After waiting a year to speak to a pain consultant at St George’s Hospital in south London, Melissa Harding’s scheduled call was cancelled this month because of the junior doctors’ strike.
The 51-year-old was left feeling desperate. Having suffered with chronic rheumatoid arthritis since the age of two, her pain had increased to the point where she is now dependent on codeine and morphine.
“It’s really difficult to get to the bottom of the pain that I’ve got and it feels like no one is really interested,” says Harding from her home in Guildford, Surrey.
She’s had back operations in the past – to no avail. She suffers from sciatica and has a pain in her backside that she describes as feeling like sitting on a stone. “If I could get rid of that it would make my life so much better, when I sit and sleep. I’m not able to work,” says Harding, who had to quit her job as a therapist in 2016. “I would love to be working. I’m not alone, there are loads of us out there.”
In the recent UK budget, money was allocated specifically to try to get the likes of Harding back to work, with an investment of £3.5 billion (NZ$6.9b) over five years to boost workforce participation and grow the economy. It included a £2b investment in support for disabled people and people with long-term health conditions.
The UK is in the grip of a pain epidemic. Every year, 20 per cent of the population visits a doctor for a musculoskeletal (MSK) problem. Globally, it is estimated that about one in five – roughly 1.5 billion people – suffer from chronic pain, with prevalence increasing with age.
The opioid crisis that engulfed the US has spread to the UK. The number of prescriptions issued by GPs in England for opioids more than doubled from 1998 to 2016.
Harding is just one of 17 million people who are affected by these conditions. While she doesn’t want to be taking medication, she is struggling to find an alternative. According to a recent study commissioned by Mamedica, a private cannabis clinic, just under three-quarters of the 51 per cent of people living with chronic health conditions for more than five years have accepted physical pain and discomfort as the norm.
What is the reason for this epidemic? Stress, modern life, sedentary lifestyles?
Professor Cormac Ryan, of clinical rehabilitation at Teesside University, believes the problem has always been there but we now understand the condition better. “Chronic pain as a diagnosis only came into existence quite recently.”
Previously, back pain and knee pain would have been viewed as separate issues. “By grouping them together it means clinicians can come up with appropriate treatment strategies for all these conditions that are all very similar,” he says.
This requires a completely new approach to understanding pain, Ryan says. “We now have clear evidence that pain and tissue injury are two separate things. You can have terrible pain with little or no tissue injury and you can have significant tissue injury with little or no pain.”
However, that is not how the vast majority of the public and some healthcare professionals see the problem, says Ryan: “They look at pain through a biomedical lens that says, ‘I’m experiencing pain, that must be because my tissues are damaged and need to be fixed. So I’m going to avoid things that make the pain worse, because they must be causing the damage. And I’m going to look for treatments that will fix the underlying tissue.’ It’s also misunderstood by some doctors.”
‘Like living in a prison’
At the age of 11, Fiona Symington fell off a horse. No bones were broken, no tissues torn. And yet for the next 26 years of her life she experienced so much pain that she needed carers, and spent periods of her life in a wheelchair and using a mobility scooter.
In her early 20s she dropped out of university because of pain and developed ME. “It was like living in a prison,” says the 41-year-old from Oxford. “I had better years and worse years, but most often I was stuck in bed in pain.”
Desperate, four years ago she decided to try a new approach after seeing adverts on Instagram for Curable, a US website that set out to explain modern pain science. “I thought it was rubbish, but if I tried it I could at least prove my pain had nothing to do with modern pain science.”
This branch of medicine suggests that when you experience chronic pain, the sensors and nerves that send out pain signals “misfire” and the spinal cord reacts in a way that amplifies a normally mild pain signal, creating severe chronic pain. Three weeks in, Symington realised it was starting to work. The techniques included meditations to build a sense of safety in her body and another which involved visualising turning a pain switch off in her head and writing exercises.
