Tortured by pain doctors simply can’t explain? This may be why...
AS A GP, Dr Nick Mann is used to seeing people in pain — and as someone who’s suffered from it for years himself, he is particularly sympathetic. In his 20s he damaged a disc in his neck during a surfing accident, causing it to bulge or ‘slip’. Over the next 12 years, more of the discs in his neck became damaged, leaving him with chronic stinging pain in his back, arms and shoulders.
But this was nothing compared with what came next. One day Dr Mann woke up having slept in an awkward position.
From then on the slightest movement of his right arm, or even being touched on his upper back, caused waves of excruciating pain.
‘The pain intensified over several months to the point where, having been able to carry on “as normal” for 12 years despite a series of slipped discs, I became unable to lift a stethoscope to listen to someone’s chest,’ explains Dr Mann, 51, who works at an NHS surgery in East London.
‘If anyone even gently brushed against my back I would get a jolt of incredible pain and my knees would buckle.’
As well as the pain, his right hand became a mottled red colour. And, most remarkably, the nails and hair on his arm grew faster, as did the bones in his right hand — over months it grew bigger than his left hand.
His doctor gave him prescriptions for painkillers, but this did nothing.
‘There appeared to be no answers as to why this had happened,’ says Dr Mann, who lives in Hackney, East London, with wife, Karen, 48, and their children aged 14 and 11.
His doctor referred hi m to a neurosurgeon. ‘ He treated me like a malingerer,’ recalls Dr Mann. ‘It was the most terrifying time of my life.
‘I couldn’t work and I feared I might never do so again at that point. My right arm, as well as being painful, began to lose its power. Despite trying to keep it moving, it gradually lost strength and co- ordination, until four months later it just hung uselessly by my side.
‘I could do everyday things like write and eat with a knife and fork but it was extremely hard. My wife was pregnant with our second son and she did not need another dependent at this point.’
SIX months after Dr Mann’s s y mptoms began, an osteopath suggested the problem might be shoulder-hand syndrome — a form of complex regional pain syndrome (CRPS).
Suddenly Dr Mann realised he had a diagnosis. CRPS is a greater-than-normal reaction of the body to an injury, resulting in a ‘scalding’ pain at the slightest touch.
‘The pain is so bad that it is not uncommon for people to say they want to have their affected limb amputated,’ says Dr Andreas Goebel, a senior lecturer in pain medicine at Liverpool University.
The syndrome usually affects just one limb, commonly the arm or leg.
As well as pain, the skin of the affected limb can change colour and may be warmer or cooler than normal. Hair and nail growth can dramatically increase or decrease (possibly as the nervous system helps regulate this growth).
In time — generally months — the limbs can become weaker and f rozen i n position, not only because it hurts to move them, but because it becomes physically impossible to do so.
Although the condition was first identified during the American Civil War, CRPS’s cause is as yet not fully understood. However, it’s thought to stem from a problem with the nerves, as it can occur after a major injury to a nerve.
This is referred to as CRPS type 2. It can also occur after surgery or a mild knock. Around 10 per cent of those who have a fractured limb will develop it, when it is known as CRPS type 1.
‘Just the trauma of a vaccination is enough to trigger it in some,’ says Candy McCabe, a consultant nurse at the Royal National Hospital for Rheumatic Diseases in Bath and professor of nursing and pain sciences at the University of the West of England, Bristol.
‘However, in 9 per cent of cases the condition occurs without any obvious injury,’ she says.
It may also be an autoimmune condition, suggests Dr Goebel.
‘We are looking at the possibility that with CRPS the i mmune system alters the way the nerves function — all the symptoms are nerve-related.
‘Nerves can secrete neuropeptides, protein- l i ke molecules that nerve cells use to communicate with each other, and in excess these can lead to swelling and discolouration of the skin — as happens with CRPS.’ Professor McCabe adds there is no ‘absolute evidence’ of this yet.
‘What we do know is that even if it has an autoimmune component, things quite quickly get driven by the brain,’ she says.
Quite why limbs should become useless is not clear. ‘What we think happens is that people feel as if they can’t use the affected limbs and this in time alters the way the brain talks to these areas,’ says Professor McCabe. ‘This is most common among young females — their joints can become fixed in an unusual position.’
The syndrome is three times more common in women and is most common among post-menopausal women, ‘ which suggests some hormonal element’, says Professor McCabe.
Physiotherapy can help keep the joint mobile, ‘but it needs to be started as soon as possible to have best effects and that depends on an early diagnosis’, she adds.
Yet although it is not an uncommon condition — affecting around 16,000 people in Britain — few doctors have heard of CRPS. ‘It’s not taught in medical schools, and many doctors will never even have heard it,’ says Professor McCabe.
‘There is no definitive test — diagnosis depends on the patients explaining their symptoms and the doctor understanding what they mean.’
Patients commonly experience a delay in diagnosis and some may be told their symptoms are in the mind, says Professor McCabe.
‘Yet it is a very real condition that can be absolutely horrific. I have seen tough miners in tears with the pain of this condition.’
In 80 per cent of cases, the condition resolves itself within a year, but for the rest, the condition can become progressively worse.
Morphine and other strong painkillers have little effect, but nerve blocks — injections of local anaesthetic i nto the affected nerves — can help, as can spinal cord stimulation. This involves having a device fitted into your abdomen or buttocks that sends electrical pulses to your spinal cord, which alters how you sense pain.
Thi s helps in around half of all patients, says Dr Goebel. He has recently completed a study using a drip of immunoglobulin (a form of antibodies used by the immune system). In his study, published in the journal Rheumatology last year, a weekly infusion stopped the pain symptoms for two sufferers within months — even though they had been suffering from the condition for five years.
‘We expect it to be effective in a quarter of those with CRPS and if it is going to be effective it will start working straight away,’ he says.
For Dr Mann, the road to recovery after his symptoms began in 2002 was agonisingly slow. ‘I eventually saw an osteopath who was also a doctor. He thought the problem originated in my upper ribs,’ he says. ‘After the first treatment manipulating my upper ribs, the nature of the pain changed totally.’
He believes that for many people with CRPS the upper ribs may be t he problem. ‘ Many CRPS sufferers report an initial shoulder impact,’ he says. ‘This can send a force from the shoulder through to the ribs so that they are a bit like bent sticks.
‘When they’re compressed they can rotate slightly. Very small displacements at the spinal end of the rib can cause small but i mportant distortion of the sympathetic trunk.’
THE sympathetic trunk is a bundle of nerve f i bres carrying signals which control, f or example, muscle reflexes, blood flow and pain transmission. If the ribs are disturbed enough, they can put pressure on these nerves and create havoc, adds Dr Mann.
‘As my ribs were freed with osteopathy my pain reduced and my hand returned to colour pretty rapidly,’ says Dr Mann, who is now living a full and active life.
He believes his experiences made him a better doctor.
‘What happened to me gave me so much insight into how people with long-term pain suffer,’ he says. ‘They go to their GP and shuffle out with a prescription for painkillers or an appointment to see the physiotherapist, but these people keep coming back because no one finds out why they have this pain.
‘ Our system deals with the consequences, but has stopped looking for the causes.’