The ‘growing pains’ that could cripple you for life

The ‘growing pains’ that could cripple you for life
UPDATED: 00:14 GMT, 30 November 2010

Paul Curry’s teenage years were blighted by what doctors insisted were growing pains. Not just the odd sharp stab or ache that many youngsters suffer, but attacks that were so severe he was often bedridden for days.
‘The pain was dull, gnawing deep inside both hips,’ says Paul, 28, from Durham. ‘It was excruciating.

‘The first time it happened I was 13 and mad about sport, particularly rugby. I assumed — as did my parents — it was growing pains or a sporting injury and so would go away.’

At risk: Young males are most likely to suffer from Ankylosing Spondylitis(AS), a progressive rheumatic disease that causes inflammation around joints

Unfortunately, over the next few years not only did the pain worsen, but the attacks became more frequent and lasted longer.

‘Sometimes I could cope by taking painkillers, but other times I’d be in bed for days, screaming with pain,’ says Paul.

Over the next few years, his parents took him to see his GP several times. He diagnosed growing pains and said it was ‘something Paul would grow out of’.

A consultant orthopaedic ­surgeon, to whom Paul was referred privately at the age of 16, then pronounced he was suffering from Sherman’s disease, a mild condition that causes a slight curvature of the upper spine.

‘He said that by the time I was 21 I’d have grown out of it. In the meantime, I was to keep taking painkillers,’ he says.

Sadly, Paul, from Durham, didn’t have Sherman’s disease, but Ankylosing Spondylitis (AS), a progressive rheumatic disease that causes inflammation around bone joints and ligaments.

Left untreated, this causes bone erosion, which stimulates the immune system into a healing process. This, in turn, produces an overgrowth of bone, which leads to the fusion of bones such as the spine and hips and eventually immobility. The damage is irreversible.

Some 400,000 Britons are affected by AS, with symptoms usually appearing between the ages of 25 and 34 — though ­teenagers and older people can be affected.

Unfortunately, like Paul, many sufferers are mis-diagnosed — with devastating consequences.

Today, at 28, Paul is racked with constant pain. The discs in the lower half of his spine have fused, as have his hip and pelvic joints.

Three vertebrae at the top of his neck are also affected and this once super-fit teenager counts himself lucky if he walks without using a stick.
At night, his joints stiffen and spasm and he is dependent on a daily dose of morphine.

Late diagnosis: Paul Curry’s crippling condition was not spotted until his 20s

Not surprisingly, in the past, the condition has left Paul feeling depressed.

‘I still get distressed about what might have been had I been properly diagnosed early on,’ says Paul who, after getting a degree in business management, had to move back in with his parents because he is often confined to bed for days at a time.

Despite spending thousands of pounds on specialists over the years, Paul wasn’t diagnosed until he was 26, when an astute physiotherapist recognised his symptoms and advised him to see a rheumatologist.

‘She examined me and said she was almost certain I had AS,’ says Paul.

‘Blood tests and an MRI scan confirmed this. It was a scary diagnosis, but an utter relief that at last I knew what I was dealing with.’

Shockingly, the average delay in diagnosing the condition is ten years, according to a survey for the National Ankylosing Spondylitis Society (NASS).

‘There is a lack of awareness of the condition and how to distinguish the symptoms from other causes such as back pain,’ says Dr Andrew Keat, consultant rheumatologist at Northwick Park Hospital, Harrow, Middlesex, and a specialist in AS.

‘Unfortunately, the very people who suffer most from the ­condition — young males — are also the ones who tend to be the most active,’ he says.

‘Therefore, it’s easy to write off their symptoms as being a sporting injury or even just growing pains.’

The main distinguishing ­symptom is inflammatory joint pain, which comes on slowly and usually occurs in the lower back or hips. Crucially, it improves with exercise and worsens with inactivity, meaning it’s often severe at night.

‘These symptoms should be a red light to your GP that ­inflammation is occurring,’ says Dr Keat. ‘If anti-inflammatories don’t help after a few weeks, the symptoms need further investigation by a rheumatologist.’
There is no one simple test, says Dr Keat.

‘We look at family history, symptoms, make a physical examination and take blood tests for signs of inflammation. X-rays rarely show the condition so an MRI scan is essential,’ he says.

Ironically, once the condition is diagnosed, treatment is ­usually effective — with anti-inflammatories such as ibuprofen and exercise, as movement discourages the fusion process.

Exercise can make a significant difference, as Liz Ledger proves. Now 28, she had severe hip pains from the age of 17; these were also blamed on growing pains.

‘I lost count of how many health professionals I saw,’ says Liz, a sales and marketing ­manager from Bristol.

However, she worked out that the pain receded when she ­exercised and over the years she has devised a routine that kept it manageable.

But by her mid-20s the pain was increasingly severe. Finally, in October 2007, she suffered a flare-up that left her bed-bound.

‘I dragged myself to the GP and insisted that I wasn’t ­leaving without a referral to a rheumatologist.’

An MRI scan and blood test confirmed AS; her first four ­vertebrae had fused and there were signs of fusion in the hips and pelvic joints.

Her condition is being managed by anti-inflammatories and pain-killers. She does cycle classes, body conditioning and gentle running six days a week.
‘It’s a commitment, but it means the difference between mobility and immobility,’ she says.

‘AS can be a devastating ­condition, but one positive thing is that the sufferer can actually help themselves,’ says Jane Skerrett of the NASS.

‘The earlier a patient gets on to a suitable exercise regimen the better.’
The charity has launched an exercise guide, developed by a rheumatologist and physiotherapists, that contains a full ­fitness programme as well as advice.

Despite his pain, Paul makes sure he always does gentle stretching and walking. And ­having recently married, he remains optimistic and is keen to start a family.

Liz, who was diagnosed earlier in the disease cycle, is also upbeat. ‘I recently completed a half-marathon,’ she says.

‘Now I’m back at work and have a social life. Exercise has given me control of this disease.’

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