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 similar and different to pacing for ME/CFS and long covid (where post exertional malaise is present), 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 system activation, decreases our tolerance levels for the activity being avoided and often also tolerance 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 gets overreacted to (we become more sensitive to it) often includes sitting and standing still and moving a certain way.  When systems are super sensitive all movements can trigger a protection response, doing certain activities and even thinking about doing a particular activity can create a pain response.  A quick note here about cause and pain, rarely does one specific thing cause pain or an increase in it, it’s complex and there are many variables that 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 too, 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 can potentially modulate pain
• Pacing can help with both nervous system regulation and retraining the nervous system.  So, it can be part of both managing and changing pain over time
• 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.

I use 5 P’s with people for pacing, if they find this helpful, these are planning, prioritising, play, purpose & problem solving.  I have a pacing handout, that includes these that I offer to the people I work with who are struggling with persistent pain, to support their exploration of pacing.

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.  Including a variety of activities, including exercise, in pacing is important, finding what’s helpful for you needs exploration.  There is a link to an exercise and persistent pain blog that 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 activities/tasks 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 the people who attend my 8 week Creating A Healing Path workshops for people with pain/fatigue/anxiety, and my 4 week nervous system regulation workshop series to do this.  Even though we didn’t specifically cover pacing in my Creating A Healing Path workshops 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 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:

• Planning & prorating tasks
• Problem solving
• 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 workshops  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 & integrative somatic practitioner 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, or the 4 week nervous system regulation workshop series click the links below:

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

https://unityphysio.co.uk/services/listening-to-our-inner-wisdom-workshops/

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.

I’ve especially been considering healing in relation to trauma, persistent pain, ME/CFS, long covid, PoTS and other long-term conditions, which is probably because these are the areas I work within and have lived experience of some too.   Many people are healing from trauma and/or a long-term health conditions in our modern world.  Last week I read in a new report by The Health Foundation it has suggested that 9.1 million people in England are expected to live with a major illness by 2040 and that a significant proportion of this will be related to certain conditions, including anxiety, depression, chronic pain and diabetes.   In my opinion there are many factors that need consideration here including healing and the innate connectedness that we need to reconnect to and nurture.

What does healing mean?

There is no agreed definition of healing, healing in acute terms means repairing damaged tissues, or fixing an injury, for example.  Things get complex when it’s not a simple acute injury and there isn’t a specific time frame to heal or repair the wound/injury.  When there are, for example, layers of trauma, or many symptoms from fibromyalgia, or someone is living with persistent pain healing becomes trickier to define.

Before reading on I invite you to consider what healing means to you?

I think we could say that healing is always an individual experience that involves reducing or transforming suffering.   However, if we were to say healing is only a change in suffering this would be a simplistic view, especially as suffering is complex and it is always changing, everything is always changing, and because healing is about more than the suffering or struggle that is part of the picture.

Another thing to consider with what healing means is that it may or may not mean full resolution of pain, anxiety, or other symptoms.  Often people have shared with me themes around alignment with their heart and what’s meaningful, connectedness and wholeness as part of what healing means to them, and these are things I can relate to from my own healing journey too.   Some people may say that not feeling whole implies that something is broken and needs fixing.  I don’t see it this way and instead see it as a disconnection from our true selves, disconnection from nature and a disconnection from the wider whole/universe (there are different terms for this, it can essentially be seen as something bigger than ourselves).  Although we may at times feel broken we never really are, our true self is like the sky in that it is always there and can never be broken and the weathers come and go.

A journey to wholeness is something I see as a heart based connection, a connection to meaning and purpose, to a sense of belonging, and to the love, trust and compassion that’s within us all.  We could maybe say that healing is a coming home to ourselves, reconnecting to our inner wisdom and connecting to the interconnectedness of everything.  I would say healing is also an alignment of mind, body and heart, a place where we can live fully connected from an open hearted presence with a gentle strength and love.  We will explore this a little more in part two of the blog.

I think that it is helpful to consider what nervous system regulation means in the context of healing, especially because we can’t heal with a nervous system that is dysregulated too often/too much.

