‘Pacing’ is a term, and an approach, frequently used by people managing long term health conditions.
It appears to me that there is no agreed understanding as to what ‘pacing’ means when applied to managing a long term condition. I can understand why that might be.
There are hundreds, if not thousands, of different health conditions, and within each named condition different people may be affected in slightly different ways. Many people will experience more than one health condition at a time which just adds to this range and diversity.
It would be impossible to put forward one understanding and approach to ‘pacing’ that would work for every individual and that would work effectively across such a range and complexity of health conditions.
In this blog I hope to briefly explore some different approaches to ‘pacing’, and then look in more detail at how I personally use pacing to self-manage my own persistent pain condition. My pain is largely neuropathic, and I hope to explain why I adopt a slightly different approach to pacing and self-managing my condition, than maybe some other people with persistent pain do.
My approach to ‘pacing’ has been developed to support my individual personality, circumstances and presentation of my health condition, and so cannot be directly applied to others. However, it may be that my thoughts might be helpful to others in developing their own approach to ‘pacing’, in order to help self-manage their own health condition.
I will also look at what happens when pacing ‘goes wrong’ and ‘flares’ occur, and I will suggest twenty top tips for recovering from a pain ‘flare’.
My persistent pain condition
My persistent pain condition started eleven years ago, following a manual handling injury. I currently live with a permanently damaged sciatic nerve root which causes neuropathic pain, some back pain and a shoulder that intermittently causes me difficulties. As well as pain I experience other symptoms such as numbness and unusual leg/foot coldness, and I have an impaired ankle reflex and impaired balance.
Most of my pain and symptoms are neuropathic.
The following is a MindMap which illustrates how I personally experience neuropathic pain. Unfortunately I haven’t worked out a way of showing how often I have any of the symptoms, or how intensely I feel them, but hopefully it will give you an overall picture of how my neuropathic pain condition is experienced by me. Others will experience neuropathic pain differently.
What is ‘pacing’?
I think one of the reasons there isn’t full agreement on the use of the word ‘pacing’ for people self-managing a health condition, and clinicians, is that there isn’t a dictionary definition of pacing which relates particularly well to managing health conditions.
The following are the two ‘best’ dictionary descriptions of pacing I have found to support a healthcare situation, but neither describe how I utilise pacing and in reality they are both quite different to each other.
Dictionary.com provides a suggested definition of ‘pacing’ as ‘to take slow, regular steps’, and the Cambridge English Dictionary suggests ‘to be careful not to do something too quickly, so that you do not get too tired to finish it’.
The following are a few ‘published’ (non-dictionary) descriptions of ‘pacing’ that I think are interesting.
The charity ActionforME supports those living with Chronic Fatigue Syndrome (ME). One of the main symptoms of ME is feeling extremely tired most, or all of the time. There are also other conditions in which fatigue is a dominant feature. ActionforME have produced a booklet which can be found HERE called ‘Pacing for people with M.E’.
In this booklet, ActionforME says ‘Pacing is all about balancing activity and rest to bring about improvements in the way you feel.’ They go on to say ‘To understand pacing it can help to think of your available energy as being like a mobile phone battery. If you completely drain the battery you have to wait to recharge it before you can use the phone again. If you use some of the battery and make regular top ups, then your phone will always be ready to use’.
This seems like a sensible approach to managing a health condition with fatigue as a dominant feature, and also might work for other conditions. However, this approach is not one that I identify with as being helpful in supporting my persistent neuropathic pain condition.
Another description of pacing comes from Pete Moore of The PainToolkit, this time aimed at people living with persistent pain. He says ‘Pacing in short is, taking a break before you need it throughout the day’. Further information about pacing, including a short informative video, can be found HERE.
This is undoubtedly an effective, tried and tested, approach for many people living with persistent pain. I can personally identify in part with this approach, and I do utilise it as part of my own overall ‘pacing’, but for me personally I don’t find this approach on its own sufficiently supports the neuropathic pain elements of my condition. However, it may well work on its own for other people with neuropathic pain, everyone is different.
Oxford University Hospital have published a patient leaflet which says ‘Pacing is a planned approach to increasing your level of activity’. The leaflet can be found HERE. I am sure this is a useful description and approach for many, but it is not sufficient to support my personal persistent pain condition. I am also sure that this is a simplified description for publication purposes, and that the Oxford University Hospital go beyond this in their treatment of patients.
