This content is designed for the participants of the GGC Pain Management Programme.

This presentation aims to explore the relationship between pain and activity and consider what options there are when it comes to managing our activity levels.

Do you feel any of the words on the signpost in the picture apply to you as you think about exercise and activity?

You may have already listened to the presentation on Explaining Pain and started to think about the nervous system using pain to alert us to threat rather than on-going damage.

If we think about pain differently, could we start to think differently about how we approach activity?

Many of the patients we see in the pain service tell us that their activity levels have been significantly affected because of their pain.

They describe how over time they find that they are doing less and that they can’t get away with the things they used to manage easily.

We often hear that people experience worse days and better days and that it is natural to try to do more on better days.

This often ends up resulting in a worse day and having to cut back on activity while you wait for the flare up to settle.

Other people tell us that they just have to keep going and put up with the pain but as a result feel constantly flared up and exhausted.

Throughout this presentation there will be an opportunity for you to pause to reflect on your own experience and take some time to write a few things down if that helps you.

Worksheets are provided to accompany this presentation but it’s fine to use a journal or notebook of your own if you’d prefer.

What has been your experience with activity?

Can you relate to any of the notes on the screen?

What has happened to your level of activity over time?

Do you feel stuck?

Does it seem realistic that you could somehow manage to do any more than you are currently managing?

What are the activities you are missing out on?

We are going to consider two common experiences with activity that people have when they are living with chronic pain.

The first is what we sometimes call a boom bust pattern. Assuming that your pain has an upper and a lower limit, you find yourself doing more when the pain is less but then having to reduce activity to allow the pain to settle again.

Is this something you have noticed?

Sometimes it may feel as though you are getting somewhere and that taking a rest is only natural to allow the pain to settle. However, behind the scenes there is a nervous system which is constantly reacting and adapting in a protective way. It learns that as we increase our activity level it needs to respond with pain as a warning against any more information coming in. The nervous system has learned from experience that increases in activity are threatening and that rest feels safer.

Over time, the nervous system and your body expect that activity will cause pain and so the upper level of pain happens sooner than it used to and you get away with less activity before the alarm goes off. This means it is not possible to have consistently active days and the rest periods in between mean that we lose fitness and strength.

The graph may clearly represent your frustration that over time you are getting worse even when you try to be active. And the most frustrating thing about this graph is that even though you end up doing less, the pain that you experience is just as bad as ever! This is evidence of the sensitisation process at work in the nervous system.

It is important to remember that increases in pain usually mean the nervous system is trying to protect the tissues and does not mean there has been more damage to your body.

A continuation of the boom bust pattern results in this vicious cycle being established.

Take a few moments to think about this cycle and identify if you can relate to it in any way or with any particular activity.

This vicious cycle illustrates the adaptation that is taking place in the nervous system, body and mind. People tell us that there is often a bit of worry associated with movement and activity as it increases their pain and decide it’s perhaps safer not to do it.

As we think about pain differently throughout this programme it may be that you can think about how we can be less worried about the pain and more confident to change how you do certain things.

So, is there anything about the boom bust pattern and this vicious cycle of doing less over time that you recognise in your own life?

Or do you identify more with this slide; You keep going, you keep pushing, you’re not going to let this pain beat you!

Often this activity pattern is a result of feeling as though you just have no choice – there are things to do and you’re the only one who can do them.

As you push on with the activity the pain just keeps increasing until such a point that you have no choice but to pull back.

Often this can result in a longer flare up due to the process of sensitisation going on in the nervous system.

How does it feel if this is you? Do you feel frustrated and exhausted because no matter how hard you push on nothing seems to be getting better?

We have been taught that the harder we exercise the fitter we will get.

Why is this not the case with chronic pain?

Consider the following vicious cycle that happens when we push on….

So the pain stays high, but even most people who identify with this slide will admit that over time they are able to do less and less.

The nervous system is responding in a protective manner rather than adapting in a helpful way.

The more you push on into the pain the more the nervous system decides that there is a threat and it must protect and it uses pain to get your attention.

Take just a few moments here to make a note of which cycle you most identify with.

Perhaps it is a combination of both.

Perhaps you used to always push on but now you’ve really had to pull back?

You can pause the presentation if you want to spend more time thinking about this, otherwise we will move on to the next slide.

So we talked about there being some options with activity even when you have pain.

You have most likely come up with these solutions for yourself through trial and error, or a sense of having no choice.

