Your

Pain Toolkit Pain Toolkit Tools

Your Pain Toolkit

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Tool 1 - Accept that you have persistent pain ...and then

…Is a simple and easy to read book for people who live with persistent pain and want learn to how to self-manage it more successfully. The main aim of Your Pain Toolkit is to encourage both people with pain and health care professionals to use it together; it will promote team work. It is not meant to be the last word in pain selfmanagement support, but a handy guide or ‘buddy’ to help you get started - all you need is to be willing to have a go! Good luck! Pete Moore

[email protected] www.paintoolkit.org

begin to move on 

Tool 2 - Get involved - building a support team

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Tool 3 - Pacing

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Tool 4 - Learn to prioritise and plan out your days

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Tool 5 - Setting Goals/Action Plans

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Tool 6 - Be patient with yourself

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Tool 7 - Learn relaxation skills

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Tool 8 - Stretching & Exercise

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Tool 9 - Keep a diary and track your progress

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Tool 10 - Have a set-back plan

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Tool 11 - Team Work

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Tool 12 - Keeping it going...putting into daily practice tools 1-11.

Twitter @paintoolkit2 “As soon as I saw the Persistent

Pete Moore, who has persistent pain, asthma and osteoarthritis, has put these tools together with the help of friends, family and health care professionals / practitioners. © Pete Moore October 2012

Pain Cycle, I recognised myself straight away and could see why I was so stuck. I printed off the Toolkit and gave it to my doctor. He loved it as well. Thank you toolkit.” H.T. Swansea

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Many people in the world live with day-to-day pain. Pain may be spelt differently around the world… Dhimbje; ցավ;

ağrı; боль; ব্যথা; болка; dolor; 疼痛; bol; bolest; smerte; pijn; valu; sakit; kipu; douleur; dor; schmerz; πόνος; પીડા; doulè; ददद ; fájdalom; verkir; Péine; dolore; 痛み; ನ ೋವು; 통증; sāpes; skausmas; kesakitan; uġigħ; ból; durere; боль; бол; bolesť; bolečina; maumivu; smärta; வலி;

నొప్పి; ความเจ็บปวด ; ağrı; đau; and poen. …But it can cause many problems, which are the same in any language, and it can stop you from doing what you want to do. It is it possible to live a full life in spite of pain? Yes, it is, and I and many others who follow and practice pain self-management skills are living proof that you can as well. 1

How to use ‘Your Pain Toolkit’ Your Pain Toolkit can be used by someone with long term pain on their own, or in partnership with health care professionals which would be ideal. Here is a simple example: If for example you want to build a Pain Toolkit support team but are unsure who to ask or where to start, then ask a health care professional, or a family member or friend for some help to make a list.

Important message from Pete and of course the motivational bit…. Pete says “self-managing pain or a health problem is not as hard as you think and the best way to approach it is by taking small steps. Be patient with yourself. As that saying goes ‘we want to run before we can walk’. But easy does it, be patient, Pete Moore

you will get there.”

Always ask for help and support from your Pain Toolkit Team. In time you will become more confident, and in control of your pain. On the next page is the Index explaining what’s in Your Pain Toolkit but I also know you want to get cracking, and to start learning how to self manage your pain. But before you do, it’s really helpful if you knew more about ‘what is pain’ (see page 5) and the ‘pain gate’ what is it, why you need to know about and of course a simple explanation. (See page 6)

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INDEX:

Page 2: How to use the Your Pain Toolkit and an important message from Pete - and of course the motivational bit…. Page 5: What is pain? Page 6: The Pain Gate, what is it, why you need to know about and of course a simple explanation Page 7: Introduction and do you want to read the Your Pain Toolkit? Page 8: The Persistent Pain Cycle Page 12: Tool 1 - Accept that you have persistent pain ...and then begin to move on Page 15: Tool 2 - Get involved - building a support team Page 18: Tool 3 - Pacing (daily activity management) Page 22: Tool 4 - Learn to prioritise and plan out your days Page 24: Tool 5 - Setting Goals / Action Plans Page 27: Tool 6 - Being patient with yourself Page 30: Tool 7 - Learn relaxation skills Page 32: Tool 8 - Stretching & Exercise Page 37: Tool 9 - Keep a diary and track your progress Page 39: Tool 10 - Have a set-back plan Page 42: Tool 11 - Team Work Page 44: Tool 12 - Keeping it up...putting into daily practice tools 1-11. Page 46: More about Pete Moore Page 47: Feedback from people who use the Pain Toolkit Page 49: Using the Internet Page 50: The Pain Toolkit workshops Page 52: Useful website links for information and support Page 53: Pain Toolkit notes. Space for you to make notes Page 55: Your Pain Toolkit is dedicated to Page 56: Pete’s journey Page 59: Your Pain Toolkit word search

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What is Pain? There are two main types of pain: Acute pain begins suddenly and doesn’t last for too long. Chronic pain, sometimes called persistent or long-term pain, is pain that last longer than three months. Why do we get pain? Pain is like a warning, just like the warning light on a car telling us something is wrong and needs attention. It is our body’s way of telling us that we are either harming ourselves or about to hurt our self, so that we can do something to stop it. For example, when you touch something hot, the pain makes you move your hand to stop you burning yourself. This is acute pain. After you have injured yourself (e.g. breaking an arm) your brain keeps sending pain messages for a while. This isn’t because your arm is still being damaged, but as a way to stop you moving it too much so that it can heal quickly. When the bone has healed, the pain goes away as your arm doesn't need protecting any more. Pain is a message created by your brain telling you to protect yourself. So what is long-term pain? Sometimes, pain sticks around longer than it needs to. The usual medical treatment doesn’t work very well for this long-term pain and it is sometimes tricky for doctors to treat. After breaking an arm, if the pain is still sticking around, this pain doesn’t mean the painful area is still being damaged. In fact, in many cases the area can be completely healed, making it hard to understand why it still hurts. When this happens, the brain seems to be confused, sending pain messages when it doesn’t need to! We can get confused, angry and upset.

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The Pain Gate, what is it, why you need to know about and of course, a simple explanation (Many thanks to Jessica Bird for sharing this simple explanation)

You might hear health care professional talk to you about the Pain Gate, how it works, what opens it and what closes it. But if they don’t, here is a simple explanation. As we can see, pain isn’t very simple to understand or manage. However, we have a simple way of understanding how pain works called the Pain Gate. The ‘Pain Gate Theory’ tells us that there is a ‘gate’ in your body that controls which pain messages reach the brain. Remember, it’s the brain that makes you feel pain, so if these messages don’t make it to the brain then you won’t feel it! 

When you are stressed does your pain hurt more?

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Is your pain better when you are relaxed and happy?

This is because certain things that we do can either open or close the gate; changing how many pain signals reach your brain. Below is a list of things that can open’s and close the gate.

What opens the Gate?

What closes the Gate?

