There are more than 6000 young people in Australia with Juvenile Arthritis, which is about 1-4 in every 1000 people.
Juvenile Arthritis can affect many aspects of young lives – and there is help.
Pain in Juvenile Arthritis can negatively impact a young person’s capacity to study, sleep, complete tasks at work or school, and engage in physical activity, as well as their mental health. It’s important to know, that while pain is challenging, you can live well with pain in Juvenile Arthritis and you need the right health professionals for support.
The focus is on helping young people to live a full and happy life. It is important to let your doctors know about the pain and to develop a management plan for the pain. Pain in Juvenile Arthritis will go up and down with a flare and knowing how to predict, and assess this and have strategies to approach the pain helps better management and less impact on daily living.
Young people often struggle with the invisibility of their pain and the lack of understanding, empathy or even acknowledgement from their friends, peers and family. Many young people don’t feel believed or can even feel that others think that they are “faking it”. It can get young people down or make them feel very alone.
A big issue here is that there are myths about Juvenile Arthritis pain. These myths can come from health professionals, family, friends, teachers, and the broader community.
The trouble with myths is not only are they untrue, but they are also unhelpful for people with pain. Understanding what is true and what is false about Juvenile Arthritis is a critical first step to positively and effectively managing your Juvenile Arthritis pain.
Myths can be disheartening and can leave young people feeling deflated and fearful about how their future lives. Myths can also influence the mindset of young people so they do not feel in control of their health.
Myths about juvenile arthritis are common and can be unhelpful. The opposite of these myths is true.
Myth: All pain in Juvenile Arthritis needs to be rested and protected
Fact: Joints get healthier and stronger with graduated movement and exercise. Good sleep, a healthy diet, and relaxed movement and exercise are helpful for joint pain
Myth: It is dangerous to exercise, bend or lift with joint pain – kids with arthritis can’t play sport
Fact: A range of postures are safe for joints. Being too sedentary isn’t good for joint pain. Choosing the right exercise or activity can help joints stay healthy and keep muscles strong
Myth: Ongoing joint pain means the joints are becoming damaged
Fact: Ongoing joint pain is related to hyper-sensitivity of the tissues and structures (joints, muscles and connective tissues) to load and movement. This can occur with an inflammatory flare-up, but if well-treated does not necessarily mean more damage. Pain is often related to many factors, and most of these can be modified to lessen the impact
Myth: Ongoing joint pain means I should push through my pain
Fact: Pain flare-ups are common. When they involve inflammation, pushing through doesn’t work. You may need to check with your doctor or rheumatologist to see if your medicines are right or need a change in dose. You also need to manage your fatigue through paced movement and exercise. During flare-ups you may need to have more rest breaks
Myth: There is nothing you can do for joint pain
Fact: There are lots of different things that can be done for joint pain. These are outlined in the text below.
Myth: Joint pain will get worse with time
Fact: With the right care, joint pain does not necessarily get worse over time. Getting the right care means you can limit the impact of JIA and maintain a better quality of life
Juvenile Arthritis is the most common form of inflammatory arthritis in young people. The full name is Juvenile Idiopathic Arthritis (JIA) and there are seven different types of JIA.
JIA can affect any joint in a child or young person’s body. Most commonly the large joints of knees, ankles, wrists, and hips are affected along with the smaller joints in the hands and feet. Some young people will develop inflammation in their eyes called uveitis and young people with JIA need to get regular eye checks to screen for this.
JIA is an auto-immune disease, which means that your body sees your own healthy tissue as something foreign and potentially a threat or danger. The immune system then targets the lining of the joints, causing inflammation associated with joint pain and swelling, with the potential for joint and bone damage.
Because JIA is a systemic disease, it can also affect other body systems, such as your eyes and in one of the types of JIA (Systemic Onset JIA) other body systems may be affected and fever and rash are common.
The cause of JIA is unknown, however, there are contributory risk factors, including genetic factors such as a family history of autoimmune disease, and environmental factors.
Early diagnosis and appropriate treatment can relieve symptoms, prevent or delay joint damage and ensure that people with JIA can continue to live an active life.
There are a number of symptoms that may suggest JIA. These vary from person to person and over the course of the disease.
The most common symptoms of JIA include:
If you suspect that you may have JIA, we recommend you consult your doctor to discuss the potential for further investigations to diagnose JIA and guide your management.
