There isn’t an agreed definition of pacing, I would define it as flexible way of structuring your day in a way that supports both function and wellbeing.  Pacing essentially means breaking down tasks and activities into manageable chunks with consideration of the different types of activities, including enough short rest breaks in your day and flexibly adjusting things each day/throughout the day as needed.  Pacing needs consideration of different activity types, for example what activities are more physical/cognitive/emotional and how they impact you.  It needs a number of things which I will touch on in this blog, especially awareness, compassion, noticing what’s present in our experience within our body (what’s embodied), flexibility, knowing our values & what’s most meaningful, and exploration.

Pacing is helpful for us all and more so when living with persistent pain and/or other health conditions.  A quick note here, pacing for persistent pain is different to pacing for ME/CFS and long covid (where post exertional malaise is present), there are similarities but its a different.  This blog is focusing on pacing when living with persistent pain.

The way I suggest exploring pacing with the people I work with includes discussing what pacing is and is not, there are some examples of what pacing isn’t below, perhaps the commonest misconception is that it means doing less.  I also encourage an understanding of nervous system regulation through a cognitive understanding and an embodied understanding (body based).  Part of this includes developing a toolbox of strategies and practices that support compassionate awareness & nervous system regulation, both I see as key aspects of pacing.   I often use the window of tolerance model by Dan Siegel, polyvagal theory by Stephen Porges and the three circles model from compassion focused therapy by Paul Gilbert as part of exploring understanding nervous system regulation in an embodied way.  I explore what’s meaningful with people and what their values are for a number of reasons, including because it helps people make choices about which activities to prioritise and engage in.

As already mentioned pacing can be misunderstood (and often is), here are some of the things pacing is not:

• A rigid/restrictive daily plan
• Doing less
• It’s not another thing to be ‘done’
• Only being able to do certain things a certain way
• Only doing things that don’t cause a pain flare

Pacing is not a rigid daily plan, it’s a way of flexibly adjusting our day as we move through it.  It is helpful for us to bring a non-judgemental compassionate awareness to how we are relating to our world (both the internal and the external), which is changing moment by moment.  From a place of being the compassionate observer we can take conscious wise action, where it’s possible to meet what’s needed (part of pacing).  A quick note here, there isn’t really any division between our internal world and the external world (not something we are exploring in this blog).

Avoiding doing things that tend to increase pain because of worry of a pain flare is not pacing and doing this over time this increases threat in systems, decreases our tolerance levels for the activity being avoided and often also for different activities.  It increases sympathetic nervous system activation (fight-flight), essentially there is more threat in systems and a sense of safety is lacking or has significantly decreased (pain is part of our threat system).  Tolerance levels decrease for a number of reasons, mainly due to an increase in sensitivity levels to different stimuli and a decrease in fitness levels.  Stimuli that becomes overreacted to (sensitivity) often includes sitting and standing still, moving a certain way or when systems are super sensitive all movements can trigger a protection response, doing certain activities and even thinking about doing a particular activity.  A quick note here about cause and pain, rarely does one thing cause pain or an increase in it, it’s complex and there are many variables we don’t see.

Another thing that pacing doesn’t mean is ignoring pain and pushing on regardless, this tends to ramp up the protection responses and sensitises systems more.  This is the opposite of avoiding activities, it is sometimes referred to as the boom-bust cycle (not a term I use unless someone is using it and relates to it in a helpful way).  Both avoidance and regularly exceeding tolerance levels by too much are both problematic.  A quick note here, choosing not to do something that doesn’t come from a place of threat may well not be avoidance.  Doing a lot more than tolerance levels tends to result in having to do less for a few days, or even longer, it increases sensitivity and the threat in systems.  Doing a lot less also increases sensitivity and threat in systems, along with tending to decrease strength and fitness as well.  However, doing a little more with a sense of safety, understanding your nervous system and using practices that help regulate your nervous system can help to gently nudge tolerance levels over time.

Pacing is not another thing to be ‘done’, it’s a way of flexibility adjusting to how we are and what feels needed throughout our day.  The way I see it is that pacing becomes a way of being that supports both effective function and our wellbeing.  For example, compassionately relating to ourselves and others, taking regular pauses in the day (these are needed for everyone, whether living with pain or not) and having nurturing daily practices that are part of a way of being and living, these could be seen as helpful habits.

(Image: my Grandad when he was 90 doing a meaningful activity – time in nature with one of his grandchildren – made possible by having something to sit on & only walking a very short distance)

How Can Pacing Help With Persistent Pain?

Pacing encourages people to work around their normal tolerance levels, this means knowing your baseline for different activities and where your soft limit/soft edge/soft boundary is.  This means knowing what level of different activities is generally ok (the baseline) and also having an embodied knowing (an awareness from what’s present in your body related to your whole experience).  Knowing your soft boundary includes knowing the whispers from your body that indicate you are near this point and indicate that taking a rest break or changing tasks would be helpful.  I have found it helpful over the years, with myself and working with others, to combine the cognitive understanding of a variable baseline with an embodied knowing of the signs we are near our soft boundary or soft limit.  One reason combining these is helpful is because our baselines are always changing and are impacted by many factors/variables, for example lack of stress and increased stress, and our body will reflect dysregulation consistently – we can come to deeply know it’s whispers when we listen compassionately.

Pacing can help in many ways, here are some of the ways it can help with managing and changing pain:

•  People living with pain can often more consistently do what needs to be done and what’s meaningful to them by breaking things down into more manageable chunks of activity interspaced with rest
• As well as taking short rest breaks changing to a different activity, for example changing more of a physical task for more of a cognitive one can be helpful
• With a pain flare-up things may need to be broken down into smaller amounts with more rest breaks to help systems to calm down
• Pacing can help people to engage more often and more fully in what’s meaningful along with using the strategies & practices that help them to manage pain
• It can help to modulate pain, for example taking a break and doing a breath practice helps to regulate the nervous system – down regulating the threat system and can potentially modulate pain
• Pacing can help with nervous system regulation and can help retrain the nervous system.  This is part of both managing and changing pain
• It can help to decrease sensitivity to different stimuli, increase tolerance & fitness over time along with other things

Pacing Tips

It can be helpful to have an understanding of why pain doesn’t necessarily equal harm, knowing that we are safe to do things even with pain.  Having an understanding around this is one thing that can help people to pace activities and create a sense of safety.

As already mentioned listening to the body and integrating enough rest, along with having daily practices that help to regulate the nervous system is important.  Many things can help to regulate the nervous system and help with pacing when living with pain, for example, breath practices, meditation, gentle yoga or other mindful movement, singing/humming, time in nature.  Exercise and including this in pacing is important, finding what’s helpful for you needs exploration, there is a link to an exercise and persistent pain blog I wrote in the resources at the end of this blog.

It is important to explore what is restful for you and the sort of rest that certain things offer, there are a number of different forms of rest which I am not going to go into in this blog.  The picture below is child’s pose, this is often referred to as a pose of rest in yoga and is known to be calming, grounding, restful and restorative.  It is important to remember just because something is said to be calming and restful it doesn’t mean it will be for you, this highlights again the importance of embodied awareness (what is showing up in the body).  Understanding what is showing up in your body and how your nervous system is responding is part of developing an embodied awareness.  I encourage people who attend my 8 week Creating A Healing Path workshops for people with pain/fatigue/anxiety to do this.  Even though we didn’t specifically cover pacing people reported pacing better and being more able to engage in what was meaningful to them, you can find the link for more information on these workshops at the end of this blog.

As already mentioned pacing is not rigid, it needs flexibility as everything is changing moment by moment.  Our internal and external environments are constantly changing, our tolerance levels and nervous system state are in a constant state of flux (with everything else), it another reason why having an embodied awareness matters.  We need a cognitive understanding combined with an embodied awareness of what practices and strategies are helpful when, along with the different ways that we can adapt them.  Without a body based understanding (embodied awareness) we will be running on cognitive understanding alone and missing out on what our nervous system is communicating and the wisdom of our body.

Here is a common example of how our tolerance levels and nervous system state are always changing, imagine that you haven’t been sleeping well for a few nights and you keep on doing things in the usual way.  There are some common impacts of this, including: increased fatigue, increased stress, making poorer food choices, getting hooked in unhelpful thoughts, and increased pain which may also stop you sleeping (one of the many cycles in pain).   Lack of sleep in itself sensitises systems, increases threat system activation, increases the perception of pain, our baselines and soft boundary change, and it impacts our concentration and focus.  So, rather than keeping doing things in the usual way we need to explore what’s helpful and adapt what we are doing.  This might look like breaking things down into smaller chunks than usual, having more rest breaks during the day, including more meditation, or having a few minutes outside a few times during the day, and doing less exercise than normal (the body responds differently to exercise with lack of sleep and it responds differently with persistent pain too).  Making these adjustments like these are examples of pacing.

When there is something that’s important for you to do and you know it’s over your tolerance levels one way to manage this is to engage in what gives more safety messages to your body via your nervous system for a few days before the event, during it if possible, and again for a few days after.    Factoring in more rest afterwards and even before the activity/day can be helpful.

Remember what is helpful on one day, or in one moment won’t be exactly the same as what’s needed in another.  This is why we need an embodied awareness (body awareness) and a toolkit of practices and strategies that we have explored and used regularly.  This helps us to select what feels most helpful and then notice how our nervous system and body are responding, adapting what we are doing from this as needed.

Here’s a list of some more examples that can be part of pacing with a flare-up of pain:

Modulate your usual activities, like with the example above

Use additional helpful strategies from your toolkit if needed, a few examples are mentioned above

Do what helps to regulate your nervous system more frequently during the day

  Practice self-compassion, an example would be reframing your language (the self-critic can get loud when things during a pain flare-up)

For some activities where you are doing less than you normally would due to a flare-up remember to ensure that you have a plan to build things back up gradually as things start to settle (something which can be forgotten).

Some questions you can ask yourself:

•  Do you pace your activities in a way that’s supportive for your wellbeing
• Do you make adjustments to your day for factors like lack of sleep and increased stress?
• Do you know your baselines for activities and do you the know the signs of your soft limit/soft edge/soft boundary?
• Do you do what’s important to you or do you avoid doing it out of fear of making the pain worse?
• Do you push on regardless?
•  Do you incorporate the helpful strategies/practices into your day or just when the pain is worse?
• Do you know what helps give you a sense of safety with doing different things?
• What daily practices/strategies support you?

In Summary

This blog has covered what I see as the basic principles of pacing when living with persistent pain, these are:

• Breaking things down into manageable chunks
• Understanding different activities (physical/cognitive/emotional) and your tolerance levels for them
• Integrating enough rest (with consideration of different forms of rest)
• Changing activities for a break is helpful (alongside having rest breaks)
• Having a cognitive understanding and an embodied awareness (body based understanding/knowing)
• Knowing the whispers from your body that you are near or at your soft limit/soft edge/soft boundary
• Using the practices and strategies that support you and help to regulate your nervous system and manage pain
• Remember there isn’t a right or wrong with pacing and it needs flexibility.  There isn’t a perfect way to pace!
• We need to be able to flexibly adjust during the day, this needs an embodied compassionate awareness & ongoing practice

No-one paces the same way, no-one walks in the same shoes, yet we create similar footprints.  This means that we can learn from each other and use the principles of things like pacing and different practices and adapt them to meet what’s needed.  There are common tools/practices/strategies that can help regulate the nervous system, manage and modulate pain, support wellbeing and effective function, these need adjusting for each person.  This is something I explore with people as part of 1:1 work and it is part of my 8 week Creating A Healing Path workshop series.  With regular practice people understand the many ways they can adapt practices to meet their needs and as part of exploration and regular practice they create their own toolkit of resources to manage and change pain.

Learning how to pace and manage pain is a journey of exploration that takes many directions, there isn’t a destination/an end point with pacing, instead pacing supports pain management and engaging with what matters each day.  I would say that understanding nervous system regulation, noticing how we are relating to ourselves and practicing embodiment (noticing what’s present in our body) are all key parts of pacing.

I have written this blog from my understanding of working as a pain specialist physiotherapist & wellness coach as well as lived experience of persistent pain, ME/CFS & PoTS.  If you would like to learn more about pacing and/or would like help with management of persistent pain in general get in touch to book your free 15 minute call to see how I can help.

If you would like to find out more about the 8 week online Creating A Healing Path workshop series for people with any condition associated with pain/fatigue/anxiety click the link below:

https://unityphysio.co.uk/services/ahealingpath/

Pacing Resources

There are a number of resources specifically for pacing for persistent pain and related topics, here are a few:

There is a little about nervous system regulation in part one of my healing blog https://unityphysio.co.uk/healing-within-connectedness-love-part-one/

This is a blog that I wrote on exercising with persistent pain and can help with pacing of exercise/physical activities https://unityphysio.co.uk/exercising-with-persistent-pain/

A blog written about pacing in the context of neuropathic pain http://livingwellpain.net/persistent-pain-pacing

A short pacing video https://www.paintoolkit.org/pain-tools

Q&A: Pacing & Chronic Illness http://natashalipman.com/qa-pacing-chronic-lllness-resting-pain-fatigue/

(Images in this blog: icon with heart in hands and man walking are authors own, childs pose image is from Shutterstock by Rasterbird, time for change image is from Shutterstock by Trueffelpix)

The post What is Pacing & How Can it Help with Persistent/Chronic Pain? appeared first on Unity Physiotherapy and Wellbeing.

