My patient Graham was 16 when he started an apprenticeship as a bricklayer, and for almost as long, he suffered back pain.
At first nobody thought anything of it. He spent his days lifting heavy loads and hunched over walls, so of course his back ached. When he finally saw a GP, he was told to keep moving. He did. Things got worse.
By the time he came to see me, aged 32, he was exhausted. And as he described his pain, I knew this wasn’t simply the wear and tear of a manual job.
Ordinary back pain – also known as mechanical back pain – flares after a particular movement or a long day, worsens the more you do and eases with rest.
But Graham’s was the opposite. It had crept on gradually, with no injury to blame. It was a deep ache in his lower back that was worst at night, waking him so he had to get up and walk about before he could sleep again.
In the mornings he was so stiff he said: ‘I move like my granddad.’ But an hour later, showered and fed, his back had loosened up.
Rest made it worse. Exercise made it better. He had been training harder and harder just to cope.
I instantly recognised this as the hallmarks of an inflammatory back pain condition called axial spondyloarthritis, and, after a few tests, this was confirmed.
The average wait for an axial spondyloarthritis diagnosis in the UK is eight and a half years
Axial spondyloarthritis is a form of arthritis that targets the spine. In Graham’s case, he had almost certainly had it for years.
And he is far from alone. I’ve seen an alarming number of men under 40 with exactly this story: Years of pain, years of being fobbed off by doctors who recommend he stretch, lose weight or buy a better chair.
The condition affects around 220,000 Britons, yet just 60,000 have a diagnosis, Arthritis UK found. Around 2,000 adults are diagnosed each year. It typically starts in the late teens or twenties, almost always before 45, and is more common in men.
Yet the average wait for a diagnosis in the UK is eight and a half years, according to the National Axial Spondyloarthritis Society.
Why is it missed so often? Partly because back pain is so common, and most of it is mechanical. When a fit young man turns up with a sore back, the obvious assumption is a gym injury, a sports strain or a heavy job.
Scans don’t always help. In the early years, X-rays can look completely normal because bone damage takes a long time to show.
MRI scans of the lower back often don’t include the sacroiliac joints, either side of the base of the spine, where the inflammation usually begins. Blood tests for inflammation can come back normal too.
Moreover, the condition can only be diagnosed by a rheumatologist – a specialist in inflammatory conditions.
Dr Kaye’s patient spent his days as a bricklayer lifting heavy loads and hunched over walls
GP, author and broadcaster Dr Philippa Kaye
So if a GP does not suspect that the pain is inflammatory, then they may not think to send the patient on to a rheumatologist and they won’t get a diagnosis.
This delay can ultimately worsen the health of patients like Graham.
Over the years, as the immune system wrongly attacks the spine, this can cause vertebrae to fuse – a debilitating complication called ankylosing spondylitis.
In the most advanced cases the spine becomes a rigid column known as bamboo spine, making simple movements like bending down all but impossible.
Axial spondyloarthritis doesn’t just affect the back and hips either. The inflammation can also strike the heels, knees, hips and ribs, and even the eye.
Many patients also experience severe fatigue.
The toll of axial spondyloarthritis on the lives of young men can be huge. Many patients are in so much pain that they are unable to work. This could have easily been Graham had he not been diagnosed.
That’s because, while there is no cure for the condition, there are a number of effective treatments.
Daily stretching, swimming, Pilates and strength work all help, and physiotherapists can design programmes for spinal mobility and posture, Dr Kaye writes
The first step is anti-inflammatory painkillers such as ibuprofen or naproxen, taken regularly at full dose, which help many patients enormously.
For those who don’t improve, biologic drugs can be life-changing. These are injections designed to combat inflammation in the body.
The usual first choice on the NHS is called adalimumab, which is self-injected every two weeks. The drug is not without its risks. Adalimumab dampens the immune system, meaning patients are more at-risk of infectious diseases.
For some, the injections have no effect – meaning they will have to try other biologics. However, many patients feel their pain and stiffness lift within weeks.
But no drug replaces movement. Regular exercise is the most powerful tool patients have for staying supple.
Daily stretching, swimming, Pilates and strength work all help, and physiotherapists can design programmes for spinal mobility and posture. If you smoke, stop: smokers tend to have more severe disease.
In many cases, back pain is down to something ordinary like carrying heavy boxes or sleeping in an uncomfortable position.
But if yours began before 45, came on gradually, is worst at night and first thing, and eases with exercise rather than rest, see your GP and ask whether a referral to a rheumatologist might be necessary.
