me over to the clinic’s nuclear option: Wayne. Shaven headed, muscled up and intensely driven, Wayne was renowned for getting speedy results. He only needed to treat his stable of mixed martial arts fighters a handful of times, he told me, to rid them of their injuries and have them ready cage combat – even after they’d been on the receiving end of some heavy-duty violence.

Crestfallen after months of getting nowhere with me, she handed me over to the clinic’s nuclear option: Wayne.

Wayne massaged me so hard one day that I felt like I’d been kicked in the ribs by a horse. My body went into shock and I had mild flu-like symptoms for several days. He also instructed me to do exercises with Therabands and when I didn’t do them exactly as he’d told me to, he didn’t mince his words.

brutal looking man
Shaven headed, muscled up and intensely driven, Wayne was renowned for getting speedy results.

“You’re weak!” he shouted, “and you’re ruining my reputation!”

Like those before him, Wayne failed to make even the slightest dent in my problem, but unlike them he made out it was my fault.

“It’s all up to you. And don’t fall in love with your pain!” he said in my last session with him.

Over the following 16 years, I spent thousands of pounds on treatments. I tried sports massage, Thai massage, Shiatsu massage, acupuncture, salt baths, Chinese cupping, float tanks, Pilates, Alexander Technique, more osteopaths, craniosacral therapy physiotherapy, herbal medicines, pain-killing injections, specialist desk equipment and chairs, Iyengar yoga, chiropractors, mindfulness and podiatry (foot specialists).

Don’t fall in love with your pain!” he said in my last session with him.

I also had Xrays and scans of my back, hip, ankles and knees. They showed some wear and tear, things like bulging, torn or dehydrated discs in my spine, but nothing that was serious enough to justify the risk of an operation, especially not on my spine.

Meanwhile, over-the-counter medications left me goggle-eyed and drooling at my desk but failed to stop the deep aching in my back or the needling burning sensations in my shoulders and knee.

man spitting rainbow out of mouth
The medications would leave me goggle-eyed and drooling at my desk.

The other thing I tried multiple times was simply ignoring my condition and going back to the activities I loved. This unfailingly resulted in flare ups, the worst of which were the ones that would strike in my back. Sometimes they were so bad they’d blot out all thoughts and other feelings.

 

man with head in hands
Sometimes I had to take time off work, either because the pain was too much to bear or because I had to attend NHS appointments.

Sometimes I had to take time off work, either because the pain was too much to bear or because I had to attend NHS appointments. You’d hope employers would have been understanding about my condition, but some, including two disability charities, hounded and pestered me about sick leave absences and the time taken to reach and get back from appointments. Inevitably, this added to my anxiety and stress levels.

At their worst, those flare ups would blot out all thoughts and other feelings.

In fact, stress at work was the other trigger for flare ups, causing me, on a good number of occasions, to experience a perfect storm of mental distress and physical discomfort.

man with back pain
Sometimes I experienced a perfect storm of mental distress and physical pain.

Never before in my life had I had pains that just wouldn’t go away. As a child, I sustained numerous scrapes and bruises from minor accidents and at 16 I broke my ankle so badly in a medieval-style game of football that my foot ended up facing backwards. That hurt I can tell you!

I’d also been in a coach crash on a school trip in France that resulted in seven deaths and left me with multiple deep cuts on my head, left knee and buttocks.

bus crash
I’d also been in a coach crash on a school trip in France that resulted in seven deaths

But the unpleasant feelings that accompanied all those injuries appeared suddenly and faded away in a matter of weeks or months.

Those sensations, known in the medical profession as acute pains, made sense. I’d sustained tissue damage, my body had sent distress signals to my brain and then I’d recovered. Simple as that. Everyone understood it.

Not so with persistent pain. The years kept ticking by and yet still none of the medical practitioners was able to identify a solution that actually worked or offer a helpful explanation of what was happening.

 

doctors

It wasn’t just the osteos;  none of he medical professionals had the answer.

Then in 2017 I was offered surgery on my right shoulder. A new scan had identified a bony spur that was digging into my flesh there. I was delighted. I’d been fantasising for years by then about having the problematic bits of my body carved out and binned so I was keen to go under the knife.

Along with a group of other long term sufferers, I padded miserably into a hospital classroom.

Nothing changed, however, and so I returned to the surgeon’s slab the following year to have another fragment of bone chiselled out.