In my view the approach from Oxford University Hospital is quite different to that of ActionforME, which in turn is quite different to The PainToolkit. I’m sure if I explored the Internet further, or asked a number of different people, I would come up with many other descriptions and approaches to ‘pacing’.
What ‘pacing’ means to me
If I’m honest, ‘pacing’ isn’t a term that I have often used in the management of my own persistent pain condition. However, I think a large part of the way I manage my persistent pain condition could be described as ‘pacing’.
For my own personal persistent pain condition, which is mainly in the context of neuropathic pain, I would view ‘pacing’ as being largely equivalent to my endeavours to avoid known pain triggers and to minimise ‘wind-up’. I will explain ‘wind-up’ shortly.
In addition to minimising ‘wind-up’, I do also incorporate elements of pacing as described by The PainToolkit, largely, but not exclusively, for my non-neuropathic pain elements.
For example, an element of my persistent pain condition relates to back pain. I am able to walk a reasonable distance (for me), but I know a time will come when my back pain will begin to overwhelm me and I will find it difficult to walk much further. In order to avoid that situation then I try to make sure I take a proper break before I reach that ‘overwhelming’ stage. By ‘pacing’ and taking a break I am able to achieve more.
So for me, ‘pacing’ incorporates more than one element. It incorporates minimising ‘wind-up’ and it also incorporates taking breaks, or fundamentally ‘pacing myself’ in order to achieve what I want to with the least pain possible.
I want to state at the outset of this section that I am not a clinician, and I do not pretend to have a good grasp of understanding the mechanisms of ‘wind up’ when related to pain. One day I would like to write a blog that describes how these mechansims work in detail, but this blog is about how I self-manage the effects of ‘wind-up’ rather than how ‘wind-up’ occurs.
I would also like to state that I fully understand how complex the experience of pain is, some of which I have written about HERE, but it is very difficult for me to write something which I hope will be understandable to others about pacing in the context of my experience of neuropathic pain, which incorporates all the complexities of pain at the same time.
Hopefully though I will be able to provide a very basic and simple description of MY interpretation of ‘wind-up’, describe some of the impact ‘wind-up’ has on me, and describe how I use this simple understanding to help me manage my persistent pain condition.
The way I think of ‘wind-up’ is in two overlapping parts.
Most of my pain is caused by my damaged sciatic nerve root, and is neuropathic in nature. I think of this nerve root as being temperamental in nature, and easily ‘wound-up’. The more it is ‘wound-up’ the more likely I am to experience neuropathic pain from it.
This nerve root is clearly part of my whole body, and my whole body also experiences some ‘wind-up’ of pain. I think of my body as having an overall ‘pain volume dial’ that fundamentally controls how sensitive my overall body is to pain. If I ‘wind-up’ this dial then I am more sensitive to pain, and more likely to experience pain and at a higher intensity.
Clearly if my whole body is in a highly pain sensitive state then I am more likely to experience pain not only from my sciatic nerve root, but from other parts of my body also.
I will try and explain a little more about what I will now call ‘whole body pain wind-up’ and ‘neuropathic pain wind-up’, without going into too much technical detail, below.
Whole body pain ‘wind-up’
When you have experienced pain over a significant period of time, as I have, your body is likely to undergo some changes. The repeated pain you experience can modify the way that your central nervous system works, and you can become overall more sensitive to pain. Your pain sensitivity dial is turned up and you may experience amplified pain.
Unfortunately, like many others, I have lived with pain for so long that I no longer know what is ‘normal’ pain, and I can’t always tell if my pain sensitivity dial is turned up, or not. I am fairly sure I do experience amplified pain, at least at times, but my judgement as to what is ‘normal’ pain and what is amplified is impaired.
The pain sensitivity dial doesn’t get turned up only once in response to the complexities of persistent pain, it is something that is variable, and something that can be positively influenced by good pain self-management, including ‘pacing’.
Neuropathic pain ‘wind-up’
As part of my long-term persistent pain condition, and related to my damaged sciatic nerve root, I experience neuropathic pain ‘wind up’, which I hope through examples to explain below.
