Condition · 8 min read · 21 Jun 2021
Learn about Chronic Widespread Pain and how to manage your pain and improve your quality of life.
Between 5-10% of young people with chronic widespread pain will report having an experience of ongoing pain.
Chronic Widespread Pain Syndrome can affect many aspects of young lives, but there is help.
Chronic widespread pain can have a significant impact upon a young person’s capacity to study, sleep, complete tasks at school or work, engage in physical activity, as well as upon their mental health. Many things take more mental and physical energy than usual to complete. Support is key to helping youth focus their energy into achieving tasks that are most important to them.
It’s important to know, that while pain is challenging, you can live well with pain and with support from health professionals with expertise in pain management.
Myths about chronic widespread pain and why they are unhelpful
Young people are often challenged by the invisibility of their pain and the lack of understanding, empathy or even acknowledgement from their friends, peers and family. Having tools to communicate feelings of persistent/chronic pain is essential to help young people connect with their community and help their peers, friends and family understand and support them.
Before we look at tools for communication, let’s take a look at some common myths around pain. Myths can develop from well-intentioned people trying to help but not fully understanding pain.
The trouble with myths are not only are they untrue, but they are also unhelpful for people with pain. Understanding what is true and what is false about CWP is a critical first step to positively and effectively managing your pain.
Myths can be disheartening, and can leave young people feeling deflated and fearful about their future lives. Myths can also influence the mindset of young people, so they feel less in control of their health. Knowing the facts help to put young people in control of their health.
Busting the myths of Chronic Widespread Pain
Myths about Chronic Widespread Pain are common and can be unhelpful. The opposite of these myths is true.
Myth: The pain means that something is damaged
Fact: With CWP, there is often no evidence of physical damage found on investigation. When there is a known problem (such as arthritis, Sever’s disease etc), the pain is often worse than the disease would explain. This is because many factors can influence a pain experience, not just tissue damage, infection or inflammation.
Myth: It’s all in your head
Fact: If you are experiencing chronic widespread pain, it’s important for others to know that your pain is not imagined, pain is always real. With pain, our brain, spine and nerves are all involved in protection. This protection helps when pain is acute. It’s usually very unhelpful in the longer term where signals trigger more easily and can cause over-protection that stops you from doing the things that give your life meaning.
Myth: You should be tested again, they’ve missed something
Fact: Once evidence for an underlying disease has been ruled out, there’s no good reason to keep on testing. If a new problem has started, or there’s a significant new event (such as a motor vehicle accident), ask your doctor if any other investigation is needed.
Myth: It’s dangerous to exercise if there is pain
Fact: Gentle activity or “pacing” is important when you are experiencing chronic pain: this means not doing too much or too little. Doing movement, activity and exercise in small doses every day, and slowly increasing this with time is usually most helpful.
Myth: You have to rest if you feel any pain
Fact: Rest for a short time can be useful if there is a significant pain flare. A little rest (hours) can help in the short term. What is most helpful in the longer term is finding different ways to move safely, and keep doing the things that you love.
Myth: Just take some medicine
Fact: Simple pain medicines, such as paracetamol and ibuprofen, are not very useful in CWP. Other approaches may be more effective, including learning how to safely move, exercise, sustain postures, and the use breathing exercises, gentle movement, yoga, heat packs, or distraction.
Myth: You shouldn’t go to school if you have pain
Fact: Doing your usual activities (including school/work/study) is really important. You may need to change some of the ways you do these activities, for example taking short rest breaks during the day. Ask your health professional to help you sort out different ways to help you keep doing the things that matter to you.
About Chronic Widespread Pain
How do you diagnose Chronic Widespread Pain?
- CWP is usually a clinical diagnosis made by detailed clinical history and examination. Your GP or health professional can make the diagnosis.
- At present, there is no laboratory test that can diagnose CWP or rule it out.
- Repeated blood testing is strongly discouraged.