Aligning mind, body & heart

Terms like aligning mind, body and heart can seem a bit abstract so I’m going to define this in the way I see it before we explore connectedness more.  To me aligning mind, body and heart means living in a loving and embodied way aligned with our purpose and what’s meaningful, living from a place of love, compassion & connectedness.  By living in a loving and embodied way I mean noticing how, for example, our thoughts and feelings, are showing up in the body in a compassionate and non-judgemental way.  Part of healing is awakening our senses and being able to fully be in the present moment in an embodied and loving way.  We can’t do this if we are stuck in hyperarousal or hypoarousal, where we are stuck in our heads or rushing around all the time, disconnected from ourselves and the world around us, and not feeling safe/settled and secure.  Aligning body, mind and heart helps us regulate our nervous system, awaken to a deeper way of being and reconnect to the connectedness of everything.

Living in an embodied and open hearted way can also help us see that the obstacles and challenges that appear as part of life can help us awaken and grow.  We can ask questions that support with this like how can this help me grow? How can this help me serve myself and others?  How might this help serve my heartfelt intentions or aspirations?  Sometimes things are overwhelming, these times we won’t know the answers to these questions and we will struggle to connect to our bodies, these times we may need to find a suitable therapist to support us.

Love & connectedness in healing 

One of the things that is really important in healing is that our suffering is witnessed and acknowledged in a compassionate and non-judgemental way.  Suffering that is not witnessed and acknowledged, or done so in a critical way, often causes more trauma.   Love, compassion & connection are needed here because when we aren’t fully present and connected we can’t truly notice our suffering, or that of another, and without love and compassion there is judgement and criticism.

Acceptance is important in healing, it isn’t a one off thing, instead it’s ongoing and it can be said to be a moment by moment process.   Acceptance isn’t passive, it doesn’t mean putting up with something, or that things won’t change (things are always changing right down to each moment).  A great strength or courage is needed to be able to let go and trust in our inner wisdom and the process.  With curiosity, openness, courage and a compassionate loving presence (a heartfelt presence) we can notice and allow what’s present in the moment to be exactly as it is, even if it’s not how we would ideally choose it to be.  Being present with love & compassion helps us accept and allow what’s present to be without, for example, self-blame or self-criticism, and when these do appear they can be met with compassion and love too.   Allowing what’s present to be needs a sense of safety, or feeling safe enough in the present moment.  This means that we need the nervous system to be balanced or close to balance (where we are within our window of tolerance/ventral vagal system).

From a place of noticing what’s present in the body we can increase our understanding, connect to our inner wisdom and discern what’s supportive for us.  Any action comes from our inner wisdom rather than from a threat based reaction, for example a pushing away, trying to get rid of something, or avoiding.  It’s important for us to stop over controlling and resisting, this is part of being in a regulated nervous system (resistance & over control are part of our threat system and protection mechanisms), as it calms our nervous system and allows new possibilities to begin to surface.  Allowing what’s present to be with an acceptance or openness is a place where fear softens and we can start to see what’s resting underneath.  Holding whatever is present, in love compassion isn’t always easy and this is part of the practice and the healing.  Things can reappear that we thought we had dealt with once, that we had healed, new layers surface for healing, here again we practice acceptance and compassion.

We need trust to allow the healing process to unfold in its own time without wanting it to be a certain way or create a certain outcome, without pushing or resisting, easier said than done I know (that’s part of the practice too).  We naturally push away or resist what causes suffering and grasp what creates joy and the things we want more of.  Part of suffering is in the pushing away and grasping, we can learn to allow things to flow through (an ever ongoing practice).  We can, for example, notice that pain is present and allow it to be in the background as best we can, rather than trying to get rid of it and getting frustrated, angry or self-critical when nothing works.  This doesn’t mean we don’t take action to try and alleviate the suffering, instead it comes from a different place and we take wise action.  This may be no action sometimes, or something simple like after noticing what’s present and allowing it to be, offering ourselves some soothing words or soothing touch (this could be part of Tara Brach’s R.A.I.N practice or Kritsin Neff’s self-compassion break, for example).  We also need to learn to hold the outcome lightly, we cannot control this as there are many variable (some we don’t see) we can influence the outcome and control how we relate to it.

Often when we are suffering we lose trust in ourselves, I have seen this time and time again working with people with persistent pain, other long-term conditions and felt it myself.  The decreased trust, or the loss of trust, brings an opportunity to connect more deeply to it and develop more of a kind of unshakeable trust.  Part of trust is trusting that we have the skills, knowledge, resources/practices to manage, or if we don’t then believing that with support we can develop them.  Learning to trust the healing process is important and it means we need to trust in uncertainty too.  Trusting in uncertainty isn’t easy, it’s important because so much is uncertain in life, this means we need to let go of over control.  Being safely grounded in compassion and love links with trust in holding us steady enough within the uncertainty, within what feels like a vulnerable place.

Reconnecting to our inner wisdom is so important in healing, it supports and guides us.  Terms like inner wisdom and our true nature or essence, can seem a bit abstract, they aren’t tangible things we can see.  Our inner wisdom and true nature both hold love & compassion and connecting to them is important in healing.  Connecting to our inner wisdom through our body guides us in many ways, for example it can guide us when to explore something to deepen understanding and when to allow something to be in the background for the time being.  Sometimes we need help to access our inner wisdom especially if there is unprocessed trauma, the light of compassion and love can be hidden under layers.

Feeling the connectedness to love, nature and the wider whole is also important in healing and our overall wellbeing.  Research is showing us that it is not necessarily the amount of time that we spend in nature that is significant for our wellbeing, except in terms of physical wellbeing, there needs to be a sense of connectedness too (physical wellbeing needs this too, so again it’s not just the time in nature that’s important).  Sometimes we have disconnected from the interconnectedness of nature, reconnecting to this is part of our healing and it’s needed for natures healing.  Nature’s wisdom combines with our inner wisdom and can guide us when we listen.  If we haven’t lost the connection to the connectedness with nature then the sense of connectedness with this tends to deepen as part of healing.  Nature is part of us and we are part of nature, our wellbeing and natures wellbeing are inextricably interlinked, connecting to this helps our healing and also the healing that nature is desperately calling out for.

The interconnectedness with nature and something bigger than us may resonate with you or it may not, either way is ok.  If these things are of interest one of the books that I would recommend is called ‘Reconnection: Fixing Our Broken Relationship With Nature’ by Miles Richardson.

Common Humanity & Healing

As human beings we all experience joys and sorrows, love and loss, easier times and tough times, suffering and healing.  This is the common humanity we all share, we share many things as part of being human and connecting to this is important in healing.  Connection to others is important in healing, we are social animals.  We self-regulate and we co-regulate, our nervous system talks to other nervous systems.

Adapting to and processing many losses is part of being human and is often part of healing too  This can be for many reason, for example, from the multiple losses related to living with a chronic health condition, from life being different from the way you wished it to be, and/or from the loss of a loved one.  There isn’t a right or wrong way to grieve.  I wrote a grief and loss in persistent pain & other long term health conditions blog which you can find this here:

Part one https://unityphysio.co.uk/grief-loss-in-persistent-pain-other-health-conditions-part-one/

Part two https://unityphysio.co.uk/grief-loss-in-persistent-pain-other-health-conditions-part-two/

It is the tough times that we learn the most from and these times that we need a toolbox of practices to draw on, these can also be referred to as strategies or resources.  The tough times strengthen our heart and allow our heart to open more fully, to be present with love, compassion and courage, connect to the depth of our strength and to connect more deeply to the connectedness of everything with a sense of spaciousness.  We cannot heal until we learn what supports our nervous system regulation and have some resources/practices to support this and healing, we create more resources along our healing journey too.

What supports healing?

There are many things that can support us each day, that can become part of a way of being and part of healing, including: embodied self-awareness practices (awareness in the body), meditation, mindfulness, breath practices, self-compassion, yoga, exercise and movement, walking, time in nature, journaling, distraction (sometimes this is needed, for example when things are over whelming) and many more things.

When I had a really tough couple of years due to some health conditions I leaned deeply into my yoga and compassion practices and drew on many other resources that I had, my gratitude for these deepened and I developed many more resources through this time too.  I also reached out for additional support, remember we can’t heal on our own.

What practices and resources/strategies do you use to support you day to day?

Summary

To heal we need many things including: to restore balance and retrain our nervous system, a sense of safety and trust, an embodied loving awareness, acceptance, a variety of resources/practices along with a daily commitment to practice, belongingness, support of others, connection and connectedness, and of course compassion and love.  Healing takes time and a toolbox of strategies and practices, it’s not one thing that helps us heal it’s many things.  We can’t heal on our own, we need the co-regulation and support of others which can take many forms.  Sometimes support needs to be in the form of a therapist, other times it could be a coach or mentor, friends, or a wider community group that we are part of.

As we heal the confusion that we had in our suffering evolves into clarity and we awaken a little more to our true selves and the interconnectedness in everything too.  There are times that we think we have healed and everything is going smoothly and then something happens that opens up new layers that are ready to be healed.   Healing is something I have come to see as being ongoing, maybe you can relate to this too.  I don’t think there is a destination unless it is to return to our true selves and wholeness, to the alignment of mind body and heart and live from this place, and return again and again.  Each time there is a challenge or an obstacle it gives us an opportunity to grow and connect to our true selves, our inner wisdom, and more deeply to the connectedness within and around us.

We all already have what’s needed for healing within us, to access and nurture this we need to be able to safely connect to our bodies and we often need to change how we are relating to ourselves, from being critical, for example, to being more compassionate.  Sometimes we need help from a psychologist, or another psychological clinician to do this, for example when there is unresolved or unprocessed trauma.  We all have within us a core essence of compassion and love, this light never goes out, sometimes it’s under layers and we need help to be able to start to see it, and the more we connect to this place the more brightly it shines.

Healing has many aspects and perhaps we could see it as being rooted in connectedness and love, and aligning mind, body and heart.  I have come to understand that our healing rests within the love that is within and around us all and the connection to the interconnectedness of everything.  Healing is a place where enougness, okness, compassion, love, trust and freedom all rest.  Connecting to the wisdom of our body, heart, inner trust, compassion and love over and over again helps us to heal & develop an unshakeable inner core, or at least a less shakeable one.  The inner wisdom that is within us all, our core of love and compassion, is a place that we can come to know more deeply with time and once we have an embodied knowing (a felt sense in our body) we can return again and again to our true selves and a balanced state (our ventral vagal system/window of tolerance) that supports healing.  As we heal we can live more fully in an open hearted presence, developing a new way to be, relating to ourselves in a more loving and compassionate way and extending this love and compassion to others and the world around us.

To finish this blog I’m sharing a poem that I wrote called ‘Healing Within’:

Many things were unknown

Couldn’t be seen

In the darkness there was always some light

Flickering gently

Leading the way

Slowly, step by step

Pauses scattered through

Compassionate awareness enveloping

Body wisdom guiding to explore

What’s resting inside, to be seen, accepted and loved

Slowly, never to be rushed

Each footstep exploring

Heart trusting

A loving presence guiding

Exploring and listening

Natures wisdom shining

Deepening a knowing

Harmony evolving

Learning a new way to be

Compassion, love and trust united

Deeply embedded within

Shining brightly

Holding the steadiness

Resting in aliveness

Connected to the unity

Being & healing

You may also like to check out the poem I wrote called The Body Remembers The Trust

https://m.youtube.com/watch?v=2pgR3COJLPk

I would love to hear your thoughts on healing and this blog, do drop me an email if you would like to (info@unityphysio.co.uk) or share some thoughts in the comments on social media where I’ve shared this blog.

The post Healing Within Connectedness & Love (part two) appeared first on Unity Physiotherapy and Wellbeing.

What is PoTS?

Postural orthostatic tachycardia syndrome (PoTS) is a form of dysautonomia (autonomic dysfunction) and is characterised by an abnormal increase in heart rate within 10 minutes of sitting from laying down or with standing, this is referred to as orthostatic intolerance.  For people with PoTS upright posture (sitting or standing) is limited to varying degrees.  Alongside the main diagnosis of PoTS, which we could call classic PoTS, there are different subtypes: neuropathic PoTS, hypovolaemic PoTS & hyperadrenergic PoTS.

PoTS diagnostic criteria is a sustained increased in heart rate (HR) for over 3 months of 30bpm within 10 minutes of standing in adults, or reaches 120bpm or more in this time, and in children an increase of at least 40bpm.  A tilt table test is used for diagnosis and/or the active stand test or NASA lean test.  It is also important that other conditions are ruled out and tests should include blood tests and an ECG.  If people don’t meet the diagnostic criteria and other things have been ruled out they most likely have orthostatic intolerance (which is one end of the PoTS spectrum before it reaches a level classed as PoTS).

There are a whole range of associated symptoms including:

• Increased heart rate
• Alteration in blood pressure
• Palpitations
• Light headedness/dizziness
• Shortness of breath
• Chest pain
• Fatigue
• Brain fog
• Sweating
• Shakiness or tremulousness
• Fainting/blackouts (in a fairly low percentage of people)
• Sleep issues
• Headaches/migraines
• Anxiety
• Nausea
• Gut & bladder issues (IBS is common)
• Visual problems
• Purple hands and feet (pooling of blood in extremities due to sitting and standing for varying amounts of time)

I would like to highlight that people are often misdiagnosed with anxiety when it’s actually PoTS, PoTS itself creates feelings associated with anxiety & increased sympathetic nervous system (SNS) activation.  Living with PoTS can of course also cause anxiety, or anxiety may be pre-exisiting as well.

Many things can make symptoms worse including excess heat, a big meal or certain foods, decreased fluids or dehydration, hormones, stress, standing up too quickly, not getting enough rest, exercise (doing too much or certain types like HITT – HITT is never a place to start but may be possible with rehab), time of day (generally worse in the morning) and alcohol.

PoTS can occur as a primary problem or secondary (associated with another condition), including: fibromyalgia, ME/CFS, Elhers-Danlos syndrome (EDS), Parkinsons disease, lupus, rheumatoid arthritis, lyme disease & others.  Mast cell activation syndrome (MCAS) can be present as well, it is not clear if this is a primary or secondary issue, there is also a triad of EDS, PoTS & MCAS.  PoTS is also associated with long covid/post covid syndrome and is fairly common with this.  In my experience PoTS rarely exists in isolation.

PoTS is something I screen for as part of an autonomic screen with all the people I work with including those with persistent pain & fibromyalgia.  It’s not widely enough known about and screened for so is not always picked up and can be misdiagnosed as anxiety.  Some level of autonomic dysfunction is common in all the conditions I work with.

There are many things that can cause PoTS or contribute to it, which I am not going to cover in this blog.  You can find more information on PoTS here:

PoTS U.K website: https://www.potsuk.org

Information on the Long Covid Physio: https://longcovid.physio/dysautonomia-pots

How Can Physiotherapy Help With PoTS?

PoTS often needs to be managed by a multidisciplinary team (with a specialism or good experience in managing the condition).  Ideally a cardiologist with an a specialism or special interest in PoTS, a specialist physiotherapist, an occupational therapist when needed, a psychologist when needed, and a dietician may be needed with dietary adjustments especially if there is MCAS.   Psychological therapy can help in a number of ways, including with managing the distress of living with PoTS and some treatments, like EMDR, can help to calm down the ANS.  Other specialists may need to be involved, for example a sleep specialist.

A specialist physiotherapist can help to reduce symptoms and improve function, this needs to be alongside other factors like medication (when needed), hydration, increased salt (when not contraindicated), diet, compression stockings/garments, stress management & pacing of activities.   Some of the ways in which a physio can help are mentioned below.

Education & lifestyle modification: A physio can help people understand the condition and give advice on the lifestyle changes that help with management, along with supporting exploration of these.  There are a variety of lifestyle factors that can help, some of the main ones are mentioned above.

A tailored exercise programme:  A specialist physiotherapist can tailor an exercise programme, although this isn’t a place to start when PoTS is severe and great care is needed when there is PEM.  It is crucial that PEM is screened for as it completely changes how things are done.  Depending on severity of PoTS and other factors, including other conditions and exercise tolerance, recumbent exercises may be the starting point.  Exercise has been shown to be helpful in the management of PoTS, any exercise programme needs to bear in mind many factors.  To begin with it needs to be of a low intensity and progressed very slowly and it needs to be combined with other factors, including calming & retraining of the ANS.

Pacing:  A physiotherapist can help people explore pacing of activities and different strategies that help with managing functional activities.  Pacing is not a set or fixed way of doing things, there isn’t a right or wrong, it needs to be individualised and it’s something we need to hold lightly otherwise we step into over control which ramps up the threat system and impacts our flexibility in interacting with life.  Pacing needs to be flexible and come from a foundation of compassionate awareness and understanding in my opinion.  People understanding their baselines for activities and what rest is for them is part of pacing, for people with PoTS rest may need to be laying down.

Breathing exercises:  Some people have a breathing pattern disorder alongside PoTS due to the prolonged over activation of the sympathetic nervous system, increased heart rate & shortness of breath (a breathing pattern disorder also contributes to these symptoms, it becomes a bit of a vicious cycle).  A physio can assess for this and give exercises to help retrain normal breathing and calm down the ANS, if needed people can be referred onto a respiratory specialist physiotherapist.

Management of multiple conditions:  People may well have other issues alongside PoTS including persistent/chronic pain, a specialist physiotherapist can tailor things bearing in mind the other conditions someone is living with as well as PoTS.  People may also have ME/CFS or long covid, I have an interest in both of these conditions along with PoTS, a graded exercise programme is not recommended with ME/CFS and this would also apply to long covid when PEM is present.  I have worked many years as a persistent pain specialist physio & so am well placed to help with this.

Calming & retraining the autonomic nervous system:  This is important with PoTS, a physiotherapist can help people explore what helps them with nervous system regulation and retraining.  This like other aspects of care needs to be individualised, there is not a set guide and instead more of a flexible framework.  Part of this includes using measures like monitoring heart rate and heart rate variability (HRV), these are also helpful as part of guiding exercise progression.

Self-Compassion:  This isn’t something that is part of physiotherapy as such, it is however part of my approach to whole person care.  I integrate coaching and yoga into physiotherapy and use a lot of self-compassion and compassion practices with people.  Self-compassion can help to regulate the nervous system and the research shows us it helps in many ways (not specific PoTS research) including with decreasing self-criticism, increasing resilience and overall wellbeing.

About Me 

I am a neurological & pain specialist physiotherapist, coach & yoga teacher.  Alongside working in the specialist area of persistent/chronic pain I also have a special interest in ME/CFS, long covid & PoTS, chronic stress & anxiety.  I also have lived experience of PoTS, ME/CFS, persistent pain & anxiety.   All of my offerings are trauma informed and I have a compassionate integrative approach to care.  You can find out more about me by clicking the link below

https://unityphysio.co.uk/about-ann-physiotherapist-in-lincoln/

I can work with anyone in the UK virtually and locally can offer in person appointments or a combination of remote and in person.  I offer a free 15 minute call for anyone before they decide if they would like to book an appointment.

The post How Can Physiotherapy Help With PoTS? appeared first on Unity Physiotherapy and Wellbeing.

Persistent pain (also known as chronic pain) is a specialist area/field in healthcare, it’s an area that I have specialised in and wanted to share a little on what this means.  A little background on physiotherapy training, following completion of a physiotherapy degree physiotherapists take different paths, traditionally this always started with a junior rotational post in a hospital.  This now varies, on graduating a physiotherapist may start work as a junior rotational physiotherapist working in different areas within a hospital, or they may start working as a junior therapist within a community therapy team, or they may go straight into private practice on a graduate development program, usually this is within musculoskeletal physiotherapy.  Some physios work generically and others specialise in one area or a few areas, doing additional training and having the appropriate level of support and experience to develop a specialism, which is always ongoing.  Physiotherapists work in many areas, here are some of them: musculoskeletal (MSK), respiratory, cardiac rehab, neurology, paediatrics, care of the elderly, falls, learning disability, mental health, persistent pain, ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), long covid and palliative care.  

Pain specialist physiotherapists have done additional in-depth training on top of their degree and usually have experience in a variety of areas.  Additional training includes exploring pain neuroscience more in-depth than at undergraduate level, psychologically informed practice training (includes integrating the core principles from, such as, acceptance and commitment therapy, compassion focused therapy and cognitive behavioural therapy), other pain related training and other related training including coaching.  They keep up to date with the evidence base on pain and understand the many myths that exist within healthcare and society about pain and the impacts of these.  Pain physios usually have many years experience of helping people learn to live well with pain and change pain too.  They value, listen and learn from the lived experience of those they work with and the wider lived experience community.

Pain physiotherapists use a whole person centred biopsychosocial model (many use a biopsychosocial-spiritual approach – this includes what’s meaningful and gives purpose) and take a holistic/integrative approach to care.  We aim to understand the whole person and their world and hold a compassionate non-judgmental space for understanding and hearings someones story/journey and to support exploration.  We encourage people to build compassionate self-awareness and to hold a curiosity and a willingness to explore what may be helpful and supportive for them.  Pain physiotherapists aim to empower people, for example, to be able to engage in what’s meaningful and develop a set of strategies to help manage and change pain.  We help people to be able to fully engage with life again and what’s most meaningful.   We work closely with other professionals involved in someone’s care, such as a psychologist and occupational therapist.

Pain physiotherapists understand that pain is complex and multi-faceted and that’s linked to the fact human beings are complex, this is why we have often done a variety of training exploring the different areas of being human.  Each pain specialist physio works by integrating all their knowledge and skills in a way that is blended with the knowledge, skills and experiences of each person they are working with, creating individualised care.  Each pain physiotherapist works a little differently as they integrate their knowledge, unique skill set and experiences into their work.  No one therapist has the same knowledge, skills and clinical experience, just as no-one person is exactly the same.  It is important to mention that we all follow the Chartered Society of Physiotherapy (CSP) guidelines and those of the Health and Care Professions Council (HCPC).  When using knowledge and skills that don’t class as physiotherapy (according to what is set out by the CSP), we adhere to the best practice within those professional guidelines as well.

How To know if Someone Has the Relevant Knowledge, Skills & Experience?

Read what qualifications, training & experience they have on their website and if it’s not available to read on there its ok (and I would recommend it) to ask.  It is ok to ask what someones experience and background is.  Some therapists will offer a free short call, I do this, one reason being it helps people decide if working with them feels potentially helpful.

My Knowledge, Skills & Experience In Persistent Pain

Following my junior rotations in a hospital I chose to specialise in neurology and persistent pain and over the years have done many trainings, lots of reading, had support from more experienced clinicians and worked with many people with persistent pain.  I have worked in chronic pain for over 14 years, in the last 3-4 years I’ve stopped my neurology work and transferred this specialism to being a special interest in working with people with ME/CFS, long covid and PoTS, alongside still working with people with persistent pain.  One of my roles has been working as an advanced practitioner physiotherapist in pain, I did this for 4 years alongside my private work.  

Here’s some of my training:

BSc (Hons) Physiotherapy

Life coaching qualification

NLP practitioner training

Yoga teacher training (200hr)

80hr trauma-informed yoga and embodied resilience course

Two weekend yoga courses for physios taught by physios who are yoga teachers

8 week psychologically informed practice course with the Physiotherapy Pain Association

 Compassion focused therapy (CFT) for healthcare professionals 2 day course

8 weeks CFT training

A few different ACT courses up to intermediate level

Pain coaching course

Explain pain course

Graded motor imagery course

Functional nutrition & chronic pain certification

The above list is a small percentage of the training I have done, there has been a lot more training and reading over the years in addition to what is listed above.  There is other training related to the special interests I have in ME/CFS, long covid and PoTS, and the yoga and coaching parts of my work.

Remember Chronic Pain/Persistent Pain Is a Specialist Area

Chronic pain/persistent pain is a specialist area and it it important that when people are struggling with persistent pain that they see clinician(s)/therapist(s) who have knowledge, skills and experience in this area.  Persistent pain includes many diagnoses including fibromyalgia, chronic low back pain, chronic headaches, CRPS, and many others.

This wasn’t the easiest thing to explain in a short (ish) blog post but hopefully it makes sense and you can see the value in seeing a pain specialist physiotherapist  or an MSK physio with a special interest in persistent pain.  Remember it’s ok to ask what someones background and experience is in working in chronic pain.

If you need help with persistent pain and would like to see if I can help please get in touch to book a free 15 minute call to discuss.

The post What is A Pain Specialist Physiotherapist? appeared first on Unity Physiotherapy and Wellbeing.

The suffering associated with losses and grief affects us all many times throughout our lives, losses and grief are part of the human experience and living with love and an open heart.  One thing that I feel is important to mention at the start is that grief has no right or wrong way, no specific length of time, it’s individual.

I am writing this blog as I’m passionate about helping people with persistent pain and other health conditions and I feel that the associated grief and loss isn’t talked about enough.  I am not writing this a psychological clinician instead as a coach and physiotherapist who has done additional related trainings, supported people with losses and grief through persistent pain, and through my lived experience of many losses related to health and other losses.  I’ve supported people by holding space for the grief, acknowledging it and allowing people to process it in whatever way they needed to (alongside a psychological clinician when needed).

There are many losses in life, including deaths, losses of relationships, losses of role, physical and mental losses, climate related losses, societal losses, loss of trust and confidence in ourselves, loss of hopes and dreams, right down to the loss of each moment as we never get the same moment back.  Losses through living with pain and other health conditions can be sudden, or they can appear gradually, they commonly affect many domains of life and can be completely life changing.  Many things need consideration in living with losses and grief related to health conditions, non-finite losses or living losses as they are also called, I will mention some of the important aspects in this blog.

Grief & Our Assumptive World

We all create what is known as our assumptive world, a lot of this develops when we are very young, which is part of our attachment system.  The assumptive world includes how we see ourselves and others, how we feel safe in the world, how we feel that we fit into social systems and how we think the world should work.  It forms a foundation of how we navigate the world feeling safe and ok.  Sometimes things bump up against the assumptive world and we adjust it, other times it’s more affected and it can be shattered.  When this happens we often no longer know who we are, we struggle to know how to be in the world as our old way of being no longer works/is no longer possible and the world no longer makes sense to us.  I think this happens more than is recognised in persistent pain and other health conditions when losses impact multiple domains of life.

When multiple losses wipe out the world we once knew it results in a state of disequilibrium.  This often feels a very vulnerable place to be and we can feel out of control, so a sense of agency is important.  Here’s an analogy I developed, maybe you can relate: A small rowing boat was out at sea, it had been impacted by the many storms, it couldn’t orientate to where it was anymore and it had lost its trust in navigating the sea’s ever changing environment.   It had taken on too much water, this happened so quickly it was overwhelming, consequently it started to sink.  After a while it was possible to work out how to offload some of the water and some dolphins came to help support the boat whilst it brought itself to a state of floating once more.

Once floating it had no idea how to get to shore again even though it could see the glimmer of the lighthouse.  The dolphins were still present providing a sense of safety and comfort whilst the boat rested and floated a while.  It had decided to simply float whilst it reflected on its journey, learning more about the current, the changing waters and the storms.  It began to feel bigger and a little more spacious and ready to start to travel the tricky waters to the shore.  The boat turned towards the direction that the lighthouse glimmer appeared to be arising from, slowly rowing and pausing, rowing and pausing, checking in on the water and the changing tide.  From time to time it let go of a little more water that came on board, the dolphins accompanied the boat as it travelled which was soothing and provided a sense of safety as it learned to trust and navigate again.  The boat had the choice of when pausing was needed and when to change its speed and it kept checking in with what felt right for it.  It became aware of the importance of spaciousness as it travelled and being able to see the wider view once more,  it became aware of distant islands and much more that it could see on the horizon and closer by.  It felt connected to all around and the wider parts of the sea and sky that it couldn’t see, it was soothing to feel connected to all of this.  This was the start of re-learning about the world and the journey towards creating something meaningful for the boat.

Some of the aspects for consideration with grief and loss in persistent pain & other health conditions

There are tangible losses, things that can be more easily seen, and intangible losses that are not so easily seen and expressed.  Intangible losses include: a change in identity, loss of purpose, loss of trust and loss of safe connection to the self and others.  Losses when struggling with persistent pain commonly include: loss of independence, loss of physical function, loss of joy and play, loss of finances/financial stability, loss of relationships, losses of role, loss of identity, loss of trust (in the self and others), loss of self-confidence, loss of belonging and feeling isolated, loss of ability to do what’s needed, loss of work, loss of being able to engage in hobbies and activities once enjoyed.  Often there are commonly many layers with losses and things are complex.

The intangibility of some losses can make grief feel isolating and links into a sense of feeling helpless and hopeless, these are linked to suicide risk which is one reason why keeping connected to a sense of community is important.  People also often feel isolated when living with pain and pain itself lacks tangibility, so it can be a bit of a double whammy with the isolation aspect.  It’s important to connect to the bigger picture view, that pain, grief, loss and suffering are part of being part of being human and many people feel isolated sometimes.  Acknowledging others feel like this too and having a community to connect to is important and can bring a sense of relief, it can be soothing and a sense of connection can feel healing.  Also holding our losses in the bigger container of common humanity rather than in a small container can help things feel less overwhelming.

As with pain itself there is primary and secondary suffering.  With pain, for example, the primary suffering is the pain and then we have the secondary suffering which commonly incudes anxiety, frustration, anger, guilt, self-criticism, and grief.  With losses the primary suffering is the loss and grief, the secondary is, for example, guilt, anxiety, rumination, anger and frustration.  Tara Brach talks about this as first and second arrows, Dr Rick Hanson as first and second darts.

Those close to the person living with persistent pain, or another health condition, are also grieving the loss of the person that once was.  This can be forgotten, it’s important it is acknowledged that the people close to the person living with pain are also grieving the person they knew.

Grief is commonly influenced by unhelpful social messages, it’s important we do what feels right to us with grief and not what societal expectations and norms might dictate.  In society there are many harmful messages for example: pick yourself up and get on with it, you need to try harder, that it’s strong to suppress and strictly manage emotions, and that being self-reliant and fiercely independent is the ideal.  None of these are true!  There are also deep rooted, messages in society around expectations of a fix or cure which puts pressure on people to be ok and on others try and fix things, rather than simply being with the grief and allowing it to be present exactly as it is.

Loss triggers our threat system, the sympathetic nervous system, many different emotions and feelings and parts of ourselves associated with our threat system show up and some stay a while, and our protection mechanisms are generally heightened.  There can be numbness, a lack of emotions, and an emptiness too.  Two of the protective parts that show up are the critical self and the anxious self, it is completely understandable that these parts of us show up, especially as uncertainty can be tricky at the best of times and the unpredictability of pain and other health conditions add into this.  Anxiety may also have been present before the grief and losses too and it can be a strong undercurrent sometimes in grief, it can be woven through the grief too.

It can feel like we have no control and as a result we end up over controlling things to try and manage the uncertainty.  There are common questions I have been asked, and I’ve asked myself too, including: what if I don’t get better?  What if I get worse?  Will I be able to handle it?  These questions are coming from fear of uncertainty usually, and often the anxious self has all sorts of responses that aren’t particularly supportive in the long-term.  We need to acknowledge this part of ourselves and any others showing up that are needing to be seen, heard and understood and bring in our compassionate self to calm the protective parts down and create more helpful guidance and support.

Through unhelpful self-talk, perhaps combined with previous experiences and beliefs, we may also have attached unhelpful meanings to some of the losses, for example that we are not good enough, or we are weak, or we may be carrying unnecessary guilt.  It can be helpful to explore what meanings we have attached to things, seeing if they are true or helpful (likely neither) and creating a compassionate reframe.

Also there can be worry and rumination linked to the losses, this is usually serving a protective function, like the anxious self and critical self do.  When we look under rumination there may be a lot of fear, anxiety, sadness, anger, shame or other protective feelings and emotions.   It’s really common for people who have a lot of losses due to pain and other health conditions to have a fear of if they will manage in the future, and even if they will get worse and the potential impacts of this happening.  In my experience of working with people with pain and fatigue it is commonly fear, anxiety and shame that lie underneath the rumination.  Sometimes we need to work with a therapist to explore this, partly depending on our previous experiences and internal resources.

When someone dies we have a ritual, a few of the various important things about this include recognising and honouring the loss and bringing a community together, people united in loss with love and care for each other usually.  In non-death losses we don’t have a ritual and this is something that can be helpful.

We need to make sense of things, acknowledge and honour what’s been lost and what we miss.  Sometimes we need to let go of things and old ways of being, to then move into re-learning and compassionately rebuilding a new assumptive world that maintains safety.  Rebuilding creates meaning, this is different to making sense of everything, it’s the what now?  It could be seen as building and growing something that’s helpful for the self and others from what’s been lost.  It’s said to be deep work that goes right to our core, maybe you have been there and can relate to the depth, I can.

It’s not about coming to an end of dealing with the loss, although we can make peace with it and create something meaningful it often gets retriggered.  For example, say for a few years it’s not at the forefront of our minds, then it gets triggered & there’s more that we maybe need to acknowledge, notice & allow to flow through as we deepen awareness and perhaps make some changes.  What arises is an opportunity to understand things even more deeply, let go of anything that’s not serving us and develop more resources for navigating the tricky times.

Here’s the link to part two which covers some of the things that can help, there is also a short summary and some resources that may be helpful https://unityphysio.co.uk/grief-loss-in-persistent-pain-other-health-conditions-part-two/.  Please remember grief has no right or wrong way and to ask for support if you need it.

(Some images are the authors own, others are as follows from shutterstock: heart in hands by SewCream , dandelion by JanBusson; from stock.adobe.com: man in boat by fran_kie, words on clipboard by Syahrir ).

The post Grief & Loss in Persistent Pain & Other Health Conditions (Part One) appeared first on Unity Physiotherapy and Wellbeing.

Like me you may be interested in persistent pain and hearing stories from those who experience it or have done. I ended up specialising in pain professionally because of my own experiences and seeing there was far more to pain and helping others make changes than we were taught at university.

I always said my first blog would be sharing my story so here goes. Settle back with a cuppa, it’s a longer than intended blog. If you don’t make it quite to the end remember to read the summary before you go. I can’t guarantee all of you will find this interesting and useful, I hope that you do.

I have had persistent pain for around 22 years, for some of this time I struggled with it. When I was struggling with pain I felt like I was surviving rather than thriving, this really continued until I learnt a lot more about pain (this is complex!), living well with pain, developing more practices that looked after my wellbeing and helped to change pain whilst allowing pain to be in the background. I believe my experiences and learning have helped be become the compassionate integrative therapist I am today. The pain is nowhere near as bad as it was and it does not stop me doing what is most important to me anymore, I am thriving rather than surviving.

With persistent pain there is always a story, so where did it all begin?

There is evidence that adverse childhood events affects health in later life, this is where my story begins. I was bullied for all of my teenage years, throughout secondary school and a little before this too. This was psychological bullying by large numbers of people on most if not every day. My Grandma always used to say ‘sticks and stones may break my bones but names will never hurt me’, sadly this is not the case. I left school with no confidence, self-belief or self-esteem, and would not go out on my own.

I didn’t appreciate how much of an affect this was likely to have had on my health and wellbeing until I reflected on it in the last few years, the more I have learnt my understanding has deepened. I think it is likely that this is where the issues started, there is also likely a genetic component to things based on some family health issues.

How did I interact with the world on leaving school?

Not much if I could help it, I often wanted to stay hidden away like that clam shell buried in the sand for safety yet this is not what I did as long as some of the sand came along too. Gradually I needed less of the sand to come along with me. For many years if people were laughing they were of course laughing at me, no matter how many times I was told by those close to me they wouldn’t be I didn’t believe them.

I had a flexed posture and looked down most of the time, this was a posture of protection and disengagement. The evidence doesn’t generally support correlation between posture and tissue damage yet it is important for things like self-awareness and our interaction with the world.

The journey with pain, health and wellbeing

The first thing that happened in terms of health changes was developing gut issues, this was after a holiday and was around the time of either GCSE’s. It is most likely the stress from being bullied contributed and the exams, who knows if there was something consumed on the holiday that did too. This was eventually diagnosed as IBS, at this time it was thought to be caused by stress and although this is a factor it is not the only factor. I feel we over medicalise things and there are too many labels within healthcare today, for example why do we still feel the need to distinguish between psychosomatic and mechanical pain. All pain is really both seeing as all systems that make us one work together, maybe (and that is a maybe) you could argue acute injury is solely mechanical yet it has psychosocial factors involved too (I would argue it isn’t solely mechanical and believe nothing is). Why do we label in this way and allow the stigma attached to psychological aspects of pain to still be prevalent.

When I was about 18 years old I started to have problems swimming due to shoulder instability, one of my shoulders was persistently subluxing. I was told I had multi-directional instability in both shoulders, my non-dominant shoulder was the one that was subluxing. I saw a lovely and very honest shoulder consultant about 11 years ago who said the surgical option was capsular shift surgery, which he advised could possibly solve the problem for a while but could be more of a problem in the future. Another consultant may have presented this surgery differently (I had only just qualified at the time and had limited knowledge about this surgery). It was interesting listening to a video by Jo Gibson, Shoulder Specialist Physiotherapist recently, she could have described me when she discussed how a group of instability patients have been identified by The Stanmore Group to have their shoulder pulled out of joint by pecs, deltoid and lats, which is what my pecs and anterior deltoid used to do.

I first hurt my back at work, around 20 years ago, at this point in my life I was working in a bank. I had Chiropractic treatment for both which helped to an extent. I later had physio, which helped a lot, and inspired me to become a physio.

What happened next?

About 5 years later I started my physiotherapy degree, 11 years down the line it is still a job I love and am passionate about. At the time I started studying I intended to work in sport, during my student rotations I developed a love for Neurology and my plans changed! Later down the line as a junior physiotherapist I started exploring pain, I thought there was more to it than I was taught, I became more and more interested in it and helping people struggling with ongoing pain.