What is nervous system regulation?

Nervous system regulation includes the whole nervous system and is often discussed in terms of the autonomic nervous system.  Everyone’s nervous system dysregulates many times a day and then re-regulates, the problems come when the nervous system is dysregulating too often or too much relative to the context and not re-regulating well.  A well regulated nervous systems helps us to feel safe or safe enough to be fully present and to engage with others and the world in general, and it helps all of our systems to function optimally.

There isn’t an agreed definition of nervous system regulation, this is one that I created for my Creating A Healing Path workshop series:

‘Nervous system regulation can be thought of as when our nervous system is flexibly able to move between different states in response to stressors & the level of arousal matches the context/what you are required to do.  It is where it is working in a balanced way that supports optimal function & healing.’

A quick summary of the autonomic nervous system (ANS) could be helpful here.  The ANS unconsciously controls and regulates our organs and unconscious body functions, including heart rate, breathing (which we also have conscious control over), blood pressure, and temperature.  It is split into two branches, the sympathetic nervous system (SNS), fight or flight, and the parasympathetic nervous system (PNS), rest and digest.  These work together to maintain a state of balance in the body (homeostasis) and we need both branches of the ANS, neither is good or bad.  The levels of activation of the SNS and PNS are always fluctuating, our central nervous system CNS) and autonomic nervous system are constantly adjusting, along with all other systems, to try and maintain homeostasis.  Our ANS and the CNS (mainly the amygdala and hypothalamus in the limbic system in the brain) are constantly monitoring for threat/danger or safety.  The ANS and CNS are constantly surveying our internal environment (information from all systems), along with our immediate and wider external environment, including how the interactions with others feel.  Our nervous system takes a better safe than sorry approach and our previous experiences and modern society mean it is often dysregulated by things that aren’t actual threats.  Once the threat, or potential threat, has gone we need to be able to return to regulation to function optimally and feel safe and settled again.  When this doesn’t happen automatically or takes sometime we can assist this process and there are many ways in which we can do this, this is part of healing.

It is important to mention that changes in ANS activation are associated with different chemical messengers which of course impact all of our systems.  Our thoughts feelings and emotions are also in themselves associated with different chemical messengers, they are part of our biology too.

There are different models that can help us to understand the ANS and nervous system regulation, the ones I use most often are Dan Siegel’s window of tolerance and Stephen Porge’s polyvagal theory, combined with the 3 circles model by Paul Gilbert (part of Compassion Focused Therapy).  For this blog I’m going to touch on the window of tolerance model and polyvagal theory.

The window of tolerance model was developed by Dan Siegel to describe the optimal level of arousal, it has three parts:

• Hyperarousal (too much SNS – fight or flight)
• Window of tolerance – optimal zone of arousal (balanced ANS)
• Hypoarousal (not enough SNS & PNS without the vagal brake)

In this model a dysregulated nervous system is one that is too often, or too much for the context, in hyperarousal or hypoarousal, and/or takes longer to regulate from these states back to regulation, and sometimes gets stuck for a while in one of these threat/protection based states.  When the nervous system is dysregulated in the direction of hyperarousal a variety of things associated with this can be present including: fear, panic, initial freeze (deer in headlights) emotional overwhelm, anxiety, irritability, anger, over-activity, lack of clarity, worry, gut issues, increased muscle tension, pain, insomnia, a tired and wired feeling.  When the nervous system is dysregulated in the direction of hypoarousal a variety of things associated with this can be present including: disconnection, dissociation, low mood, depression, decreased muscle tone, shame, guilt, feeling numb, fatigue, shut down.

