Hazel Borland was a shadow of her former self after developing pain that plagued her for decades.
It started with back pain after the birth of her daughter Nikola, 30 years ago. After 12 years of unremitting agony Hazel was finally diagnosed, at the age of 36, with fibromyalgia — a chronic pain condition that affects 2.5 million people in the UK.
Other symptoms include fatigue, sleep problems, brain fog (known as fibro-fog), depression and anxiety. There is no cure and, as many of those affected by it find painkillers make little difference.
‘I have a widespread aching pain that’s always there in the background, but then I also get ‘nerves on fire’ pain, where my nerve endings — in one area or more widespread — are ultra-sensitive,’ says Hazel.
‘My worst areas for pain are my lower back and legs.’
Previously outgoing with an active social life, Hazel stopped exercising and had to give up her job as an administrator, rarely leaving home in Elderslie, Scotland.
But her life has now been transformed — not by a new miracle pill but, at least in part, by cognitive behavioural therapy (CBT), a form of talking therapy that coaches people to think differently about pain and how to deal with it.
After 12 years of unremitting agony Hazel Borland (pictured) was finally diagnosed, at the age of 36, with fibromyalgia — a chronic pain condition that affects 2.5 million people in the UK.
‘I’d tried everything — painkillers, physiotherapy, antidepressants — but nothing really made that much difference,’ says Hazel, 54, who is married to Allan, 55.
Their daughter Nikola also has fibromyalgia (there is thought to be a genetic link).
‘I stopped going places, seeing friends and family and I gave up work because I was in pain, exhausted and totally preoccupied by it. I’ve also battled depression and anxiety for as long as I’ve had fibromyalgia.
‘But after having CBT, everything clicked into place. Instead of being consumed by it, I became more accepting of my condition and understood that the way I was thinking was affecting my physical health — the fear of the pain was stopping me getting on with my life. I’m still in pain, but it feels less intense.’
Her condition has improved so much that Hazel is now back at work three days a week as an office administrator, and no longer declines social invitations.
‘We go to basketball matches and concerts — before, that was unthinkable,’ she says.
Symptoms of fibromyalgia include back pain, fatigue, sleep problems, brain fog (known as fibro-fog), depression and anxiety
New research, published in December in the journal Pain, found that 60 per cent of patients with fibromyalgia who had CBT experienced an improvement in their symptoms.
And it doesn’t seem to matter what kind of CBT you have, according to the study by the Karolinska Institute in Sweden.
The researchers offered 274 people with fibromyalgia either traditional CBT (a combination of managing negative thoughts, relaxation, exercise and pacing — i.e. not overdoing it); or exposure-based CBT (which encourages the patient to repeatedly face situations or activities they previously avoided because of their pain).
After the ten-week online programme, which involved eight written ‘modules’ and regular contact with a therapist, about six in ten patients in both groups reported improvements.
‘CBT is based on the theory that if you change your behaviour in relation to your pain, it can affect your perception of it,’ Maria Hedman-Lagerlof, a psychologist who led the study, told Good Health.
‘The result can be that you care less about the pain and don’t let it affect how you go about your day to the same extent.
Unlike other chronic pain conditions such as osteoporosis and endometriosis, which have a direct ‘visible’ cause, fibromyalgia is thought to be associated with an oversensitive and over-responsive nervous system
‘In this study, the patients with fibromyalgia who benefitted experienced a minimum 14 per cent improvement in symptoms, and this improvement continued for 12 months after the completion of the treatment.’
Previous research using MRI scans of the brain suggests people with fibromyalgia may actually ‘feel’ less pain after CBT. In a study, published in the Clinical Journal of Pain in 2017, 16 people with fibromyalgia with a tendency to catastrophise (anticipating the worst happening and feeling helpless about pain) received either four weeks of CBT or education about the condition.
Those who had CBT reported much less pain and catastrophising at the six-month follow-up.
Dr Patrick Hill, a clinical and health psychologist and British Pain Society council member, explains: ‘All pain is produced by the brain and the central nervous system, according to what the brain thinks is going on — it’s not produced by the body and detected in the brain.’
