Flare-up plans

What is a flare-up?

A flare-up is an increase in our ME/CFS symptoms, which can include fatigue, generalised pain and brain fog, as well as many others.

If the flare-up coincides with an onset of a new/different symptom, it may be helpful to speak to our team or your GP to ensure that it is ME/CFS related.

A man at a desk with his eyes closed, holding his spectacles in one hand and pinching the bridge of his nose with the other

We know that most people with ME/CFS are likely to experience flare-ups in their condition. You may be able to identify why this has occurred, for instance after a bout of illness, stress and poor sleep, or, you may not be able to identify any particular trigger.

Identifying triggers may help you prevent similar things in the future when it is a controllable event, such as staying-up late to watch a TV programme. However, most events aren’t controllable and life can (frequently!) throw us challenges we didn’t choose or want.

Thankfully, the most important factor in recovering from a flare-up is how we manage it in the present moment. Overtime, we may begin to see that we do have a choice in this moment, no matter what our thoughts may be telling us.

If we experience a flare-up, it is understandable that we may feel anxious, despair, or a whole host of similar emotions. After all, who would want it to happen? However understandable and automatic these instinctive and aversive feelings may be, they often only get us more stuck, just as if we were trying to fight our way out of quick sand.

If we can learn to see these aversive thoughts and feelings early, through the practise of mindfulness, we can create a ‘choice point’ where we intentionally use alternative skills, such as self-compassion, unhooking from thoughts, pacing and soothe activities. In doing so, we sow the seeds for the flare-up to flare-down, when it is ready, without forcing or fighting.

We often liken these scenarios to being like a glass of muddy water. The mud (representing our fatigue, pain, stress and aversive thoughts) clouds the clear water (our wellbeing). If we grab at the mud we keep the water agitated and the mud in suspension. In reality, if we wanted to separate the two, we would watch, wait and let the process take care of its self. The mud would eventually sink to the bottom and the clear water would rise to the top, without any effort.

The challenge of flare-ups is that at the point where we need our self-compassion, mindfulness and creative thinking skills the most, they often feel the hardest. This too is totally normal and a common experience, but it doesn’t mean there is no help here either.

If we plan for a flare-up while we are relatively well, our thinking is likely to be more creative and helpful. Making a plan, whether that be a simple list, a letter to our self (as if we were writing to a friend) or even drawings will mean that some of this creative thinking is done ahead of time and we simply need to commit to those helpful action points, as best we can.

In time and with continued practise, the parts of our brains that are creative, compassionate and are mindfully aware, start to physically grow, thicken and develop a better blood supply. Self-compassion and mindfulness are like weight-lifting exercises for the brain! Science has proven that we can use our minds to structurally re-shape our brains and nervous system through a process known as neuroplasticity.

Once we learn that we can live well, stay aligned with our values (even if the recipe has to be a bit different at the moment), we are not our fatigue & pain and that we have a reliable set of ever strengthening skills that can help us stay-centred and live well, we no longer have to fear flare-ups. We may even ‘see them as opportunities to learn and grow’ as many mindfulness teachers and students have found over time.

  • Managing a healthy diet during a Flare-Up

    It can sometimes be difficult to always maintain healthy eating habits when experiencing a flare-up.

    Some energy saving ways to help eat a healthy and balanced diet could include:

    • Making food when energy levels are appropriate, e.g. when possible, cooking a larger batch of food and then freezing it for use when energy levels are depleted.
    • Ready meals can be efficient when fatigue or exhaustion makes it hard to prepare or cook food from scratch.
    • If you find your energy levels are higher in the morning, a slow cooker or pressure cooker meal prepared in the morning and then left to cook during the day can be useful.
    • Any food is better than no food, but fruit instead of a high-sugar snack would be better.
    • Planning any food lists in advance may help if you struggle with cognitive impairment when shopping and help get the task finished quicker, enabling you to rest.
    • Using a stool to sit and prepare, or do the washing up, can help preserve energy.

    Frozen vegetables store for longer and can cook quickly. Many varieties can be microwaved.

    Frozen fruit for smoothies; a great way to get in vitamins and nutrients. Also helpful if your appetite is low.

    • A great source of protein and fibre are tinned pulses and lentils, such as chickpeas, black beans and kidney beans. These count towards your 5 a day and are easily added to curries, soups, and stews.
    • Healthy grazing throughout the day can help with energy levels- think fruit, seeds, nuts etc
    • Pre-washed or cut items such as vegetables or fruit saves energy and time spent preparing.
  • A Poem for your Tool Box

    The Box Of Special Things

    All is well 

    With you

    My dear

    Come sit 

    And smile

    And linger here

    This box

    Of calming

    Delightful objects

    Will make you

    Think of

    Happy subjects

    Lift the lid

    What could 

    Be there?

    An expensive

    Perfume

    Origami squares

    A tome of

    Lovely words

    That rhyme

    Some beads

    To pray with

    If so inclined

    A book

    Of really 

    Corny jokes

    A picture

    Of best

    Beloved folk

    Some special

    Tea bags

    Beautifully packeted

    A cute little bear

    All dressed up

    And jacketed

    Nice pencils

    With quality paper

    To draw on

    A box with

    An ornate 

    Little mouth organ

    A rhythm

    To be made

    On a little drum

    A sheet with notes

    For a song

    To be sung

    A favourite 

    Wooden

    Jigsaw puzzle

    A soft

    And cuddly

    Blanket to nuzzle

    A writing book

    With pen 

    And pencil

    A palette 

    With paint,

    Brush and stencil

    A box 

    Of magic 

    Playing cards

    Wool to knit 

    Ballad up 

    In yards

    Soft coloured balls

    For your hands

    To squeeze

    A lovely

    Painted fan

    For breeze

    A disc 

    That holds

    A lovely voice

    A box 

    With candies

    Of your own choice

    If make up

    And glamour

    Is your thing

    Then a mirror 

    With lipstick

    Nail varnish and bling

    One 

    Or some

    Or all of these

    Or other things

    It's what 

    You please

    Whatever

    Your age

    Status or gender

    It's your box 

    You have

    The tender

    All is well

    With you

    My dear

    In this moment

    Now.

    Here.


    Written by P.C, a former Fatigue Service patient

The Royal Free Hospital

Pond Street
London
NW3 2QG

Patient and GP enquiries
020 7317 7529

Email
rfh-tr.fatigueservice@nhs.net