From a point of arthritis in children and young people it is a painful swelling of a joint. And that is due to inflammation of the lining of the joint and then causing increased fluid within the joint and that's what causes swelling and it's painful and slightly warm and albeit not very red and if it was very red you'd worry about it being infected. But that's really the simple definition of what arthritis is. Obviously there are then different types of arthritis and I think the most important issue with young people with arthritis is that it is a different arthritis to what adults get. And the main form of inflammatory arthritis or arthritis due to inflammation in young people under the age of sixteen is called juvenile idiopathic arthritis, of which there are seven types. But that is the main umbrella term for arthritis affecting young people. Then once you're over sixteen, then yes you can get the more adult rheumatoid arthritis - ankylosing spondylitis. They are different diseases to juvenile idiopathic arthritis which is the commonest inflammatory arthritis in young people.
…the definition of arthritis in children has been an ongoing issue for many years and they do like to keep changing it. The very old definition was called Still’s disease defined by Frederick Stills way, way back and then came juvenile chronic arthritis and the most recent internationally approved term is juvenile idiopathic arthritis. Idiopathic being a term that only doctors use and means we don't know what causes it. And hopefully one day with research and everything we will be able to drop that term because we will know what causes it. But in an attempt to help doctors and researchers to work out the cause we need a… all the professionals to agree on a term and so that we're all talking about the same thing. Rheumatoid arthritis is the adult disease; you cannot get rheumatoid arthritis under the age of sixteen. It is an adult disease that primarily affects the sort of forty year old plus although younger, younger adults can get rheumatoid arthritis. But JIA is the main internationally approved term. There is a confusion in that the Americans do call, still call it sometimes juvenile rheumatoid arthritis but because of this confusion with the adult internationally there's a move to JIA - juvenile idiopathic arthritis.
Arthritis means inflammation of the lining of a joint which causes it to look swollen. The lining or 'synovium' protects the joint from impact (caused by running, for example) and helps the joint to move easily. The inflammation causes the joint to look swollen and may also affect the tendons and ligaments. It can lead to damage on the surface of a joint (the cartilage) and the bone itself.
When a person’s joints become inflamed, painful and stiff it is referred to as a “flare up”. The joint may also be warm to touch.
Does arthritis affect young people?
Around 15,000 children and adolescents have arthritis in the UK (NHS Choices 2015). Young people will normally be diagnosed with Juvenile Idiopathic Arthritis (or JIA).
Juvenile means that the arthritis began before the person was 16 years old.
Idiopathic means that the cause of the condition is unknown.
Arthritis means that one or more of the joints are inflamed (swollen, painful, stiff and difficult to move normally).
There are several different types of JIA. The most common is Oligoarthritis JIA which affects less than 5 joints, usually one or both knees and is the type of arthritis most likely to go away over time. The rarest form is systemic-onset JIA which can cause rashes, fever, tiredness, loss of appetite and weight loss and can affect internal organs such as the spleen or liver, which can become enlarged, and very occasionally the covering of the heart can become inflamed (pericarditis) (Arthritis Research UK 2015).
Cat is a full-time medical student. She is white British.
I think it's very confusing because I didn't really know what I had. I've always, it's always been referred to as rheumatoid arthritis, that's what I have, that's what I'm treated for, in all my hospital notes that's what I'm told. If anyone asks me if I have any medical problems I say I've got rheumatoid arthritis. But in my initial clinic letter on my diagnosis it is written as polyarticular rheumatoid factor positive JIA and since doing a research project at Uni actually I've found that the official terminology is any inflammatory arthritis diagnosed before the age of sixteen that lasts more than six weeks is officially juvenile idiopathic arthritis so I think there is a lot of confusion and actually I think it probably be more useful if everything's stuck to. But then I don't think you'd find an adult who wants to be, their disease to be referred to as juvenile because it makes it sound like something that just children get.
JIA is the most common type of arthritis diagnosed in young people under the age of 16. Over the age of 16 years, particularly in young adulthood, other types of arthritis may be diagnosed such as ankylosing spondylitis and adult rheumatoid arthritis.
Because the names for the different kinds of arthritis have changed over time we found that people used different words to describe the type of arthritis they had. We also found that some people did not know what kind of arthritis they had and simply referred to themselves as having “chronic” (meaning long-term) or “juvenile” arthritis. It is important to know the correct type of arthritis as the outlook for the different types of arthritis is not the same.
