Chronic widespread pain
Published on 01 October 2008
As Arthritis Research UK’s exciting new trial into reducing the symptoms of chronic widespread pain gets under way, Jane Tadman looks at this complex, increasingly common condition.
It’s the second most common cause of referrals to rheumatologists, and affects between ten and 12 per cent of the UK population. Yet chronic widespread pain (CWP) can take years to diagnose and cannot be effectively treated by drugs.
Its causes are unknown and in many ways the condition remains a mystery to scientists, a challenge for the medical profession, but most of all, hell for patients, who are often dismissed as malingerers and shirkers, may be forced to give up work and become increasingly isolated, misunderstood, and frustrated. They descend into a spiral of low self-esteem, lack of confidence and poor sleep, and lose interest in all the things that made their lives worth living.
Even its name is far from straightforward. To have a diagnosis of CWP you must have had pain for at least three months in three areas of the body, not just on one side, and not all above the waist or below the waist – all over the body.
Chronic widespread pain or fibromyalgia?
Then there is fibromyalgia, a word often interchangeable with CWP but which is actually a sub-group of CWP. Patients with fibromyalgia will also have tender points around the body and sleep disturbance. Nor is there much difference between CWP, fibromyalgia and chronic fatigue syndrome (also known as ME), as people with CWP are likely to have fatigue too.
However, Dr John McBeth, senior lecturer in rheumatic disease epidemiology at the arc epidemiology unit in Manchester, a leading centre into the study of CWP, believes that such definitions and labels are becoming less important.
He accepts that CWP is a complex condition which doesn’t fit neatly into any medical specialty and has a myriad of possible causes and triggers, both physical and psychological.
He believes the condition has always existed although known variously as psychogenic rheumatism, tension rheumatism and fibrositis. However, studies have shown that its prevalence has increased markedly since the 1950s, especially in women.
While there are no clear reasons for this, Dr McBeth offers some possible speculation: “GPs are becoming more familiar with it, and patients are becoming more aware of it, but that doesn’t explain the increase on this scale. We think one of the main reasons is that we are more exposed to stress in the modern era. Lifestyles are more hectic, we are never out of contact, never have the chance to relax and chill out. Then there are changes in the structure of the workplace, people are less secure, less satisfied. It is clear that physical and psychological stressors are very important.”
It is also thought that a traumatic event such as a car accident or being abused as a child may lead to someone developing CWP in later life. But why don’t all people who have suffered this sort of trauma go on to get CWP?
A newish theory about this has emerged, according to John McBeth, which has more to do with genetic predisposition than having a particular personality. Just as some of us are genetically predisposed to developing rheumatoid arthritis or osteoarthritis, the same may apply to CWP.
There are no single risk factors
“Some people may be genetically predisposed to having a different response to stress than others, or their endogenous pain control mechanisms don’t work as well as someone else’s,” he says.
Physical factors also play a part. “It’s becoming clear that physical de-conditioning is also important, and this may be either a consequence or a cause of having pain. Diet may also play a part; for example there is a higher incidence of CWP in non-Caucasians who are more prone to be Vitamin D-deficient. There are no single risk factors but there are external and internal factors at play.”
John McBeth is one of three of the EU’s leading researchers to have decided to do something practical to help people with CWP. He and colleagues Professor Gary Macfarlane (now heading the University of Aberdeen’s department of public health) and Professor Deborah Symmons have gathered together a team of experts to carry out a two-centre clinical trial in Manchester and Aberdeen. The study, one of the biggest ever carried out, and funded by a three-year £600,000 grant from arc, will compare the effectiveness of two types of treatment; one physical, one psychological.
More than 500 people aged between 25 and 60 suffering from CWP, from general practices in Macclesfield and Aberdeen, will be randomised into one of three groups: free exercise on prescription at their local gyms, cognitive behavioural therapy (CBT) over the phone by trained therapists, or both. CBT is a talking therapy which aims to help people manage their pain by identifying and evaluating thoughts and behaviour. A fourth group will receive the usual care from their GP which may involve a referral to a rheumatologist and possibly being given a low-dose antidepressant commonly prescribed to patients, amitriptyline.
