When young people develop any symptoms, I think of joint pain… the first thing I think is to remember that arthritis is only one of many causes of joint pain in young people and not to imagine that if you've got a sore knee it necessarily is arthritis but it is important if it continues on, isn't related to any injury etc to get it checked out by a doctor. Now some young people will not want to complain of pain or symptoms and just put up with it. But if it is continuing it is wise to see a doctor and go to the GP and ask them to check them over to see if there is any concern. Arthritis is diagnosed by an examination, there are no blood tests that diagnose arthritis. It helps decide which type of arthritis but arthritis is diagnosed by physical examination and taking the story from the young person. Now that takes skill and we're hopefully improving awareness amongst doctors and health professionals about how to examine young people's joints and take good histories so that they can decide whether somebody's got arthritis or not, but it is important that they seek advice regarding it.
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.
I think the, one of the problems both from a patient point of view and from a professional point of view or a rheumatologist point of view is the lack of awareness that arthritis can affect young people and that they are not believed and they're told they're growing pains and there's a delay in the diagnosis because of the awareness that young people don't get arthritis and the sites like this will hopefully raise awareness that young people do get arthritis and it is very important for them to be treated early. One of the big differences with juvenile arthritis and adult arthritis is juvenile arthritis is affecting a growing skeleton and the effects of arthritis are different because it is affect….it can affect the growth of that joint and then once that joint is, you know damaged or whatever by the arthritis then the growth is also affected and that has implications then long term. So we want to see children and young people as early as possible in order to prevent any of their growth being affected as well as any of the bones being affected. And that is different to an adult arthritis because the joints are fully grown and growth isn't affected.
When she was 18 months old she started coming downstairs walking and all that and we noticed that she started hanging onto the banisters to come down the stairs and so it was something to do with balance. We thought it was an ear infection because she had a bit of a sniff and cold and a bit of a sort of a virus at the time. And so it didn’t clear up and she still hung onto the banisters so we actually went down to the doctor and no disrespect to our GP, but luckily he was on holiday and we had a stand-in locum who was paediatric trained.
And after the first consultation he referred her to a super-fast clinic, direct to the local area consultant rheumatology and the next day we saw the consultant NHS. And that consultant in 1993 is still the same consultant seeing Elizabeth what 17 years later with the same physiotherapist and the same rheumatology team.
So from the outset that was our experience of the NHS. So we’ll go on from there.
That’s quite remarkable then so was the diagnosis quite quick?
The diagnosis was after a few blood tests and other things I can’t remember, was literally you know within a week I would think, or on that day it could be because we were obviously shell shocked
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.
Karen' I think it was back in February. Charlotte’s always complained of sore knees and we took her to the doctors when she was younger, seven but they always said they were growing pains, nothing was ever, never looked into or anything. And now, when we look back, we think maybe that was the beginning of it but it really became an issue in February. Charlotte used to go to boarding school. She came home ill and she had about a week off and then she went back because she was perfectly healthy before that week and she started complaining of joints hurting, mostly her thumbs started to ache.
But we just put that down, she was doing GCSEs at the time, a lot of work and she used to box and we just put it down to all things that connected with that. Then wrists were hurting and we just, once again said it was all the jolting from the boxing and her feet were sore and we put that down to she needed new shoes. Never once connected that she had an illness or anything.
Anyway, it got to the point where her thumbs were so sore we ended up taking her to the doctors and he, once again, said it was loose ligaments and it was normal in a child of her age. Again, about I think about two weeks later, she still she couldn’t write.
But like I say, the symptoms were just normal. Nothing out of the, that you’d put down to arthritis. Never once clicked.
Robert' However, when she was boxing, she was complaining of how much it hurt her wrists and ankles and stuff like that and getting injured but the injuries weren’t sort of consistent with the boxing making it worse more but she used to just carry on with the boxing and just associated with the normal pain from boxing but it wasn’t.
Robert' Her and her energies weren’t sort of getting any better. You know.