 Stress  Tension  Anger  Sadness  Worry  Lack of activity  Focusing on pain

 Relaxation / calm  Happiness / laughter  Stretching / exercise  Distraction / physical and mental  Painkillers / medication  Massage  Heat and cold (ice) 5

Introduction and do you want to read Your Pain Toolkit? So here you are. You have probably been given this book to read by a health care professional or friend and thinking to yourself; ‘here we go again, yet another book or something else to read.’ What you really want is your pain taken away, so you can get on with your life. I’m sorry that this is not going to happen, and that’s not what the Your Pain Toolkit is about, but it can provide some simple tools to self-manage it.

Are you like me? As I was in the old days waiting to be fixed?

But before you put this book down or throw it away, I just want to tell you that, strange as it sounds; you can have a good quality of life in spite of your pain. Is it easy? Well that depends on you and how much effort you put in. You can only take money out of your bank account if you have first put money in. Working at pain self-management is like investing in yourself and your future. I get asked by many health care professionals; “When are patients ready to take more control over their pain?” It’s a question I find hard to answer because we are all at different stages and many people may not be ready to take control, they really just want their health care professionals to solve their problems. I understand, as I said, I used to be like that. But if you are one of those people, give the book back and ask for it when, or if, you’re ready and I’ll catch up with you another time. Take care.

For those of you, who are still with me, welcome to pain self-management. Is the road ahead difficult? It could be, and again it depends on you and, of course, your health care professionals because you are both going to work together as a team. By the way, if your health care professional is not interested in working with you as a team, then thank them for their past help and find another one that is willing to work with you and be part of your team. Self-management is not as hard as you think, but you do need to have an action plan and do some work. For me, getting into pain selfmanagement was a slow journey, but it turned my life around from being someone, who thought their life was going to be a miserable one Into..................? Most of all make your pain self-management action plan fun, and involve others such as, your family, friends and work colleagues.

The Persistent Pain Cycle Below is the ‘persistent pain’ cycle. Most people who see this cycle can identify with it and also recognise themselves in three questions below it. Can you?

The Persistent Pain Cycle Persistent Pain/Health Time off work, money worries, relationship concerns

Negative thinking, fear of the future, depression/mood swings

Being less active Loss of fitness, weak muscles and joint stiffness

Sometimes the arrows can also go anti clockwise as well. For example - time off work can lead to negative thinking, fear of the future this can lead to stress fear etc.

Weight gain/loss drug side effects

Create ‘no go’ lists of things you cannot do Sleep problems/tiredness/fatigue

drug Stress/fear/anxiety/anger/frustration

Do you feel trapped in a persistent pain cycle? If so, ask yourself these three questions 1. Do you do more on good days and less on bad days? 2. Are you an over achiever – doing more than you have to? 3. Are you a people pleaser? Do you have a problem saying NO to others when you are asked to do things? When people read these three questions they often recognise themselves and will say “that’s me.” These three questions are not unique to people here in the UK, other people with pain in Europe, Australia, New Zealand and Canada have used the Pain Toolkit to identify with these questions.

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Could you see yourself in the pain cycle and also identify with any of the three questions? Most people do. By the way, it’s nice to see your still here with me. You’re doing well so give yourself a pat on the back. Living with pain can feel like a lonely journey and again why you need to build a Toolkit support team around you. Throughout the next pages I will be expanding on the Pain Toolkit tools from my own experience and providing some quotes from others who have used them and found them helpful. It’s always good to get some feedback about how people use the toolkit tools, so drop me an email at [email protected] Handy tip: show this book to your health care professional and others in your Pain Toolkit support team so they can see what your self-management plan is. Don’t give it to them, just lend it! At the end of the book (see page 53) I have written more about my pain management journey and what I do now.

More about pain and the problems it causes Persistent pain (sometimes called chronic or long-term pain) is :Pain that continues for 3 months’ or more and may not respond to standard medical treatment. It can be disabling and frustrating for many people to manage. It can also reduce our confidence to do things, affect our relationships with family, friends and work colleagues.

People with persistent pain are sometimes told by their healthcare professionals, (after they have had an assessment): “I am afraid you have chronic or long-term pain. You will have to learn to live with it.”

To date, your healthcare professionals may have done all that they can to help you and may have used many of the tools available in their toolkit. However there are so many things that you can do to help self-manage your pain with the right kind of support from your health care professional, family, friends and work colleagues. All you need to do is be willing to ask for help and develop a support team. 2

Have you become a ‘can’t do’ person? A ‘can’t do’ person is someone who has tried to carry out or take part in everyday tasks such as going to work, doing the house work, gardening, playing a sport, taking holidays, going to the cinema, eating out or taking part in family activities, but has stopped or given them up because of their pain. When this happens it is usual for confidence levels to reduce. Is this ringing any bells? If you have reached this

“Sorry Pat, I don’t think I can wash the car. I think you will have to get someone else to do it in future.”

point you need to stop and take action.

By taking on board and practising the tools in the Pain Toolkit you could become a ‘can do’ person again, but it could take time, so please be patient with yourself.

So is persistent pain a problem here in the UK? The short answer is yes, so you are not on your own. Here are some alarming facts from the Chronic Pain Policy Coalition www.paincoalition.org.uk

Persistent pain affects 7.8 million people of all ages in every parliamentary constituency of the UK. 70% of people with persistent pain are under 60 years old.

Why do I need to manage my pain? After all I see my health care professional and aren’t they supposed to do that for me? Many people with persistent pain see their health care professional for treatment, help and support. But have you actually estimated just how many hours during the course of a year you spend with your health care professional?

It has been said that people with health conditions (including pain) may spend less than 3 hours a year on average in contact with a health care professional. For the remaining 8,733 hours of the year they are on their own. So the need to learn pain self-management skills and incorporate them in everyday activities is very important.

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So as you can see, the need to become more involved in your own pain selfmanagement is both necessary and important. It is certainly not all up to your doctor or health care professional to manage your pain. You have to play a vital part as well it is all about teamwork and getting involved. Your next question may be; “Well, how can I become more involved and how do I get started?

Using different skills and tools can be helpful. It is like a motor mechanic who has many tools in his / her toolbox to repair and maintain cars. People with pain also need a selection of tools to help them successfully self-manage it. You may not need to use all the tools suggested in the toolkit, but like any good motor mechanic, it is best to have a variety of tools at the ready to use when and if they are needed. Selfmanaging persistent pain is not as hard as you may think—so let’s get started and look at the first tool in your new pain self-management toolkit on the next page.

The Pain Toolkit Tools Tool 1 - Accept that you have persistent pain ...and then begin to move on Tool 2 - Get involved - building a support team Tool 3 - Pacing (activity management) Tool 4 - Learn to prioritise and plan out your days Tool 5 - Setting Goals/Action Plans Tool 6 - Be patient with yourself Tool 7 - Learn relaxation skills Tool 8 - Stretching & Exercise Tool 9 - Keep a diary and track your progress Tool 10 - Have a set-back plan Tool 11 - Team Work Tool 12 - Keeping it going...putting into daily practice tools 1-11.

