This debilitating condition is little-known and often misdiagnosed but it can be managed
Imagine aching all over your body and having muscles that are too sore to be touched, or waking up after 12 hours sleep still feeling exhausted with a cloudy head and irritable bowels. This is the reality of people who have fibromyalgia. Because of its wide range of symptoms, it’s quite difficult to diagnose.
Cases of fibromyalgia have risen in the last 20 years and this is probably because of increased awareness. However, there have been suggestions that the Western world’s hectic lifestyle and increasing stress levels could also be a cause. It’s thought that 16-40 million people worldwide have the syndrome with an estimated 2 per cent of the UK population (around one in 50) being affected. The figures are estimated because many people have yet to be officially diagnosed. It affects more women than men (in a ratio of 10:1) and any age group can get symptoms, although many of the cases are diagnosed during middle age. Children can also suffer from it.
What are the symptoms?
They vary, but often include:
Widespread muscular and joint pain The pain you feel is very individual and can appear all over the body including the knees, neck, chest, and elbow. Pain in the jaw can affect as many as 90 per cent of fibromyalgia sufferers according to a 1997 report. For some the pain is such that they can no longer carry out a normal lifestyle and have to give up work or, in extreme cases, become wheelchair bound. For others, the pain is there, but much easier to manage.
Fatigue and unrefreshing sleep Many fibromyalgia sufferers still feel exhausted, even after a full night’s sleep. This can lead to blurred thinking and memory problems which sufferers have dubbed ‘fibro-fog’.
Irritable bowel syndrome is believed to affect 40 to 70 per cent of sufferers.
Sensitivity to temperature, noise and light This is linked to imbalances within chemicals in the brain which enhances sensory stimulation to a level which can be extremely uncomfortable.
Other common symptoms include restless legs syndrome, depression and a weakened immune system.
What causes it?
Nobody really knows what triggers fibromyalgia. However, there are certain features or causes that are common to it.
Neuro-transmitters Researchers have increasingly found that people with fibromyalgia have higher levels of a neuro-transmitter called substance P, a chemical in the brain that transmits pain signals. This means that your body becomes over-sensitised to pain, and something that may cause a slight ache to some people, is agonising for fibromyalgia sufferers.
Genes Fibromyalgia can be hereditary, so if a family member has it, your chances are increased.
Trauma Studies show that fibromyalgia can be triggered by some kind of trauma, either physical or emotional. Suffering whiplash after a car accident is often linked to fibromyalgia and the chemicals activated by the stress of the event can affect the nervous system in the body. Other triggers include viral infections, childbirth, an operation, hormonal changes such as pregnancy and childbirth, or an emotional event such as a bereavement.
Stress While stress does not necessarily cause fibromyalgia, it can result in a vicious circle. You’re stressed because you’re in pain, but the stress ends up affecting your body even more and causing more pain.
Getting help
Diagnosis of fibromyalgia results from a gradual process of excluding many other conditions, which have similar symptoms, such as chronic fatigue syndrome or arthritis. Your doctor will usually refer you to a rheumatologist where they can examine you.
There is no cure at present for fibromyalgia, but there could be one on the horizon. Research trials have focused on neural imaging, which looks at how different areas in the brain are affected by pain. There is no set treatment for managing your fibromyalgia as it depends what symptoms you have and what works best for you. The best way to treat it is by using a combination of different methods.
Pain management Some pain specialists will refer you to a pain management programme, where lots of specialists e.g. doctors, nurses, physiotherapists, occupational therapists and psychologists will help you manage your symptoms. You will be given advice regarding exercise and physical activity and be taught techniques for deep breathing and relaxation and stress management as well as how to control your condition so you don’t become overwhelmed by it.
Painkillers The rheumatologist may prescribe non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen to reduce pain while medicines that boost levels of serotonin in the body can also help improve sleep and low mood. Sometimes antidepressants are prescribed but these are for sleep and pain symptoms rather than actual depression.
Exercise Pick gentle forms of exercise such as yoga, swimming or walking and start slowly, building up levels gradually otherwise you could do more harm than good. As well as the positive effects on your muscle, joints and your circulatory system, exercise also releases endorphins which make you feel good.
Hydrotherapy and Balneotherapy involves your body being immersed in warm, mineralised water, such as in a thalassotherapy pool.
Massage A study presented at the 2007 EFIC Pain Congress found therapeutic massage to be the most popular complementary therapy among fibromyalgia sufferers, due to its relaxing effects.
Magnesium supplements can help fibromyalgia as the mineral is needed for production and transportation of energy within the body’s cells.
Essential fatty acids found in omega-3 and -6 may help fibromyalgia sufferers as they have an anti-inflammatory effect.
Glucosamine is also thought to help as it helps joints stay mobile.
Antioxidant supplements such as vitamins C or E are vital for fibromyalgia sufferers as they help mop up the damage caused by the inflammation that occurs within the body.
Multi-vitamins containing a good level of B vitamin is essential for keeping the immune system healthy, as in fibromyalgia sufferers it tends to be weaker.
Diet A healthy, balanced diet will help you keep on top of fibromyalgia. Avoid stimulants and depressants such as caffeine or alcohol – eventually your body will crash and burn if you become too reliant on them. Some fibromyalgia sufferers find reducing sugar-based foods helps their IBS symptoms.
The key to dealing with fibromyalgia is finding out what works for you. Accept that you’re going to have good days and bad days and pace yourself accordingly. By listening to your body, it is possible to keep a hold on the condition. Try to keep active and set some time aside to do some deep relaxation each day.
Fibromyalgia Association UK can provide information and support on the condition and also publishes a dedicated magazine called FaMily Magazine.
Find out where your nearest Fibromyalgia UK support group is by calling 0845 345 2322 or by visiting www.fibromyalgia-associationuk.org.
Do contact your GP or other health professional if you become worried or concerned about your symptoms or need any further medical advice.
Expert: Dr. Nicola Adams is a lecturer and researcher in the Faculty of Medicine & Health Sciences at the University of Nottingham. She has a special interest in managing fibromyalgia through complementary and alternative therapies.
Words: Hannah Fox
2 comments
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I have suffered with terrible pain all over my body, extreme fatigue and numbness in my arms,legs and feet. This is a debilitating illness which changes your life. I am so pleased this condition has now been recognized as I have felt isolated due to the fact that no-body understood my symptons. My life has changed so much because one day I can cope with the pain, then the next day or even days I spend in bed. I really hope that a cure is found as I just want to be pain free and live a normal life.
Comment by Helena Slack on 15 February 2010 at 1:34 pm
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Hi Helena, just wanted to say you are not on your own and I know how awful the isolation is when you are housebound. I bet on the odd day when you struggle outdoors people say “but you look okay” and you want to throttle them!! Here’s hoping for a cure asap, I’m fed up with the itching and soreness caused by my Butrans patches!!
Comment by Gillian Wright on 4 March 2010 at 9:47 pm
