New NICE guidelines recommend exercise, rather than medication, for those suffering with chronic pain. Writer Grace Holliday explains why movement alone isn’t enough to help those dealing with symptoms.
Having crawled up the restaurant stairs on my hands and knees, I was now lying flat on my back in the far corner, moaning quietly. Although we were in New York’s Times Square, the room was mercifully empty. My friend Katie watched sympathetically. “Just give me a minute, “ I said.
It reads like a drunken anecdote, doesn’t it? Instead, it was chronic pain that had me lying prone on a grubby floor, not ordering mozzarella sticks and chattering with my best friend on the last night of my trip to visit her. She’d been at class all day, so I’d had eight hours to go sightseeing. I’d walked miles, and finally my back had given out, as it had done a dozen times before. I couldn’t take another step.
This week, the UK’s medicines watchdog NICE issued new guidelines stating that people suffering from chronic pain with no known cause should not be offered analgesics – more commonly known as painkillers. Instead they should be advised to exercise, start therapy, or even begin a course of antidepressants.
The new guidelines should exclude chronic secondary pain conditions such as endometriosis, arthritis or post-surgical pain. Instead, it is intended for those with undiagnosed chronic primary pain; pain persisting for three months with no identified cause.
My chronic back pain began at 23; I’d just done a 4-mile countryside walk, and as we neared the end I had to lean over a wall and have my mum rub my lower back. I didn’t know at the time, but it was a scenario that would repeat itself for the rest of my life.
It took me seven years for a specialist to identify the cause of my pain.
Dr John Hughes is the Dean of the Faculty of Pain Medicine at the Royal College of Anaesthetists. Listening to my story, he tells me that it’s one he’s heard many times before.
“We did an audit that found it takes on average six years for an individual to get from first contact to a pain management clinic, so your story isn’t uncommon. Chronic pain is a diagnosis of exclusion- you have to exclude known, treatable conditions, as physiotherapists and others did with you, before you can give a definitive diagnosis.”
This is what happened to me. Over the years I was referred from department to department, specialist to specialist. A year of NHS physiotherapy didn’t help, so I spent money I didn’t have on sessions with a private chiropractor, and then an acupuncturist.
The impact was, once again, minimal. I went on to see podiatry and orthotics departments through the NHS, and for another round of physiotherapy. They confirmed mild scoliosis, possibly caused by leg length discrepancy – one of my legs is slightly shorter than the other, meaning that one of my hips is higher, and one half of my back significantly stronger and more developed than the other. Eventually, at 29, my GP told me I had ‘undiagnosed back pain’, and referred me to pain management. It felt like the equivalent of saying, “We have no idea what’s wrong. Go learn how to live with it.”
It took just one utterly demoralising pain management appointment to put a last bit of fight in me. I had to know what the issue was. Every single day was built around how far I could walk at one time, where and when I could stop and sit for breaks and how I could make myself more comfortable; I would scan restaurants for cushioned seats and went through hot water bottles and heat packs like nobody’s business.
Trips and holidays with friends or family were tailored around my back; while they reassured me kindly that they didn’t mind, I felt like a burden. I finally got myself referred to a specialist at my local hospital who diagnosed me with degenerative disc disease. It was the very first time I’d even heard the term mentioned.
Had these NICE guidelines come in earlier, I would have been at their mercy. While Ibuprofen was my painkiller of choice, the stronger Naproxen was prescribed a few times if things got especially bad. With degenerative disc disease, over the course of the day your discs get worn down, causing and then exacerbating the pain if you continue to walk or move. It was clear that the specialists I’d seen previously didn’t believe me when I told them that walking or running made my pain worse. “Exercise”, “don’t wear heels” (I rarely did) and “sit up straight at your desk”, however, was said on a loop.
My diagnosis finally gave me validation, and an explanation; I cried with relief and told anyone who would listen. “I wasn’t being lazy!” I wanted to yell. It also made sense why the anti-inflammatory Ibuprofen helped me so much, and had been essential hundreds of times in allowing me to live my life.
Speaking on the new guidelines, Dr Hughes adds, “It’s positive that NICE have taken on the challenge of chronic pain, acknowledged the size of the problem and are attempting to bring it in the public awareness. Some medicines are being overused, yes. However, there will also be patients who get genuine benefit and we really shouldn’t be disadvantaging them.
“Those who painkillers are working for should be allowed to stay on it. It’s also concerning that those with new presentations of pain won’t now be offered or advised to take medicine that could help them. NICE say people can be harmed, but if you monitor the prescription properly and have regular feedback from the patient on how it’s improving their quality of life, you’re going to reduce the risk of harm.”
His concerns are echoed by Dr Alan Fayaz, a consultant in chronic pain management at University College London. He tells me that “there are absolutely circumstances where chronic pain patients benefit from a variety of treatments, including anti-inflammatory medications as well as more specialised painkillers, pain management programs and physical treatments like injections and nerve blocks. It remains of utmost importance to identifying the instances where it may be appropriate to use specialised treatments.”
The avoidance of painkillers is not the only element of the new guidelines I find worrying. The advice that doctors should suggest exercise is so generic that it could in fact cause real harm. As Dr Hughes says ,“Exercise absolutely needs to be nuanced to the individual; paced and graded by somebody who understands chronic pain and what your body needs to strengthen, and not become injured.”
This is something that I would have found impossible to achieve without my brilliant, knowledgeable personal trainer, Pete. But it wasn’t until the end of my 20s that I found myself able to afford the £140 a month for weekly sessions. The NICE guidance completely fails to acknowledge how prohibitively expensive – and yet how essential – hiring a personal trainer is to people with chronic pain like mine. While the NHS do offer some exercise and training programmes, waiting lists are long and there is a postcode gamble as to who will be eligible for what, and what will and won’t be offered in various areas.
The guidelines have also come as a blow to those with disabilities. Disability advocate Kate McWilliams, who lives with complex regional pain syndrome said on Twitter: “People think we don’t want to exercise and feel better? Believe me we’ve tried it. I got to the point of being able to do light exercise 20 mins a few times a week *only* after years of meds and rehab, and I’m a lucky one.”
Poppy Field added: “Pain medication is the reason I can be self employed and socialise. NICE just gave the all clear to make me more bedbound and unemployed. Terrifying.”
Exercising – in the right way, and in the luxury format that I now can – has helped me. Slowly, over three years, my back and core have strengthened, allowing me to walk further and do more. But so have painkillers. That evening in Time Square, 15 minutes on my back and two Ibuprofen were the only thing that got me back on my feet. Painkillers and regular exercise with a personal trainer will be essential parts of my life forever; degenerative disc disease doesn’t have a cure, and only gets worse over time. However, that’s not something I dwell on now; I’m just incredibly grateful to give it a name. After all those years, that’s enough for me for now.
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