During studying my shoulder became more of a problem, I would often finish a day on placement struggling to get changed as my shoulder range had significantly reduced, often my shoulder was subluxed. When not on placement I would drive home from university (an hours drive) and often had to lay on the floor once getting home to try and get the tone in pecs to drop and get my shoulder back in alignment. When I treat patients with shoulder subluxations now I understand the amount of pain this can cause. I made it through my degree and acute work as a physiotherapist, it was challenging as my shoulder really didn’t tolerate load. I kept on going and pushing through the pain and ended up with an even more sensitised nervous system and at some point with neuropathic pain, this may have been whilst studying or later my memory of that is not clear.

About 7 years ago I took a senior role in a specialist community stroke team, during the time I was struggling with my shoulder and arm pain, I could sometimes be found lying on the floor which I only resorted to when my shoulder was subluxed and I had neuropathic pain. At the start of working in this team I had a car accident which resulted in a whiplash injury, dizziness/imbalance and headaches, so that added something else into the mix. After about three years of working with this team I hurt my back at work, I had severe lower back pain and distal neural symptoms (pins and needles). Did I stop? No, I hadn’t learnt, I kept on going and pushing through the pain, there was a bigger threat to me in going off sick and so I just told myself I would be ok. A month or so passed by and I finally went to my GP as I wasn’t sleeping because the nerve pain and pins & needles were worse and keeping me awake. Catch 22, lack of sleep increases perception of pain and pain inhibits quality sleep. The medication helped to an extent and on I went until I reached a point where something snapped (not literally!), I spoke to my manager and told her I couldn’t do it anymore I needed to go off sick. You may be wondering why I kept going, I knew that I needed to calm things down and pushing through things wasn’t helping. The bigger threat was that I had previously had a few months off with shoulder and arm pain, when the pain was so unbearable that changing gear was very painful and I could take hardly any load in my arm and sometimes none, this unfortunately later caused issues with a colleague. It is not something I will go into partly for professional reasons, it was in essence bullying in the workplace. This threw me spinning back into lots of self-doubt, my confidence plummeted, I noticed some old patterns resurfacing, and I hated going to work (something that is very rare in my life as a physio). Before my back injury things with this work situation had improved to an extent though were not fully settled so I was worried what would happen if I took time off.

Somewhere along the line I developed fatigue, not the ‘I’m tired it’s been a long week’ sort of fatigue but the sort of fatigue that is all encompassing. I often found concentration hard and wasn’t great at remembering things. Sometimes I got home and had to lay on the floor until my energy levels improved, that’s if I wasn’t needing to lay on the floor to settle my shoulder back into joint anyway! This is hardly surprising with the daily stress throughout secondary school and the affect this will have had on the HPA axis amongst other things. I was functioning in flight and freeze responses a lot of the time at school and for a long time afterwards, my nervous system was on high alert. Thankfully I don’t have this all encompassing sort of fatigue anymore.

I stripped my life back to not doing anything I loved, I knew better than this and yet still did it as could see no other way at the time, I wasn’t interacting fully with my world again. I lost a lot of exercise tolerance and there was sensitivity to a lot of movements and activities. I couldn’t walk down the road for 5 minutes without a significant flare in symptoms. I used my own knowledge and skills, those of colleagues, and lots of love and support from family to gradually make changes. I gradually started to do things like this again, there were times when I couldn’t do it all and I noticed it annoyed me until I came to a place where I realised if the house wasn’t tidy it didn’t matter. I chose what to focus on instead of being annoyed at what I couldn’t do I focused on being grateful for what I could do and I learnt to ask for help. When things like doing the housework felt like climbing a mountain I did what any good mountaineer does and I made a start, I learnt to navigate more effectively with experience, including resting along the way.

Having built things up and calmed things down a lot I fell down the stairs and fractured my wrist and had surgery more on this in the what happens when your dominant hand out is out of action later. The headaches turned into migraines during the recovery from the wrist injury and surgery, about 7 months after, hardly surprising with everything that happened during this time. These were diagnosed as chronic migraines by a Neurologist who said the only way forward was medication. On discussion he agreed to let me try and change things without medication first, with a look of that’s unlikely to happen. Two months later they were downgraded from chronic to episodic, more labels, and now they are mainly headaches not migraines although I do get a few.

I understand what it is to not be listened to by medical professionals to be made to believe pain is in your head, and to feel like it’s your fault. Professionally and personally I know that this is not the case but that didn’t always help, and in the early stages of the journey I wasn’t a physiotherapist and didn’t have this knowledge. Pain is never all in your head and it is always real, brain and body are one and neither functions independently of the other.

Are decisions easy?

Some are and some aren’t! I didn’t want to go back to work in the NHS team following my back injury, this created anxiety which i initially got hooked up in. Lots of things went through my head: what will my colleagues behaviour be like, how will I cope with the load demands, and other thoughts. I decided to resign and build my private work up and my strength and fitness at the same time. This decision felt right, all my family were behind me which helped, even if they were a little worried if things would work out. It wasn’t easy, yet I had more control and was able to adapt things without any workplace issues to contend with. I could finally calm things down and modulate the load demands. I returned to what I loved doing outside of work, gradually the back and shoulder pain changed and my shoulder no longer subluxed, I got fitter, and then I fractured my wrist!

What happens when you can’t use your dominant hand?

In my experience dependence and frustration initially, learning to do things another way, adapting, and asking for help to name some significant things. I had just got to the stage of maintaining my shoulder range with some load and ready to start loading the arm more including overhead prior to this. The fracture was both radius and ulna with the radius fracture being a little displaced, it resulted in radial plate and carpal tunnel decompression a week later and later down the line working to reverse CRPS! I also had coccyx pain for some time after this possibly a year or more. I was having issues with the other shoulder and neck, the side I fractured my wrist on, and before the fracture I was going to get a colleague to help with this. As you can imagine by the time I got treatment for this the wrist injury and disuse of my arm had impacted it too.

The time between injury and surgery was rather stressful. The A&E staff were fantastic and caring, although the overnight stay on the ward was not a great experience and my pain was poorly controlled by medication. I had been told it was definite surgery, however the next morning the Consultant said there was a 30% chance of this and was sent home for review in fracture clinic 2 days later. My knowledge had me questioning, I reached out to an Orthopaedic Consultant at another hospital who was concerned they were doing nothing, he advised the minimum needed was manipulation under anaesthetic. The care felt disjointed and compassion was somewhat lacking at this point. When I went for my review two days later the notes were still on the ward, we had to wait nearly two hours whilst they were located, following another x-ray I was told the fracture had further displaced and needed surgery. I ended up with surgery at another hospital, this was my choice. This team arranged surgery the day after they saw me due to the worsening neural symptoms, this team’s communication was effective and reassuring, I had complete trust in them which can never be underestimated. Whilst awaiting surgery I was trying to notify patients and find someone to cover for me whilst off and do a handover of patients. Being self-employed I had no sick pay, so applied for Employment Support Allowance, this later turned out to be very stressful and gave me an insight into what patients have to deal with. Lots of factors were ramping up the threat of this injury to me, which I was counteracting to an extent with yoga and meditation.

Two days post op my thumb swelled significantly and was so sensitive I couldn’t touch it, it was the sort of sickening pain where you don’t know where to put yourself (if you have ever experienced this you will know what I mean and may even have a visceral reaction to this right now!). I sought the help of a private physiotherapist colleague at this point who was able to help calm things down by targeting the neuro-immune system.

Long story short, myself and the Consultant thought it likely the plate was irritating, this was about 6 months post op, but as there was no way of knowing we agreed I would sit it out longer. Around 14 months after injury the plate was taken out, I no longer had any signs of CRPS by this point, and things were evidently different within a few days of surgery despite the acute post op pain. With patience and persistence, I have got back to a fairly high functional level with my hand even though I still have pain.

I developed a depth of understanding with patients that have their arm function taken from them overnight, although every experience is individual. Overnight I went from being independent and working to being dependent and not working. Everything was hard and things were frustrating as I couldn’t use my dominant hand. I learnt to write left handed, and even filled in the Employment Support Allowance form left handed as I was determined to not keep asking for help as what I could do myself was pretty limited. To feel like you have no purpose and be completely reliant on others for many things once taken for granted is a place of deep learning or it was for me.

I practiced yoga every day and used visualisations for movements I couldn’t do, went for walks, and I read. I integrated my Neuro Linguistic Programming (NLP) and coaching knowledge and skills and became aware of what I was saying to myself. Also, when I noticed my accuracy of recognition on my right side had shot down to 60% I started using NOI’s left/right recognition app, I tried mirror therapy prior to this but it was irritating at this stage but was useful later. This was around the time of realising I was developing CRPS.

What changed?

Did the pain fully go away? The pain has significantly changed, it used to be a at the forefront, it was in the driving seat. It is no longer the pilot and it’s not even co-pilot it’s a passenger, it is quieter and I do not resent it or the experiences that have contributed to the persistent pain state. Sometimes it starts to shout and now I do listen and can quieten it again. One day it may fully go away or it may not, either way I plan on keeping doing everything I choose to.

How did things change?

Things are dynamic and always changing so in some ways not doing anything was needed to make changes. However, to make lasting specific changes it took: the unconditional love and support of close family and friends; daily practice of gratitude, self-compassion, patience and perseverance; awareness practices including of behaviour and thought patterns, daily meditation and yoga; returning to exercise (the gym, yoga, swimming, walking); and doing the things I loved including photography, walking and writing. I didn’t used to be a gym kind of person, partly because I never felt confident there and they tend to be quite noisy which is something I can be sensitive to, I now enjoy it (another example of how things can change in life).

When I went back to swimming and joined the gym I could swim 4 lengths and that was enough, I could do a up to 5 minutes on the cross trainer and bike and not a lot else. I gradually built things up and went to yoga and practiced at home. When I rocked up for my first yoga class, in rather a lot of pain including neural leg/foot pain, it turned out to be the teacher whose class I went to for a little while 10 years prior to this. She had also known my Grandma and tried to help when she was ill with cancer. The classes were immensely helpful to me and played a big part in my healing, I have practiced yoga on and off the mat daily ever since. I now integrate yoga into my physio practice from my own practice and short courses done with two physiotherapists who are also yoga teachers.

I was told at one point by a colleague that I was not stable enough to use the cross trainer. This is when I was getting more neural symptoms during and after using it. I chose to ignore this advice, mainly because by this point I understood pain differently and in greater depth and knew that it was sensitivity not stability that was the issue. I kept on using the cross trainer to the point of the pain alarm going off, being aware of my body tension, breathing and thoughts, and kept gently nudging the barrier. I also knew if I stopped using it I couldn’t replace the cross trainer with something like the static bike as I didn’t particularly enjoy it and felt the rhythmical movement on the cross trainer was helpful, now using it is not a problem. We have to be careful not to keep taking things away from people, especially when they are often already restricting things themselves. A patient once said to me they really wanted to walk one of their dogs and said bet you will tell me not to, I said you absolutely can. Instead of saying no I advised them to take the dog they most trusted for a short walk, maybe a few minutes down the road and back and then build gradually from there, the smile and reaction have stayed with me.

Along my journey I realised fluidity and ease of movement had put themselves in a locked suitcase somewhere and I didn’t know how to access the lock. Through breath and body awareness practices, yoga, pilates and swimming I found this key. I now swim a mile a few times a week and get to the gym a few times as well when time allows. Swimming is something for me that is calming, it’s a great mindful activity and it reminds me of my Grandma who was a swimming teacher. Swimming is something I grew up with and all of my close family love it and are great swimmers. I often smile as I can hear my Grandma saying ‘hands!’ when I’m swimming backstroke. A fitness professional said how amazing my backstroke was last year and not many can swim it that way, this was lovely to hear especially as I was near the end of my swim at the time and fatigue was setting in and because it meant the fluidity I felt was also observable.

I trained as a NLP practitioner in 2012, this was an amazing personal journey and one that became a new way of life. I then trained as a life coach which built on the NLP training, both have helped me change my life and those of others. We need knowledge and skills from things like coaching as physiotherapists.

The good news is the shoulder that used to sublux is about 90% better, it didn’t get better until I left the NHS likely because a lot of the work was heavy and my body was not coping with load which it now does. I still have a sensitive gut, get some sciatic pain and back pain, pain in carpals and wrist from the fracture and have yet to fully settle my shoulder and neck on that same side although I am confident that I will. I had physiotherapy for the wrist fracture and surgery and integrated my own knowledge and skills to get to the level things are now.

After the wrist fracture a physiotherapist I had connected with on social medial reached out to me to offer support, thank you Shelly. I have never met Shelly even though in some ways I feel I have. This gesture of support was important, it was an extension of compassion, and understanding as Shelly knew what it was like to have a significant injury and be a physiotherapist. Connections and social support are an important part of healing and our ongoing wellbeing.

