The festive period commonly brings with it a lot of stress, a variety of feelings and emotions, decreased routine and lack of sleep and other things.  These are are things that can turn up the dial on pain and fatigue.  Strategies/tools/practices that help to manage pain & fatigue in general, to manage stress and regulate our nervous system can be helpful.  Practices/tools that can support stress management and nervous system regulation include:

• Breath practices
• Mindfulness & Meditation
• Self-compassion practices
• Being mindful of our language & reframing it (watch out for the ‘shoulds’, more on this a little later)
• Gentle yoga or other mindful movement practices
• Somatic practices
• Time connecting with nature

Commonly over the festive periods routines get thrown out of the window, people try and fit way more in than usual and more than they have capacity for, this is another reason symptoms increase.  There are different contributors to this including feeling pressure to do things a certain way, to do more & make everything ‘perfect ‘ at Christmas.   There’s no such thing as a perfect Christmas or a perfect anything for that matter, one of my wise sisters once said to me ‘it’s the imperfections that make us perfect.’  Christmas has become very over commercialised and there is quite a lot of unhelpful messaging that can make people feel they aren’t good enough unless the Christmas they have matches all the adverts and social media posts.  It can be helpful to remember that it’s only one day of the year and we can choose what we want to do on that day, it doesn’t have to be a certain way.

When managing any condition associated with pain and fatigue there needs to be flexible routine and pacing of activities.  By flexible routine I mean doing the things that support us each day though not in a fixed or prescriptive way.  For example, maintaining a sleep routine, eating food that supports health & wellbeing, pacing activities, using breath practices and other practices to support nervous system regulation, maintaining our boundaries, connecting with others and nature, and used in a way that meets what’s needed each day.

Sticking to your daily routine as best you can in terms of using the resources/practices that support you in managing the condition you’re living with is important, as well as setting some compassionate boundaries over the festive period.  Creating a flexible plan each day, prioritising and planning what you need and want to do, considering what’s realistic, what supports you, what’s meaningful to you, and consideration of what’s in the week ahead can all help with pain and fatigue management at anytime of year and is especially important with events like Christmas.

It can be helpful to explore our beliefs, expectations & our language, for example, noticing when we are we telling ourselves that we must do something, that we have to do something, that we should do more/should do something a certain way.  It’s quite likely that if you tend to overdo things that this language is appearing quite a bit, commonly there are a lot of shoulds (this comes from our threat system).  When you catch this language ask yourself where these come from & explore reframing the language.  For example, maybe reframing something from I have to do ‘x’ to I get to do ‘x’ and I’m going to ask for some help to make it easier.  Are your beliefs about Christmas supportive of your wellbeing & values?  It’s not always easy to reframe unsupportive beliefs, expectations and language sometimes support is needed to do this, especially when there is a history of trauma.

It’s important to know your toolbox of resources, knowing your resources and nervous system well can help you to choose which tools/practices are supportive each day, as well as bringing in additional practices to support you over the festive period as needed. It’s helpful to know what your energy nurturers are, what is restful for you and what regulates your nervous system so that these things can be included each day.  We all need rest and when living with a long-term health condition we need extra rest and more so if experiencing an increase in symptoms (often referred to as a flare-up).  The winter time is also the time we need more rest and the busyness that has now become a ‘norm’ of Christmas pulls us out of our natural rhythm with nature and our time for rest and restoration.

Things I see as foundational, are using mindfulness, self-compassion & listening to your body’s wisdom to guide management of pain & fatigue.  Mindfulness simply means being aware of the present moment, or being aware of our experience as we our experiencing it.  If we aren’t aware of what’s happening and how we are then how can we take helpful action?  The way in which we pay attention matters too, it is important that we are aiming to be compassionate and non-judgemental.  Turning a loving awareness towards ourselves is most supportive and it takes ongoing practice.  Being mindful of what’s present in our body in a compassionate way means that we can hear our body’s wisdom and we can use this to guide our choices.

Here is a summary of tips (there are more than I have written about above, the blog would have got rather long if I wrote a bit about each tip!):

• Have a flexible daily plan
• Have a flare up plan (what supports settling systems down)
• Pace things in a way that supports you (5P’s to remember planning, prioritising, play & purpose, problems solving.  My blog on pacing for pain is linked at the end of this blog)
• Take regular rest breaks
• Check-in with your body regularly
• Listen to your body’s wisdom
• Practice self-compassion
• Be kind to yourself
• Remind yourself what you can do is enough
• Include what’s meaningful each day
• Connect to a sense of playfulness
• Set compassionate boundaries (it’s ok to say no)
• Communicate what’s possible
• Ask for help when needed (asking for help is a strength not a weakness)
• Use daily practices that support you
• Use nervous system regulation practices (for example breath practices, meditation, mindfulness, yoga, somatic & embodiment practices, self-compassion practices, singing/humming)
• Prioritise sleep, rest & restoration
• Manage stress
• Communicate with family & friends
• Reach out for support
• Connect with others & nature
• Spend a little time outdoors each day if you can, or look out of the window & see what you can notice
• Remind yourself Christmas doesn’t have to look or be a certain way
• Explore beliefs & expectations, reframe them if it’s helpful & possible
• Watch out for ‘I should…’, ‘I have to…’, ‘I must…’
• Connect to a sense of joy, wonder, vitality and other nurturing feelings each day

The tips with this post can be helpful for us all and are especially important when living with persistent pain & other conditions.  You don’t need to do them all, trying to change too much at once often has the opposite impact, instead pick one or a few things that feel helpful for you and take action on them.  Maybe you have some tips you would add, I would love to hear them if you do.

It’s important for us all to remember there is no such things as a perfect Christmas & whatever we choose to do is ok and whatever we can do is enough.

Here’s the link to the pacing for persistent pain blog mentioned in this blog (a lot of what is in the blog applies to ME/CFS and long covid too, though pacing for these is slightly different): https://unityphysio.co.uk/what-is-pacing-how-can-it-help-with-persistent-chronic-pain/

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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)

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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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