The result? Zero improvement.

And that’s when I was referred to the Chelsea and Westminster Hospital’s pain clinic. Along with a group of other long term sufferers, I padded miserably into a hospital classroom and listened to a physiotherapist and a psychologist explain that persistent pain was caused by an over-sensitised, malfunctioning nervous system and not by any actual physical problem (or tissue damage, to use their words).

woman doing operation
I returned to the surgeon’s slab the following year to have another fragment of bone chiselled out.

I scoffed. How ridiculous! These people weren’t taking my physical problems seriously! How dare they?!

See, because although the identification of my physical ailments hadn’t led to any improvements, I still thought they were causing the pain and and I still believed surgery – yes, even more surgery – was what I needed.

I scoffed. How ridiculous! These people weren’t taking my physical problems seriously! How dare they?!

And so I challenged them: “Hey, look, I’ve got loads of wear and tear in my body and my hips are twisted and my legs are different lengths. How can you say that’s not causing pain eh?”

“You may well have tissue damage, but it in no way explains the level or duration of the pain you’ve been experiencing,” the psychologist said.

That could only be explained, they said, by a hypersensitive nervous system, which in turn could have been caused by a number of factors including stress.

That tallied well with what a Paris-based podiatrist had said to me several years previously. After listening patiently to my story, she declared it was almost certainly the trauma of returning to England from Vietnam that harpooned my nervous system and triggered off my pain symptoms.

It certainly had been a distressing period. When I returned, I was jobless, penniless and, worst of all, homeless.

I had relatives dotted around London and in Newport Pagnell but my family prizes independence, individuality and privacy and none of them really wanted to have their lifestyles disrupted by having me stay with them. If I was paying a high price now for my little Vietnam adventure, they reasoned, well, that was my problem.

For several months I searched desperately for a job while moving between surly relatives and friends, kipping on camp beds and sofas and feeling unwelcome and tense.

 

sad man
When I returned, I was jobless, penniless and, worst of all, homeless.

Although I was Disabled, destitute and had a decades-long connection with the London borough of Islington as well as a lengthy history of paying into the system through tax and NI contributions and a clean criminal record, I was told I was not entitled to social housing. There was no point, they said, me even bothering to join the housing waiting list.

Even kitchens felt unfamiliar. I’d stand in them blinking at the appliances, trying to remember how to cook, like Greystoke surveying his first ever tea party.

Besides having no job and nowhere to live, I was also suffering from a type of culture shock. I’d been out of the country for so long, enjoying the tropical weather and relaxed lifestyle of Saigon, that I’d become unaccustomed to the London vibe.

People seemed unreasonably aloof. Roads, with cars thundering down them, felt hostile. Shops seemed filled with a ridiculous overabundance of riches. As for waiting in the cold at bus stops instead of swanning around on my scooter wearing flipflops, shorts and a t-shirt…..well, let’s just say it took a while to adjust to that.

And because I’d hired home help cook and clean for me for nearly all my time in Vietnam, even kitchens felt unfamiliar. I’d stand in them blinking at the appliances, trying to remember how to cook, like Greystoke surveying his first ever tea party.

I was fighting for my survival. Street homelessness was always just one argument away and the stress coursing through me was so overwhelming it made my ears buzz. Meanwhile, my life-long mental health problems (obsessive compulsive disorder and depression) were worse than ever.

man with head in hands
Meanwhile, my life-long mental health problems (obsessive compulsive disorder and depression) were worse than ever.

If this ordeal did trigger off my persistent pain problem. I wouldn’t be the only person it’s happened to.

Research by the National Centre for Biotechnology Information has found pain is a substantial problem in homeless people, with 59.3% experiencing chronic pain. Meanwhile, the homelessness charity Groundswell found that 53% of homeless people live with long lasting pain.

These figures are high compared to the 34% of the general population that Public Health England says lives with chronic pain.

I was fighting for my survival. Street homelessness was always just one argument away and the stress coursing through me was so overwhelming it made my ears buzz.

Public Health England’s chronic pain in adults 2017 report also says there is a strong connection between chronic pain and anxiety/depression and other long lasting mental health illnesses, although it isn’t clear whether the pain or mental health problems come first.