“It’s very much a pragmatic trial; we wanted to see if we could do something at the level of general practice where these patients present,” says John McBeth.
Aiming for general cardiovascular fitness
Patients taking part in the exercise arm of the trial will be expected to attend the gym at least twice a week for up to nine months and will be assigned their own personal trainer to develop an exercise plan aimed at improving aerobic fitness by using a treadmill, exercise bike, rowing machine or cross-trainer. They will also be encouraged to try strength and flexibility training as well.
Wes Bramley, a fitness instructor who will lead the gym arm of the trial in Aberdeen, explains: “What we’re aiming for is general cardiovascular fitness. We will advise people on a personal exercise programme aiming to gradually increase their activity levels and fitness. They will not be in very good condition and we need to consider that, and they may also have other issues around their arthritis or their condition, such as fear of movement, and that exercise is going to increase their pain. We will try and break that cycle of pain, by being motivational, supportive and reassuring.
“The mean age will be people in their 60s and 70s who might not have done exercise before, or not for a long time, so we will have to get them moving again.
“They will build up slowly, and improve their exercise and activity tolerance. I’ll start them with a level they are comfortable with, and increase the duration and intensity, so small steps to avoid exacerbating their pain.”
Richie Paxton, the Manchester fitness instructor, adds: “Patients will be made to feel relaxed, and we’ll try and emphasise they will experience some pain while exercising but that’s normal. Most of the time exercise helps people’s pain, but it helps them cope with the pain better. It will also bring additional benefits – improve their sleep patterns and relieve stress.
Motivation is key
“If they stick with it for four to five weeks then they will probably stick the programme out. Motivation is very important. We will address that with goal setting when we have one-to-one meetings.”
Motivation is certainly key as it could be difficult to motivate people whose condition makes them tired, in pain, and often unable to concentrate or focus. And if they are having cognitive behavioural therapy too, that would constitute quite a demanding workload, which could lead to a high drop-out rate. For that reason, the leads of the exercise and CBT arms will be working closely together to make sure that patients on the combined treatment arm are not overwhelmed.
Patients receiving CBT will have an initial hour-long assessment over the phone by a trained therapist, followed by seven weekly half-hourly sessions and two further sessions at three months and six months. The therapy is being delivered over the phone as there is a shortage of trained therapists to undertake face-to-face work.
Phil Keeley, lecturer in nursing at Manchester University, who has trained the four therapists involved in the trial, believes the therapy will not lose any impact because patients don’t get to meet their therapists. He points to previous, similar research which has shown that phone CBT has similar success rates as that delivered in face to face consultations.
Managing pain, not curing it
Although CBT is a complex process, in effect it will focus on how pain has an impact on a person’s everyday life and activities, and how it affects their thinking and behaviour. “It concentrates on what the patient would like to do with their life, and how the pain is stopping them from doing that, helping people to move on,” explains Dr Keeley.
Patients will all receive a specially written book, Managing chronic widespread pain, explaining the various techniques within CBT, such as cognitive re-structuring (a way of changing negative thoughts by looking at them afresh and challenging them), and behavioural activation, which focus on re-establishing daily routines in a paced way.
“Their chronic pain will not go away,” stresses Phil Keeley. “We’re about managing, not curing it, through planned activity and rest. As people progress they negotiate with their therapist how they can step up to where they want to be.”
A very practical outcome of the trial is that, if, for example, the CBT delivered to patients over the phone is shown to work in some patients, it could have big implications in the way that patients are treated - and dramatically cut the time they have to wait for therapy.
“Waiting lists to see CBT therapists are currently between 18 and 24 weeks on the NHS, and if people are waiting that long their pain may get a lot worse,” says John McBeth. “If we can demonstrate that the therapy works just as well over the phone it could reduce waiting times considerably which would be a real plus – and be a lot cheaper.”