If your teen won’t get out of bed, it could be more than growing pains
by Barbara Rowlands
Like most teenage girls, Sharon Stephenson wanted to look her best, but getting ready to go out was agony.
"Sometimes I couldn’t even lift my hand in the morning to do my hair," she recalls.
"I was the kid who was always poorly, I was the one who suffered severe growing pains and who could hardly walk. But you didn’t complain because people thought you were being daft."
She wasn’t being daft and it wasn’t ‘growing pains’ – the pain continued into her 20s and 30s. Sharon, 45, who lives in Bradford with her partner Patrick and works in corporate sales, found it hard to cope.
She says having an office job and looking after daughters Emma, now 19, and Laura, 21, wasn’t easy.
"I couldn’t take time off work and just had to try to ignore my pain and get on with things."
Just over ten years ago she was diagnosed with fibromyalgia, an incurable chronic rheumatic disorder. She believes the "growing pains" of her adolescence were the first signs of the condition.
Fibromyalgia is a painful condition affecting the muscles, tendons and ligaments – it occurs as a result of an abnormality in the patient’s central nervous system. There is no obvious physical cause – rather, the sufferer’s nervous system misinterprets pain.
Give most people a friendly prod and they’ll hardly notice it, whereas someone with fibromyalgia may well cry out in pain.
"Sometimes it feels like you’ve done a really heavy gym workout when you haven’t been for ten years – or it can feel like someone is stabbing all your muscles," says Sharon.
"Sometimes you can’t bear to feel the clothes on your body because your skin feels bruised and hurt. The worst part is the fatigue.
"It can come on suddenly, as if someone’s put a syringe into me and drained out my energy."
People with fibromyalgia also often find they rarely enjoy deep, refreshing sleep. About 2 per cent of adults – just under one million people in the UK – have the condition, says the self-help group Fibromyalgia Association UK.
It is most common in the over-40s, and seems to affect perfectionists and workaholics more than others.
It is not clear what causes it – some doctors blame a genetic abnormality, which means sufferers produce too much of the brain chemical responsible for sending pain signals.
Another theory is that it’s a result of abnormal levels of the brain chemical dopamine, low levels of which are linked to Parkinson’s disease. There is usually a trigger, often a virus or accident, which affects the nervous system.
The condition affects nine times as many women as men – it is not clear why – and increasingly it is younger people, says Professor John Davies, a consultant rheumatologist.
He runs a weekly fibromyalgia clinic at Guy’s Hospital, London, one of a handful in the UK, and has a waiting list of 600.
A recent study of school children in Mexico, Finland and Israel found that 6 per cent reported muscular pain.
"Growing pains are very real, but we think now that many children were diagnosed with this when actually they had fibromyalgia," says Pam Stewart of the Fibromyalgia Association.
Kathryn Longley, 34, a molecular biologist, has had fibromyalgia since she was 15, although it took four years for it to be diagnosed.
She is currently writing booklets for the support group – one for children and one for parents.
"A lot of children I’ve been in contact with are 15 or 16 but have had symptoms since they were 11," she says.
"Children with fibromyalgia can struggle with schoolwork and friendships because they are often in too much pain to attend school."
Doctors can also be reluctant to label a child with a long-lasting incurable condition.
Dr Patrick Wood, who runs a fibromyalgia clinic and research programme at Louisiana State University, says: "We tend to discount pain in children – we expect them to be full of life.
"So, if a child begins to complain of aches and pains, they’re often dismissed as attention seeking or making something up."
There are also plenty of doctors who dismiss the condition, believing that it is "all in the mind". Or they use it as an umbrella term for unrelated symptoms they can’t treat, says Pam Stewart.
"If a patient’s in pain, has fatigue and nothing shows up on the tests – they just call it fibromyalgia."
The problem is that there are no blood tests, scans or X-rays for fibromyalgia, although the American College of Rheumatology drew up criteria in 1990 for its diagnosis – widespread pain for at least three months and in at least 11 of 18 "tender" points on the back, neck, knee, elbow and buttocks.
But the real problem is that it can take years to be diagnosed, with people being passed from orthopedic specialists and neurologists to psychiatrists.
People with fibromyalgia often have irritable bowel syndrome – so they might be sent to gastroenterologists. But the specialists they need to see are rheumatologists – even though the root of fibromyalgia is neurological, it is treated by doctors who deal with aches and pains.
"Once the rheumatologist has made a diagnosis they often say there is no cure," says Pam Stewart.
Many are then put on wrong medication, such as painkillers. This is unhelpful because, although fibromyalgia is a longterm condition, there are an evergrowing number of drugs which, although not licensed for the treatment of fibromyalgia, are effective.
A low dose of the anti-depressant amitriptyline is the most common treatment.
Some doctors also prescribe the newer anti-depressants – selective serotonin reuptake inhibitors, of which Prozac is the best known.
Other research is focusing on another brain chemical, dopamine, which works to reduce the body’s response to pain.
Pramipexole, a drug used to treat Parkinson’s disease, appears to significantly reduce pain in severely ill fibromyalgia patients. The drug produces the same effects as the chemical and acts as a substitute.
Pregabalin (Lyrica), a drug commonly used to treat epilepsy and nerve pain in diabetics, has been licensed for use in America. It calms overactive nerve cells.
But medication isn’t everything because it isn’t totally effective. Cognitive behavioural therapy, physiotherapy – even, according to new research, meditation – can also help.
Sharon Stephenson was prescribed the anti-depressant amitriptyline, but found it didn’t help and now manages her fibromyalgia with stretching, aerobics and a positive attitude.
Helen Broome, 23, who has had fibromyalgia since she was 18, turned her back on high doses of steroids and now follows a rigid diet, cutting out caffeine, alcohol, wheat, sugar, white rice and potatoes – all of which can trigger neurochemical disturbances.
The diet has transformed her life.
"I was ill for five years and now I feel amazing," she says.
"I sometimes get tired and sluggish, but nothing major. Before I barely used to leave my room."
To contact Fibromyalgia Association UK, call 0845 345 2322 or log on to www.fmauk.org.