(infographic by Dr Sarah Davies, the link to the blog that this is in is below)

Through the lens of the polyvagal theory by Stephen Porges we see the ANS protection responses as:

• SNS (fight or flight, includes the initial freeze response)
• Shut down or collapse (PNS minus vagal brake, termed dorsal vagal in this model)

Porges suggests that there are three pathways in the ANS, being the sympathetic nervous system (SNS) (mobilised/activated, protect/survival mode, unsafe), the ventral vagal circuit (safe, regulated, sympathetic and parasympathetic activity balanced with the vagal brake, and able to be socially engaged) and the dorsal vagal circuit (unsafe, protect/survival mode, shut down).   These three systems/states are also included on the above infographic).  The SNS part is where there is increased SNS activation (hyperarousal in window of tolerance).  The initial freeze response (deer in headlight type response) is SNS dominant, this is where we freeze whilst a decision is automatically made as to whether we can fight or flee, if neither are possible and this response continues eventually the SNS is overwhelmed by the PNS (we lose the ventral vagal regulation, the vagal brake – the rest and digest part of the PNS).  Here we go into a primitive survival response of shutdown or collapse, this is termed dorsal vagal in this model (it’s where there is increased hypoarousal in the window of tolerance model).  The ventral vagal system is where we are said to be safely activated, in other words the SNS is balanced by the PNS with the vagal brake.  Here all systems can function optimally, the ANS is in balance, the limbic system in the brain is settled and the frontal lobe is online.  When we are in the ventral vagal system we feel safe and secure, this supports social connection and full engagement in a heartfelt presence with ourselves and the world.

The wider our window of tolerance, the more frequently we can be in the ventral vagal system and the more easily we can return to this place again and again.  This helps systems function optimally and we can, for example, find ease within challenges.  Being in our ventral vagal system or window of tolerance helps create the conditions that support healing.  Also with a wider window of tolerance we can more often be in a full heart felt presence and have a greater tolerance to be with our own and others suffering, along with being able to access the wisdom to discern what may be helpful in alleviating or decreasing the suffering.

There is a lot of information on the window of tolerance model and polyvagal theory available, like this blog on the window of tolerance model:

https://www.drsarahdavies.com/post/what-is-window-of-tolerance-emotional-regulation-model-explained

You can find a free beginners guide to polyvagal theory on Deb Dana’s website here:

https://www.rhythmofregulation.com/resources

Considering nervous system regulation alone would be a reductionist way of looking at things, it needs to be considered as part of the whole picture.  This includes considering all systems, what is happening in our body, the thoughts and memories that are present, our behaviour, previous experiences, essentially the whole of our experience and the connectedness of everything.

Summary

Healing doesn’t have an agreed definition except in acute injury.  Healing involves changing or transforming suffering and creates a new way of being through reconnection to our true self and living aligned with our mind, body and heart.

When our nervous system is not well regulated, we don’t feel safe, we can’t see the bigger picture and are disconnected from ourselves, others and the wider whole, and we can’t heal from this place.  It is important we remember that we don’t control any of our nervous systems threat/protection responses (hyperarousal/hypoarousal), they are quickly automatically activated when protection is deemed as needed.  When we are within our window of tolerance or ventral vagal system enough (a regulated and balanced nervous system state) we are safely able to fully connect to ourselves and others, have a more expansive view, and conditions are optimised for healing.  A healing state is one that rests in safety and connection, a place where strength & gentleness are balanced, a place where the seeds of change can be planted, begin to grow and later flourish and these are all part of having a well-balanced regulated nervous system.

Perhaps we could see healing as a return to wholeness, or an alignment of mind, body & heart.  An alignment and wholeness that means that we can live a life full of meaning, with a sense of purpose, fully connected to ourselves, others & to something bigger than ourselves (the wider whole) in an open hearted and grounded way.  These will be explored a little in  part two of this blog.

What do you think, does this way of seeing healing resonate with you?

Link to part two of the blog https://unityphysio.co.uk/healing-within-connectedness-love-part-two/

(brain in hands image with this blog is from Shutterstock by Sergey Nivens, all others are owned by Ann Parkinson at Unity Physiotherapy & Wellbeing)

The post Healing Within Connectedness & Love (part one) 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 regulate 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 regulating & 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, and other reasons, it becomes a bit of a vicious cycle).  A physio can assess for this and give exercises to help retrain normal breathing and regulate 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.

Regulating & 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. 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 work as a Pain & Fatigue Specialist Physiotherapist & Integrative Somatic Therapist.  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, person-centred 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.

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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.