Like many health problems, chronic pain is also an equality issue. 41% of those living in the poorest areas, 40% of those with low-ranking jobs and 77% of those who are permanently unemployed for health or disability reasons live with long-lasting pain.

So maybe it was the stress of being homeless and marginalised had triggered off my pain as it seems to have done for others too, but what was the solution?

Like many health problems, chronic pain is also an equality issue.

The answer, according to the NHS pain clinic, was a graded activity programme.

Though I wasn’t convinced, I rocked up to their physio clinic once every two weeks to design an exercise plan and monitor my progress with it.

The strategy was to pitch exercise levels well below the level at which they had triggered off pain and then nudge up the intensity by small increments over time.

After doggedly following this programme for about two years, I finally reached the point of being able to do most of the sport I wanted to do in the way I wanted to do them.

In the case of running, this initially meant going for as little as a minute at a time as previously a run of only three minutes would have left me feeling like someone had speared me in the back and left the blade embedded in my muscles. The same principle applied to weight-lifting.

Although the workouts at the beginning were not particularly satisfying, I was relieved to discover that I could at least do some exercise and remain pain-free.

happy man
I was relieved to discover that I could at least do some exercise and remain pain-free.

It took a lot of patience but after doggedly following this programme for about two years, I finally reached the point of being able to do most of the sport I wanted to do in the way I wanted to do them.

I don’t know what the science is, but the programme worked where nothing else had done.

As I returned to regular exercise, so my wellbeing improved and most of my persistent niggles and flare ups of pain vanished. The only persistent pain remaining now is an ever-present dull ache that runs the length of my spine, making it feel permanently bruised.

I can hardly put into words how much better I feel now. I am happier, less stressed, more alert, fitter, lighter and stronger. And I feel free, free to try whatever activity I want without fear. It’s a cliché, I know, but I now feel like a kid in a sweet shop, overwhelmed with exciting options.

Last year I joined a tennis league, ran the Royal Parks half marathon in one hour and 58 minutes and returned to cycling. This year I’m doing the Hackney half marathon and the London sprint triathlon. The only fly in the ointment really is that I still have to be careful with ball sports, like tennis, because the sudden accelerations and twists and turns can cause occasional flare ups, especially if I’m not playing regularly.

Tom running half marathon
Last year I ran the Royal Parks half marathon in one hour and 58 minutes

I’ve come to understand that problems that are part of me and my life history, such as my chronic pain and Obsessive Compulsive Disorder (OCD), cannot be either destroyed or ignored.

I don’t know what the science is, but the programme worked where nothing else had done. Perhaps it triggered a virtuous cycle whereby carefully planned exercise sessions released feel good chemicals which calmed my nervous system and reduced my pain and stress, which then in turn enabled me to do more exercise? I can’t be sure, but as I say, it worked.

It’s not just the final result that’s positive, it’s the learning I’ve gained over the last 19 years. I’ve come to understand that problems that are part of me and my life history, such as my chronic pain and Obsessive Compulsive Disorder (OCD), cannot be either destroyed or ignored.

Years of bitter experience have shown me that if I invest energy in angrily trying to destroy them through treatments, therapies, medications or checking rituals (as with OCD), they simply loom larger in my mind.

What’s worked in the end has been the efforts I’ve put in to understanding, accepting and adapting to the problems. Acceptance here is not to be confused with resignation. It means acknowledging and respecting a problem without despising or fearing it. Only once you’ve done that, I believe, can you make friends with your demon and find a resolution that leaves your mind and body in peace.

I could never have done it though, without help from others.

Written by Tom


Tom is leading the Camden Disabled People's Voices citizen journalism project. He works for Camden Disability Action as an Engagement Officer.

Read all of Tom's articles

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2 thoughts on “Meet my friend pain

  1. Thanks for sharing your story.

    So much of it really resonates with me: the frustrating search for effective treatment, the challenges of traditional treatments, such as medication and surgery and life shrinking as you do less of what you enjoy. I have had a chronic pain for over 9 years, which makes sleep, work and relationships harder, and also happen to have OCD.

    The pain leaves you in bleak mental and physical place like you are being pinned down by a bully and can’t get up.

    It’s encouraging to hear you found a route through, are feeling so much better and the benefits of a different mindset and doing more.

    Thanks again.

  2. Thank you for your comment. It is really great to get comments like this from readers. I hope you find a way of living better with your pain and OCD too!

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