Your doctor may arrange blood tests and possibly x-rays and other imaging. Based on these results, you may be referred to a specialist called a rheumatologist who will help guide you regarding further JIA management.
Your rheumatologist will ask you about your symptoms, perform a thorough examination and request further investigations in order to make decisions about your diagnosis, management and the role of medications. They may also recommend visits to other health professionals (such as a rheumatology nurse, physiotherapist, psychologist, occupational therapist, and podiatrist).
Both pharmacological (medication) and non-pharmacological (not medication or surgery) management approaches and self-management (including managing fatigue, joint health, stretching and exercising) are important.
There is good evidence that learning about your JIA and working with your health team to develop a self-management plan including aerobic exercise (exercise that makes you ‘huff and puff’), muscle strengthening and stretching exercises that suit you, means better outcomes. You might find the movement and pain or getting back to what you want to do modules very beneficial in helping you better manage your JIA.
You will need specific medications that slow the disease process:
These medicines are known as disease-modifying anti-rheumatic drugs (DMARDs). These include conventional synthetic DMARDs (such as methotrexate), biologic DMARDs and targeted synthetic DMARDs (also known as small molecules). DMARDs are the mainstay of treatment for JIA and are most effective when initiated early in the disease course.
DMARDs control joint inflammation so that your symptoms of joint pain, swelling and stiffness improve. They also improve your functional ability and help prevent joint damage.
There are some side effects and these are well documented, so you can discuss them with your doctor and refer to the Australian Rheumatology Association Medicine Information Sheets.
Paracetamol and anti-inflammatory medications can improve joint pain and swelling, however, these medicines do not slow the disease process.
There may be times when some of your symptoms are particularly bad – your joints may swell more, feel more painful and may be warm to the touch. This is known as a ‘flare’. There may be several reasons for this, including:
It is important that you see your doctor or rheumatologist as early as possible. Your rheumatologist may need to adjust or change your medication(s). It is important to take your medications regularly as directed, even when you feel well!
Often the medicines are trying to prevent long-term damage and need to be taken even when you do not feel like the arthritis is active. If you have concerns or want to change your medicines, you should discuss them with your doctor before stopping them.
When you have pain from Juvenile Arthritis it is still important to try and have a normal life. It is important to try and gain a sense of control and not let pain rule your life.
Firstly, make sure you are taking your usual medications to treat your arthritis.
If the pain is stopping you from being able to do normal things in your life, then you should contact your rheumatology team or health care team for advice and pain management.
What you can do to help manage the pain:
Simple pain relief like paracetamol or a dose of anti-inflammatory.
Rest if you are tired, but it is important not to stop moving.
Gentle movement; some people will find working with a physiotherapist will be helpful.
Heat is often really helpful such as a hot pack, a warm bath or shower. Some people find cold packs or ice good too. Keeping warm with warm clothes or warm packs can be helpful.
Vary your posture and how you are sitting or resting to make sure you are not putting too much pressure on sore joints.
Distraction with things that keep your brain busy – music, reading, talking to a friend, watching a movie, playing a game.
Other things that can help are deep slow breathing, massage, and guided imagery. Relaxation techniques take some practice, but they can help children and young people feel more in control and are an important tool to manage pain.
Getting enough sleep and trying to get good quality sleep is important.
A detailed assessment including a history and clinical examination are important. Sometimes your treating doctor will arrange for blood tests to look at inflammation markers for example, but this is not always necessary. Always take your doctor’s advice and ask about the risks and benefits of any tests you need and what would happen if you did nothing.
Scans (x-rays or imaging) are not recommended for most young people with Juvenile Arthritis pain. Ask your health professional to explain to you if there is a need for a specific test and what would happen if you did not have that test.
The first step is a detailed assessment by your rheumatologist or treating health professional. Depending on your age, this may be a paediatric rheumatologist.
The exception is when ‘specific’ pathology is suspected, for example, when there is a new traumatic injury (such as a fall), or when a fracture is suspected. If you have noticed new swelling or colour changes in your joints, let your treating health professional know.
Here is some advice on Juvenile Arthritis pain
You and your health professional can work together to develop a management plan. Knowing what to ask your health professional is important.
Ask your healthcare professional what the best evidence is for managing your Juvenile Arthritis pain (benefits and risks, costs and what happens if you do nothing).
Download our recommended care fact sheet (PDF) which includes 5 important questions you need to ask your health professional about your care. These 5 questions can help to make sure you end up with the right amount of care — not too much and not too little. To find out more about the initiative, visit Choosing Wisely.
