This pack has been produced with by Frimley Health NHS Trust in partnership with Healthier Together This pack is aimed at children and young people who have Chronic Fatigue Syndrome (CFS), a long-term condition with lots of different symptoms, most commonly extreme tiredness that can’t be explained by an underlying medical condition.
Fatigue is when you feel so tired that you can’t do all the things that you used to, for example, playing sports. With CFS often sleeping or relaxing does not make you feel refreshed, meaning you always feel tired. Some children and young people describe CFS as having ‘brain fog’ or running on ‘low battery power’.
When you are unwell often your body puts all its energy into fighting the virus that initially made you unwell. But then sometimes after you’ve got better you can still feel tired. Even though there is no underlying cause of this fatigue, it is still real. If this fatigue lasts for a very long time and becomes CFS, you might develop other symptoms, but remember everyone is different!
Feeling tired and not being able to do all the activities you want to can be very stressful and it is perfectly normal to feel upset or angry.
Living with Chronic Fatigue Syndrome can often mean you experience lots of other changes in your body and mind. It important that you can notice your symptoms of chronic fatigue syndrome so we can help try and minimise as many symptoms as possible.
Here is a list of potential symptoms of CFS, alongside the tiredness. Please tick the ones you are experiencing and add more in the blank spaces (if applicable).
For a printable version of this worksheet, click here.
Living with fatigue 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 fatigue can affect young people. Use the blank spaces to write other ways in which pain has affected your life.
Children and young people often need a lot of sleep, but they also have erratic sleeping and waking times. When you have CFS these times can become even more erratic! It is not uncommon for children with CFS to sleep for longer than 12 hours, but you can still wake up feeling tired and not refreshed!
Children need different amounts of sleep depending on their age:
It is important to remember that a child with CFS may need more than this!
When you have CFS it is particularly important to make sure you are getting good quality sleep, rather than just trying to sleep for longer! Some advantages of good quality sleep are:
It is great to chat through what you and your children think makes for good quality sleep, to see the worksheet for this, click here.
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.
The more closed the gate is, the less pain we feel.
Factors
Things that open the Pain Gate – causing pain
Things that close the Pain Gate – reducing pain
Physical
Tensing muscles.
Stretching.
Applying a heat pad on the abdomen.
Relaxation exercises
Activity/Behaviour
Too much or too little activity.
Focusing attention on the pain.
Pacing activity level (see pacing worksheet on page 9).
Participating in enjoyable activities.
Doing things that are in line with your values, despite your pain.
Distraction – thinking about and doing something different.
Emotions/Feelings
Stress and tension.
Feeling sad.
Feeling anxious.
Feeling angry.
Feeling calm and relaxed.
Being more able to cope with strong emotions
Thoughts
Thinking about how you cannot control or stop the pain.
Thinking about how the pain has affected your life.
Thinking helpful thoughts, such as reminding yourself of different ways you can manage your pain.
Distraction – thinking about, and doing, something different.
Social
Isolation – being on your own.
Avoiding spending time with family and friends because of your pain.
Spending time with people who care about you.
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.
Remember:
Consider areas that you want to change or improve.
Try to set goals you can achieve using determination. Do not underestimate your ability!
Have faith in yourself - your thoughts can affect how you physically feel!
Write down your goals. It will help you to see what you have achieved.
Do not panic if you do not achieve your goal. Think about why. Perhaps you need to add in smaller step to achieve the long term goal?
Reward yourself when you achieve a goal!
Areas To Think About When Planning Future Goals, For Reducing The Impact Of CFS
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.
The first step is to think about things you have stopped doing/are doing less/are avoiding because of your abdominal pain. Make a note below of things you are avoiding because of how you are feeling.
Things around the home
Things at work or school
Hobbies and Interests
Social Activities with Friends and Family:
Anything else?
Once you have filled in Section 1, the next step is to plan how easy it would be to start doing some of the avoided activities again. It may seem overwhelming in the beginning, however, it is much easier if you break the process down into smaller steps. Create a ladder (hierarchy) of things you avoid with the ones you are most anxious about at the top, and the ones that bother you less at the bottom. Try to include a good mix of the things you wrote down in Section 1. Start to tackle your fears and your abdominal pain by starting at the bottom of the ladder and gradually working your way through each step. Before completing each task, write down what you think will happen, and follow this up by writing down what happened after task completion. Hopefully you will start to see that it is mostly not as bad as you think it is going to be.
Situation
Difficulty – 0 to 10
Example: playing rugby again
10 (most difficult)
Example: texting a friend
0 (least difficult)
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.
Specific: clearly state what you would like to happen
Measurable: will you be able to say it was achieved?
Achievable: are you able to complete the task independently?
Realistic: are you going to do it?
Timely: think whether it is ‘the right time’ to do this. Set yourself a realistic time limit to achieve this goal.
Specific
To create a specific goal it must answer the 6 ‘W’s.
WHO is this goal for/who is involved in it?
WHAT is it that needs to be accomplished?
WHERE should this goal take place?
WHEN will this goal be completed, or how long will it take?
WHICH things or requirements, and constraints, need to be identified?
WHY does this goal need to be accomplished? What is its purpose?
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
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.
Realistic
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.
Timely
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.
Doing more
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.
Progressive Muscle Relaxation (PMR)
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.
Deep Breathing
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 Tree
Worry Trees are helpful in reducing levels of anxiety surrounding both hypothetical situations and current problems.
Visualisation
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.
Safe Place Visualisation
A powerful stress reduction and relaxation tool, that can be applied at any time, in any location.
Self-Soothing Strategies
This is a useful technique for remaining grounded in the present, to alleviate symptoms of stress and anxiety.
Developing Coping-Self Talk
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:
