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The broadcaster Kirsty Young spoke frankly this week about her experience of fibromyalgia — the long-term condition that causes pain all over the body — which left her feeling “hollowed out … sometimes sobbing with pain”. She stepped down from her dream job at the helm of Desert Island Discs in 2019.
“I coped badly. I coped in the way that many people do with chronic long-term pain, which is you start thinking, ‘This will go away, I’ll take a couple of paracetamol. Actually, I think I need Nurofen Plus. Actually, I think I probably need to take three or four doses of those a day. Oh they seem not to be working, is it all in my head?’”
Her comments come as more than 5,000 pain professionals from around the world met in Amsterdam to discuss what has been dubbed a global epidemic. Chronic pain is cited as one of the main reasons behind the record 2.8 million people out of work due to long-term sickness in the UK. According to the British Pain Society, it affects 43 per cent of adults to some degree.
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“It would be to the advantage of the overstretched health service to take [them] seriously and not just palm them off with either a great big pack of painkillers or some heavy antidepressants,” says Young, 55, recalling being made to feel like “a crazy lady” by a female medic when trying to get a diagnosis.
“Chronic pain is the world’s most disabling health condition,” agrees Lorimer Moseley, an Australian neuroscientist and leading global pain expert. Chronic pain — from fibromyalgia to back and neck pain and headaches — is any pain that lasts beyond 12 weeks, or beyond the expected period of recovery after an injury.
Moseley himself experienced almost a decade of persistent back and shoulder pain after a series of football injuries and has since spent 25 years researching the subject. Most methods of treatment simply “don’t work”, he says, as medics are only just beginning to fully understand the role of the mind.
This is not to say that it’s all in sufferers’ heads. “Absolutely not,” says Moseley, who founded Pain Revolution, an organisation dedicated to spreading cutting-edge pain science. “Chronic pain is no different to any other kind of pain in so far as it’s in your consciousness, you feel it, it’s completely 100 per cent real — but the very best treatment is first understanding how pain works.”
Pain is not just a sensory signal, indicating physical damage, but a protective one. “Pain is not about telling you exactly what’s happening; it’s about telling you what the risk of this situation is likely to be, and if it’s [perceived] to be more risky, then the brain will make more pain,” Moseley says.
Multiple lab studies have shown this perception of risk can be exaggerated and distorted, causing the pain system to remain activated and highly sensitised. Moseley cites one experiment in which a piece of metal was pressed onto the back of participants’ hands, with red and blue lights periodically flashing. When the light turned red — a colour associated with danger and heat — pain ratings were up to twice as high as when the blue light showed.
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This chimes with Young’s experience. “Fibromyalgia, in its simplest explanation, is what’s called a neuropathic pain disorder — so the pain centre in the brain, which everybody has, gets thrown off,” she says. “Things that you normally would not feel or notice become entirely magnified by the fact that your pain centre is overinterpreting things that would happen normally in your body.”
Chronic pain management will differ from person to person, but Moseley maintains that challenging your beliefs about your condition, being willing to pursue treatment other than medication and surgery, and expanding your existing movement thresholds can help most people to lead a pain-free life. “The exciting thing is that once you understand [pain] better, you can slowly start to negotiate your way towards recovery.” Here’s what he believes can help.
“Most people with chronic back pain believe they have a very fragile, vulnerable and about-to-be-broken back, and for most people with chronic back pain that’s not the case at all,” Moseley explains. “You’ve got to train your brain to accept that your back is stronger than it feels it is.”
He suggests consulting online resources such as Flippin’ Pain (flippinpain.co.uk), which aims to make sense of the science and make it plain that hurt does not always equal harm and recovery is possible. After reading up, he advises taking the information to your GP or physio, and telling them: “‘I want you to teach me how to recover.’ That’s a totally different question from, ‘I want you to give me something that will relieve my pain.’”
Provided that there’s no physiological reason for discomfort, any kind of movement is a start, though Moseley advises seeking the help of a pain coach to assess your physical capabilities before slowly reintroducing exercise after a period of chronic pain. The NHS website advises that chronic pain sufferers “try to be active every day instead of only on the good days when you’re not in so much pain. This may reduce the number of bad days you have and help you feel more in control.”
For those hoping to resume long walks, Moseley says, “the challenge is to get the amount of walking right that causes an adaptation to reduce pain system hypersensitivity and to get the legs stronger, but not being so big as it causes a flare-up”.
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Start small and build up over time — but keep it consistent. “I started walking, but I also started being more active in general and engaging wholeheartedly in other things that I valued,” he says. “I think that’s a really key message. People with persistent pain stop doing things that they actually find very valuable because it hurts — but doing those in a graded way [generates] a whole lot of analgesic molecules that you make yourself, like endorphins.”
Sleeping for seven or eight hours a night is crucial, Moseley says, as is diet. “The way that you eat matters. And it’s totally logical and it’s the same old message: reduce your simple sugars and your super calorie-rich foods and eat more green leafy vegetables.” A paper published last year in the Brazilian Journal of Physical Therapy highlighted that lifestyle interventions of this kind “should lead to improved outcomes and decrease the psychological and socioeconomic burden of chronic pain”.
Mortgage fears, job pressure, increasingly frail parents — “the immune system detects those events. It’s highly attuned to anything that’s foreign or threatening,” he says, whether outside or within the body. Those pressures can trigger a vicious cycle: stress weakens the immune system, making you more susceptible to illness, and those illnesses can send a hypersensitive pain system into overdrive. Pain can also cause individuals to be more stressed about their condition, exacerbating discomfort further.
Moseley has experienced the body’s pain reaction to internal threats on several occasions, with his back and shoulder injuries flaring when he gets the flu. Though he says most people with chronic pain can retrain themselves into leading a pain-free life, the hypersensitivity drilled into the body may still occasionally reappear.
Chronic pain sufferers are “10-20 per cent more likely to become severely depressed, and if you are depressed you’re about the same percentage more likely to develop chronic pain”, Moseley says. Given this “overlap” between pain, anxiety and depression, he advises seeking treatment for mental health conditions at the same time as that for chronic pain.
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Though there are around double the number of UK adults with persistent discomfort compared with depression (which affects one in six), “the forgotten people within the health system tend to be those people with chronic pain … even though it is by any metric a more disabling and more common problem”.
Moseley believes that “the way to treat these things is through promoting people taking charge of their recovery” — and ultimately seeking help that focuses on changing how the brain sees pain, rather than numbing discomfort.
“There are no quick fixes,” he says. “The solution to chronic pain is way harder than we would like it to be because it’s a long journey and it’s painful every day. It’s brutal. But it’s way more logical than we might expect.”