Death by a thousand needles: The debilitating condition that leaves sensitive sufferers in excruciating pain
It is a chronic condition that renders sufferers so sensitive that even the lightest touch triggers waves of excruciating pain. Fibromyalgia is thought to affect up to a million Britons, commonly women over 40, and experts have likened the debilitating sensations to ‘death by a thousand needles’.
Other symptoms include lack of concentration, memory loss, headaches and muscle stiffness. And for a long time there was little doctors could do to help quell the agony.
Yet today, with the help of sophisticated scanning techniques, pain specialists have been able to pinpoint the parts of the brain responsible for the condition.
Using a combination of psychotherapy and medicines more commonly used to treat depression and epilepsy, many sufferers are able to find relief.
‘Patients with fibromyalgia typically have what we call tender points,’ says Dr Ernest Choy, consultant rheumatologist at King’s College Hospital in London.
‘There are 18 sites throughout the body – in the neck, back, arms and legs – where, with light pressure, they experience pain, when a normal individual wouldn’t.
‘As well as pain, patients usually complain of a degree of fatigue and poor sleep quality. Depression and chronic pain often go hand-in-hand – it’s so hard to cope with such grinding discomfort every single day.’
There is no specific test for fibromyalgia so it is often diagnosed once other conditions, including chronic fatigue syndrome and rheumatoid arthritis, have been ruled out.
The patient will have suffered widespread pain for three months on both sides of the body, above and below the waist, as well as pain in at least 11 of the 18 known tender points when pressed.
Side effects: Depression and chronic pain often go hand-in-hand – it’s so hard to cope with such grinding discomfort every single day
‘Unfortunately, fibromyalgia isn’t well understood by many clinicians because pain is often a very subjective symptom,’ says Dr Choy.
‘According to a European survey, it takes approximately 18 months to two years to get a diagnosis of fibromyalgia. There are still a lot of clinicians who don’t even know about it.’
The exact cause of the condition isn’t known but, according to Dr Choy, research has highlighted that it is likely to be due to a problem with how the nervous system handles pain.
‘When a normal individual experiences pain, there is what we call a coping process in the brain that manages it,’ he explains.‘In some patients with fibromyalgia, that process isn’t working properly so their threshold for experiencing pain is much lower.
‘Recent advances in assessing the way the brain works, using functional magnetic resonance imaging [fMRI], have really changed our understanding of the disease.
‘It’s clear that the way the brains of people with fibromyalgia process pain is very different from normal individuals.’
There are certain risk factors for developing the condition.
‘My symptoms started almost six years ago, with my joints suddenly swelling and feeling very painful’
‘There is evidence to show that people who have physical or psychological stress are more prone to developing fibromyalgia,’ says Dr Choy.
‘In some individuals it may be that they sleep very poorly, while in others it may be that they have other illnesses, such as depression.’
There is no cure, but treatments can help ease symptoms. Dr Choy explains: ‘The aim of treatment is to help patients cope with their condition.
In most patients, we use a combination of non-drug-based treatments, as well as medications.
‘Exercise can be helpful. Although many patients get worsening of their pain when they start, if they build up exercise gradually, they’ll get long-term benefits.
‘Taking warm baths or exercising in warm water will also help alleviate the pain and tiredness. Cognitive behavioural therapy, a kind of pyschotherapy, can help improve patients’ ability to handle the pain.
‘Aside from that, some simple painkillers can help, and we often prescribe antidepressants mainly because the chemical substances in the brain that control the processing of pain are also the same as those that cause depression.
‘These are given at much lower doses than are used to treat depression, though. Anti-epilepsy drugs have also been shown to be effective. These work on readjusting the nervous system and reducing sensitivity to light pressure.’
Lifestyle changes are key: Exercise like swimming or t’ai chi can help, but sufferers can experience increased pain when they first become mobile
One sufferer, Nicki Southwell, 53, runs a fibromyalgia support group. Nicki, who lives in Carlisle with her husband Merlin, 51, a teacher, says: ‘My symptoms started almost six years ago, with my joints suddenly swelling and feeling very painful.
‘It got so bad I couldn’t climb the stairs. I was eventually diagnosed early last year, though no one knows what caused it. In the meantime, I had to stop work as a carer.
‘And although I’m usually very organised, suddenly I couldn’t find my diary or manage the housework. I felt totally out of control and I hated that. Along the way I’ve suffered with depression too, but I don’t know if that’s because of the fibromyalgia.’
More than a year on from her diagnosis, Nicki sleeps normally but wakes with aching, stabbing pains – mainly in her back and legs. Her short-term memory is also still poor so she makes lists.
‘I take painkillers and I use a Transcutaneous Electrical Nerve Stimulation [TENS] machine for pain relief, which delivers electrical impulses to the body,’ she says. ‘I also did an NHS hydrotherapy course, which involved exercising in warm water and was brilliant.
‘I know lifestyle changes are key, so I’m going to try swimming, t’ai chi – anything. I still have bad days but things are getting better.
‘My message to other sufferers would be to persevere for diagnosis and treatment. Don’t give up hope.’
Dr Choy says: ‘What works for one patient might not for another. It is important to remember there are treatments already available that can help ease symptoms. I think the future is looking bright for patients with fibromyalgia.