Spacing things out may be the only way you manage to get anything done. You do a bit, then take a rest. This can mean you accomplish what you set out to do, but it can be a bit frustrating as everything takes longer to do.

Going with the flow is when we allow the type of day we’re having to set the scene for how much we do. E.g. if you didn’t get much sleep because of the pain it may end up being a pyjama day. Or if the pain isn’t too bad you may feel you can manage a bit more.

The drawback to this approach is that you play this “wait and see” game with your body and there is no re-training opportunity.

Planning in advance is choosing one thing over another in the hope that you will manage the more demanding activity a little better. E.g. You have a hospital appointment on Wednesday so you’ll lay low Monday and Tuesday hoping you’ll have less pain and more energy for Wednesday.

This give and take approach can mean that you build up your hopes of doing something important by being careful of not overdoing things ahead of that event. However, that can really feel like putting life on hold and there is no guarantee that your pain will co-operate when day in question comes round. Therefore, this can be risky. But for some things it is an option.

Asking for help can be very hard for many of us. There is a sense that you are have failed or that you are giving in.

Avoiding asking for help can cultivate a ‘pushing on’ cycle and mean that you are perpetually overdoing things and then paying the price.

Asking for too much help can mean that you are avoiding giving your body a chance to re-learn how to do things you used to manage.

There is a balance between accepting help to avoid flaring up and reducing assistance to allow you to develop some strength and stamina for certain tasks again.

Pacing is an approach we promote in the pain service as there is good evidence that people who practice this experience an increase in their activity levels and a reduction in flare ups over time. It does not take their pain away, but it can help people have a strategy that helps achieve goals and engage in activities that are important to them without being stuck in vicious cycles. Pacing is a graded approach to building up your activity tolerance over time.

What difference would it make to you if you could feel more confident about managing activity?

Could that allow you to return to an activity you used to enjoy but using a different approach?

What difference would it make to your quality of life?

What if it doesn’t change your pain all that much but it helps you feel more like YOU again?

So is a case of pulling back

Or

Building up?

We are going to take a few moments to look at what happens if we change the way we approach activity and how this has the potential to help retrain the nervous system a bit.

If you have recognised that you tend to push on even once pain has flared up, pulling back is most likely necessary for a period of re-training.

This allows the nervous system to chance to settle and not be so vigilant about when the next load of information is about to hit!

If the nervous system doesn’t have to be on such high alert, it is possible that you may not experience such intense or frequent flare ups.

Pulling back a bit allows you to explore what your actual physical capabilities are rather than always trying to do things the way you used to.

This is difficult as it means you are asking yourself to accept things the way they are at the moment.

However, the more realistic you are about your current activity levels means you can be more realistic about the goals you set for yourself.

Experimenting with what you can do without flaring up your pain levels as often perhaps means that you can beigin to understand you own pain a little better and the way that your own nervous system responds to certain triggers.

Building up a bit:

By taking things slowly there is more opportunity for the nervous system to learn a different way of reacting to activity. Often, the name of the game is consistency rather than that boom bust roller coaster we chatted about before.

When we start to experience that we are getting better at something or that we can do it for longer, we start to feel our confidence improving again. Perhaps we don’t have to turn down a friend or family member as often when they invite us over, or perhaps we can measure that the distance or speed we are walking at has improved with practice. This gives us a boost and can help motivate us to keep going.

Once we start to be a bit more active with a particular activity we can begin to understand that achieving a goal is possible. We will go into goal setting in more detail in another presentation but setting meaningful goals that are realistic is closely linked to increasing our activity levels in a graded way.

If you think about how long you have been in pain and how that has affected your activity levels, it is understandable that you may have lost fitness, strength and flexibility. This will take time to change for the better but it is possible to reverse some of these changes slowly and surely.

We have already discussed how our overall fitness will improve once we start to experience an increase in the amount of activity we can do. Small increases over time do make a difference. A good example of this is people who take up the couch to 5K challenge. They may have a very low

baseline fitness but following the daily plan even at a very low level of activity, gradually allows them to build up a tolerance to the increased demands being placed on their bodies but it does it in a ‘sneaky’ way that doesn’t annoy the nervous system too much and it continues to feel manageable.

If we ask too much of our bodies too soon we just put ourselves off the idea.

Taking a graded approach can actually help us understand our own pain. How does it react if I play it safe versus doing too much. How does it react if I just push the boat out little but not too much and stick at that level for a few days?