The following approach guides you to some of the simple steps you can take to help improve your function and reduce your pain.
The approach is informed by current best evidence practice. Some of the most effective options are simple, low risk and non-medicine based.
People’s experience of pain is varied and it can be hard to stay positive. Experiencing low mood, anxiety, fear and many other emotions is very common when you have joint pain from Juvenile Arthritis. Remember that the pain is not life threatening, it usually gets better and you are not alone – there is help! You might also find the approaching pain module useful.
Whether your pain is recent or you have had pain for a long time, moving in a paced way (taking the middle road and doing little bits often), and building up gradually over time, usually helps you manage your symptoms, pain and fatigue better. Over-protecting the joints can delay recovery.
Remember, it is normal to experience some increased pain in joints and sometimes muscles as you begin to move and exercise. Try not to be afraid of the pain or fear re-injury. Fear of pain and movement usually causes us to tense up, worry and over protect ourselves, which can make pain worse and recovery slow.
One of the best ways to manage these fears is for you to gradually build up your movement, exercise and activities over time. Gentle relaxed movement, breathing exercises and physical activity help to “desensitise” your system, manage your fatigue and prevent the persistence or worsening of your pain. As you keep moving, maintaining your usual activities and adopting a paced approach to activity, exercise and work, the pain will usually settle.
Daily exercise helps to boost your own inbuilt pain control systems. This can be a very effective way of improving your function and reducing your pain. You don’t have to get hot and sweaty: walking and yoga are also good forms of activity.
As this usually leads to poorer outcomes and slower recovery if prolonged. Stay at school/work/study if possible even if you require short-term changes in your habits; staying at school/work/study leads to better health outcomes for you in the longer term. Your health professional can guide you regarding any modifications that are needed to support you.
Sleep is ‘medicine’: engaging in healthy sleep habits such as regular sleep times, reducing screen time and avoiding alcohol/caffeine before bed can improve sleep quality. Getting more than 6-7 hours of sleep a night is important and helps reduce the risk of many health conditions. The amount of hours you need will depend on how old you are. If you are having trouble sleeping, read more in the sleep and pain module. Relaxation techniques and regular exercise may be helpful for improving your sleep: check out the mindfulness and pain and sleep and pain modules.
If this fails to help, then specific medicines may be useful in the short term to help you get restorative sleep, however, this needs careful discussion with your GP or specialist.
If your Juvenile Arthritis pain isn’t improving, then it is important to contact your rheumatology team or have a review appointment with your health care appointment.
In a small number of young people with Juvenile Arthritis, their pain can persist even when their joint disease is relatively well controlled, or at least the pain is different to the usual joint pain or out of proportion.
Pain can last longer than a usual flare and be harder to get under control. Importantly, this is usually NOT because there is arthritis active and flared in the joint, so the management is different.
Factors that predict ongoing joint pain in Juvenile Arthritis include:
These things can combine to make us more sensitive and over-protective of our bodies so that we can get stuck in a vicious cycle of pain and disability.
For persistent joint pain, the key to effectively managing persistent joint pain is working closely with a skilled health team who encourage and support you to:
This process takes time and is often really hard to do when you are in pain. Health professionals can work with you to help you better understand your Juvenile Arthritis pain and assist you with ways to manage your pain, relax your body and regain confidence, mobility and function and do the things in life that matter to you.
You can also check out our pain management modules to get more help. Your GP or health professional may be able to guide you in your selection of the modules if you are unsure which ones to do.
Pain can mean we become over-protective, stopping valued life activities: see our making sense of your pain module for help
Looking back at your progress can help, as you can see how gradually you are regaining activities that you value. Sustaining your efforts brings rewards!
Be reassured that it is normal to have some pain as you move and improve.
Relaxed movement and daily exercise help to engage your own body (endogenous) pain control systems helping to improve your quality of life.
Healthy lifestyle habits like exercise, nutrition, and quality sleep help reduce the risk of joint pain persisting.
Keeping socially engaged as well as staying at school/study or work if possible, helps you manage and recover from flare ups sooner.
Low mood, anxiety and fear are common when you have joint pain and can be helped with the right support and care. Check out our approaching pain module for help.
If your pain is severe and distressing, please seek health professional help. The medical teams are there to help and support you. They have your best interest at heart.
For more information visit Cochrane Plain Language Summaries and download the consumer’s guide to managing pain in Juvenile Arthritis.
