Quick Guide To Pacing For Your CRPS & Persistent Pain
What is pacing? How does it help you with your CRPS, persistent pain or other chronic pain condition? How do you ‘pace‘?
When you hear the term ‘pacing‘ most people don’t know or understand what is meant by it. People think that they don’t need to pace themselves to help with their CRPS/RSD or persistent pain. But in fact it is very important to help you do things better despite your pain. Pacing is just one small part of helping you to self manage your CRPS or persistent pain.
Pacing can help you to take control of your condition and enable you to become an expert in managing your illness. What we mean when we say to pace yourself, is to not just put all your housework, jobs and activities in one part of the day, but arrange them throughout the whole day. Many people living with persistent pain or CRPS or any other chronic illness will push themselves on those ‘good days’ so you try and catch up with everything that you may have not been doing. You feel that you have to get all your jobs and work load done before your pain becomes too much for you to handle and too much so you have to stop doing your jobs.Does it seem right that you do one highly productive day but then spend 2, 3 or more days lying in bed or on the sofa? Most people would say no that it isn’t right and doesn’t make sense, so why do we do it? So how do you get your jobs done productively but not make yourself so tired or so in pain that you can’t do anything? Your answer is – pace yourself. Instead of trying to do all the housework in 1 hour of your day, try and do various elements of it spread over the whole day or 2 days. This will give your body frequent rests so you won’t make your pain worse and body position changes so your muscles won’t clench up as much. Activity doesn’t necessarily mean physical activities but also mental and emotional activities as well. Remember that pacing is a tool or technique that you used so you don’t react to pain but instead you pre-plan your day to incorporate pacing.
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What Is Pacing For Chronic Pain or CRPS?Pacing for chronic or persistent pain or Complex Regional Pain Syndrome is considered a skill that will help you to carry out your jobs, work or activities without causing you extra and unwanted pain. It is the middle of over exerting yourself and doing nothing. Pacing also means learning to break down your activities and jobs into small, manageable pieces without pushing yourself so much that it causes you to have a flare up of pain and other CRPS symptoms. By learning to pace yourself it will change the way you complete an activity or jobs so eventually you can increase your strength and your overall function, which is good for the self management of your condition. If people over do activities and end up with increased pain or flare up of your symptoms, what can happen is that pain patients will stop all activity or become highly inactive, thinking that it will just cause you prolonged pain. This is not what we want. But by learning to pace yourself and split up your activities or work load and giving yourself more rest periods, it will help you with managing your own condition. Learning your own pain self-management strategies is crucial to chronic pain and CRPS treatment and overall it will eventually improve self-efficacy, enhance your quality of life and hopefully reduce your level of suffering (Jamieson-Lega, K. (2013). In the Jamieson-Lega, K. et al (2013) research study on pacing they concluded that the definition of pacing for chronic pain is as follows:
“Pacing is an active self-management strategy whereby individuals learn to balance time spent on activity and rest for the purpose of achieving increased function and participation in meaningful activities”.
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Pain And Fatigue Cycle (Boom and Bust)The idea of pacing is to try and break the pattern of having less good days and more bad days because you have been pushing your body too much on those good days. You should be able to pace your way through any form of activity whether it is shopping, hanging out the washing, hoovering or dusting the house or enjoying your favourite hobby for example. When you start pacing your activities and jobs you have to do, you will find it hard but eventually you should begin to be able to do them for longer and longer each time. Set yourselves small goals and then increase them each day, but remembering that you can say No and ask for help! Also remember to give yourself praise when you do attain your goals no matter how large or small they may be. Living with CRPS or a chronic pain condition means that on some days you can feel less pain and at other times your pain is worse or you’re in a flare up of your symptoms. When chronic illness reduces your activity levels it is very easy to try to make up for lost time on better days. But cramming in too much activity on a day when you are feeling better often leads to a setback in your symptoms. It becomes a vicious circle or a Catch-22 situation. This is sometimes called ‘boom and bust’ or ‘activity cycling.’ (Pacing for people with M.E. booklet 2016) Pacing gives you awareness of your own limitations which enables you positively to plan the way that you use your energy, maximising what you can do with it. Over time, when your condition stabilises, you can very gradually increase your activities to work towards recovery.