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Tool 1 - Accept that you have persistent pain ….and then begin to move on Acceptance is the first and the most important tool in your pain self-management toolkit and for many people with pain, the most difficult. It is important to understand that acceptance is not about you giving up. It is about recognising that you need to take more control of your life, in order to become a better self-manager of your pain. You will need support from your family, health care professionals, friends and work colleagues, but you need to work together as a Toolkit team! Acceptance is a big one for many people, and many people fight it. I also found acceptance difficult and in the early days I was looking for the ‘fix’ for my pain. I didn’t want to take responsibility for my back pain. I spent around £8,000 seeing many different health care professionals. I saw anyone with an -‘ology’ or an ‘ist’ after their name. The money ran out and I was still in pain. I had to take action, I had to accept I was the person with the pain and I was the main person who was going to deal with it. This was a tough one to accept, especially for a guy who was brought up on a street market and taught to be tough. But accept I did, and guess what? - soon after I did, simple things started to fall into place and get better. Acceptance is also a bit like opening a door - a door that will open to allow you to discover many self-management opportunities. The key that you need to open this door is not as large as you may think. All you have to do is be willing to use it and try to do things differently. Keep an open mind and you will be able to manage better with the uncertainty and experience the exciting changes ahead.

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More about acceptance In recent years, there has been a lot of new information / skills / techniques about using acceptance for managing pain. It’s sometimes called Mindfulness. If you want to explore this a bit more, then visit the www.breathworks-mindfulness.org.uk It’s an easy site to get around, with lots of easy to understand information on it.

Vidyamala Burch - Breathworks Founder. Vidyamala (and a good friend of mine) sustained a spinal injury when she was sixteen. Over twenty five years ago she started exploring mindfulness and meditation techniques to manage her own persistent pain and in 2001 began offering these skills to others, initially with funding from the Millennium Commission. Breathworks is now an international organisation offering a lot of different products and courses, including online courses and materials. She wrote 'Living Well with Pain and Illness' now in 11 languages and is writing a second book due for release in September 2013.

“I found this one of the most difficult tools to accept but I think the most important before I could move on”. B.B. Notts

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What three things have I learned about acceptance?

1………………………………………………… 2………………………………………………… 3…………………………………………………

What will I try? ………………………………………………. ………………………………………………. ………………………………………………. ………………………………………………. ……………………………………………….

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Tool 2 - Get involved - building a Pain Toolkit support team I think you need to now ask yourself what does getting involved and building a Pain Toolkit support team mean you? The fact that you are still reading the book will probably mean you have got involved, so let’s look at building a support team.

Who could be in your team? 

Your partner and family

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Your GP

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Other health care professionals such as your Practice Nurse / Physiotherapist / Occupational Therapist

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A couple of close friends

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Your employer, and work colleagues

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Your teachers/lecturers if you are still at school / college / university. Successful self-management is ‘team work’. Choose and develop a team and talk through each other’s roles and responsibilities. Here are some simple examples:

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Speak with your family about what you do

around the home; perhaps do some vacuuming, or cooking, washing up?

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Ask your GP to review any medications you may be taking for your pain or other health conditions.

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If you are seeing a Physiotherapist or Fitness Coach, ask them if your stretches / exercises need to be modified?

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Review your performance at work with your employer. Do you need more or less support?

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Pain and long-term health conditions can strip away or reduce your self-confidence and is why many become ‘can’t do’ people. I was very much a ‘can’t do’ person in the early days of my pain problem and my ‘can’t do’ list grew every month.

One problem was that when I felt like it I would

Pain can cause difficult emotions like confusion, anger and frustration.

have a go at doing something, without a proper plan or support, and of course I was so frustrated I usually overdid it. My pain would increase afterwards, so I had to rest and recover – more frustration and more pain! I had what I began to call my 1M25 thinking problem; I was going around in circles. Have you got the M25 thinking problem?

For many years, my pain isolated me from my friends and life. I more or less became a recluse, losing the confidence to go out or be with people. To be able to just do the normal stuff. I really thought I could find a solution to my pain, after all they have put a man on the moon hadn’t they, and surely there was going to be a cure for my pain. The biggest mistake I made was thinking only one treatment or health care professional would help me. When I read Pete’s Pain Toolkit and the bit about building a support team, I could see where I going wrong, I needed help and fast. I guess losing my confidence made me think people may not want to help and support me. How wrong was I! I have a great team around me now, friends, family, colleagues from where I used to work and of course a great Practice Nurse. And yes, I’ve got my confidence back and going to start a small business soon. I think being self-employed is a better option for me, as I can take breaks when I want to, and stretch when I need and want to. P.T. Essex

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M25 is the orbital motorway that circles London and doesn’t really go anywhere

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What three things have I learned about getting involved - building a Pain Toolkit support team?

1………………………………………………… 2………………………………………………… 3…………………………………………………

What will I try? ………………………………………………. ………………………………………………. ………………………………………………. ………………………………………………. ……………………………………………….

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Tool 3 - Pacing (daily activity management) All tools in the toolkit are important, but pacing is an essential one. Going back to the questions I asked on page 8 1. Do you do more on good days and less on bad days? 2. Are you an over achiever – doing more than you have to? 3. Are you a people pleaser? Do you have a problem saying NO to others when you are asked to do things? My guess is you answered yes to two or three of them. Remember my M25 problem? I now know this to be part of getting stuck in a ‘boom and bust’ cycle. See below, look familiar?

Boom Overdo it – causing a set back

“I’ve over done it again so I’d better stop doing things because I don’t feel well – I’d better rest.”

“I’m starting to feel better I’d better catch up with things I had to stop.”

Bust Going back to the M25 – what is the difference between getting stuck on the M25 and getting stuck on the Boom and Bust cycle? At least with the M25 you can get off it! Over achieving will slow down your progress, as you have to take time out to recover each time you do it. So it is best to recognise where and when you over achieve and learn about pacing daily activities. People with pain are often not very good at pacing their everyday activities and this is often why they get ‘flare – ups’ in their pain and to experience set-backs.

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Here are some reasons people give when falling into the boom and bust cycle. 

Using pain as a guide as to when they should start or finish a task/job

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Another version is Mastermind syndrome: “I’ve started so I will finish”

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Being active takes it 'out' of them – feeling tired or fatigued

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Demands from work or the family – finding it hard to say no if asked to do something

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Trying to keep doing things; ‘the way I always did’

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Using ideas such as ‘No pain, no gain’

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Find it hard to say no to people

Pacing is: taking a break before you think, you need to throughout the day. When you start trying to do things a good guideline is; do less than half what you would do on a ‘good day’ – in other words, even if you feel like doing more, remember it’s much better to do something every day and not fall into the boom and bust cycle. Remember the old saying…“How do you eat an elephant?” Answer: One bite at a time! Pacing is carrying out activities one bite at a time, and not tackling all of them at once. “I was a total over-doer and used my pain to tell me when to stand, sit or walkpacing is the key”. F.F. Cambridgeshire Discuss with your Pain Toolkit support team: 

Times when you do more on good days and less on

Handy tip:

bad ones 

When and where you over achieve

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How to start and increase your pacing skills

Now you and your Pain Toolkit support team make a list below 

…………………………………..?



…………………………………..?



…………………………………..?

I wear a pedometer on my belt and look at it throughout the day. It tells me if I’m not doing enough or if I’m doing too much. Mainly, it stops me from over-doing.

