Living with pain can be difficult. It can affect the things you do, it can also impact the way you feel and think, as well as your relationships with friends and family.
Have a look at the examples below of how pain can affect young people. Use the blank spaces to write other ways in which pain has affected your life.
For a printable version of this worksheet, click here.
Functional abdominal pain is a type of chronic pain, it is relatively common and reported in up to 18% of young people. It is a condition where children and young adults experience frequent periods of abdominal (tummy) pain over an extended period. Chronic means lasting more than a few weeks.
Functional means that there is no physical blockage, infection or inflammation causing the pain. Nevertheless, the pain is real and can be distressing for both children and adults. Like all pain, abdominal pain can affect your thoughts, feelings, and behaviour in many situations.
Children with functional abdominal pain often experience pain in the stomach or bowel area. They usually do not have any other signs of illness, such as a temperature, weight loss, or blood in their poo. Sometimes the pain may be associated with episodes of diarrhoea and constipation, or vomiting, but this is not the cause of the pain.
Functional abdominal pain is sometimes associated with other symptoms such as headaches, limb pain, and sleep disturbances.
The exact cause of functional abdominal pain is largely unknown, although the condition has been studied a lot by researchers and medical professionals. Many practitioners agree that biological and psychological factors interact to maintain the pain; it is possible that pain is due to overly sensitive nerves in the gut. The gut has a massive network of nerves which send signals to the brain when we are hungry, full, or ill. This is called The Gut-Brain Axis. Sometimes these messages can be influenced by things outside the gut and misinterpreted by the brain. For example, it is common for children and young adults to not feel hungry on the morning of an exam. Others may need to vomit, or visit the toilet frequently.
The symptoms are real and are especially difficult to manage in stressful or anxiety-provoking situations, but it is important to remember that they are not caused by a physical disease.
Pain is a common symptom experienced by children and young people with CFS. Therefore, it’s important to know how pain works, and what we can do to make it feel better.
The sensation of pain is affected by both physical and psychological processes. Signals from nerve endings in the nervous system passes through a neural ‘gate’ in the spinal cord before being passed to the brain. The ‘gate’ is what determines how much pain we feel.
The more open the gate is, the more pain we feel.
Things that open the Pain Gate – causing pain:
Things that close the Pain Gate – reducing pain:
Things that open the Pain Gate – causing pain:
Things that close the Pain Gate – reducing pain:
Things that open the Pain Gate – causing pain:
Things that close the Pain Gate – reducing pain:
Things that open the Pain Gate – causing pain:
Things that close the Pain Gate – reducing pain:
Things that open the Pain Gate – causing pain:
Things that close the Pain Gate – reducing pain:
CFS can create a cycle in which we feel trapped. The first step to breaking out of the cycle is to understand what it is! By understanding the CFS cycle, we can start to see that there are several things that can be done to help manage your CFS.
As you can see, CFS can affect you in many ways. It affects your thoughts, feelings, body and behaviour.
It is also important to remember that everyone experiences different symptoms of CFS. Therefore, your cycle may include some extra steps if you are also managing other symptoms on top of fatigue.
Some people who suffer with long-term fatigue choose to do less activity. This makes sense; however, it can result in you missing out on important and fun activities. However, we know that missing out can negatively impact your mood. Some people try to stay very active on days they feel better. Again, this approach makes sense but can be counterproductive. You may push yourself too hard and end up suffering, resulting in exhaustion and low mood. This is referred to as a boom-and-bust pattern:
Pacing is a skill which enables you to consistently carry out activities without causing excessive tiredness or inactivity. Pacing is the middle ground between doing nothing and doing too much. Over time you may notice that pacing enables you to do more.
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For a printable version of this worksheet, click here.
When we experience abdominal pain, we can often stop doing things that we used to enjoy. However, avoiding things often makes us feel worse in the long-term.
For a printable version of this worksheet, click here.
Having Chronic Fatigue Syndrome can cause you to stop taking part in activities you enjoy. Goal setting is about working out what you would like to be able to do, and working towards achieving it. Goal setting is a powerful way of improving your quality of life and sense of control. It is important that goals are meaningful to you and feel good.
A goal is something that you are motivated to work towards and achieve. When you are working on activity levels, it is important to set goals that can help to both motivate you, as well as direct your efforts and energy.
To create a specific goal it must answer the 6 ‘W’s.
