Myth, mystery and scepticism used to surround fibromyalgia. Understanding is increasing, but it’s not straightforward.
1. You’re ill but don’t look it
As with many chronic conditions, fibromyalgia is an invisible illness; there are no visible symptoms. The person with fibromyalgia may, however, be experiencing muscle pain, headache, stomach pain, fatigue, memory problems (“fibro-fog”), sleep disturbances, painful periods, depression, anxiety and sensitivity to temperature, noises and bright lights.
Pain is the foremost symptom of fibromyalgia and most commonly occurs in the neck, back, shoulders, pelvic region and hands. Sometimes the pain is widespread and extreme; at other times, it may be reduced and limited to a particular region.
2. There’s no specific test for fibromyalgia
Doctors sometimes struggle to diagnose fibromyalgia because it can’t be detected by X-rays or blood tests. The bizarre comings and goings of pain also make it difficult for onlookers to comprehend.
As a result, some doctors have even questioned whether the condition exists. Dr Chris Jenner, consultant in pain medicine at St Mary’s Hospital, acknowledges that this is one of the biggest frustrations for his patients. He has seen first-hand the devastating effects of fibromyalgia and knows that it is “very, very real”.
3. Symptoms come and go
With fibromyalgia, you don’t know how you’ll feel tomorrow: it’s often compared to being on a rollercoaster ride, with difficult hills to climb as symptoms worsen (and there’s no getting off the ride), more tranquil troughs as symptoms settle, and times when you feel you’re riding a loop or spinning in a corkscrew as your body is battered with pain and fatigue.
You might feel better tomorrow but a flare-up can strike without warning. Christine Craggs-Hinton, author of several books on fibromyalgia, explains that stress, a lack of sleep, cold and/or humid weather conditions and too much of the wrong type of activity can make things worse; sometimes, though, symptoms suddenly disappear for a while.
4. Treatments exist, but they’re not a cure
There’s no cure because there’s uncertainty about the cause. Brain chemicals, hormones and genetics may be involved; a role for environmental toxins such as pesticides, aerosols and car fumes is also possible.
Trauma to the body, whether physical or emotional, may be relevant. Dr Buskila, world expert in fibromyalgia, found that fibromyalgia is often diagnosed after neck injury, perhaps because of disruption to the pain signals in the spinal cord; five individuals were diagnosed with fibromyalgia after a train crash. More recently, a study in Finland suggested that severe emotional stress in childhood might trigger some cases of fibromyalgia.
Painkillers may go some way to relieving the pain of fibromyalgia; antidepressant and antiepileptic drugs are used to redress the possible imbalance of brain chemicals. More useful may be cognitive behavioural therapy to learn pain management techniques, complementary therapies and gentle exercise, tailored to individual ability.
5. You need sleep but can’t get it
During deep sleep, hormones are released that contribute to muscle growth and repair: just what is needed in fibromyalgia. Trouble is, many people with fibromyalgia struggle to sleep; pain and muscle cramps often keep them awake. What’s more, even when they do sleep, brainwave studies with fibromyalgia show a lack of deep sleep, the very phase sufferers need most.
Whether music may improve sleep in fibromyalgia is debated; sensitive words and understanding, though, are definitely music to their ears.
Helen Cowan completed a PhD in cardiac pharmacology at Oxford in 2002. She is a qualified nurse and has written for the British Journal of Cardiac Nursing, and worked as a columnist in the Nursing Times. Read more from Helen here.