Previously being a physiotherapist has defined me, or so I felt and I didn’t know who I was if I wasn’t a physiotherapist. There have been two injuries, back and wrist, where I have wondered if I would have to change career. This was especially the case with the back injury, I was catastrophizing a bit at this point in time! It worried me at the time, yet when I wondered again about my career some time after the wrist fracture and the first surgery I was no longer worried, I had realised being a physio did not define me.

At the end of last year I came to a realisation that my body hadn’t let me down and I knew I trusted it again. I could see it had never let me down it was simply my perception at the time and for some time to follow that it had. I am fitter now than I was 10 years ago, this quote springs to mind ‘it’s not the years in your life that count it’s the life in your years.’

Do I hold regret about how I have chosen to handle things, not in the slightest as I know I made what I perceived to be the best decisions at the time. Do I wish it hadn’t happened to me? Yes, on one hand as there has been rather a lot of pain yet on the other I wouldn’t be where I am or the person I am. I now see things differently, I see many more choices and I don’t see things as mistakes or blame myself, the best intention is always even if it does not result in what I envisaged. Am I bitter towards those who bullied me? No and I have forgiven them and myself (as you may have gathered I was beating myself up for a while).

The person that was once a clam shell wanting to stay buried in the sand for safety is now a dolphin gliding and swimming, playing and connecting. To reach the confident (mostly) and resilient person I am now it has taken around 20 years! I do sometimes still beat myself up yet recognise it quickly and chose a better and more helpful way to be!

In summary

I hope you take something from reading this, whatever you take will be up to you, and well done if you made it this far! Pain is multifactorial and needs a biopsychosocial approach, it seems the bio gets thrown out by some or others keep it as the focus and others have found an in-between and tailor the biopsychosocial to the individual. We know from the research that trauma, which includes bullying, especially in childhood contributes to persistent pain. The old structuralist view is outdated and a very small part of the picture (remember I didn’t stop using the cross trainer and got better).

If I knew 22 years ago what I now know I may not have pain now who knows, equally I would not be who I am today so for that I am grateful. The reality is we are always building and rebuilding or extending, yet the foundations are always there. The foundations are our core or essence, or what it is that makes you you, it’s a powerful thing to understand. When pain persists it is important to integrate making changes into life, keep hope yet without doing things just to change the pain as that keeps pain as the focus, and not put life on hold until the pain changes (change usually takes some time and restricting things can help keep the pain more prevalent). Ultimately please remember things can change with many things, some key things are time, patience, perseverance, compassion, connection and love (both love for yourself, from others and doing the things you love too).

Watch out for the next blog coming soon, it will be shorter! I will leave you with a life philosophy which I wrote when invited to write a short statement on the filter we push things through on a pain coach course at the end of last year. It evolved very quickly, which likely means it was unconscious and I was in flow when I wrote it. It shows me how much has changed, I now choose love not fear. This is stuck on my fridge door:

‘To create and experience life through connection and love, to learn and grow with presence.’

The post My Journey with Persistent Pain appeared first on Unity Physiotherapy and Wellbeing.

On a side note to exercising with ongoing pain we need to all remember to take regular movement breaks during the day.  Exercising or being active for an hour after sitting all day is not enough.  We lead much more sedentary lives than we used to thanks to, such as, advancing technology and more use of our cars.  With the pressures of modern living it is important we think of ways to add in more regular movement into each day, creating new movement habits with regular practice.  Maybe this could include walking to work, parking the car further away from work or getting off the bus a few stops earlier, going to speak to someone in the office instead of sending an email, doing some squats whilst the kettle boils, standing during a phone call and going lifting alternate heels, there are many possibilities!  During the day remember to take regular movement breaks, these little movement snacks will also help your concentration and attention as well as your body.

I have noticed some common questions from people with persistent pain, including:

1. What exercise is helpful?

When choosing the exercise consider:

• Does it help you achieve your goals, maximize or maintain function?
• Do you enjoy it?
• Is it meaningful?
• If there is a variety of the types of exercise (mix of cardiovascular, flexibility, strengthening)
• Is the level achievable for you at present or do you need to modify some of the variables (see dosage tips below). Think of the Goldilocks rule – not too little, not too much, just right.
• Do you feel confident in modifying the variables or do you need to explore this with a physiotherapist?
• Do you understand your pain and have a toolkit that helps when you have a flare up?
• Do you have an understanding of pain not necessarily being correlative of what’s happening in the tissues – hurt doesn’t equal harm?

2. How do I know what’s enough for me and how do I avoid pain flare-ups?

For ages 19-64 The World Health Organisation recommends 150 minutes a week (30 minutes a day) of moderate intensity aerobic exercise (e.g. brisk walk, cycling, slow swimming), or 75 minutes a week of high intensity/vigorous aerobic exercise (e.g. running, a game of tennis, fast swimming), and twice a week strengthening of all major muscle groups.  Moderate intensity and high intensity aerobic exercise can be mixed, it has been said 1 minute of vigorous/high intensity aerobic exercise equates to 2 minutes of moderate intensity.  This amount of exercise could be something for you to work towards.  For some people with long-term conditions it’s not achievable, which is ok as long as the level of exercise being done is enough for adaptability.

What’s enough for one person may be too little or too much for another so this needs exploration, if it’s not something you feel confident to do on your own a physiotherapist can guide you. Remember the goldilocks rule here – not too little, not too much, just right! The only way we find what’s best for us is by testing and exploring, we learn through experience.  It’s important to remember a little bit of pain flare-up with persistent pain is ok, by a little I mean that it settles within 24 hours and doesn’t affect your daily function.  We need enough challenge for adaptability of body and nervous system and this can mean a little flare-up, sometimes we initially aim for no flare-up to build confidence and calm things down, we need to remember to build things up.  Start where you are at, find your baseline, if you have persistent pain this baseline needs to be a level where you don’t have a big flare-up that lasts a few days or longer (in the traffic light system below that’s red).  Find a level that feels achievable and comfortable for you.

The traffic light system:

You mainly want to be exercising in the green, amber is ok yet either needs increased awareness, a little adjustment to proceed, or modulation to change to a green light.  An amber light can mean too much too fast and needs evaluation, red is stop and significantly modify what you are doing and possibly seek guidance from a physiotherapist if needed.

Red – there is a severe flare-up during the exercise, 7 or more on a 0-10 scale, you don’t feel safe/are worrying about causing more pain or damage.  The pain flare continues after exercise for between 3 days and several weeks and you have a significant loss of ability in your daily function.   You need to stop when in the red, seek advice from a physiotherapist if you are often in the red.

Amber – pain flares during activity of 4-7 on 0-10 scale, yet you know you are safe.  This is a pause and proceed with awareness light, notice what happens as you continue and if things are settling or not continuing to intensify continue for few repetitions or 1-2 minutes. Afterwards pain persists by up to 3 numbers above your baseline and settles back to baseline within 24-48 hours, and only minimal effect on daily function.  If the after affects are longer or function is more affected make sure the next time you are in amber you modulate to green.  You may need to use some tools from your pain flare toolkit to help things settle.

Green – pain flares during activity 0-4 on 0-10 scale and settles in less than 24 hours with no loss of function.

When you know your baseline work there for a week, with a green traffic light, and if you feel confident to increase this the following week add a small amount more e.g. 5 more minutes duration or a 1-5% increase.  Remember hurt doesn’t equal harm, yet with ongoing pain when the body and nervous system are sensitive we need to calm things down, so working in green is the most helpful place to be.  We need enough challenge for adaption which may mean a little flare up, as the green shows.

Dosage variables you need to consider and can modify:

(Think Goldilocks here!)

• Frequency – how often you exercise each week
• Intensity – exertion level or amount of weight lifting
• Duration – how long each session is
• Type – cardiovascular, strength, flexibility/mobility
• Load – all the things that affect your homeostatic balance (e.g. sleep & stress)

If every day is too much for moderate intensity exercise start with every other day or even twice a week, it doesn’t matter where you start, remember it is more important that you know your baseline and make a start.  You could split the duration into two 15 minute moderate intensity aerobic exercise sessions rather than one 30 minute one to start with.  Make sure you do a mixture of exercise to include cardiovascular, strengthening and flexibility/mobility.

3. What to do if you have a flare up

• If you have a big flare up it can be a result of a combination of factors, rather than just exercise, for example imagine you have slept badly for few days, have more stress at work (increased load on your systems affecting homeostatic balance) and you do your usual level of exercise and experience a big flare-up and instead of being in green on the traffic light system you are in amber tipping into red or maybe you are in the red.  When this happens reflection on all the factors affecting you is important, modulate what you can and seek help when needed.
• What traffic light are you using, make sure you are in the green and re-evaluate your baseline.
• What tools do you have in your toolkit to help (e.g modulate activity, a little more rest between activities, meditation, hot bath).
• If having repeated flare-ups that you are struggling to manage seek help from a physiotherapist.

A few tips for awareness & modulation of mind & body when exercising with persistent pain:

• Notice what you are thinking – do you feel safe or are you worrying about a pain flare? If you don’t feel safe, make some adjustments so you do and then re-evaluate.  If you are worrying about making pain worse it usually does as systems are already on high alert.
• How are you feeling? Do you feel confident and safe or do you feel unsure and anxious?  If it’s the latter what can you do to change it, what do you need to know or feel to feel more confident and safe to exercise?
• Notice what happens to your breathing, are you holding your breath? If so can you soften your breath. Remember your breathing will change with moderate intensity exercise.
• Are you holding more body tension than is needed? Can you modulate it? If not change what you are doing to make it a bit easier & re-evaluate.

Tips for sticking to your exercise routine:

• Know your strongest motivators.  I talk to people about peeling back the layers like removing layers on an onion until you get to the core.

• Exercise with a friend or family member.

• Make sure the exercise you choose is enjoyable and/or meaningful to you.  Have fun, play, and be creative.

• Vary your exercise, maybe every 4-6 weeks, even a small change is helpful.  This is helpful for physical adaption as well as mentally.

• Set aside some time each day, if something else gets in the way that’s ok you can adjust your timetable.   If it is commonly being replaced by other things look at why: maybe you haven’t yet revealed your deepest motivators, maybe you are anxious about causing more pain, maybe you don’t enjoy the exercise you are doing, maybe you are not seeing changes and are wondering if it’s really helpful (you may need to seek help if this is happening or you may be able to explore and make changes yourself).

• Keep a record of what you have done each day you exercise.  Reflect on this at the end of each week and then plan next week’s exercise.

Summary

In summary, understand: what exercise you enjoy and what exercise is meaningful to you, your motivators, where your baseline is and think green traffic light; that there are different variables you can modulate in the dosage.  Remember hurt doesn’t equal harm and change is always possible.  Make regular movement snacks part of your daily routine. Seek help from a physiotherapist if needed.

The post Exercising with Persistent Pain appeared first on Unity Physiotherapy and Wellbeing.

Living well with pain means being able to do the things: that are important to you and that matter most; the things you need to do; and doing the things that look after your health & wellbeing daily (including practices that help change pain, such as nervous system calming activities, with pain in the background.

There are many aspects involved in living well with pain, these need exploring and tailoring to what is most helpful for each individual.  Living well with pain and full resolution of pain (in reality the latter doesn’t happen for many people) takes time, flexible persistence, practice and compassion, to name a few of the important things.

Living well with pain needs an understanding of the changes that happen when pain persists along with an individual toolkit of things that help look after your health & wellbeing.  This blog will look at some of the aspects of living well with pain (whilst it changes in the background), and how we can do what matters most.  All of the aspects covered in this blog are either already blogs and resources on the Unity Physiotherapy & Wellbeing website or they will be in the future.  At the end of this blog you will find a link to a pdf resource document that has a few tips for the different aspects mentioned in this blog, along with a list of resources that are I feel are helpful and use with people in clinic.  This resource list is not exhaustive and there are many more (you can also find a longer list of resources on the Unity Physiotherapy website).

Tina, who lives with pain and runs livingwellpain.net created the helpful 25 elements of living well with pain diagram below (used here with her kind permission), and she has written about 10 of these in a blogs here http://livingwellpain.net/category/25-ways-to-manage-pain, you will find some of these woven into this blog.

Understanding Pain

Ok, this is complex! I am not going to go into the complexities of pain or the neuroscience in this blog, although understanding this and how this relates to you can be helpful.  Many books delve into this in varying levels like Explain Pain & Explain Pain Supercharged (the latter is more technical read) and there are many great articles and blogs too (some are listed at the end of this blog).

Understanding the different aspects of pain can help you understand that pain is a protection mechanism and systems can become overprotective, how different systems adapt when pain persists and that they can adapt again in a helpful way.  Understanding pain includes understanding why, for example, things like hurt doesn’t necessarily equal harm, pain cannot be found on scans (we are much more than a sum of our parts), pain is a protection mechanism and a poor reflection of what is going on in the tissues, movements and activities become associated with pain and are not necessarily causing harm.  It’s helpful for your friends and relatives to also have an evidenced based understanding of pain and how this relates to you.  An evidenced based understanding means having an awareness or a more in-depth understanding of what the research tells us about pain, and knowing what myths exist in society (there are many myths!).