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Examples of pacing your daily activities

Ironing As an alternative to doing a large amount all in one go, do smaller amounts frequently. Instead of doing all the ironing at once, spread it over several days. E.g. have two or three piles.

  

an urgent pile a not so urgent pile, and... ‘I can do that at the end of the week’ pile.

Shopping Instead of doing one large weekly shop, cut it down to a few trips to the shops every week. Divide your shopping into more bags, so that you are not lifting and carrying heavy bags. Remember to ask staff at the shop to help carry the shopping and put it in your car; remembering to get someone (family or a neighbour) to lift and carry your shopping into the home. Or consider 2Internet shopping, and then you just have to pack the items away once they have been delivered to your home.

These are just a couple of examples. There may be many other every day activities that you need to think through before you tackle them.

If you stop and think about what you intend to do BEFORE you do it, then there is less of a chance that you will have a setback which in turn increases your pain. Remember: Pacing is ‘taking a break before you need it’ and spreading out your activities.

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http://en.wikipedia.org/wiki/Online_shopping

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What three things have I learned about pacing?

1………………………………………………… 2………………………………………………… 3…………………………………………………

What will I try? ………………………………………………. ………………………………………………. ………………………………………………. ………………………………………………. ……………………………………………….

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Tool 4 - Learn to prioritise and plan out your days Prioritising and planning were never strong points for me even before my pain problems, so this was a hard one for me to get my head around. Today, I use a daily and weekly ‘to-do list’, but I keep it simple and remember not to put too much in, so I don’t put myself under unnecessary pressure. Don’t forget to tick-off what you have done.

Like the footballer who has to adapt their game as they get older, I realised I had to change my game / work / pleasure schedule to fit around me, my pain and health conditions.

Many people with pain are often not very good at recognising that pacing, planning and prioritising all go hand-in-hand.

Prioritising and planning your activities and days are essential tools in addition to pacing. Make a list of things you would like to do or need to do but remember keep it flexible.

Examples from the Pain Toolkit: (but you may have some of your own) 

Monday a.m. - vacuum the living room and have a couple of breaks so that I pace myself

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Monday p.m.- prepare food for evening meal - sit down to do this

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Tuesday a.m. - go swimming - meet friend for a coffee/tea - practise some relaxation when I get home.

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Tuesday p.m. - I will write an activity plan for the next day.

Again, get help with prioritising and planning your activities from your Pain Toolkit support team.

“Prioritising was at the bottom of my list, having a family meant I had to get things done. But prioritising it does work, when I make a list and got others involved, my pain reduces”. T.F. Essex 15

What three things have I learned about prioritising and planning out my days?

1………………………………………………… 2………………………………………………… 3…………………………………………………

What will I try? ………………………………………………. ………………………………………………. ………………………………………………. ………………………………………………. ……………………………………………….

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Tool 5 - Setting Goals / Action Plans Sometimes people want to run before they can walk as the old saying goes. Why? For many reasons: They start to feel better and want or need to catch up with activities they have stopped doing. They feel pressured by others (I think we can all identify with this one). When they have set goals before, either they have never worked out or they haven’t been able to complete them – so they tend to go on the ‘cant-do list’.

To avoid this happening, it is best to set yourself simple, realistic goals or action plans. Just as you need goal posts when playing football, or a finishing line when racing - you need something to aim for. A goal is something to aim for but sometimes needs to be broken down into smaller steps and these are called Action Plans. They could be hourly, daily or weekly action plans.

For example a long-term goal could be to go on a walking holiday, but realise you need to be fitter. So to become fitter you could set yourself and action plan to go swimming, which is a low-impact exercise which will help with your fitness Here is an example of an action plan: 1. What is it I want to do – be specific?  Going swimming 2. When will I do it – name a day and time?  Monday, Wednesday and Friday 3. Will I need support?  Yes, I will ask my friend Pat to come with me 4. Is it achievable?  Yes, 5. How confident are you between 1–10 you will be able to achieve going three times?  Yes, I’m confident and say 7

If your confidence is less than 7, then you could be saying to yourself you may not be confident with your action plan, so you need to adjust or reduce it. So perhaps just going swimming on Monday and Friday. Keep it simple, there is no point in setting yourself up to fail is there? Pain self-management is about increasing your confidence. 17

Remember to start off with small, achievable action plans and increase them as your confidence grows. It’s easy!

Ask your Toolkit support team to help you set yourself a goal and write your action plan if you are unsure

Top tips:  Remember it’s you who sets your goals and action plans and they are not someone elses!  Start off with very small goals and when you become more confident, set bigger ones.

“Didn’t have any goals because when I arranged or set them I failed – action planning is a winner for me and the family”. N.N. Norfolk “I used to make plans to do things, but I was over ambitious with them. I think I was trying to keep up with other people. I soon learned that I had to work at a pace that was slower and better for me. I now set myself more realistic goals and action plans. I guess you could call it a shopping list, a list I make before I go shopping for food. T.F. Essex “I found making simple action plans works for me. It’s helped me to boost my confidence.” D.D. Dorset

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What three things have I learned about setting goals and action plans?

1………………………………………………… 2………………………………………………… 3…………………………………………………

What will I try? ………………………………………………. ………………………………………………. ………………………………………………. ………………………………………………. ……………………………………………….

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Tool 6 - Be patient with yourself The frustration or anger of not being able to do what you used to do, does get to most people, whether you’re a young person or an older person.

This is where acceptance came to the rescue for me again. You only have to ask people who know me and they will tell you that I’m not the most patient guy they know. I had to learn really quickly to be more patient in learning to self-manage my pain and other health conditions. I’m better, but still learning this tool.

Why me, anger and frustration

Emotions like anger, fear and frustration can also kick in and these are extra problems to deal with. I’m not going to go into these too much, because they can be complex for some people and best discussed with people who can help such as people like me who have been through this, counsellors or other health care professionals. All I will say is that I was fearful about my future; I was frustrated about the simple things I couldn’t do, like opening a food packet because of my arthritis in my hands and I was angry about why this was happening to me. One of the things I learned was to recognise when these simple things were winding me up and to use simple relaxation techniques such as deep breathing to calm down. It really helps! More about this in the next section. When we see some improvement in our pain or health, we tend to start to over achieve and so we need to keep on the

Over achieving

lookout for this.

Self-management is not like instant coffee. Many people with pain, when they begin to feel better and more confident, want to get back to old activities, playing with the children, DIY, gardening etc., and in most cases without a plan. Take things steadily. It may take you a few weeks or months to see big changes or improvements. Don’t be tempted to over-do it, otherwise your chances of yet another set-back could increase. A good saying is; ‘take things one day at a time’. And also….ask for help and support from others—it’s not a sign of weakness but a sign of strength! 20

I admit that asking for help can be difficult, but it’s often the first step on a journey of learning how to manage your pain. One place you could go to get help and support is Big White Wall (BWW) www.bigwhitewall.com the online support service for people living with emotional or psychological distress. It’s completely anonymous, and costs just £2.00 a week – or free if you’re a patient in certain NHS trusts, or a member of the armed forces community.

