What is arthritis?
Arthritis is inflammation of the lining of a joint which causes it to look swollen. The lining, or ‘synovium’, protects the joint from impact (for example, caused by running) 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 (JIA): juvenile means that the arthritis began before the person was 16 years old, idiopathic means that the cause of the condition is unknown, and 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 fewer 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. Very occasionally the covering of the heart can also become inflamed (pericarditis).
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.
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, while 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.
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.
Pain could get so bad that some 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.
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 “raging 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.
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).