(image edited, Nivens, Shutterstock)

Everything that contributes to us being human can contribute to pain, so that’s a lot of things!  I would be here forever if I listed them all, to give you an idea here are some of the factors that can contribute to pain: biological factors (everything including thoughts are part of our biology), a sensitive nervous system and body (includes the immune system), not feeling safe to move, not trusting your body, beliefs, values, how we interact with the world, attention, opinions of others, previous experiences, myths about pain, expectation, self-criticism, thoughts, feelings and emotions, stress, lack of connection, avoidance, nutrition, overdoing and underdoing things, lack of purpose, feeling no-one understands, and much more.

Pacing

There is no agreed definition or set way to do this.  In my mind pacing is essentially a flexible daily structure of what’s helpful for you.  There are no set rules, no-one paces the same way because no-one walks in the same shoes, even though we create similar footprints.  What we learn from what the evidence tells us can help, as well as from each other’s paths and footsteps.  Learning how to pace and manage pain is a journey of exploration that takes many directions.

When pain persists people commonly either stop doing what matters most to them, lose purpose, or push on through things (boom-bust cycle) which commonly further sensitises things (creates more protection).  I have heard it said for pacing ‘stop before you think you need a rest’, as a general rule this is not needed, although it can be part of a strategy to calm things down when you are having a flare-up or with, such as, neuropathic pain.

Have a compassionate & flexible plan as a guide when things get challenging

Life is always changing there is no constant, things are in a constant state of flux and this includes pain.  Sometimes that flux changes significantly, sleep quality and function are affected, this is often referred to  as a pain set-back or flare-up.  It is important to know what helps when things flare-up, to help calm things back down, and approach things in a flexible and compassionate way.

Be compassionate with yourself, flare-ups are common and not a fault of anyone.   Self-compassion helps in many ways including: quietening self-criticism, modulating feelings like guilt, anger and frustration, and decreasing rumination (all of these turn up the pain volume and can contribute to anxiety).  Self-compassion can also help with pacing and knowing what’s helpful, as well as making wise choices that can help nurture overall health & wellbeing.  It’s important to not stay at the reduced level for too long, as you will accommodate to this; this is one reason a flexible plan, that incorporates building things back up gradually, helps.

Sleep

Getting enough good quality sleep is essential for our health and wellbeing, usually this is around 7-9 hours.  When living with pain, lack of sleep commonly means we notice more pain, are more sensitive to stimuli (eg react to less movement) and more easily feel stressed.  There are a number of things you can do to help give yourself the best opportunity of good sleep.  There are some tips in the resource accompanying this blog.

 Exercise

Exercise is essential for our health and wellbeing and is helpful in living well with pain, yet there are differences in how our nervous systems and bodies react to exercise when we live with pain.  Some people find exercising daunting due to significant increases in pain as a result.  It is important that the exercise you do is something that you enjoy doing and you explore what is the right level to start with.  Exercise is important for many reasons, even if it doesn’t modulate pain (it does for some), it helps you keep strength and tolerance to keep doing what matters.

There are a number of aspects you can modulate with exercise, like frequency, repetitions, speed, and intensity.    This is a link to a blog I wrote on exercising with persistent pain, it gives some more information and general guidance https://www.unityphysio.co.uk/exercising-with-persistent-pain/.  My blog and the following blog (written by physiotherapist Thomas Jesson) provide general guidance and are not intended to replace individual medical advice https://medium.com/@thomas_jesson/exercising-when-it-hurts-a8b70f7b1ebf?_referrer=twitter&fbclid=IwAR3ohbyxL7QSRzfkg1jmtHNRnxJW_ouHYD8Tm_Ql_8_88EtLBNGlPiS2pcQ

Language

What we say to ourselves (our self-talk) matters.  How we talk to ourselves is a habit that we can change.  Part of being human is we are wired to focus on the negative and to compare ourselves with others.  We can train our language and how we relate to ourselves to be more helpful.  Commonly when living with pain self-talk is often self-critical, this is part of our threat system and can contribute to systems staying on high alert which increases pain.  There are some tips about language in the resource associated with this blog and more information and exercises in my pending book. 

Acceptance

Acceptance is important for us all, life is tricky and we all have things to deal with that are challenging.  There is a common misconception that acceptance is passive and that it means giving in or that we are happy to leave something as is, it doesn’t.  It’s important to know that all any of us can do is accept things as they are in the moment, not as they will be tomorrow or next week, it’s an ongoing process not something we only do once!

Acceptance means being able to allow things to be present, with compassion, awareness and understanding, without pushing things away (avoiding), dropping the struggle and living well despite pain being present.   This doesn’t mean pain won’t change, it will, instead it means pain is no longer the focus, and we are not putting life on hold waiting for the next thing that someone says will get rid of it (this commonly increases the pain and affects our mood).  Instead of pain being the driver we can learn to put it in the back seat and let it be there, acceptance is one part of doing this without trying to push it out of the car (this uses so much energy and focus!).  Who knows one day it may move further away and we can move it to sit on the car roof!

It’s important to remember pain can, and does, change even though for many it doesn’t fully go away it can.  Acceptance helps us steer in the direction of what’s meaningful.  Accepting you have persistent pain helps you take pain out of the driving seat, take back control again and steer in the direction of the things that matter to you in life even if pain is in the background.

Meaning, Purpose & Connection

One of the things, ok three things, that are particularly important are meaning, purpose and connection, these are inextricably interlinked.  I have lost count of the number of times that someone has said ‘I feel like I have no purpose.’  This relates to not being connected to oneself and others, not living aligned with what’s most important (this is usually aligned to our values).  By knowing what your values are and setting goals alongside these you can start to reconnect to what’s most meaningful to you.  Our work can be part of our purpose and its helpful if it is, my work is connected to my purpose in life and my values.

When we stop doing what’s meaningful we lack connection to ourselves and others which is important for our wellbeing.  When we do what’s meaningful to us, and when we feel connected to others, helpful neurotransmitters are released (chemical messengers) too that help modulate pain and help us feel happy, content or relaxed.  Connection and compassion are both important for our wellbeing.

There is opportunity within the pain to steer towards what matters, to be guided by your values and let go of some things that don’t serve you and those around you.  A lot of people say to me they are grateful in some ways as they come to see what’s most important, living with pain I can relate to this.

*This blog is intended as general information and guidance and is not intended to be individual medical advice*

Link to tips for aspects discussed in this blog 

Resource alongside living well blog

Resources

Books:

• Explain Pain by David Butler & Lorimer Moseley
• Painful Yarns by Lorimer Moseley
• Pain Heros by Alison Sim
• Understand Pain Live Well Again by Neil Pearson
• The Compassionate Mind Workbook by Chris Irons & Elaine Beaumont
• Compassion focused Therapy for Dummies by Mary Welford
• The Mindful Self-Compassion Workbook by Kristin Neff & Christopher Germer.

Blogs:

• Livingwellpain http://livingwellpain.net
• My Cuppa Jo blogs https://www.mycuppajo.com
• Pain Chats https://painchats.com

Other resources:

• Pain Toolkit https://www.paintoolkit.org

The post Living Well with Pain appeared first on Unity Physiotherapy and Wellbeing.

‘An unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage’, and is expanded upon by the addition of six key Notes and the etymology of the word pain for further valuable context.

• Pain is always a personal experience that is influenced to varying degrees by biological, psychological, and social factors.
• Pain and nociception are different phenomena. Pain cannot be inferred solely from activity in sensory neurons.
• Through their life experiences, individuals learn the concept of pain.
• A person’s report of an experience as pain should be respected.
• Although pain usually serves an adaptive role, it may have adverse effects on function and social and psychological well-being.
• Verbal description is only one of several behaviours to express pain; inability to communicate does not negate the possibility that a human or a nonhuman animal experiences pain.’

Pain is a Protection Response

Pain helps keep us safe, it’s a response to actual and potential damage.  It’s part of our survival system (fight-flight system), our brains are wired to detect threat and keep us safe from harm, its part of our evolution.  Our brain creates pain from its best guess to predict what is needed, using all the information it has available (eg current sensory feedback, previous experiences, beliefs and expectations), and if protection is deemed as needed we experience pain.  This all happens really quickly!  Pain is contributed to by the whole person and their world, not one body area, it is a whole person experience.

So, it is understood that pain is part of our threat system, it is there to protect us and keep us safe.  What does pain do?  It changes our behaviour, how we move, how we think and how we interact with our world.  These things are important as they can be part of the suffering or part of living well with pain.  Having awareness and understanding of these things helps us create some balance and make changes.  Awareness of what is happening within the whole of you in relation to your world is important in making changes, seeing the possibilities within what you once thought was impossible, and learning to live well with pain whilst it changes in the background.

Sometimes our nervous system gets a little too good at protecting us, creating a pain response when there isn’t really any danger, this is believed to be the case in persistent pain.  Part of changing, and living well with pain, is providing our nervous system credible evidence of safety through experience.  This needs daily practice.

Overprotective systems doesn’t mean that we can think ourselves out of having pain, it doesn’t work like that!  Although cognitive factors and mindset are important in making changes.  Nor does it mean we can ignore things and push on through to get things done, this commonly turns up the pain volume and increases sensitivity to certain stimuli associated with pain, for example: certain movements, standing or sitting still, certain activities can all be associated with suffering.  Responses to all of these things vary depending on the context, previous experiences, and what evidence your brain has of safety.

Anything that ramps up the threat system has potential to turn the pain volume up, this includes: worry, rumination, self-criticism, guilt, anxiety stress, lack of sleep, how we see pain, how we see ourselves (for example, people commonly lose trust & confidence in their body and consequently in themselves), and feeling there is a lack of support or understanding from others.  Understanding what’s activating our threat system and what helps balance this (soothing system activities) are helpful in modulating things and living well.

Have you ever noticed what happens when your threat system is stimulated?  What happens when pain increases or when you are expecting it to increase?  Commonly there are breathing changes, people hold their breath and there is excess tension in the body.  I know I have done this, have you?  When we are aware of our responses and how we are embodying pain we create the most opportunities for making changes.

Pain is Weird

Can you imagine life not being able to feel pain?  This may seem appealing at first glance and yet is isn’t!  This is the reality for a small percentage of people who have a rare congenital insensitivity where they can’t feel physical pain, not even a low level discomfort.  This makes life very challenging and only a few people with this condition reach adulthood, as their assessment of potential risks is affected and they don’t get any early warning signals that something is potentially dangerous.  Imagine not knowing your hand is on something hot and the consequences of leaving your hand on it, burns are one of many risks for these people.  When pain persists we know that the early warning signal goes off too much & too early, when it’s not really needed.  It’s a bit like a brake light sensory reacting to a leaf or when there’s nothing there.

We now know that pain is often a poor reflector of what is going on in the tissues, you can have lots of tissue damage and no pain, or no damage and pain.  This is a famous story that was written up in the British Medical Journal, picture this, a builder jumps off a ladder as he was coming down it, he had a lot of work to get done.  He saw a nail heading for his foot, the nail went through his boot (note your reaction to reading this), he is screaming in agony.

He is taken to hospital and had to be sedated due to the level of pain.  The boot was removed and it was found that the nail had gone through his boot and in-between his toes.  No tissue injury and lots of pain, amazing isn’t it.  What he visually saw during the jump will most likely have ramped up the threat and potential danger messages which were interpreted as danger, the brain deemed protection was needed.  Did you notice a reaction as you read the first sentence where the nail went through the boot, if so what? Maybe it was a hold of your breath, a gasp, or a visceral reaction, maybe you didn’t have a reaction.  It is amazing that we can have a physiological response to reading a few words isn’t it.

Another example of a lot of pain and no tissue damage is phantom limb pain.  For example, have you heard of someone having pain in their toes when their foot has been amputated.  Isn’t our body and brain amazing.

On the flip side of this there have been many reports of people sustaining serious injuries and not having pain, including soldiers losing limbs and not needing medication.  The understanding of the latter being the soldiers were returning home which decreased the threat.

Changes in structure of the body do not necessarily mean there will be pain, suffering, or loss of function.  Think of Usain Bolt, he is the fastest man on earth, he has scoliosis and he isn’t slowed down by this and doesn’t suffer with pain.    Changes in structure don’t necessarily equal pain.  One big myth is associated with changes on MRI scans, we know that pain is poorly correlated with things like disc bulges and disc degeneration which are normal age related changes which are found in a high percentage of people.

Vicious Cycles in Pain

It is important to build awareness of the cycles we get stuck in to be able to make changes.  These are two common vicious cycles:

• Pain decreases someone’s sleep which increases the sensitivity to stimuli and turns up the pain volume. Lack of sleep affects stress levels and this turns up the pain volume too.  When we are stressed we sleep less well and so it goes on until we learn what can help.  Can you relate to this?
• Each time an activity is done and the pain is worse, it becomes linked to causing pain and expectations of this experience.  Gradually people commonly stop doing the activity.  This commonly affects their mood as they are no longer doing what is meaningful to them, this also increases the suffering.  Other things happen as consequences of doing less and less, including fitness decreases which means the tissues tolerate less load, as well as being sensitive (reacting to stimuli more quickly).