Perhaps you’ve already tried this approach? If it worked with one activity give it a go with something else?

We would suggest you chose something that feels a bit easier first and then aim higher as you gain confidence.

Perhaps you have tried and failed too many times already to feel that you can give this another go?

We would ask you simply to think about the reason you are exploring the pain management programme right now. Is it because you are feeling stuck in a cycle with your pain? Is it because you feel as though you have tried everything and it’s not working?

Although it is difficult to feel as though you are starting all over again, in some ways you are, but this time you are doing it with support and guidance and the information we are passing onto you is tried and tested and has helped a great many people in your situation.

To put pacing into practice we ask you to identify one activity you would like to manage better. Try to make this something enjoyable and not something that feels like a chore.

Try it out over the next few days and ask yourself how much you can get away with before you feel your pain increase too much. This is based on your own experience of your pain and it is important to be aware of your actual limits at this stage. For example, if you already know that walking more than 10 minutes flares your pain up for the next 2 days, that is not an acceptable starting point for this experiment. If you know that walking for 4 minutes leaves you feeling relatively comfortable then that is more likely to be a suitable baseline and that’s where you want to start.

The big question to ask yourself is this

“What would my starting be on a bad day?”. Ideally, it is the bad day baseline we want to focus on to begin with as most people tell us it is the bad days they wish they could change. Often people tell us that there is a significant difference between what they can do on a bad day compared with a good day. We need to accept what the bad day limit is and start there even though you know you can do more on a good day. Remember this is about teaching your

nervous system new ways of responding to information, so although it’s frustrating, there’s a good reason behind it.

Once you have established a comfortable place to start with your chosen activity, practice this amount regularly and notice whether it is getting a bit easier. Is your pain behaving much the same every time you try it?

If so, then increase the amount by approximately 10-15%. This isn’t very much, but this is enough to just challenge to nervous system a little bit without it over-reacting.

So, 10% of that 4 minute walk would become 4 mins and 24 seconds! This may seem insignificant but over time this soon becomes bigger chunks that you are adding.

Often the temptation is to double the amount before were ready. Too much too soon will set off the alarm and tempt you to give up.

Pacing is how we’ve learned pretty much everything in life!

We don’t just wake up one day just able to play the piano. Years of practice went into that and it was hard work. A little practice every day – even when we don’t feel like it - gets results.

A baby builds up to walking by developing strength and balance to then stand and then many falls before walking becomes steady.

We ask that you are patient with yourself and accept that this is a process that demands discipline and there will be a few set backs along the way.

Over time, the amount of activity you can do on any day will improve.

Notice the blue line in this diagram. This is your background pain and this is unlikely to change with this process. This means that even at your starting point there is going to be pain. But this is what people often call there ‘bearable pain’. It is very different from the flare up pain. If you notice from the diagram, the activity level stays well away from that flare up pain. This means you are always staying is a zone that doesn’t raise the threat level in your nervous system and therefore reduce the need for that alarm to go off.

This is a slow and steady approach, only adding more when you feel comfortable and confident to do so.

There are no rules as to what you can pace up. It could be walking, standing, sitting, reading, concentrating, socialising, lifting, bending – anything you want to get better at. We would recommend that you choose at least one activity that will help towards your overall strength and fitness at this stage. There may be other activities that would be important to pace up to help with your mood and quality of life.

Pacing allows people to experience that there are able to get away with more than they used to.

Often, when people come to the pain service, the opposite has been true for them.

Remember why we are taking this approach…

It’s so that we can re-train the nervous system to be less sensitised and reactive.

Remember the nervous system has learned to protect you over time and it will still want to do that. By training slowly and consistently the nervous system will learn that the messages are changing and that it doesn't always need to react so quickly and so intensely.

Over time, this allows that sensitivity to reduce and for some of the functions in the nervous system to return to a more settled level again. We can never say that the nervous system goes back to normal. It’s more a case of it learning new ways to react less.

In summary

Exercise and activity are part of pain management

Gradually changing and increasing what you do can help train the nervous system to respond in a different and more helpful way

We are what we do – getting back to things you enjoy will help you feel more like yourself and help pain to take a bit of a backseat

As you experience progress, your confidence will start to increase and you are more likely to continue to set new goals

This is not easy – you will hit bumps along the way. Be gentle with yourself and stay realistic.

This is the end of this presentation.

Thanks for listening

End of video transcript

Return to preparation for session 3