It’s rush hour and I’m gripped by a searing hot pain in my pelvis as I take my seat on the bus. It’s the kind of pain that takes my breath away, that leaves me pale and shaky. This is not the first time this has happened to me, so I know how to keep my expression neutral, but if any fellow commuter was being observant they may notice a bead of sweat running down my temple, or that my breathing is coming out in shaky staccato exhales. I had overslept that morning and my fatal error had been running to catch the bus. The 30-second sprint was enough to trigger my pain for two weeks.
Unless you’ve experienced chronic pain, it’s difficult to grasp just how it casts a shadow across everyday life. I’ve struggled with pelvic pain since my teens, and to some extent have learned to live alongside it. The cause was found, in my mid-20s, to be endometriosis, and the path to wellness has been a faltering, gruelling one.
For some chronic pain conditions, including endometriosis, there is no magic cure. In my case, an extensive surgery in 2020 greatly improved my quality of life. But “chronic” means it will probably always be with me, to a greater or lesser degree, which is hard to accept as a patient. Everything we learn about medicine from childhood is that pain or injury is acute and temporary. Something hurts and then it heals, and taking painkillers is part of that process. But now, a new study has found using drugs such as ibuprofen and steroids to relieve short-term health problems could increase the chances of developing chronic pain in the long term.
This new research joins a growing body of evidence that painkillers could be doing more harm than good. Recent years have seen an increasingly urgent effort among the medical community to manage pain in a different way, by prescribing less and relying on more holistic measures such as physiotherapy and mindfulness. In 2020, the National Institute for Health and Care Excellence (Nice) suggested that patients with chronic primary pain – where the cause for the underlying pain is unclear – should be offered “supervised group exercise programmes, some types of psychological therapy, or acupuncture”.
That’s how I found myself in 2018 attending an NHS pain management course. Every Monday for seven weeks, I went back to school alongside 10 other women in a bid to reframe our thinking about our conditions. We were a motley crew from all over the country: a 25-year-old nurse, a retired teacher, a fortysomething mother of two, all of us suffering from chronic pelvic pain in different but equally appalling ways. The common thread between us was that we had exhausted all other options and most of us felt our doctors didn’t really know what else to do with us.
We sat on hard plastic chairs in a bare clinic room illuminated with strip lighting, while healthcare professionals ran different sessions. A psychologist asked us how we feel in our bodies when we are in pain: do we feel anxiety in our stomach or in our chest? A physiotherapist got us to play with hula hoops and rackets and balls to show us that exercise can be fun! And we’re more capable than we think! Even if that meant taking a slow and steady approach to activity. An anaesthetist explained that chronic pain isn’t necessarily indicative of injury or illness but rather indicates nerves “misfiring”, even if it feels very real indeed.
Our medication was also reviewed and fine tuned. And while there was no pressure to stop taking pain medication, emphasis was placed on broadening the scope of our coping strategies. Our progress was measured in questionnaires and an awkward test in which a physio counted how many times we could stand up and sit down on a chair in one minute.
The course was well meaning and, in many ways, radical. It offered the kind of joined-up care that so many suffering from chronic conditions are desperate for, and it was the first time anyone had considered how my pain was affecting my mental health, which it was, greatly. I don’t know how my peers have fared since, but even with the best of intentions, after it ended I struggled to keep up with the relentless positivity towards my condition without the regular check-ins from a team of cheerleading experts.
At first, I felt as if I’d made an uneasy truce with my pain. It hadn’t gone away, but we’d reached a common understanding. But as time passed I settled back into old thinking habits and, if anything, I felt where previously there was a fight in me to improve my pain by seeking answers, there was now a new apathy towards my prognosis. It would be foolish to underestimate the herculean effort it takes on the part of the patient to see their pain in a new light.
For me, success hinges on regular community support, something that seems idealistic when the NHS backlog in secondary care in England could take years to clear. It also naively ignores the socioeconomic circumstances that impact a patient’s ability to engage with the treatment. Attending this course would have been impossible for me if I didn’t have an understanding employer who let me take sick leave on full pay, or if I had caring responsibilities at home.
Just under 28 million adults suffer with chronic pain in the UK, and the economic impact of pain is greater than almost all other health conditions, due to its far-reaching consequences. Behind these figures are hard lives and wasted potential. If the NHS is serious about tackling a growing dependence on opiates, then we must first address the dearth of funding that goes into pain research.
Studies about painkillers such as this latest one provoke a collective sigh from chronic-pain patients. It’s important we evaluate the effect of current pain-management options, especially when they carry their own risks. However, as our population ages the need to know what does work becomes vital, made all the more complex by the fact that what works for one patient may not be effective for others.
Pain is as complex as the people whose lives it affects; our responses will have to be multifaceted too if they’re to meet the challenge.
Lucy Pasha-Robinson is a writer and commissioning editor
