Routes to diagnosis

Recognising that somebody has arthritis can be difficult for GPs. People may describe non-specific symptoms like aches and pains which do not obviously point to a particular health condition. Also, arthritis in young people is rarer than it is in adults so GPs may not have looked after a young person with the condition before. As a result, people with symptoms, their parents and healthcare professionals may be puzzled as to what is going on. It can take a while for people to see a pattern or make connections between different symptoms around the body. It may feel like a process of elimination while other explanations are ruled out.
Some families ask for medical advice early on and sometimes doctors recognise the symptoms quickly. For example, David Z visited a GP who had just returned from a conference about ankylosing spondylitis and immediately recognised the symptoms. Doctors may order blood tests before they refer people to a rheumatologist, which may give clues but not a clear answer as to whether the problem is arthritis.
Getting a diagnosis can take a long time. People may put the early symptoms down to something less serious, such as growing pains, loose ligaments, overdoing it at the gym, or spending too long playing on games consoles. Parents may not realise what's happening, if young people keep quiet about their early symptoms.
Sometimes doctors explored other serious medical causes first, such as a gout, meningitis, leukaemia or lupus which may have similar non-specific symptoms. Most types of arthritis cannot be detected using blood tests and this can make a diagnosis difficult. A diagnosis is made by carefully asking questions about a person's health history and a physical examination. 
If young people report pain when there are no physical signs (such as swelling) then doctors or parents may wonder if the pain is real. Lucy’s mum was told by the doctor that Lucy got into a ‘bad habit’ of saying she had neck pain when her mum was driving. Caitriona’s mum was told that she was “play acting”. Kyrun’s mum remembers Kyrun getting angry and standing up for himself in hospital when doctors said that he was pretending to be in pain.
Occasionally a parent may question whether their son or daughter’s symptoms are real.
Once a doctor recognises the symptoms and makes a referral to a rheumatologist people may have further tests (see ‘Experiences of tests’), but a diagnosis is primarily made on careful history taking and examination. A specially trained rheumatologist can diagnose people quickly and begin treatment.

Last reviewed November 2018.

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