Arthritis (young people)
What is arthritis and what are the early symptoms
A paediatric rheumatologist explains what arthritis is.
A paediatric rheumatologist explains what arthritis is.
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 2018). 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).
Cat's condition has always been referred to as rheumatoid arthritis. Her initial clinic letter says that she has polyarticular rheumatoid factor positive JIA. She discovered what this meant when she was at university.
Cat's condition has always been referred to as rheumatoid arthritis. Her initial clinic letter says that she has polyarticular rheumatoid factor positive JIA. She discovered what this meant when she was at university.
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.
Early symptoms
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's arthritis started in her shoulder. She asked to take a break from sport at school but her teacher would not let her.
Cat's arthritis started in her shoulder. She asked to take a break from sport at school but her teacher would not let her.
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 were 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 Z's symptoms began in her thumbs but spread to different parts of her body. She initially put her pain down to other things like writing too much and boxing.
Charlotte Z's symptoms began in her thumbs but spread to different parts of her body. She initially put her pain down to other things like writing too much and boxing.
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 Y is always tired, weak and in pain. She struggles to do everyday things like showering and opening a tin.
Charlotte Y is always tired, weak and in pain. She struggles to do everyday things like showering and opening a tin.
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 felt dizzy and sick before his joints became swollen. He tried to keep going but found he had to start dropping out of activities.
Tom felt dizzy and sick before his joints became swollen. He tried to keep going but found he had to start dropping out of activities.
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.
Kerrie thought she had the flu before her joints started to hurt. Her arthritis progressed from her fingers to the rest of her body.
Kerrie thought she had the flu before her joints started to hurt. Her arthritis progressed from her fingers to the rest of her body.
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 was treated for meningitis but was later told he had systemic JIA. He said he felt 'breathless, feverish and tired'.
Kyrun was treated for meningitis but was later told he had systemic JIA. He said he felt 'breathless, feverish and tired'.
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.
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: November 2018.
Last updated: November 2018.
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