Being in constant pain, and so fatigued that even the simplest everyday tasks become mammoth challenges is bad enough.
For many people with fibromyalgia, however, these things are only part of the battle – often one of the toughest things to deal with is the lack of understanding.
“With chronic fatigue-type conditions, sometimes other people will say, ‘Oh, well I feel tired sometimes too, you just have to get on with it’,” says Dr Kim Lawson, from Sheffield Hallam University’s Department of Biosciences, Biomedical Research Centre. “They don’t appreciate the severity of it.”
And fibromyalgia (FM) can be extremely severe, to the point that even normal or soft touch can elicit significant pain. Simple movement can feel unbearable, while sitting down can be excruciating too. Fatigue’s usually what causes most problems though, and many people end up having to give up jobs and hobbies and change their lifestyles.
A REAL ILLNESS
The condition affects an estimated two million people in the UK, but while the numbers are unknown in the UAE, Dr Humeira Badsha, consultant rheumatologist, Dr Humeira Badsha Medical Centre, Dubai, says 90 per cent of cases are women because the disease is associated with hormonal disturbances. “I see at least 10 people per week with fibromyalgia. Five years ago I used to see three to four.
“It’s more widespread than we think because many people are misdiagnosed or not diagnosed – there are no tests like blood tests or X-rays that can identify the disease.”
In the UK it’s believed that only 20 per cent of people with fibromyalgia have actually been formally diagnosed.
“Because of the complexity of symptoms, and because there are no simple tests – it is really difficult to diagnose,” says Lawson. “So about 80 per cent are in the wilderness.”
Often people will be going back and forth to their doctor; on average it takes seven to eight years to get properly referred and diagnosed.
“Certain lifestyle choices can make it worse,” Dr Badsha says. “Stress, and food – an example is gluten intolerance. A combination of lifestyle factors and increasing awareness of the condition are leading to more frequent diagnosis.”
This can come as a huge relief, notes Pam Stewart, chair of the charity Fibromyalgia Association UK (FMA UK). “They are not hypochondriacs, or going mad!”
But FM is a lifelong condition and there’s no cure. Treatments are limited and Stewart says depression is quite common. “It’s estimated that 30 per cent of people with FM have depression. The lack of treatment would certainly add to any anxiety.”
Lawson can see why it’s so easy for this to be the case. “You look at the vast majority of people with fibromyalgia and there doesn’t seem to be anything wrong with them, it’s invisible. But you walk down the road and you wouldn’t be able to point out those people with diabetes or high blood pressure.” Yet, the validity of those conditions isn’t constantly questioned.
One factor is the nature of symptoms; widespread chronic pain and fatigue are the main ones, while sleep disturbances, cognitive problems – like trouble concentrating and confusion – bowel problems, dizziness, stiffness and headaches, among other things, can also occur.
“I tell people to avoid gluten in their diet,” says Dr Badsha. “Gluten intolerance also presents with similar symptoms and by eradicating gluten it highlights the fibromyalgia, making it easier to treat. And people in the UAE suffer from vitamin D deficiency because they don’t spend time in the sun, which also contributes to muscle pain and fatigue levels.”
Since exhaustion affects most, if not all of us, to some degree, it can be difficult for people to recognise it’s part of an illness; an issue people with conditions like ME, or chronic fatigue syndrome, have to endure too – both in terms of the general public and the medical community. It is still early days though, Lawson points out.
“Fibromyalgia was only really clearly recognised and defined at the beginning of the Nineties, so we’re only looking at 20-25 years, that’s no time at all,” he says. “If you look at things like depression, it took a very long time before we even started to accept depression really did exist.”
In terms of research, progress is happening, he notes. “There’s been some good stuff coming out of Spain where they’ve demonstrated clear genetic differences between people with fibromyalgia and those without. Evidence demonstrates alterations in people’s biology, changes within the brain and spinal cord, rewiring, if you like, that affects the pain response pathways.”
Earlier this year, FMA UK surveyed patients about the impact of FM. Almost 50 per cent said, overall, the treatment they received was poor, and only a small minority reported good levels of pain management.
The need for more effective treatment was the focus of this year’s National Fibromyalgia Awareness Week in May. The charity points out that the National Institute for Health and Care Excellence (NICE) has timetabled to look at whether FM should be considered for action in 2016, so it is keen for extensive and accurate data to be gathered.
FM affects every individual differently, but those who manage their FM most successfully, Stewart explains, don’t rely solely on medical professionals, but also exercise, a life change and certainly a thinking change, because a lot of people with fibromyalgia are perfectionists or workaholics, she says.
Lawson agrees that while adapting can be devastating, it’s crucial: “Pace yourself and learn how to do things so they don’t interfere with your quality of life.”
Coping techniques, which may include talking therapies, and reducing stress, also play a big part. Exercise may seem like the last thing somebody with chronic pain should be doing, but it’s actually one of the most important elements, both in terms of managing physical symptoms and giving you a much-needed “endorphin boost”.
Yoga is said to be particularly effective, according to a recent study carried out at Emirates Arthritis Foundation, Dubai, UAE, which Dr Badsha founded. Patients who completed 12 sessions of Raj yoga, which is one of the gentler styles of yoga, combining exercise and breathing techniques showed significant improvements. “We believe that practising yoga longer term could in fact result in significant improvements long term.”
Getting the balance right is important, though. “What we really mean is activity,” Stewart adds. “It could just mean starting by ensuring you get up from the sofa every 20 minutes to walk around the room. Gently and gradually build that up.”
In the UAE 3,000 people have been treated using a technique called Dynamic Neural Retraining System (DNRS) – a Canadian programme that is designed to remap the brain away from a constant cycle of illness and back to full health over a period of six months with positive results. And alternative therapies, like acupuncture, hydrotherapy and homeopathy can also be very useful.
“I know people with fibromyalgia who hold down full-time jobs, and who horse ride,” says Lawson. “But they haven’t done these things overnight; they’ve built it up.”
For psychological coach Nick Seneca Jankel, author of new book Switch On (www.nickjankel.com), that mental shift towards being a proactive participant in managing your health is all-important. He speaks from first-hand experience, as he was diagnosed with FM while studying medicine in 1997.
“While debilitating, fibromyalgia was also one of the great turning points of my life,” he says.
After eight years of “agony and heavy, mind-numbing medication”, Jankel was inspired to focus on tackling his symptoms from within. “This is also when I started my empowerment and coaching company, the two going hand in hand.”
He says things such as mediation and spiritual exploration have all been vital in his own healing.
For Stewart and fellow FMA UK volunteers, the majority of whom have FM, involvement in the charity has enabled them to help others – and themselves in the process. “Everyone knows what it feels like. You haven’t got to start explaining from square one what it’s like to have FM.”