The crippling illness that GPs refuse to diagnose

By Isla Whitcroft for MailOnline
Updated: 05:12 EDT, 11 August 2009

When Maria Roberts began to experience sharp pains in her fingers, she assumed it was repetitive strain injury.

As well as working at her day job with a publisher, the single mother was trying to make a career as a writer and spent her spare time writing - typically working at her computer keyboard from 5am to well into the early hours of the next day. ‘I was proud that I was working so hard, but I had no idea I would pay such a high price for it,’ she says.

Then one evening, in spring 2006, as she checked a manuscript, Maria suddenly found herself unable to turn the pages. ‘I had sharp shooting pains in my hands, but I thought everything would be fine if I rested them.’

Winning the battle: Maria Roberts has taken charge of the debilitating condition

Overnight, Maria’s condition worsened. ‘It felt as if the blood in my hands was poisoned with burning acid. Within a week, the pain spread to my arms and legs. It was like a nightmare. I couldn’t sleep because of the pain and even a short walk was agony. I was only 28, but I felt like an old woman.’

She went to see her GP. ‘He prodded me in various places, asking how painful they were. When he pressed the base of my neck, I nearly jumped out of my seat with the pain. He also took blood tests to rule out conditions such as rheumatoid arthritis.

‘The final diagnosis was fibromyalgia. He said it was a chronic pain condition that would never go away, but I could learn to manage.’ 

She was prescribed strong painkillers and amitriptyline, an anti-depressant that can be used for sleeping problems.

‘I was distraught,’ she says. ‘I didn’t want to be ill for the rest of my life. And what would happen to my dream of becoming an author if I couldn’t use a keyboard?’

Fibromyalgia is a condition characterised by widespread pain and extreme fatigue. Other symptoms include headaches, problems with memory and insomnia - less frequently, patients may also suffer from irritable bowel syndrome and depression.

It’s thought that up to 300,000 Britons suffer from the condition, but many will go undiagnosed. Ninety per cent of those affected are women - no one really knows why - most of them middle-aged.

While the cause is not clear, research has shown sufferers experience subtle changes in the chemicals in the brain and nervous system; these cause an over-sensitivity to pain signals in the brain. Other research has shown patients have lower levels of serotonin, the feel-good hormone.

For a long time many doctors saw fibromyalgia as largely a psychological problem, but ten years ago it was recognised as a genuine medical condition by the World Health Organisation. Yet some medics remain sceptical.

‘The problem is that many of the symptoms of fibromyalgia are vague,’ explains Dr Heike Romer, a consultant in pain management in the NHS and at the Spire Liverpool Hospital.

‘Often GPs treat patients’ symptoms separately, rather than looking at them as a group and realising they indicate fibromyalgia. And because these symptoms aren’t life-threatening and the patient isn’t turning green, they are seen as a malingerer.’

Dr Tom Gilhooly, a GP from Glasgow who has worked with fibromyalgia patients for 20 years, believes the current approach to treating the condition is inadequate. ‘Often the patients I see are on a cocktail of drugs. Instead of handing out drugs for the symptoms, we have to get to the underlying cause of the problem.’

Dr Gilhooly believes this cause is an immune system response, perhaps to a virus or trauma - such as an accident - or simply to the body being pushed to its limit.

‘The problem occurs because people who are very tired are often unable to relax their muscles properly,’ he explains.

‘Over time, these permanently tense muscles become inflamed, causing pain. Once the pain receptors are activated in the brain it’s easier for pain signals to get there. Then, because the nerves are used more, over time they become more sensitive to the pain.

‘It’s a vicious circle; severe pain causes insomnia which in turn denies the body the chance to heal properly.’

He says taking a vitamin D supplement sometimes helps: ‘A wealth of research has shown that people with chronic muscle and joint pain are low in vitamin D.’

In America, trials with a drug called low dose naltrexane (LDN) have shown a significant reduction in pain for around 60 per cent of fibromyalgia patients. LDN appears to block some of the actions of pain receptors in the brain, but it is not licensed in the UK and is available only privately.

‘It has worked very well for many of our patients,’ says Dr Gilhooly. ‘It should be a standard line of treatment rather than just tinkering with the symptoms and telling people to put up with the condition for the rest of their lives.’

Living with the pain was something that Maria was not prepared to do.

‘I found a quote on a fibromyalgia forum that said you need to attack the condition head-on,’ she says. ‘So after consulting my GP, I cut out wheat, alcohol, dairy products, potatoes and refined sugars - anything that I found made my pain worse.’

After six weeks, Maria’s pain began to reduce. ‘I also had acupuncture, and took multivitamins, magnesium and ginseng to give me energy, and melatonin to help regulate my sleep.’

Her doctor also advised her to exercise. The theory is that exercise damages body tissue; as a result, the body releases anti-inflammatory compounds to help correct that damage, reducing pain and assisting healing.

‘I couldn’t face it, but my boyfriend begged me to just walk around the block. After a month I could walk 40 minutes to the shop. I found that ten minutes into the walk my pain and stiffness levels would drop and the effect could last for up to 24 hours. After six weeks, the pain subsided from red-hot to a severe ache.’

Gradually, Maria built up the strength to work, almost full time, and take her son Patrick, now ten, to the park on weekends. ‘However, there were still times when I was too exhausted to get out of bed.’

Three months ago she felt confident enough to stop taking the amitriptyline and today is more or less pain free. ‘If I work too hard or don’t get enough sleep I feel a nasty tingling in my hands and arms,’ she says. ‘I know that’s a sign to slow down.’

‘Sufferers will never fully recover from fibromyalgia,’ says Dr Gilhooly. ‘It is a life-long condition that can flare up at any time. But with proper management you can lead a pretty normal life.’

• Single Mother On The Verge by Maria Roberts is published by Penguin, £6.99. For more information about fibromyalgia, visitwww. fibromyalgia-associationuk.org