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Young People and Fibromyalgia

Who gets fibromyalgia?

 

Anyone can develop fibromyalgia although it is far more common in girls than in boys. It is often triggered by an infection, an accident or intense stress, which kick starts the process leading to the symptoms of fibromyalgia. Often young people develop fibromyalgia as teenagers.

 

Doctors think that the differences in our genes and the environment that we live in can make some people more likely to develop fibromyalgia than others. Sometimes, fibromyalgia can be seen to run in families, which supports this idea.

 

How will my doctor know I have fibromyalgia?

 

The first port of call is always your GP. GPs should follow what they do for any childhood condition, treat it as a general thing at first and then if it doesn’t clear up refer you on to a community paediatrician (pee-dee at-ri-tion child specialist) at your local hospital. It can be frustrating if you feel your GP is not responding and has little knowledge of fibromyalgia. However, your GP may not have a detailed knowledge, as their job is to identify that there is a problem and to refer on to a specialist. GPs see a wide range of children, the majority of whom, despite having aches and pains, do not have fibromyalgia. In fact, a GP could expect to come across only one or two children with fibromyalgia in their whole career.

 

The community paediatrician at your local hospital will do a general overall health check. If fibromyalgia is suspected then you can be referred for a further check or for treatment.

 

Fibromyalgia is usually diagnosed by a paediatric (pee-dee-at-ric) rheumatologist (roo-ma-tol-o-gist). The doctor will look at your medical history and listen to your account of your symptoms. Then the doctor may make a physical examination. Certain areas of your body are pressed to see if they are particularly tender. These tender areas are called tender points. These areas need to be found above and below your waist and on both sides of your body. If there are at least five tender points (11 in adults), then the doctor will consider a diagnosis of fibromyalgia. Before giving a diagnosis it is important that he/she rules out other conditions which may be causing your symptoms, like juvenile arthritis, lupus or connective tissue disease.

 

Some doctors are cautious about labelling a young person with fibromyalgia. This is because many young people can get better and doctors do not want a young person to see themselves as having an adult condition they may not recover from. For this reason doctors tend to use terms like diffuse idiopathic pain syndrome (DIPS), soft tissue rheumatism or chronic pain syndrome instead. If the symptoms carry on into adulthood then a diagnosis of fibromyalgia might be made at a later date.

 

Doctors don’t always explain things clearly so don’t be afraid to ask the doctor questions. It is a good idea to write down any questions you have before your appointment so that you remember to ask them.

 

Will I get better?

 

Young people can get better over time. Young people have a better chance of recovery than adults with fibromyalgia. This is because young people are still growing, so their nervous system is changing and developing all the time. Some young people still have grumbling symptoms beneath the surface which may flare at a later date, or may disappear altogether. At the moment there are no scientific studies that have followed children with fibromyalgia closely over long periods of time.

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