Minimising this ‘wind-up’ is fundamentally my equivalent of ‘pacing’ in MY neuropathic pain context.
I have various triggers to my neuropathic pain, and other symptoms (eg numbness) which I have illustrated in the mind map below:
Some of these are physical triggers and some are related to my mental and emotional state (eg work stress). Sometimes these triggers will cause an immediate response of pain, and sometimes they won’t. I cannot reliably predict when I am likely to experience immediate pain, and when I’m not.
For example more often than not if my sciatic nerve is ‘tugged’ then I am likely to experience immediate pain, but not always. For example if I get out of the passenger door of a car on my steep drive then I am quite likely to experience severe pain, but this doesn’t always happen. If I lift anything and carry it, for even a relatively short distance, then I am likely to experience both pain and numbness, but the intensity of both symptoms will vary. If I sit on a hard surface then I am likely to experience immediate pain, but there is no certainty to the level of that pain or its duration.
What I feel happens is that my sciatic nerve root is ‘irritated’ by the various triggers I experience, even if this ‘irritation’ doesn’t result in immediate pain. As the day goes on there is an accumulation of all these ‘irritations’ and my nerve root is effectively ‘wound up’.
The result of this ‘wind-up’ for me is that as I go through the day and into the evening my pain sensitivity becomes increased, and I become more likely to experience pain than say I might have done in the morning with a similar trigger.
For example, if I sit on a hard surface in the evening then I am more likely to experience pain, or worse pain, than if I sat on the same hard surface in the morning, because my sciatic nerve root has effectively been ‘wound-up’ and has become more sensitive to triggers as the day has passed.
I should add that this is how my personal condition affects me, and this may well not be the same for other people, even with a seemingly similarly damaged sciatic nerve root. There is huge variation as to how people are affected by a health condition, and how and when they experience pain.
If I have experienced a lot of pain triggers during the day, for example if I have sat quite still for extensive periods of the day, then I am quite likely to experience severe neuropathic pain later in the evening and maybe at sporadic times during the night. As far as I can tell these episodes of severe pain aren’t in response to any particular trigger occurring at that time, but seem to somehow be in response to the number and type of pain triggers I experienced that day.
I visualise this in a similar way to a mother being ‘wound up’ by their child. The more and more the child ‘pokes’ and ‘aggravates’ their mother through the day the more temperamental and explosive she may become. I view my sciatic nerve root as being temperamental, particularly later in the day and evening, and at times explosive!
Fortunately I find that this accumulated irritation and wind-up of my sciatic nerve root usually dissipates over night and I start the next day with ‘a clean slate’. It is as though my nerve root and pain condition are ‘reset’ during the night.
However, there are times when this ‘reset’ doesn’t fully happen, and I start the following day with my sciatic nerve already in an irritated and wound-up state. This makes it likely that I will experience increased pain and symptoms as I go through that day and into the night.
If this incremental increase of irritation and wind up goes on for a number of days then I am likely to go into a ‘flare up’ situation.
In order to reduce the likelihood of a significant ‘flare up’ of my condition, and in order to minimise the pain and other symptoms I experience on a daily basis, I actively seek to minimise the wind-up of my nerve root.
It is this positive avoidance and management of pain triggers that forms the basis of my pain self-management, and my ‘pacing’. I have written more about how I self-manage my predominantly neuropathic pain HERE and HERE.
An inevitability of living with persistent pain is that you experience ‘flares’ from time to time.
My simple understanding of a ‘flare’ is that they are times when you experience significantly increased pain for an extended period of time.
I experience pain flares in two main forms, others will experience flares differently. My main type of flares relate to my neuropathic pain. However from time to time I also experience more generalised pain flares that might relate to my neuropathic pain and/or might relate to other vulnerable parts of my body, for example my back and/or my shoulder.
I describe these two different types of flares as ‘simple flares’ and ‘complex flares’.
For me ‘simple’ flares occur when I have excessively ‘wound up’ my sciatic nerve root over a period of time. The nerve root isn’t ‘resetting’ over night and becomes increasingly aggravated, temperamental and ‘explosive’.
During a ‘simple’ flare I can expect to experience a week or more of daily multi-episodes of severe neuropathic pain, particularly during the evenings and sporadically through the night. I become much more sensitive to experiencing pain, and overall I live with increased neuropathic pain and symptoms.