- Blood tests or some x-rays or other scans might be needed, but it depends on what your symptoms are.
- You may be referred to a specialist, often a paediatric rheumatologist or a pain management team.
- Many young people consult multiple health care providers seeking answers. Finding a balanced approach to this is key. Having one trusted central clinician who can co-ordinate the approach is important. This helps to avoid unnecessary testing, procedures, visits to Emergency Departments, medical trauma and related anxiety. All of this needs to be balanced against the need for assessment and investigation. In addition, if new symptoms or deterioration occurs then a reassessment may occur.
Once you get a diagnosis of Chronic Widespread Pain, what next?
- Many people are shocked to get a diagnosis of chronic pain. They may be worried something serious has been missed and believe if it was found and treated, their pain would stop.
- There is no “right” way to cope with the diagnosis of CWP. We are all different and young people have many different ways of coping. Allow yourself some time to cope with the diagnosis and take advice from your health team to find ways to live well while you work out which treatments and care works for you.
What treatments can help with Chronic Widespread Pain?
Working with a health care practitioner to build your toolbox of pain management strategies can help you to regain confidence, improve your mobility and valued life activities, your functional capacity, and help you manage pain especially if you feel tense, fearful and unsure about what to do.
Treatment aims to help put you in control of your health, to calm the pain flares and cycles and find ways to manage even when pain is present. Being actively involved in managing your CWP, in partnership with your healthcare team (this is known as self-management), is the key.
Treatments include both non-pharmacologic (e.g. exercise, activity, diet, sleep hygiene) and consider pharmacologic (medicines) strategies, if and when appropriate.
The most recommended treatment currently being offered is to do with lifestyle habits. Treatments include pacing movement, exercise, and activities, cognitive (mind-body therapies), improving sleep hygiene and a balanced diet.
Making Sense of CWP
- Making sense of pain means getting an acceptable and meaningful explanation that helps you understand why pain persists, and what you can do to manage your pain and keep doing the things that give your life meaning. Understanding pain puts you in the driver’s seat and helps you to educate your friends and family too.
- A good understanding about chronic widespread pain, what causes it, different triggers for you, and how stress, tiredness, anxiety and anger may contribute to pain, all helps you to be kind to yourself and develop a helpful management plan.
- Identifying stressors (such as those related to school, work, study, friendship or family) and managing the feelings that come from these stresses and worries can help reduce pain and improve quality of life.
- Understanding that pain does not always mean damage to your body tissues is important and that pacing movements and activities when you experience pain usually helps you to stay at work/study/school.
- Understanding that even when you experience pain, you can gradually return to valued activities.
- Trying to focus on 1 or 2 small achievable goals. For example, improving your sleep routine is a great start to better managing your pain. Developing a regular sleep time and routine will help to reduce your pain and may improve your mood.
- Improved sleep means less pain and allows you to undertake more carefully paced activity and exercise. So, rather than using a single approach (like medications), you have coupled up a few simple strategies (sleep, medications and paced activity). This approach can make a big difference to your quality of life over time. Using a low dose anti-depressant may help regulate your sleep: discuss this with your doctor, as depending on your age, the evidence on risks and benefits for the use of medicines does vary.
- A healthy, balanced diet provides your body with the nutrients it needs to work at its best! What a healthy balanced diet looks like for each person differs. It’s important to discuss with your doctor or a dietician before you cut out any foods to ensure you are meeting your overall requirements of nutrients.
“Using more than one strategy is usually most helpful in managing CWP”
Building your toolbox of pain management strategies for Chronic Widespread Pain
Some of the most effective options for managing CWP pain are simple, low risk and non-medicine based. The approach is informed by current best evidence practice – that means what has been shown to be safe and effective.
Making sense of pain: understanding the factors that are linked to your pain
Understanding the factors (i.e. physical, lifestyle or psychological) linked to your body’s overprotective response is important as it helps you and your health team to target the best way to manage the pain, as well as recover and prevent pain from recurring.