The BWW can really help you learn to manage any difficult emotional states you might experience, and gives you the support of a community when times are tough. There are also trained staff called Wall Guides, who will provide help and support at any time. On BWW you can talk freely about your emotions, and also find information and guidance on sleep, relaxation and 3mindfulness, as well as creative ways to express your feelings and talk about what’s going on, helping you cope with your negative thoughts about your pain. So, whatever is bothering or upsetting you, log on to www.bigwhitewall.com for safe, anonymous support at a time that suits you. P.S There’s even a way of booking online therapy or counselling sessions that you can access from your home computer, which is really useful if your mobility is restricted, or if it’s not convenient for you to attend therapy appointments outside of your home.

3

Mindfulness – www.breathworks.co.uk 21

What three things have I learned about being patient with myself?

1………………………………………………… 2………………………………………………… 3…………………………………………………

What will I try? ………………………………………………. ………………………………………………. ………………………………………………. ………………………………………………. ……………………………………………….

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Tool 7 - Learn relaxation skills Most people with pain (including me) are not very good at relaxation, and relaxation skills are very important for untensing muscles in the body and for unwinding the mind. Pain wants to keep grabbing our attention, so we need to learn relaxation techniques.

But we need to find a form of relaxation to focus our minds; especially when we are experiencing a set-back. For me I find exercising at the gym quietens my mind and helps me to relax, but let’s look at some other below.

Relaxation could be: 

Reading a book



Listening to some music or the radio programmes



Gardening



DIY



Yoga or Tai Chi



Watching TV (but don’t forget to get up and move around during the breaks)



Meeting friends for a coffee/tea



Going to the cinema or a restaurant (choose a seat where you can get up and move around if necessary)



Belly breathing (diaphragmatic breathing – ask your health care professional to show you)



Meditation



Writing



Dancing

“Glad I’ve learnt relaxation – worked wonders on reducing my discomfort”.



Walking

S.B.. Suffolk

What others can you add?

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....................................................

....................................................

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What three things have I learned about relaxation?

1………………………………………………… 2………………………………………………… 3…………………………………………………

What will I try? ………………………………………………. ………………………………………………. ………………………………………………. ………………………………………………. ……………………………………………….

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Tool 8 - Stretching & Exercise I used to fear exercise, in case it caused more problems and increased my pain. But I realised when I attended the INPUT pain management programme that by not keeping active (in a pacing way) stretching and exercising was actually increasing my pain. I soon discovered that getting active decreased my pain, my asthma improved, my mood changed and I started to feel more confident and began to think like a ‘can do’ person again.

In 2006 I was encouraged to start going to the health club (a gym to you and me and I would like to say thanks to Kim & Ben for the encouragement to go) and I soon discovered even more positive changes. My pain levels dropped again dramatically and the low-mood which came with the pain, lifted. I have also made some really good mates, and some like me have health problems as well and go because it helps them. Hi to…Ed, (Arsenal) Dave, Trixie, Richard, Mel, Emma, Suzy, Lee, Clayton, Annette, Paul, Marion, Nick the Manager, and all the others at the gym in Colchester, Essex.

The fear of exercise can cause more problems. Worrying that you can cause damage through exercise is unhelpful thinking. It often does hurt more when you start exercising simply because you are doing more with your body, but it’s not something to be frightened of. You are very unlikely to be doing yourself any harm through gentle exercise. If you are not sure about this talk to your healthcare professional.

What do cats and dogs do when they wake up in the morning? They stretch! So which hospital did the cat or dog go to, to learn this skill or habit? Of course they didn’t, they just do it naturally. You may feel more pain/discomfort when you start to exercise and this is normal. Talk with your physiotherapist or fitness coach about developing an individually tailored stretching and exercise programme that you can work on steadily and safely. This will help you build your confidence, muscle and joint strength. Remember that swimming (or just walking up and down in the pool) is also a low impact exercise and is good if you have joint problems.

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16 reasons why stretching and exercising (don’t forget swimming) is good for you  Helps to improve and maintain good overall health  Increases strong cardiovascular system – heart lungs and blood vessels  Increases muscle strength  Improves flexibility

Always good to have a stretch before and after exercising

 Increases endurance and stamina  Increases natural pain killers (endorphins) in the body which helps control pain.  Helps with weight control  Helps to improve quality of sleep  Helps balance and co-ordination  Reduces fatigue and increases energy  Reduces muscular tension, stress and depression  Helps combat depression and anxiety  Lowers blood pressure  Helps maintain a positive outlook  Helps to prevent constipation  Can be sociable What are some of your suggestions? …………………………………………. …………………………………………. …………………………………………. …………………………………………. …………………………………………. ………………………………………….

Drinking water Water is essential for a healthy life so drinking plenty of water is important for everyone. It’s even more important if you are taking part in physical exercise, so make sure you keep properly hydrated before, during and after exercising.

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Here are some guidelines about stretching and exercising: Before you start – DO: 

Make sure you take things at your own pace especially if you are stretching and exercising with someone else – do not be competitive



Set a goal before you start of exactly how much you are going to do and stick to it – even if you feel you could do more!



Make sure you drink water before, during and after you exercise



Wear good footwear (trainers) and suitable loose fitting clothing



Enjoy yourself – exercising can be fun!

DO NOT: 

Continue with a stretch / exercise if it makes your body hurt (please remember, it is not uncommon to feel some discomfort when you start to stretch/exercise). Please see your GP if you are not sure



Eat a large meal before exercising



Stretch/exercise to loud vibrant, fast or energising music, as this may make you want to ‘over achieve’



Do exercises on stone or concrete floors or hard surfaces



Exercise if you feel unwell.

GP Exercise on Referral Exercise on Prescription If you are unsure about becoming active or exercising, your GP can refer you to their GP Exercise on referral scheme or sometimes called Exercise on Prescription. These types of schemes are run within local council run gyms or fitness centres and can include facilities for swimming. Ask at your GP surgery for more information and about other pain management support available. Walking for health Also find out more about ‘Walking for Health’. These are usually run locally by your local Borough Council. Please also visit the Walking Health Initiative website. www.whi.org.uk

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Exercise programmes Sometimes it can seem as though there are as many exercise programmes as there are different makes of cars on the road. Here are a few common ones.  Yoga

Body care: Looking after your whole body is very important, so please think about: -

 Tai Chi  Pilates

(pronounced Pil-ar-tes) Please make sure that your teacher is qualified and experienced in teaching people with persistent pain. You should be encouraged to exercise at a pace that feels right for you.

 Eating healthy food  Sleep – sleeping only at night and avoiding cat naps during the day

 Hygiene – washing and grooming your body

Good websites to get you started and resources www.exercise-works.org

daily. Looking after your body is very important and so it is vital that you look at what you put into it,

www.walk4life.info

that you get enough of the healthier types of food and the right amount of sleep and you also keep yourself clean.

“I asked my GP about putting me on the ‘exercise on referral’ scheme (may be called something different in your area) I met others just like me with similar problems. I go three times a week now and have a coffee afterwards with my new friends.” B.B. Essex

B.B. Essex

IMPORTANT: Please seek the advice of your GP or Chartered Physiotherapist before starting any stretching or exercise routine.