I describe these flares as ‘simple’ as it is my most common type of flare, and predominantly involves my neuropathic pain. Some other parts of my body may continue to be in pain at their ‘normal’ levels, for example my back, but it is just the neuropathic pain element that has particularly heightened.
These simple flares tend to happen for me if I am in a situation where I am sitting still for extensive periods, or worse standing still, doing any lifting and carrying (even relatively light things) or if I am overly stressed.
I can get away with doing these types of things ‘excessively’ for maybe two or three days without entering into a flare situation, but if I continue with them over a longer period then I can expect my condition to flare. Nothing is certain though.
Once I’m in a flare situation I usually have to work hard at reducing as many triggers as I can whilst my sciatic nerve root ‘winds down’ and ‘resets’. If I don’t start working at reducing the triggers then the flare will increase in intensity and take longer to calm down.
As well as reducing pain triggers, I do everything I can to positively improve my life, both during the flare and going forward. For example, I try to reduce any stress I’m under and do things that relax me and make me happy.
I find that once I enter a flare situation then my sleep is inevitably disturbed. For me this can cause a viscious cycle as lack of sleep can increase my pain levels, and then the increased pain levels can cause lack of sleep! In a flare I work hard to ensure the best sleep I can.
Emotionally any type of pain flare can take it’s toll. Even though I am used to living with persistent pain, any significant increase of pain, particularly if it affects my sleep for more than a night or two, can be hard going!
Thankfully my simple flares aren’t very long lasting, and emotionally I can usually bounce back from them relatively easily. Repeated simple flares cause me more difficulties, but I usually take a flare as a warning sign and adjust my life accordingly to avoid another in quick succession. I don’t always get this right though!
It is my ‘complex’ flares that I find the most difficult.
Like many other people I have more than one health condition. I think of a ‘complex’ flare as being when more than one of my conditions flare at the same time, or I experience a domino effect of flares. For example my neuropathic pain might flare, closely followed by my back pain flaring, and then maybe my shoulder pain flaring.
Thankfully complex flares are relatively rare for me.
In the past I have considered my shoulder condition to be completely separate from my sciatic nerve root and back condition, but I am now realising that all my ‘pain conditions’ are fundamentally connected.
It feels to me as though my sciatic nerve root, my back and my shoulder are in a state of equilibrium, and as one varies there can be an impact on the others.
In addition, sometimes my overall body pain sensitivity dial is turned up, maybe because I have been experiencing a simple flare of my neuropathic pain, which contributes to the overall picture.
I think the combination of the variability and sensitivity of my conditions and my pain sensitivity dial being turned up helps to lead to a complex flare.
It sometimes feels as though being in significant pain with one body part can trigger another body part to join the ‘pain party’, and so a complex flare starts.
I personally find complex flares the hardest to deal with, partly because they can be more intense in terms of pain, and partly because the pain may be qualitively different to that I’m accustomed to on a day to day basis.
Because I live predominantly with neuropathic pain, and I am used to experiencing severe neuropathic pain, neuropathic pain has a familiarity to it for me. Experiencing acute shoulder pain is less familiar to me, and for some reason I find that lack of familiarity harder to deal with.
I find complex flares almost have a life of their own, and it can be hard to predict what will happen next with them. Once I have entered a complex flare situation I have to work quite hard to reduce my pain triggers in order to calm the flare down and return to my ‘normal’ persistent pain state. This process usually takes much longer than for a ‘simple’ flare.
Recovering from pain flares
Everyone’s experience of pain flares is different, and everyone will approach their recovery from flares differently.
I think of recovering from a flare in four main parts.
- Firstly, I need to be able to cope day to day with the pain I’m experiencing during the flare up (and for me particularly during the night).
- Secondly, I need to reduce the increased pain levels, and get back to a ‘normal’ pain state, as quickly as possible.
- Thirdly, I need to ensure my mental health doesn’t overly suffer, and I regain ‘resilience’ as quickly as possible.
- Fourthly, looking forward, I need to revisit my work commitments, my social commitments and my pain management strategies so that I avoid getting into a flare up situation again for a while.
I don’t pretend to be an expert on recovering from flares. However, based on my personal experience, I suggest the following tips for recovering from a flare, which I hope may be useful.