Karen' But she didn’t complain too much because she wanted to, she loved it, enjoyed her boxing and things so Charlotte never, didn’t tell us the full extent of what pain she was in because she thought we’d stop her from boxing. She wanted to carry on as normal as she could. So, yeah.
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.
David is studying Economics at university. He is single and white British.
Up to the point of when I was eighteen, nineteen, I was a completely normal teenager. I was exercising. I used to run quite a lot and it wasn’t until then that I started to notice some symptoms of something I didn’t realise or didn’t know what it was, yeah. It started off with some neck pain, actually, and it started to get really stiff but well, I just thought it was growing pains or whatever, so I just ignored it. And then a couple of months later from that, it started to move so including my neck it also moved to the bottom of the spine. That would get quite stiff and over time, hands and feet and it was at that point I realised that was not really normal for growing pains. So I went to the doctor and they did the initial test for ankylosing spondylitis because automatically it triggered something and they did blood tests to check for inflammation and an x-ray to see if there was any fusion that’s characterised with ankylosing spondylitis.
And they were both they were both negative for any signs so they thought, okay, maybe it is just growing pains. So they sent me away and just to see how it goes and if it got any worse, come back and it didn’t get any better. In fact, it got quite worse, not particularly that it moved anywhere but it just intensified and to the point where it was actually starting to interfere. I couldn’t cope normally. I couldn’t function normally and so I went back and because they’d already done the test for AS they weren’t as keen to go down that route. So they started to go down different routes, maybe it was nerve pain, maybe it was something else that they hadn’t realised yet. So, they were they sent me to a consultant at a hospital and they did various MRI scans to see if I’d maybe slipped a disc in my back that could have triggered pain to other parts of the body.
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.
And I thought it was a virus. So then from the October to the following April she was a bit off all the time, she wasn't quite herself and then one particular night in April we heard her screaming from the bedroom next door. Raring temperature, couldn't go near her, couldn't touch her, wondering what the hell was wrong. Got her into hospital, we were in the hospital five weeks before they actually diagnosed her. Luckily the doctor at the time he'd had it as a child and recognised the symptoms and we went over to the rheumatology hospital and gave her 40mg of steroids, a blood transfusion and the day after, she got up and started moving around. But five weeks previous to that nothing, couldn't move, couldn't do anything. It's quite scary in the beginning because at one point she actually went so limp in my arms I thought she was going to die; it was horrible. And I think it's the unknown so for me if they could come up with something that, you know, the diagnosis that's earlier rather than; we were told it's normally twelve to thirteen weeks so we were lucky and the fact that, but still that, that five to six weeks of, of nothingness, of not knowing, people coming at you saying, "We think it's Kawasaki syndrome, we think it's this, we think it's that." It's not what we think it's what, right we need an answer. Please somebody tell me why the hell is my child in so much pain and you can't do anything. You're not doing anything to make her better. So for me that, that was the hardest part, the very beginning whereas the sort of like, it takes so long to diagnose.
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.
OK so when a young person sees a consultant – now they, in paediatric rheumatology, so if they're under sixteen and in some areas under eighteen they would go to a paediatric rheumatologist and they're…not as many of those in the country as adult rheumatologists. So the experience may differ depending on whether you go to your paediatric centre or an adult centre and a paediatric rheumatologist… I'll speak from my own experiences that they will, certainly in paediatric rheumatology, they may be seen either by the consultant or by one of the trainees but certainly in paediatrics they will always see the consultant eventually within that consultation. A history will be taken and that's when questions will be asked to work out the cause of arthritis or to diagnose arthritis and find out what, how it's affecting the young person etc and then they will be physically examined and that's examining the joints but examining the rest of the body – listening to heart and checking the tummy and feeling for any glands, all of which tie into working out which type of arthritis it is and getting the diagnosis correct at the end. So sitting down talking and getting to know the young person, finding out how the symptoms etc are affecting them, taking their medications they're on, what they've tried, if they've tried any complimentary medicines; if there's a family history of any arthritis etc and then examination. And as I say usually at the end, if there is arthritis the doctor will be able to say there is arthritis, they won't be able to say what sort of arthritis and that's…and further tests will be necessary .