For example:
‘I want to use Progressive Muscle Relaxation to help manage my pain’ as a SMART goal would be:
‘I want to use Progressive Muscle Relaxation 30 minutes, everyday at home for one month, to reduce my symptom severity’.
Measurable goals make it easier to stay on track to meeting your goals. Questions like ‘how much’, or ‘how many’, or ‘how will I tell if I met my goal’ is a good way to determine what to measure. For example, practicing Progressive Muscle Relaxation for 30 minutes everyday is quantifiable and measurable. You can track your progress and see results.
When you are coping with abdominal pain you need to have goals which are realistic and reasonable. It is easy to get ahead of yourself. Sometimes people fall into the trap of getting overwhelmed by goals which seem impossible. Make a realistic goal by breaking into smaller goals.
An important factor in achieving your goals is seeing the progress you have made. Set a time limit to complete your goal. For example, practice progressive muscle relaxation for 30 minutes each day, for a month before you tackle another goal. Write down your progress, seeing progress can motivate and encourage you.
Mood can be greatly affected by what we do, when we do it, and with whom. Keep track of what you do each day and make sure you are spending your time doing enough things that give you a sense of:
Being mindful of these 3 things when goal setting may help you to set meaningful SMART goals. Doing more also allows less time for negative and unhelpful thoughts and overthinking, which will have a positive effect on mood.
It can be difficult to see a child/teenager in pain. However, as an adult there are ways in which you can help improve their ability to cope with pain:
Reassurance. Although we do not know the exact organic cause of functional abdominal pain, your doctor will have completed tests to check that there are no other concerns. It is important to reassure your child that although their symptoms of pain are real (and you understand that they are not making them up), they are not dangerous.
Record. When you first notice pain, you may like to keep a pain diary. This may be helpful to learn about triggers and factors that make the pain better/worse. Please ask your doctor for a pain diary if you plan to see them again, and they think that this would be helpful.
Distract and reduce focus on pain. It can be difficult to know how to respond to a child/ young adult who is in pain. Often, the natural urge is to pay attention to signs that the young person may be in pain and to reassure them. It is important to avoid making the child/ young person worry or become anxious, as they may focus on their pain more. Although it is challenging as a parent, it is important to minimise attention on the pain, for example, by not asking how pain is. When pain starts, you may find it more beneficial to help the young person focus on something other than the pain, perhaps by engaging them in something they enjoy.
Encourage normal activities. It is important to not stop the young person doing the things they enjoy due to a fear of pain. You can reinforce ‘well behaviour’ (e.g. doing enjoyable activities) and give them confidence to resume their hobbies and interests, despite pain.
Provide encouragement. Children and young people will feel more confident in their ability to cope with their pain with your support and confidence. Your role is to provide positive encouragement that they can cope with and manage their pain.
Support. Pain may affect your child/teenager’s ability to complete homework, coursework, and revision. Offering support with studies may relieve some of the stress, in turn decreasing the chance of reoccurring pains. You may like to provide this information to their school/college so they can provide extra support where necessary.
Muscle tension is commonly associated with stress and anxiety, it is the body’s natural response to potentially dangerous situations. Even when there is no danger, our bodies can still respond in the same way. You may not always realise that your muscles are tense, it may be as subtle as your jaw clenching, or as obvious as your shoulders feeling tight and hunched. PGR is a deep relaxation technique which is based upon the simple practice of tensing one muscle group at a time . This is followed by a relaxation phase with release of tension. This is very useful before bedtime.
During deep breathing your blood is oxygenated, triggering the release of endorphins, whilst also decreasing the release of stress hormones, and slowing down your heart rate.
Worry Trees are helpful in reducing levels of anxiety surrounding both hypothetical situations and current problems.
Help yourself to feel more relaxed by thinking about things that make you feel calm and rested. For example, picturing your favourite place. This can be either independent, or you can take a guided visualisation approach. A guided visual imagery relaxation task has been provided in this pack.
A powerful stress reduction and relaxation tool, that can be applied at any time, in any location.
This is a useful technique for remaining grounded in the present, to alleviate symptoms of stress and anxiety.
These are phrases that you can say to yourself that are supportive. For example “Just because it has happened before it does not mean it will happen again”.
Parent and caregiver resource guide for children/young adults with ME/CFS or Long COVID:
1.Review by children's services :
Your GP can refer you for assessment to a children's doctor if you are concerned about your child's symptoms.
2.Mental Health support
Click link for support by SPACE wellbeing