Even though there are many different types of arthritis, we found that young people often shared similar experiences.
It is common for people with arthritis to have a problem in just one joint at first. For example, young people we interviewed talked about a groin strain, a sore ankle, a stiff and swollen wrist or knee, an achy neck, or a very painful toe.
Cat is a full-time medical student. She is white British.
I remember about my shoulder and I remember how it would be painful one day and not the next and I remember when it was really bad I'd have, I couldn't get, I couldn't lift my arm up on its own so I'd have to use my other arm to lift it up for me and that's the only way I could do it. Even then it was painful but I physically couldn’t do it by itself so at school I remember once I was trying to put my jumper on or take it off or something and my friend laughed at me because I had to do this and obviously I didn't have a diagnosis or any idea what was going on at the time so fair enough really but I remember that. And I remember the fact that because one day I'd be fine and the next day it would be painful, my sports teacher thought I was just trying to get out of sports so I'd be playing netball I think one day and my shoulder started to really hurt. So I said to the teacher, "Would you mind if I just sit out for five minutes?" I wasn't even asking to stop completely, I just said I just need because my arm's really hurting and she told me I couldn't and that, that she thought I was just trying to get out of it basically and I had to carry on playing and I actually loved sport at school so that was a shame.
Other people we talked to had a problem in several joints. Sometimes the same type of joint would be affected. Charlotte X had aches and pains in both of her ankles. Kerrie thought that she had broken her fingers because her pain and the swelling was so severe. Leigh had pain in his knees and ankles. Jenna had pain in her feet and fingers.
Often people noticed a problem during sport or other activities such as walking to school or writing in an exam. Some said the problems started after an accident such as falling down the stairs. Several people said that they woke up in the morning with the symptoms. This confused them because they were not in pain before they went to bed and had no swelling or stiffness. Sometimes pain and stiffness caused by inflammation improved after exercise and got worse after rest.
None of the young people we talked to suspected that they had arthritis at first. A few people saw a doctor early on because they were worried about pain or swelling. Often people dismissed the early symptoms and put them down to something else such as a sporting injury or repetitive strain (such as texting too much). The symptoms would then progress to other parts of the body. Some people talked about the pain getting worse and new joints being affected. Others talked about pain and swelling vanishing from one joint and appearing in a new joint. Stiffness in the joints first thing in the morning could be a problem for some.
Charlotte is a student at college studying a BTEC in Forensic Sciences. She is white British.
I started, it was my thumbs and I just, I thought oh maybe I’ve been sleeping with like my thumbs like that, and thought oh okay right I’ll just, it’s probably just something like that or I was doing my GCSE’s, it’s probably just where I’ve been writing so much. And just passed it off as one of those things, and then it was always in the morning, and then it would kind of ease off throughout the, as like the day went on. And then it started it spread to like the rest of my hands and my wrists and my feet and then again I just put it down to other things.
I was boxing at the time so I just put it down to that. And then I was doing trampolining in PE and I hurt, I thought I’d hurt it doing that like when I had landed, so I just passed it off as other things. And then when my feet started hurting I thought it was my school shoes. So I went and got insoles and things and then when it started in my neck and back I passed it off as the bed or it was just the pillow or the way I was sleeping funny.
But yeah and then but I never told anyone. In the mornings I couldn’t walk down the stairs, I couldn’t open the milk on the cereal.
Some young people said that symptoms built up gradually whereas for others the onset is sudden. Sometimes swelling rather than pain was the first symptom. Ryan’s symptoms began with a swollen knee after playing football. Anna woke up one morning with a swollen wrist. For these people pain was something that developed later on in the day or several days later.
For some young people the early symptoms didn’t interfere with their daily life at all. For others, the early symptoms interfered with everyday tasks like opening a milk bottle, holding a saucepan or walking to school. Several of the people we spoke to talked about losing their independence and relying on parents to help with personal things like getting showered and dressed or getting on and off the toilet.
Charlotte is a Quality Team Member. She is married and plans to have children in the future. She is white British.
I’m always very tired, got lots of weakness in my arms so I struggle to hold a saucepan, open a tin, things like that, simple things which people don’t think any different of. And struggle to get out of bed sometimes in the mornings, it’s quite a challenge just to get out of bed. Getting dressed, showering, need help a lot of the time with that. Luckily I’ve got a nice devoted husband who does it for me now [laughs]. My joints get very stiff, they flare up, often have to take off my wedding ring because it just blows up and it just hurts. Yeah just general pain.