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What three things have I learned about stretching and exercising?

1………………………………………………… 2………………………………………………… 3…………………………………………………

What will I try? ………………………………………………. ………………………………………………. ………………………………………………. ………………………………………………. ……………………………………………….

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Tool 9 - Keep a diary and track your progress Keeping a diary of your progress will help you see how far you have come and you can see the successes achieved. This will help you build your confidence. But it is also handy to note what didn't work, so you can learn from those experiences. We sometimes learn more from our errors than from our successes. We all need to look back at our self-management plan, to see what’s worked, what didn’t and learn from it. Write down one piece of evidence each day to show how positively you are self-managing pain. Doing this has been shown to increase people’s confidence. Example of pain self-management diary How did I do, my effort 1 - 10

Pain/discomfort Rate 1 - 10

How did I deal with it?

Gardening

7

5

Took extra breaks

13/11/11

Gym

8

2

14/11/11

Office

7

3

Date/Time

Activity

12/11/11

work

15/11/11

Cinema

Took more stretch breaks

7

5

Booked seat at rear of Cinema so I could get up and stretch

16/11/11

Meeting in London

7

4

Got earlier train so I could get a seat

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What three things have I learned about keeping a diary and tracking my progress?

1………………………………………………… 2………………………………………………… 3…………………………………………………

What will I try? ………………………………………………. ………………………………………………. ………………………………………………. ………………………………………………. ……………………………………………….

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Tool 10 - Have a set-back plan Is it realistic to think people with pain will never have a set-back? The simple answer is NO! No matter how good a self-manager

Set Back

you think you are and because you may be an over-achiever like

Plan

me and many others; you probably will over-do an activity and experience a set-back. Other people have set backs for different reasons such as getting stressed or not sleeping well.

Having a set-back plan is like having a spare tyre in your car. Would you take a journey in your car without a good spare tyre? No of course you wouldn’t.

Remember, it is easy to forget to pace yourself or not do regular relaxation and in turn you may experience a set-back! So the first thing is not to is panic, but many people do. It is best to have a set-back plan if one occurs.

Set-backs are usually caused by doing too much - overdoing it, pressure from others, or just forgetting you have a pain problem. Don't get annoyed with yourself; it is common to occasionally have set-backs.

(Did I do too much or have I slowed up with my exercises?

“This was the best tool for me – it’s like having a spare wheel if I had a puncture”.

Was I worrying about something?) This will be useful

F.N. Sussex

Developing a set-back plan is good pain self-management. Ask for help from your Toolkit support team to develop one. Make a note of what triggered the set-back and what helped.

information if or when you experience another.

Having a set-back plan As I said before try not to panic. Prioritise your responsibilities. Pace yourself. Break up tasks into smaller portions. Rest in between. Reduce your activities until the setback settles. Be kind to yourself. Do some extra relaxation. Maybe take some ‘emergency’ pain killers. Say ‘NO’ to any unnecessary demands put upon you until you are feeling better. And…... don’t be too proud or scared to ASK for help!

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Taking your medication Follow or ask the advice of your GP or Pharmacist about medication and when you need to take it. If you have to take regular medication think of ways to remind you to take it. Many people just simply forget. Use post it notes, a timer or get someone to remind you.

For musculoskeletal pain (back, leg, arm, neck etc.) Try applying heat and / or ice in a way that makes you most comfortable. To relieve initial pain, you could apply ice packs wrapped in damp towels for 5 minutes every hour for the first one or two days. Always make sure you have a cloth of some type between your skin and the ice, to prevent an ice burn. It is not recommended that you lie on an ice pack. (People with rheumatic problems may prefer to use heat rather than ice). Again, if you are not sure, seek advice from your GP or health care professional.

Easy does it. Briefly cutback on usual activities, lie down for a short while and relax but not for too long. Bed rest weakens muscle strength rapidly, you lose about 1% of total muscle strength a day if you become inactive - remember keeping active and mobile can actually speed your recovery. Start moving gently Remember to pace yourself. Begin gentle stretching and movement as soon as possible to regain normal suppleness. Keeping active may seem alien to you, but in pain self-management terms, learning to live with a persistent pain is a skill to be learned. Don’t be put off – it does work!

Relaxation Using relaxation is another good way of managing a set-back. Also accept the situation that you are experiencing a set-back, and just as it came, it will go. Perhaps he should have stretched before washing the car?

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What three things have I learned about having a set-back plan?

1………………………………………………… 2………………………………………………… 3…………………………………………………

What will I try? ………………………………………………. ………………………………………………. ………………………………………………. ………………………………………………. ……………………………………………….

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Tool 11 - Team Work Again, we are coming back to Teamwork. Selfmanaging pain means involving others and building a Toolkit support team around you. Imagine the Arsenal football team playing without a team plan. Managing pain is not a ‘one way street’ and it is unrealistic for you to think that your health care professional can totally solve it. But developing and having a Toolkit support team will mean support and help will be there when and where needed.

Team work between yourself and your Toolkit support team could include:

Healthcare professional (s)



Partner and family



Friends



Social care



Work colleagues



Employer - Human resources (HR)



Teachers / Lecturers



…………………………….?



…………………………….?



…………………………….?

It’s your Pain Toolkit team, so include who you want. If you find one of your Pain Toolkit support team isn’t right for you or you outgrow them, then thank them for their support and then substitute them for another.

Together, work with each other, to develop or set a Pain Toolkit Team Action Plan. This action plan could help you both to track progress together. “Me and my doctor were speaking to each other in foreign languages. But he’s now read the Pain Toolkit and now we do understand each other”. B.B. Northants 35

What three things have I learned about teamwork?

1………………………………………………… 2………………………………………………… 3…………………………………………………

What will I try? ………………………………………………. ………………………………………………. ………………………………………………. ………………………………………………. ……………………………………………….

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Tool 12 - is keeping it up…putting into daily practice tools 1 - 11. So, you have made it and have come to the last Tool in the Pain Toolkit. Well done and good to share the journey with you so far.

Here are some final words, whether they are words of wisdom, I will leave it up to you to decide. Good self-management happens when you work together with your Pain Toolkit support team.

Be open to other pain management ideas or self-development concepts, as we progress in our recovery. ‘You may be asking yourself; Do I have to put these tools into daily practice? “What? every day”? The simple answer is Yes! Just as the person who has diabetes has to take their treatment / medication and maintain their diet daily, your treatment is:

Planning / prioritising,



Pacing,



Setting weekly or long-term goals / action plans,



Relaxation,



Stretching / exercise,



Generally keeping active and being in charge of your pain or health conditions.



And of course working with your Pain Toolkit Team

Keeping it up is difficult for many people, but it’s not as hard as you think, once you have set yourself a routine. Just like brushing your teeth, self-managing will become a habit. Get others involved and make self-management fun. It’s also good to find out what other resources are available in the area so I encourage you to find about them. One of my favourite books is 4Who Moved My Cheese which helped me to deal with new changes and challenges in my life living with pain. The book is simple story and reveals profound truths about change that give people and organizations a quick and easy way to succeed in changing times.