NICE defined pacing as:
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“… energy management, with the aim of maximising cognitive and physical activity, while avoiding setbacks/relapses due to overexertion…..The keys to pacing are knowing when to stop and rest by listening to and understanding one’s own body, taking a flexible approach and staying within one’s limits; different people use different techniques to do this..”Most people may think pacing activity is just common sense. However, managing activity with regard to CRPS and persistent pain is contradictory to the way you have lived prior to becoming unwell with CRPS or chronic pain. You are generally taught to push through the pain when times get hard, to not stop and keep going. However this sort of attitude does not work with CRPS or chronic pain. You need to learn to rest frequently to allow the body to recover energy. If you push past your limit or Activity Baseline your body sends out inflammatory responses. It is these inflammatory responses that cause you extra pain or indeed a pain Flare Up causing you agony over and above your normal pain levels for a few hours up to a few days.
In the study by Neilson, W.R. et al (2001) they defined pacing to include going slower, taking breaks, maintaining a steady pace and breaking tasks into manageable pieces. Although the concept of pacing often includes the notion of increased activity tolerance they viewed this as a consequence of pacing rather than as part of the construct itself. The first important point to learn is what your maximum you can do in any given day. Start writing a daily diary of your activities noting down the activity and the time it takes.
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Self-management of your CRPS or chronic pain includes taking control of the balance of activity and rest, and learning how to communicate to other people about the balance that usually works best for you. This balancing out of activity and rest is sometimes called “energy management“, “activity management” or “pacing.” Pacing is all about balancing your activity and rest to bring about more stability in your symptoms, and more importantly what you can manage every day. It also offers you an opportunity to control the consequences of your CRPS or chronic pain. Whilst it does take self-control and patience, the stability it brings will help you to take decisions about building up activity. (Action for M.E.2016)
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How do I pace myself through an activity?
- Pick your activity First of all, pick an activity that at the moment you find difficult to do and would like to be able to do for a longer amount of time, for example, sitting, walking the dog, housework, hobbies.
- Establish your baseline – To begin to pacing to help you self-manage your CRPS or persistent pain, you first need to establish your baseline for each activity or job. What is a baseline? This baseline is amount of that particular activity or job that you can do comfortably before you start to suffer from a pain flare up or a flare up of your symptoms. Remember that you will no doubt have some increase in pain levels especially if you have chosen a new or different activity or job. However you want to stop that activity or job before the pain becomes difficult or impossible for you to control. There is no specific measurement for your baseline. Your baseline could be a time length, or distance or something else.
- Measure the length of time you’re comfortably able to do your activity or job. Do this on at least 3 different times and remember to do this on both good days and bad days.
- Do this at least three (3) separate times – on both good days and bad days
- You then take an average of these measures. You do this by adding the 3 numbers together and then you divide by 3. After this you should then reduce this figure by 20%. This is to give yourself a buffer. This is then your week one baseline for activity “one”
- You can then repeat steps 1-5 for other activities or jobs
- It is a very good idea to keep a diary of your activities to keep track of your progress and your setbacks. Please remember that you will have setbacks, not everything goes smoothly all of the time. Instead of being hard on yourself or giving up, use these setbacks as a learning curve. Sometimes you may need to establish a new baseline after a setback.
- If you decide to divide your activities up into manageable blocks, you need to set a rest time after your activity block. You could include a relaxation technique into that rest time such as breathing exercises or switch positions.
- Increase your lengths of time for each activity every week. If this is too much, drop it back down and then try every 2 weeks. Remember that you’re focusing on the time rather than the pain for your pacing guide.
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Points To Remember For Pacing
- Don’t continue with your activity or job past your planned time even if you’re feeling really good. By resting and then picking up the activity again for a timed period after a rest and then stopping will help you learn to pace yourself
- Place a clock in full view, or set an alarm to ring after your planned amount of time.
- Try and do the activity every day if you can on both bad days and good days
- Over time attempt to build on the original amount of time you do the activity and then rest, but remember – Don’t carry on with the activity over the planned time!
- Using your baseline will eventually lead you to improved tolerance and more achievements
- During your rest time rather than just stopping and doing nothing, put on the radio for example, make a drink, do some breathing or relaxation techniques
- Your rest time does not mean you’re weak or you have failed, it is the opposite. It’s more sensible to gradually build up your stamina which is what pacing will do. You haven’t failed!
- If you’ve had a flare up of pain or other CRPS symptoms, reduce yourself back to a level of activity that you can cope with and feel comfortable with and then start pacing it back up again
- Keep a journal / diary and write down each time you spend doing your activity and you can see how much you’ve progressed over the time you’ve been doing your pacing activity. Check out our Pain Diary for CRPS blog to help you keep a track of how your pain does.