Keep moving in a relaxed manner, stay active and stay at work / school
Over-protecting your body is not your fault: this is completely understandable and a normal response to an abnormal situation. The issue is that overprotection can become an unhelpful habit that gets in the way of your recovery. Whether your pain is recent, or you have had pain for a long time, moving in a paced way and building up activities gradually, is more likely to help you recover. See our getting back to what you want to do module.
Avoid prolonged bed rest (longer than 24 hours)!
Bed rest usually leads to poorer outcomes and slower recovery. Stay at school, study and work if possible, even if you require short-term changes in your study or work habits. Keep engaged in day to day activities and maintain your social connectivity as this leads to better outcomes e.g. encourages normalcy, gets you moving, distracted and experiencing happy things.
Good quality sleep
Sleep is powerful natural pain ‘medicine’. Getting more than 6-7 hours sleep a night is important and helps reduce the risk of many health conditions. Sleeping well helps to boost immune function, lift mood and reduce tissue sensitivity. Regular sleep times, reducing screen time and avoiding alcohol /caffeine before bed can improve sleep quality. Relaxation techniques and regular exercise may be helpful for improving your sleep: check out the sleep and pain module.Staying positive and protect your mental health
Young adults experience pain in various ways. We know that it can be really hard to stay positive. Experiencing low mood, anxiety, fear and many other emotions is very common when you have pain and can be helped with the right support and care. Remember that pain is rarely life threatening, it usually gets better and you are not alone. Getting help early is important. You might also find the approaching pain module useful. If you feel distressed and overwhelmed with the pain, please seek medical advice early.
Planning your school, work and social activities
Planning ahead helps you think about ways you can better manage challenging situations or pain flares. Possibly only going for part of the function rather than all will help manage your energy levels and pain levels.
Keeping socially engaged
As well as staying at school or work if possible, helps you continue doing things you enjoy and helps you to recover better and sooner.
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.
Do medications help in managing CWP?
The aim of medications is to help young people stay mobile and involved in the things they love to do. Like many other painful conditions, medications can play a role in the management of young people with CWPS, but should never be recommended as a standalone treatment.
This is important to know, as high quality evidence for the use of medicines in the management of CWP for young people, is lacking.
For some young people, the benefit obtained from any of the above prescribed medications is outweighed by their risks and side effects. For example, opioids (e.g. morphine) are not recommended for pain management of young people with CWP. Always ask your doctor about the risks and benefits of any prescribed medicines.
The medications recommended for use in CWP are designed to calm down the nervous system, and reduce widespread tissue hypersensitivity. You can read more about these in our medicines and pain module, which outlines the different medicines, their pros and cons, and how they might fit into your overall management.
Prescribed medications include:
- Simple analgesics: (paracetamol and non-steroidal anti-inflammatory drugs [NSAIDs]).
- Anti-convulsants: gabapentin, pregabalin. These are often used in chronic pain, and may help with pain sensitivity as well as anxiety for some people.
- Anti-depressants (in low dose): Amitriptyline, Nortriptyline. These are not usually used in high enough doses to impact mood. Low doses may help pain sensitivity, and aid sleep quality.
- Serotonin-noradrenaline reuptake inhibitors: Duloxetine, Venlafaxine. These are also antidepressants, which can help both pain sensitivity and mood. They are usually suggested if anxiety or depression are a significant problem. If a person with CWP has already tried others medicines without success, they may wish to consider these agents.
- Opioids: drugs in this family (e.g. morphine, oxycodone, tapentadol, tramadol) are generally not useful in chronic pain. These should only ever be used for shorter periods, with the help of a doctor.
- Melatonin to assist with sleep onset.
If your pain is severe and distressing, please seek health professional help.
“Medications can play a role in the management of young people with CWP, but should never recommended as a standalone treatment.”
Want more information?
For more information visit Cochrane Plain Language Summaries and download the consumer’s guide to managing CWP.
Related management modules
References
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