4

http://www.whomovedmycheese.com/BooksBySpencerJohnson.html

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What three things have I learned about keeping it going… putting into daily practice tools 1 - 11?

1………………………………………………… 2………………………………………………… 3…………………………………………………

What will I try? ………………………………………………. ………………………………………………. ………………………………………………. ………………………………………………. ……………………………………………….

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More about Pete Moore, and the Pain Toolkit Pete co-wrote the original Pain Toolkit with Dr Frances Cole and he lives in North East Essex and is a keen promoter of pain self-management and self-management of other long-term health conditions. He has written several pain self-management programmes and books. 

Managing Your Pain One Day at a Time



Persistent Pain, Self-Managing it

Pete is often asked to provide educational seminars for health care professionals and patient groups in the UK and Europe. He works with 5Dr Reinhard Sittl in Erlangen, Germany, developing new and simple ways to educate both health care professionals and patients, now and in the future. Pete is a member of the: 

British Pain Society www.britishpainsociety.org



International Association Study of Pain (IASP) www.iasp-pain.org



Australian Pain Management Association www.painmanagement.org.au Dr Frances Cole is a:Frances Cole is a part time GP and pain rehabilitation specialist working in West Yorkshire. She trained in cognitive behavioural therapy at Newcastle CT Centre in 1993-4. In 1996, she started the first UK multidisciplinary primary care pain

Dr Frances Cole

rehabilitation service in Bradford based on cognitive behavioural

therapy principles. She continues to run this service and works in clinical health psychology at Bradford Teaching Hospitals using CBT in a wide range of mental and physical health problems. She has developed a pain health needs assessment tool that won a NHS Modernisation award in 2005. She runs a range of workshops and training courses for primary care trusts in Yorkshire and UK for primary care practitioners in CBT techniques for both mental health, chronic pain and long term health condition self management. Frances is a member of the British Pain Society and co-author of the self help guide 6Overcoming Chronic Pain which can be bought on the www.paintoolkit.org/store

5 6

http://www.schmerzzentrum.uk-erlangen.de/e1585/e18/index_ger.html http://www.amazon.co.uk/Overcoming-Chronic-Pain-Behavioral-Techniques/dp/1841199702

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Feedback from people who have used the Pain Toolkit Pacing I found the ‘pacing’ tool most effective for me. I was one of those people who always did an activity until the pain became too excruciating and only then I would stop. Now that I pace my activities, I feel I can do more without the pain increasing. Keeping a pain diary also helped me to see where I was doing too much. H.T. London “The Pain Toolkit is a very helpful common-sense publication that offers much support to anyone with a pain problem. Helping people to stay in control of their own lives and to be able to look after their own wellbeing is very beneficial and helps to improve quality of life. This booklet provides a rich variety of advice and guidance and I recommend it as a useful resource for people living with persistent pain, their families, and also as a resource for the healthcare professionals who support them.” Dr Nick Kendall Past President, New Zealand Pain Society Acceptance...is the key I didn’t like that when I read it. Who was this Pete Moore telling me that I had to accept my pain? But when I sat down and thought it through, acceptance is the key to moving on and I now feel I have done that. By using some of the tools, I have got my family life back and even returned to work. M.E. Chelmsford “I provide Pete’s Toolkit to all patients attending our clinic as we regard it as an essential part of our approach. The feedback has always been very positive; the workbook takes this further forwards and I look forward to supporting it.” Dr Cathy Price MB BCH, DCH, FRCA, FFPMRCA Consultant in Pain Management, Southampton University Hospital NHS Trust & member of the Chronic Pain Policy Coalition.

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Action Planning For me every day was the same. Get up, have breakfast, watch TV, have lunch, watch TV, the family would come home from work, watch more TV. Learning to set simple action plans has helped me to break these boring habits. I now set simple goals so that I regularly stretch and exercise and of course include relaxation. Guess what? I now watch less TV. I feel more in control, and have less pain. B.B. Essex “We give out Pain Toolkits almost everyday in Birmingham to people with long term pain, as part of our NHS work, supporting people in developing their understanding and skills in self-management. It really helps to have something that has been put together by someone who has been there themselves, rather than a health professional. Lots of people give it to their families to explain what they are trying to do.” Dr Patrick Hill, Consultant Clinical Health Psychologist, Pain Service Birmingham Community Healthcare NHS Trust

As soon as I saw the Persistent Pain Cycle, I recognised myself straight away and could see why I was so stuck. I printed off the Toolkit and gave it to my doctor. He loved it as well. Thank you toolkit H.T. Swansea “The Pain Toolkit has been making a true positive difference for patients with chronic pain for several years – just ask the patients that have used it! I totally support and welcome this extension of the programme with the Your Pain Toolkit handbook so we can expand the breadth & width of this truly inspirational work.” Dr Martin Johnson GP (Yorkshire) & RCGP UK Clinical Champion for Chronic Pain Hon Senior Lecturer in Community Pain (Cardiff)

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“The Pain Centre Erlangen, Germany has been using the Pain Toolkit for the past 2 years with great success. In the last two months we are now using the new “Your Pain Toolkit” in our pain department. All our patients, doctors and psychologists are very happy with the Your Pain Toolkit. The useful background information and the inclusion of working-sheets are so helpful for our work with the patients. We are recommending Your Pain Toolkit as a teaching aid to all Bavarian Pain Centres Germany.” 7

Dr. Reinhard Sittl

Head of the Interdisciplinäre Pain Centre University Erlangen, Germany.

Using the Internet Pete says... Type in Pain to a search engine and around 717,000,000 results will come up. Most will try and sell you something etc. Always discuss with your doctor or health care professional if you are going to try something. Remember, successful pain selfmanagement is team work. I found the Healthtalkonline site very useful. It gave me the opportunity to hear, see and read about how others live with their pain. I now know I’m not on my own. N.K. Somerset. There seem to be a lot of websites that wanted to tell me that if I took this or did that, my pain would disappear. I now tend to only visit sites that use the org.uk, .nhs.uk, .gov.uk or ac.uk addresses. T.F. Essex Information on You Tube www.youtube.com (Type in titles on the You Tube site)      

Understanding Pain - What to do about it in 5 minutes. Excellent short film from Australia. Audio Explain Pain Clip Pain Management 3 NHS Choices: 619 videos about health conditions Lorimer Moseley on ABC Classic (audio interview—this is excellent) Audio Explain Pain Clip

See more like these at www.paintoolkit.org/educational

7

http://www.uk-erlangen.de/e467/e23162/e25048/index_ger.html

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The Pain Toolkit workshops Pete says…Many people were asking for more practicable help and support regarding managing their pain. We asked readers of the Pain Toolkit what sort of support or extra information they needed. Overwhelmingly they said they wanted to attend a simple Pain Toolkit workshop. So we did and have developed a half-day interactive workshop where people can learn more skills about how to become better pain selfmanagers.

Remember the workshop is only half-day, and to just to provide you with some simple ideas to get you started. The real work carry’s on after the workshop finishes.