- Use this method for all your activities and remember you can say ‘No’ to doing too much!
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Please also have a look at the Pacing Activity form created by VA Health Care.
Finally, Take Your Time….By learning and understanding pacing for your CRPS or persistent pain you will be able to self-manage your condition. Our quick guide to pacing for your CRPS and persistent pain gives you that understanding to help you manage your condition and flare ups. You will improve with practice and please be patient as pacing takes time. Eventually you will be able pace yourself without thinking and you’ll begin to wonder why you never learnt pacing for your CRPS or persistent pain before now! What are your tips for pacing for CRPS or persistent pain? Let us know by making a comment underneath our blog.
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- Action for M.E. (2016) ‘How can I manage my symptoms by pacing and energy management?’ Action for M.E. website. 2016. Available from: <https://www.actionforme.org.uk/resources/questions-and-answers/how-can-i-manage-my-symptoms-by-pacing-and-energy-management/>
- Action for M.E. (2016) ‘Pacing for people with M.E. booklet (2016)‘ Available for download from: <https://www.actionforme.org.uk/uploads/pdfs/pacing-for-people-with-me-booklet.pdf>
- Dellwo, A. (2017) ‘Pacing With Fibromyalgia & Chronic Fatigue Syndrome,’ Verywell website. Available from: <https://www.verywell.com/pacing-yourself-with-fibromyalgia-and-mecfs-715723>
- February Stars website (2016) ’10 Top Tips for Pacing with Fibromyalgia,’ February Stars website. 2016. Available from: <http://februarystars.co.uk/2015/05/10-top-tips-pacing-fibromyalgia/>
- Gill, J.R. & Brown, C.A. (2009) ‘A structured review of the evidence for pacing as a chronic pain intervention,’ European Journal of Pain. 2009. Vol 13(2), pp214–16.<https://www.ncbi.nlm.nih.gov/pubmed/18448368>
- Hardie, J. (2008) Forth Valley NHS Trust: ‘Chronic Pain – Self Help Guide,’ Moodjuice guide. Available from: <http://www.moodjuice.scot.nhs.uk/chronicpain.asp>
- Jamieson-Lega, K.. et al. (2013) ‘Pacing: A concept analysis of a chronic pain intervention,’ Pain Research Management. 2013, Jul-Aug. Vol 18(4). pp 207–213. Full Text Available from: <https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3812193/>
- McCracken, L.M. & Samuel, V. (2006) ‘The role of Avoidance, pacing, and other activity patterns in chronic pain,’ Pain. 2007 July, Vol 130 Issues 1-2 pp 119-125. Available from: <http://www.sciencedirect.com/science/article/pii/S0304395906006397> doi: 10.1016/j.pain.2006.11.016>
- McCracken, L.M. & Samuel, V. (2006) ‘The role of Avoidance, pacing, and other activity patterns in chronic pain,’ Pain. 2007 July, Vol 130 Issues 1-2 pp 119-125. FULL TEXT Available from: <http://22.214.171.124/Files/AlwaysOnLearning/2686role_of_avoidance_pacing_in_chron_pain_mccracken.pdf>
- ME/CFS Diary (2016) ‘Activity Pacing,’ ME/CFS diary website. Available from: <http://www.mecfsdiary.com/activity-pacing/>
- Moore, P. (2015) ‘Pain Toolkit 3: Pacing. Learn to pace yourself,’ YouTube. 2015, March 27. Available from: <https://www.youtube.com/watch?v=nPdfFzU2n3I>
- Nielson, W.R. et al. (2001) ‘An activity pacing scale for the chronic pain coping inventory: development in a sample of patients with Fibromyalgia syndrome,’ Pain 89. 2001. pp 111-115. FULL TEXT Available from: <http://publish.uwo.ca/~mhill2/pain01pdf.pdf>
- Psychology Tools ‘Pacing for pain and fatigue‘ Available from: <https://psychologytools.com/worksheets/free/english_us/pacing_for_pain_and_fatigue_free_en-us.pdf>
- VA Healthcare ‘Activity Pacing Form’ VA Healthcare website. Available from: <https://www.mentalhealth.va.gov/coe/cesamh/docs/Activity_Pacing-patients.pdf>
- Williams, D.A.Dr., Carey, M.Dr. (2003) ‘Improve Your Functioning Through Effective Pacing,’ UMHS. Available from: <http://www.med.umich.edu/painresearch/patients/Pacing.pdf>