My top twenty tips for recovering from a pain flare
- Recognise this is a flare. Flares can sometimes have a habit of creeping up on you.
- Briefly reflect on what might have contributed to the flare (it might help you avoid others in the future). Remember there are usually a number of causes contributing, and may include factors such as physical triggers, emotions, sleep, weather, inflammation etc. Sometimes you won’t be able to work out a cause, and that’s fine.
- Don’t over-analyse what might have caused your flare. This isn’t helpful. If you can’t quickly tell what might have contributed to it then move on.
- Don’t blame yourself for getting into a flare. This isn’t helpful either, you just need to move forward.
- Don’t panic or catastrophise. It is easy to think the worst when in a flare. At the same time don’t ignore anything you think is different and wrong. If you are concerned about your condition, then seek advice from your GP or other involved clinicians.
- Tell your family and friends you are in flare and talk with them about how best they can support you, without removing your independence.
- Give yourself space to recover. Look at ways to reduce any work or social commitments you have. (Don’t reduce them all though otherwise you risk becoming isolated which won’t help).
- Be particularly careful about ‘pacing’. Your ‘pain sensitivity dial’ is likely turned up. Reduce as many ‘triggers’ to your pain as you can. Put in as many pain-management techniques as you can.
- Remember what you have been taught by your physiotherapist, pain clinic, or other professional about how to manage a flare situation. If you have written a flare ‘plan’ then find it and read it. Now is the time to put everything you have learnt into practice, even though now may feel like the time it is going to be the hardest.
- Consider whether increased use of medications may help for a short while. Think about which medications may be particularly helpful. (Make sure you have discussed with your GP or other clinicians though!)
- Do what you can to ensure you can sleep reasonably well. This may not be easy!
- Make sure you talk to others about how your flare is affecting you. This is particularly important if you think you are, or might be, becoming depressed.
- Consider reading blogs written by others with similar difficulties and consider connecting with groups on social media. Find the ‘right’ support for you.
- Look after your emotional and mental well-being. Be kind to yourself. Access family and friend support. Make space and time for going out to places you enjoy and doing things that make you feel relaxed and happy.
- Maintain as much independence as you can (eg dressing, getting food shopping), but don’t be afraid to ask for help. Understand and accept temporary limitations.
- Maintain as much physical movement as you can, without aggravating your condition.
- You may need to pause more strenuous exercise, such as going to the gym, swimming, cycling etc, depending on how you are affected. This might include physiotherapy exercises too. Restart as soon as you feel able. (You may need to seek professional advice as to what you should and shouldn’t do.)
- Look forward. Accept you are going through a temporary ‘blip’ but focus on your life beyond that. Where might you go for a holiday? Who might you like to go and visit? What book might you like to read next? Find things you want to do and start doing them.
- As you recover, take time to think about changes you might need to make to your life to help you stay out of a flare situation for longer. Do you need to try to change your work pattern to reduce the risk of flares? Do you need to review your use of medications? Can you improve your sleep? Is there an activity, for example swimming or walking, you could start doing regularly to improve your overall health? Do you need to take advice about any financial difficulties?
- And finally, at any point in your flare, do make sure you seek professional help if you feel you need to. This may be from your physiotherapist, your GP, or a range of other clinicians or professionals.
A PDF of my top twenty tips for recovering from a pain flare can be accessed by clicking HERE.
Pacing and flares in the context of MY neuropathic pain
Living with persistent pain, particularly I think neuropathic pain, can be difficult. However I have found that by seeking to understand my condition, including what makes it worse or better, and by adopting pro-active self-management techniques, including ‘pacing’, I have been able to live well with pain.
I hope the description I have given of my approach to ‘pacing’ and ‘flares’ might help others living with persistent pain, particularly if they have neuropathic pain, to develop their own approach.
There is no ‘one-size fits all’. Each of us needs to work out our own way of managing our persistent pain or other long term condition. This is merely mine. I hope it may be helpful for others to read.
As ever I am very interested to hear any thoughts and comments on this post.
I would like to acknowledge the help and support my physiotherapist @MattLowPT has given me. He has patiently, and compassionately, helped me to understand my persistent pain condition and has helped me to develop my pain management techniques.