“There were a lot of pain science lessons which teach you the basics of how pain can be triggered unnecessarily. Quite often just that knowledge alone helps your nervous system calm down,” says Symington. “I also did visualisations of being well again. I would picture myself on a bike, looking really well and happy, and wearing bright red lipstick.”
Six weeks later, her pain disappeared. She has now restarted her life with volunteering and starting a master’s degree in health psychology, as well as supporting UK public health initiative Flippin’ Pain. “I want to help other people who are in pain,” she says.
Symington now understands her pain was caused by biological, psychological and social factors. While she does have Ehlers-Danlos syndrome, a connective tissue disorder, she says her pain was not telling her about the state of the tissues, but was rather her brain trying to protect her tissues and keep them safe. “Sometimes your brain can make a misjudgment. And if you’re going through a difficult or stressful time, your brain can overreact.”
It is this understanding of chronic pain as the body’s pain alarm system becoming over-protective that Professor Ryan is trying to promote. As community pain champion for Flippin’ Pain, he wants patients and healthcare workers to recognise how non-dangerous stimuli can cause pain.
“Frustratingly, many healthcare professionals still operate on a biomedical basis,” says Ryan. “Looking for evidence of tissue damage to explain pain.” The result is that patients end up frustrated that their pain isn’t taken seriously.
Surprisingly, scan findings and pain are poorly related. Studies have shown that nearly all knees of asymptomatic adults showed abnormalities in at least one knee structure on MRI: meniscal tears, cartilage and bone marrow lesions of the patellofemoral joint were the most common pathological findings. Similarly, says Professor Ryan: “If we look at 50-year-olds, 80 per cent with no back pain whatsoever have disc degeneration. These are just the kisses of time. They are normal age-related changes.”
However, if you suffer from pain and a scan shows disc damage, how would you react to a prescription to practise mindfulness? “People look for surgeries and medications as interventions they think will fix the problem,” says Ryan. “But the clinical guidelines are all in agreement that we should be moving away from those approaches of management towards more active, physical and psychological therapies.”
Physical activity, nutrition, a good diet, mindfulness, things that reduce anxiety, understanding your pain – all these lifestyle-based approaches can have a positive effect on chronic pain.
Lyndsey Hirst, a pain physiotherapist, says people develop fear-avoidance behaviour because of chronic pain. The most common chronic problem she sees is lower back pain.
“We talk a lot about the mind and body connection and what we’re trying to do is re-educate movement patterns,” says Hirst, of yourpilatesphysio.com.
Hirst’s mantra is “movement is medicine”. In her experience, people who have active jobs tend to be a lot better off than those who sit in offices. “They might have problems but they don’t tend to become chronic.”
Chronic pain is defined as pain that carries on for longer than 12 weeks despite treatment. However, many people suffering chronic pain can be scared of moving because they think it will increase tissue damage. This creates a vicious cycle for sufferers. There is evidence that sedentary behaviour can have a pro-inflammatory effect.
Hirst’s take-home message for her clients is that it’s okay to move and teach your body. “I’m not saying you should go out and do a HIIT class. But even something as simple as pelvic tilting, rolling forward and backwards, triggers the brain and tells it, ‘It’s OK, I’m moving and not in any pain’. It’s about getting the body moving without having the fear of moving.”
That recovery is possible is the most contentious point. “However, there’s plenty of data to show people can improve,” Ryan says.
Coping with chronic pain
Persistent pain can affect anyone: You are not alone. Building a good social network can be a helpful pain management strategy.
Hurt does not necessarily mean harm: It is good to engage in physical activity. Although this can sometimes lead to short-term increases in your pain, in the long term it’s beneficial.
Do things you enjoy: Anything that can improve your mood and reduce stress is a good idea for your chronic pain.
Avoid pills and surgery if possible: When it comes to chronic pain, the benefits can be limited and they often come with significant side effects.
Understanding your pain can be key: The more you understand it, the more likely you are to make more informed and better healthcare choices.
Recovery is possible: That doesn’t mean that everyone can or will be pain-free, but everyone can improve.