Pain could get so bad that young people could not get out of bed. Some people felt like they had a cold or flu before they noticed a problem with their joints. Others felt tired, looked pale and had low energy levels.
Tom is an A-Level student preparing for university. He lives with his parents. He is white British.
To start with I wasn’t really sure what was going on. I remember that it was in the summer and I was quite ill. Like I don’t really usually get ill often but I was like dizzy and a bit nauseous sometimes, and I had to have a few days off school. And then that was right before the end of term. And at the end of term my school does an activities week where we get to choose activities and then go and have fun for a week. And I’d chosen to go camping, and so I thought I’ll be okay to go camping. I was improving, I was not perfect but I was a lot better than I was. So I went to this activities week and well everything went downhill a bit. My knees swelled up massively, I mean they were huge, they were like balloons, I could barely walk so it was not fun at all. I didn’t really get to do much, I had to drop out of a lot of the activities. I still enjoyed being with my friends but if you were away from home, without your parents, with people that you don’t know that well it’s kind of a scary thing to have to do, especially when you’re 14.
Age at interview:
Age at diagnosis:
Kerrie is a self-employed baker. She is white British.
So my name is Kerrie. I’m twenty five years old. I was diagnosed with rheumatoid arthritis just over two years ago now, when I was twenty two. I suppose my symptoms all kind of came about very suddenly overnight almost. I suffered with what I thought was a flu-type virus for a little while. Made several visits to the doctors, had lots of different tests, that kind of thing.
And nothing ever really came back. It was just one of those things that, oh, been told to go away. It was a virus, you know, that I would get better eventually but I just tended to struggle on really. I was finding it difficult at work, at the time.
The initial symptoms really for me were swollen fingers. That was the first thing that I kind of noticed as such. It was almost as if I’d kind of broken my fingers but couldn’t remember doing it and again it kind of happened over night. I woke up one morning with swollen fingers, painful to move and this general flu like feeling, again which I thought was just a cold really. And then it slowly progressed into my wrists, the pain, again this stiffness, feeling of kind of not really being able to move in the morning and, you know, painkillers weren’t really helping. It was it was a weird sort of a pain to describe.
And things progressed into my joints. I started feeling very tired all the time. I was getting pain when I was walking and the soles of my feet, my hands were very stiff, wrists and also, like I say this general sort of flu like feeling. It didn’t go away.
A few of the people we spoke to had systemic JIA. Systemic JIA often starts with a high fevers, weight-loss, rashes and tiredness. Before diagnosis, it is sometimes mistaken for another condition such as meningitis or cancer. The people we spoke to with systemic JIA were diagnosed when they were very young. Some were diagnosed as babies and do not remember what it was like. Jessica’s mum said that Jessica “wasn’t quite herself” for a while. One night she woke up upset and had a “raring temperature.”
She spent five weeks in hospital before she was diagnosed. Some of the people we spoke to hurt their joints when playing outside and later developed temperatures and visible rashes. Jazmin did not learn to stand or walk when she was a baby due to her arthritis and doctors originally thought she had cancer. David Y was in severe pain and could not be touched.
Kyrun lives at home with his mum, stepdad and two brothers. He is a college student. He is white British.
It was a rough patch getting diagnosed ‘cos I was so active like played football for county and the way I got diagnosed was I picked up a groin strain from playing a county match and I kept limping after about two weeks solid after, which it shouldn’t happen with groin strain.
So Mum said go straight to the Duty Doctors, like the emergency doctors and then they said, well I’ve had meningitis so I had to be rushed in with like all that meningitis treatment which was for about three days and none of like the signs didn’t improve. So they done lots more other tests from MRI scans to X-rays to the, I think, I’ve forgot what it’s called but it’s like the put dye into the veins and see what’s going on with like veins and arteries and stuff.
And then about two, three weeks later, I was still in hospital, but a particular doctor said I was just faking and I just didn’t want to go to school. So they pretty much forced me to go back home. And then we got a phone call about three days later saying come back in straightaway because there’s some signs on, that the blood tests says that you’ve got some infection, and it can be quite dangerous.
So I got rushed back in. They cleared the infection and then they done some more like back up tests to see if everything was okay. And then they picked up that I have Systemic Arthritis.