‘You can’t see pain on an MRI but you can see brain activity associated with pain, and studies have suggested this brain activity may be lower in people with fibromyalgia who have had CBT.’
Unlike other chronic pain conditions such as osteoporosis and endometriosis, which have a direct ‘visible’ cause, fibromyalgia is thought to be associated with an oversensitive and over-responsive nervous system.
Those affected experience pain and fatigue in response to harmless triggers, such as doing more activity than usual. ‘Over time, biological, social and psychological factors interact with each other and create vicious circles,’ says Dr Hill.
‘If you have ongoing pain, you will naturally do less; this leads to muscle wasting, then you put on weight, lose confidence and your mood starts to dip.
‘You might not be able to work, you lose money, feel depressed and stop going out, all of which makes the pain more dominant.’
Initially Hazel’s back pain was blamed on the difficult labour with her daughter.
There is no cure for fibromyalgia and many affected by it find painkillers make little difference
‘But it became more widespread, and I then developed constant fatigue and brain fog,’ she recalls.
‘I felt very distressed. I saw my GP and I was prescribed painkillers, antidepressants and physiotherapy — but none of it really helped.’ (Antidepressants are thought to help by increasing chemical messengers in the spinal cord that reduce pain signals.)
CBT is a relatively new approach for pain, included in National Institute for Health and Care Excellence (NICE) guidelines in 2021. These state that people with ‘chronic primary pain’ — no clear underlying cause and lasting more than three months — should no longer be started on common painkillers such as paracetamol, non-steroidal anti-inflammatory drugs (such as ibuprofen), benzodiazepines or opioids. Instead they should try other approaches such as exercise programmes, psychological therapies (for example CBT), acupuncture and antidepressants.
The NICE guidelines reflect a lack of evidence that common painkillers make any difference to the quality of life of people with chronic pain because they build up tolerance to the medication. Furthermore, they can cause side-effects.
‘The general rule is that these drug therapies are about 30 per cent effective for 30 per cent of patients,’ says Dr Kim Lawson, a pharmacologist at Sheffield Hallam University and chair of the medical advisory board at the charity Fibromyalgia Action UK.
The new study suggests CBT could be twice as effective as medication. But it doesn’t work for everyone — it’s also not clear how long the effects might last; and many patients are sceptical about even trying it.
‘We know it takes on average between two and three years, but frequently up to ten years to be diagnosed with fibromyalgia, often after being passed from GP to one specialist and then another,’ says Des Quinn, chair of Fibromyalgia Action UK.
‘To then be told that a psychological therapy could help, for some patients feels like they are being told it is all in their minds and they are being fobbed off. That’s not the case — but many patients perceive it that way.’
CBT is not about saying the pain is ‘all in the mind’ but recognising that managing it involves changing your attitude to it, says Kim Lawson.
‘We need to do a lot more work educating patients and doctors about the complexities of fibromyalgia and that a multi-pronged approach, addressing physical, social and psychological factors is likely to provide the best results, so combining medication with psychological support,’ he says.
Since first developing pain 30 years ago, Hazel has had several courses of CBT.
‘The first was soon after I was diagnosed in 2005 and I didn’t find it that helpful,’ she says.
‘I wasn’t in the right place mentally. I was looking for a pill that would help. It was the last course, which I had about two years ago, which really helped me understand that the way I think affects my physical health.
‘I still take painkillers and antidepressants — although a lower dose — but CBT helps me lead a more normal life.’
The NHS is now adopting a CBT-based approach for chronic conditions such as diabetes, atrial fibrillation (an irregular heartbeat) and irritable bowel syndrome.
‘If you have any condition that brings on distressing symptoms, it is normal to feel anger, resentment and worry and this can turn into a negative spiral where the symptoms — and the thoughts and feelings around them — take up more and more space in life,’ explains Maria Hedman-Lagerlof.
‘In the end, all of your life can be about your medical condition and we know the more you think about pain, for example, this can lead to the mind becoming more reactive to it — it becomes a highway in the brain. CBT is about changing that focus.’