Why does Understanding Pain Matter?

It helps us to understand how we can live well with pain whilst it changes in the background.  Understanding pain helps us to understand a number of things including:

• Pain is a protection mechanism that is contributed to by many things and doesn’t necessarily reflect what is going on in the tissues.  Hurt does not necessarily equal harm
• Systems are always adapting and we can influence this, one part of this is calming systems down
• When pain persists we know messages are more easily sent to the brain from the body and the brain gets really good at providing protection.
• We can see how avoiding activities, or pushing on through ignoring pain to get things done, are both unhelpful.
• Our brains predict what’s needed, when protection is deemed to be needed we experience pain.  This is contributed to by many things including: how MRI scans have been explained, previous experiences, how we are engaging in activities and our whole life, sleep and stress.
• It helps us see things can change, even if pain doesn’t fully go away, and that we can learn to live well whilst pain changes in the background.

(Image adapted from Nivens, Shutterstock)

I help people make sense of pain neuroscience in relation to themselves in their world as part of exploring how they can live well with pain, whilst pain changes in the background. Understanding this on a cognitive level alone is not helpful as we learn through experiences.   This means it’s important to explore understanding through experiential learning.

Know that the suffering can change, you can live well and have a life full of meaning even if pain comes along too (it’s ok you would rather it didn’t, that’s normal).  This doesn’t mean it won’t go away, it might and does for some, even though for many it doesn’t.  Instead it means being able to fully engage with life whilst pain is in the background rather than putting life on hold and trying to ‘fix’ it.  This generally isn’t helpful and commonly has the opposite affect and increases pain and suffering.

Pain is Always Real & What You Say it is

There is one thing I really want to highlight here and that is that pain is never all in your head, I know some people can be made to feel this.  When people first see me in clinic, or for an appointment online, they are often grateful when they realise that they don’t have to prove what pain they are in and it is exactly what they say it is.  Feeling not believed and like you have to prove your experience of pain stimulates your threat system and can turn up the pain volume.  Pain involves body and mind, these can’t be separated, it is a whole person experience.

Change is Possible

Pain can and does change even if it doesn’t fully go away it doesn’t mean suffering with it.  A number of things are important in changing pain including: understanding pain, awareness of your whole self, self-compassion, acceptance (this isn’t passive and doesn’t mean giving in, it means dropping the struggle, calming the threat system down, being able to be present and enjoy life), physical activity/exercise, sleep, calming the nervous system down, connecting to meaningful activities, and daily practice as part of a way of life.

A mantra at Unity Physiotherapy & Wellbeing  is:

‘Connect to Yourself & Others With Compassion, Calm Your Nervous System, Create a Life Full Of Meaning’

A Few Important Points to Remember:

• Hurt doesn’t necessarily equal harm (pain is a poor reflector of what is happening in the tissues).
• Pain is there to protect us, sometimes our systems get too good at doing this, as is the case with persistent pain.  Calming systems down can help you make changes.
• Understanding pain can help you change pain – ‘know pain all gain.’  Though this is not enough in isolation, we learn through experiences (we can reinforce where we are or make changes through our experiences).
• Pain is always real and it’s a whole person experience.
• Awareness is a foundation for change.

Here are some links that could be helpful:

A patients understanding of persistent pain

http://livingwellpain.net/a-patients-understanding-of-persistent-pain

Our blog page https://www.unityphysio.co.uk/blog/

The post What is Pain? appeared first on Unity Physiotherapy and Wellbeing.

I am referring to recovery from suffering with pain to living well in this blog as being able to live a values aligned life that’s full of meaning, with pain being in the background.  Let’s get the clouds cleared and say now that pain can and does change, it even fully goes for some people though this is a low percentage of people.

Very little in life is linear, recovery from suffering with pain to living well with pain certainly isn’t linear, it can look pretty messy.  If you tried to draw pain recovery it would most likely look like a child’s scribble.  Just as children learn through scribbling how to draw we can also learn through suffering with pain how to live well again.  There can be small ups and downs, big dips, sometimes steep rises and lots of back and forth moves.  Life in general is messy, it’s often not plain sailing and it can be helpful to recognize the resilience we have built in the tricky waters.  We have things that help as we sail including our crew, a lighthouse, a map of our favourite destinations, a compass, understanding the weather and the current changes, and of course an anchor (or a few different anchors).  Want to know what a compass, lighthouse and a crew have to do with recovery from persistent pain?  Keep reading…

What Has a Crew, a Map, a Compass, an Anchor & a Lighthouse Got to Do With Recovery From Suffering With Pain & Living Well?

All of these things work together, so for example when a rest is helpful if the water is not still enough to rest safely we can drop anchor to add some safety.  An example in life could be when things are busy, we have a lot to do and are feeling stressed, it’s is likely that if we simply sit to rest our minds will carry on and our fight-flight system doesn’t get chance to down regulate.  One thing we can do is sit and focus on our breathing and do a breath practice like soothing rhythm breathing (used in compassionate mind training), or we can practice a meditation or another grounding practice.  Anchoring our mind in our bodies, staying fully connected to the present moment and restoring some balance in the autonomic nervous system are all important and help us live well with pain and can help change it too.

Our crew are important, one really important crew member is our compassionate self, I see the compassionate self as the chief officer.  The chief officer shares compassion with the captain and all the crew and also extends this further afield to passing boats, helping everyone to navigate the tricky water.  We all have a critical voice, it’s part of being human, and when we are suffering with pain this voice commonly gets quite loud.  When we have a flare-up guess what the self-critical voice often gets even louder alongside more threat based feelings & emotions like guilt, frustration, anxiety and shame.  These all ramp up the pain volume, it’s one of the common vicious circles in pain.  Self-compassion has been shown to help decrease self-criticism and modulate threat based feelings & emotions.  Self-compassion is also a more sustainable place to motivate ourselves from than self-criticism, it doesn’t have the drawbacks that self-critical motivation has.  Compassion is also important because it’s been shown to help decrease stress, increase resilience and generally be helpful for our wellbeing.  Gilbert et al (2017) showed that self-compassion and self-reassurance overlap and that self-compassion mediates the link between self-reassurance and wellbeing.

Other crew members could be family and friends, maybe a pain specialist clinician, and things like exercise/movement and sleep.  Sometimes some of the people in our crew need teaching about pain as there are lots of myths and misconceptions around pain.  Everyone having an up to date evidenced based understanding of pain and how this relates to you is important.  Understanding pain could be seen as a crew member too.  All the crew members work together to nurture our health and wellbeing, all are important, some of the most important could be said to be: regular exercise/movement, sleep, good nutrition, connection and compassion.  Here’s a link to the exercise and pain blog I wrote about exercising with persistent pain  https://www.unityphysio.co.uk/exercising-with-persistent-pain/

Apart from nutrition different aspects that nurture our wellbeing (our crew) are all also discussed in detail in my book, Dancing Through Life: A Guide to Living Well.  The PACE’s & SIM’s, the key concepts in my book, could be a useful summary of the crew so I have included the PACE’s & SIM’s summary diagram from the book here.

A little note on exercise, some people prefer to relate to this as movement as they have unhelpful associations with exercise & it’s linked to threat for them (I cover this in my book).  Exercise is important for many reasons including that it helps enable us to do what’s most important (along with other crew members like sleep, nutrition and self-compassion).  Engaging in meaningful activities can in themselves be the exercise/movement, like in my second example in the meaningful activities & flare-up sections below.

The places we like to visit (things that bring things like joy), our compass and lighthouse help us navigate all the different changes in weathers and currents.  The places we like to visit are what’s meaningful to us in life and our compass is our values, our direction of travel (values as a compass metaphor – Hayes et al., 1999).  The lighthouse helps us connect to our purpose, what feels like home and is also meaningful, even when we are feeling lost at sea it glimmers in the distance.  Some people find it tricky to relate to purpose, if that’s you that’s ok, think of it like the deep why’s behind what you do and see if that helps.  Meaningful activities are commonly stopped when people are suffering with pain, reasons include fear of making things worse and/or not feeling able to do things.  The flip side of this is that by stripping life of meaningful activities this in itself turns up the pain volume as does the fact that we lose fitness and tolerance for different activities.  Meaningful activities also release feel good chemicals that nurture our wellbeing and may modulate pain in some instances, so there’s added benefit.

Meaningful Activities and Flare-Ups

Sometimes the word set-back is used instead of flare-ups, sometimes increased pain volume, or other terms, you can use which ever term you most relate to.  Some things when living with pain are worth a flare-up and some just aren’t!  Usually things that are meaningful and connected to our values are worth the pain volume being a little louder and we can plan to focus more on things like rest and relaxation for a few days after.  I usually ask people if the benefits of doing something outweigh the consequences as a way of helping their understanding, and mine, around their meaningful activities and being able to engage in them.  Sometimes the answer is no, this is usually when the value associated with the activity isn’t one of the core ones, or when pain is a strong leader, or flare-up management strategies are lacking.  Sometimes we need to consider specifically how a meaningful activity is done to make it possible too.

As well as having specialised in pain I live well with it too.  Here are two real life examples of meaning and values in action as part of living well with pain.  Recently I went to see my youngest niece on her birthday, within the new covid rules of meeting outside, she had received a trampoline for her birthday.  I noticed I wanted to have a go and I also noticed a memory of the significant pain flare-up from a very brief play on a bouncy castle at her party three years before.  So, there were some contextual similarities (my nieces birthday party, something bouncy (even though a trampoline’s different to a bouncy castle).  I knew that I was ok to do it, that I was safe (hurt doesn’t necessarily equal harm), my body and mind were calm, and so I connected to having fun and choosing to play.  What else helped, I also knew that I could rest and pace things differently over the next few days if it was needed.  What happened?  I didn’t bounce that long and had great fun (ok technically I had another go later!) and as it happened things didn’t flare up either so my systems are either less sensitive than they once were or it was because a trampoline is different to a bouncy castle, I suspect it’s both!  This was meaningful to me as I value time outdoors, play, and time with family.  Would I have been fine with choosing not to have a go?  Yes as two other values were still present and it was a meaningful event, yet I wouldn’t have known if it was possible and I would not have and the joy and energy from bouncing on the trampoline.

Following on from bouncing on the trampoline three days later I went for a walk with my sister, niece & nephew.  The children were on bikes so there was lots of running alongside the bikes!  I hadn’t planned this and noticed a couple of thoughts relating to pain & fatigue, I unhooked from these thoughts and went with it, knowing I could have two days where I could adjust how I paced activities and incorporate more rest if needed.  Ordinarily I would have paced running, however when young children are on bikes this wasn’t an option and I chose not to stay attached to this meaning doing more running than I have tolerance for!  It was great fun & brought much joy.  This again was a very meaningful activity that I made a mindful choice about engaging with.  This isn’t something I do regularly, the exercise I do regularly & other practices helped me to be able to do this.  I wasn’t bothered if things did flare as the activity was absolutely worth it and I knew I could find a way through any flare-up.  I have many more examples from myself and patients where some activities have increased pain volume for a little while and some that haven’t, as this blog is already pretty long let’s go to the summary.

Summary

• What’s on your compass (there’s an example below) – know your core values and how you can live aligned with them
• What does your map of your favourite destinations look like – what activities are most meaningful to you now and why (I will take a guess – they are linked to your core values)
• What’s your lighthouse- what gives you purpose or what is your purpose? What are the deep whys behind what you do?
• What are your anchors (what helps you be present and anchors you in your body, e.g. mindfulness practices, compassion practices, meditation or breath practices)
• What helps when things flare-up – e.g. do you pace things differently or focus on rest and relaxation for a few days, maybe you use your anchors more
• Who are your crew (compassionate self, family & friends, understanding pain, exercise/movement, sleep, nutrition, compassionate self).

References

Gilbert, P,. et al.  (2017).  ‘The development of compassionate engagement and action scales  the self and others.’  Journal of Compassionate Healthcare, vol. 4(1), pp 1-24.

Hayes, S.C., Strosahl, K,D., & Wilson, K.G. (1999).  Acceptance & Commitment Therapy: An Experiential Approach to Behaviour Change.  New York: Guilford Press (to the best of my knowledge this is where the values as a compass metaphor was first used).

Parkinson, A. (2020).  Dancing Through Life: A Guide to Living Well.  UK: KDP (all images except values compass)

Parkinson, A (2021) Values Compass Image.  First used in this blog and associated e-book.

Bibliography

Gilbert, P.  (2009).  The Compassionate Mind.  London: Little Brown Book Group.

The post Meaning, Purpose & Values in Recovery From Suffering With Pain to Living Well appeared first on Unity Physiotherapy and Wellbeing.