Wow. Well thank you for that. That was very eloquent. So could you tell me what kind of symptoms you experience?
Well I had, because I had the groin strain as well, so it was more organly, and like my organs felt so tired, my lungs were like, I was really like short of breathless, but it was also to do with all the weakness in my muscles and around my joints. Which they just thought, because of the groin strain I’ve done like too much and it needs like time to catch up.
And I also had a really like visible rash, which they say is like similar to the meningitis rash but it’s, if you look closely it’s completely different. Hot and cold fevers. Really really raised temperatures. And that’s really about it. Yeah. Due to symptoms and stuff.
David Z and Sonia have ankylosing spondylitis. Both described a gradual increase of pain and stiffness over several years before they were diagnosed. David Z started to get pain and stiffness in his neck when he was 18. He then developed pain and stiffness at the bottom of his spine and his hands and feet. His joints became very stiff early in the mornings and his pain got worse over time.
At the time of the interview Sonia was a full-time university student. She is white British.
I’m 22, and I’ve got ankylosing spondylitis, and I was diagnosed with that about two years ago. I wasn’t really sure what triggered it off, but I remember when I was 11 years old and in my last year of primary school, I was playing basketball in PE and I jumped down and as I landed my left leg just buckled underneath me and I didn’t think anything of it, I thought I probably like ricked my ankle or something.
But I got home and I couldn’t sit down, I couldn’t lie down, I couldn’t stand, everything that I did it was so painful. And I was crying my eyes out and my parents didn’t know what to do with me. I didn’t know where to stand, what to do with myself. And then they took me to casualty and they had no idea what was wrong. They x-rayed me and said there’s no breaks, they said there’s no sprain, we don’t know what’s going on, we’re going to give you some ibuprofen, and it kept coming back like over the years I’d wake up one morning and the pain would be there, or I’d be I don’t know doing a sit up or something, and I’d just hear a click and that was it, it was just, I knew then that for the next week or so I’d be in a lot of pain.
And for a while I thought it was growing pains because when I did get it felt like one leg was longer than the other, and I was like walking with a limp because I just couldn’t put both legs on the same level, it just didn’t work.
And I was getting pains in like my buttocks, like all down the back of my legs and in my lower back, and I went to a Chiropractor in the end and the Chiropractor had no idea what it was, but she’d like poke around and click my back and my neck and everything and it was handy cos I always had like neck aches and things.
So and it got really bad when I was about 16. And I remember going into school and one of my friends going, “Why are you walking like a penguin?” And she said it right out loud in the middle of the corridor and I was so embarrassed. I hadn’t realised until then like how I must have looked when I was walking. And it got worse and worse until the point where I was, I wouldn’t, I refused to take part in things in PE, ‘cos I thought I’d just end up with a flare or something.
And I came to university and it was okay in my first year, and not, it wasn’t that bad. And then like there were some mornings when like I couldn’t get out of bed and I had to roll off the bed and crawl around on the floor, but it would get better during the day and in the end I would more or less forget about it. And then it wasn’t until my second year where I had my exams that things started getting really, really bad, and I couldn’t sleep at night. I was crawling around on my hands and knees a lot, to the point where you know other people were noticing…and because I was not sleeping at night I would fall asleep during the day when I was supposed to be revising.
I couldn’t breathe properly, so my ribs felt like, I can’t really describe it, it was like they couldn’t open to let me breathe deeply, and when I tried to it was like they were on fire or something. And I couldn’t twist, so I couldn’t turn to pick things up, I couldn’t, I couldn’t like wipe my own bum. It was just so painful just to move the tiniest of movements. I couldn’t sit down, I couldn’t stand up, I couldn’t lie down, it was like back to the beginning all over again but a hundred times worse.
Charlotte Y and Chantelle have psoriatic JIA. They both had swollen and painful joints but also had an itchy and irritating scalp. Bradley has enthesitis-related JIA. This type of JIA affects were tendons attach to bones. Bradley’s pain and swelling moved from one joint to another. He described how he had a really achy elbow which disappeared for a few days. A month later his ankle swelled up and he was limping. This went away then his groin swelled up and he was limping even worse.
As symptoms spread around the body or become more intense people began to seek help (see ‘Routes to diagnosis’).
Last reviewed August 2015.
Last updated August 2015.
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