What will you learn on the Pain Toolkit Workshop? Below are the activities the workshop will cover  Introductions and what challenges you have experienced living with pain and long-term health conditions  Overcoming day to day problems living with pain and long- term health conditions  What are the benefits of pain self-management?  Understanding the tools in the Pain toolkit  How to use the tools in the Pain Toolkit  How to work effectively with your doctor and health care professionals  Managing your medicines effectively  How to set realistic goals, action plan and problem solving Setbacks.

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How does the Pain Toolkit Workshop actually work?

The Pain Toolkit workshops are 3½ hours long (including a tea/coffee break) and are for people who live with persistent pain, feel a little stuck and perhaps need some simple ideas to get them started to self-manage their pain

They have been designed to work along-side other support you may be receiving, so it is best to tell your GP or other health care professionals that you are attending a workshop. Remember Tool 11 and working with your health care professional as a team?

They are interactive so don't think when you attend a workshop you will be talked at for a 3½ hours or the trainers will provide all the answers. You have to take part as well.

The Pain Toolkit workshops main aim is for you, and others who attend, to feel confident in using the Pain Toolkit tools which have proved to be so useful to people with pain here in the UK, Europe and overseas.

The workshops are led by friendly and very experienced Pain Toolkit Trainers who live with pain conditions, but are good self-managers of their pain. Interested in attending a Pain Toolkit workshop? Yes? Well ask your GP or health care professional to contact me at [email protected] and I will provide them with more information.

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Useful website links for information and support Alcoholics Anonymous www.alcoholics-anonymous.org.uk American Chronic Pain Association www.theacpa.org Aphasia www.ukconnect.org Asthma UK www.asthma.org.uk Arthritis Care www.arthritiscare.org.uk Arthritis Research Campaign www.arc.org.uk BackCare www.backcare.org.uk Breathworks Mindfulness based pain management www.breathworks-mindfulness.co.uk British Pain Society www.britishpainsociety.org British Heart Foundation www.bhf.org.uk British Lung Foundation—Breatheasy group www.lunguk.org Macmillan Cancer Support www.macmillan.org.uk Diabetes UK www.diabetes.org.uk Depression Alliance www.depressionalliance.org Fibromyalgia Association UK www.fibromyalgia-associationuk.org Healthtalkonline www.healthtalkonline.org Know your own health www.kyoh.org ME Association www.meassociation.org.uk Migraine Trust www.migrainetrust.org MIND confidential help and advice on www.mind.org.uk Multiple Sclerosis Society www.mssociety.org.uk Narcotics Anonymous www.ukna.org NHS Direct www.nhsdirect.nhs.uk (Tel 0845 4647) NHS Choices www.nhs.uk Overcoming mental health problems—one step at a time www.overcoming.co.uk Pain Association of Scotland www.painassociation.com Pain Concern www.painconcern.org.uk Pain Support www.painsupport.co.uk Pain Relief Foundation www.painrelieffoundation.org.uk Pelvic Pain Support Network www.pelvicpain.org.uk Parkinson’s www.parkinsons.org.uk Rheumatoid Arthritis Society www.nras.org.uk Samaritans www.samaritans.org.uk Sainsbury Centre for Mental Health www.scmh.org.uk Stroke Association www.stroke.org.uk Talking Health www.talkinghealth.org Your Health Your Way www.nhs.uk/yourhealth 45

Your Pain Toolkit notes space …………………………………………………………………………………… …………………………………………………………………………………… …………………………………………………………………………………….. …………………………………………………………………………………… …………………………………………………………………………………… …………………………………………………………………………………….. …………………………………………………………………………………… …………………………………………………………………………………… …………………………………………………………………………………….. …………………………………………………………………………………… …………………………………………………………………………………… …………………………………………………………………………………….. …………………………………………………………………………………… …………………………………………………………………………………… …………………………………………………………………………………….. …………………………………………………………………………………… …………………………………………………………………………………… …………………………………………………………………………………….. …………………………………………………………………………………… …………………………………………………………………………………… …………………………………………………………………………………….. …………………………………………………………………………………… …………………………………………………………………………………… …………………………………………………………………………………….. …………………………………………………………………………………… …………………………………………………………………………………… …………………………………………………………………………………….. Cont.

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Your Pain Toolkit notes space …………………………………………………………………………………… …………………………………………………………………………………… …………………………………………………………………………………….. …………………………………………………………………………………… …………………………………………………………………………………… …………………………………………………………………………………….. …………………………………………………………………………………… …………………………………………………………………………………… …………………………………………………………………………………….. …………………………………………………………………………………… …………………………………………………………………………………… …………………………………………………………………………………….. …………………………………………………………………………………… …………………………………………………………………………………… …………………………………………………………………………………….. …………………………………………………………………………………… …………………………………………………………………………………… …………………………………………………………………………………….. …………………………………………………………………………………… …………………………………………………………………………………… …………………………………………………………………………………….. …………………………………………………………………………………… …………………………………………………………………………………… …………………………………………………………………………………….. …………………………………………………………………………………… …………………………………………………………………………………… …………………………………………………………………………………….. ……………………………………………………………………………………. ……………………………………………………………………………………..

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Your Pain Toolkit is dedicated to… the many people who live in the world with day-to-day persistent pain and also to the many volunteers and professionals who do their very best to support them.

Special thanks to those below how have supported me and the Pain Toolkit over the years: 

Dr Frances Cole



Angela Hawley



Dr Amanda Williams



Dr Neil Berry



Jean Thompson MBE



Dr Reinhard Sittl



Franz Gerstheimer



Gaby Erkens



Kim Brunning



Christiane Kohnen



Di Wright



Penny Cowan



Dr Beverly Collett



Barbara Wingrove



Dr Patrick Hill



Grunenthal



Dr Cathy Price



Dr Martin Johnson

Lots of people I have met, books I read, have inspired me to live my life today with less pain and with a very positive outlook on life. What’s the secret? There isn’t one. I hope you find some answers in the Your Pain Toolkit, or at the least it gets you started.

Never stop improving your pain self-management skills

Pete Moore October 2012

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Pete’s journey My story is very typical of that of someone with pain. I was, like many people, looking for that magic bullet to take away the pain. Managing my pain was like playing a game of snakes and ladders – a game of luck. Most days melted into the next and I was a very poor pain selfmanager. I did not exercise or generally look after my body, I ate all the wrong foods and when something went wrong with it, I expected the doctor to fix me. My Turning Point! In 1993 I started a back pain support group in Hornchurch, Essex and one our early speakers was a Pain Clinical Psychologist called Amanda Williams who then worked at the INPUT Pain Management Programme, London. She spoke to the group about the importance of pacing, learning how to stretch/exercise without harming yourself and loads of other easy-to-learn skills. For me and others, this was the positive message we needed to hear. In July 1996 I attended the INPUT 8Pain Management Programme (PMP) London. It was described to me as a programme that could help me to increase my confidence and mobility and provide me with the pain toolkit of skills to self-manage my pain. I thought this was finally something that could help me move from ‘patient to person’. I have been back in full time work since 2000 and to date I have never had a day off sick.

Back to work Since 2000 I have worked for BackCare for a year and a half and from April 2002 until May 2011, for the Expert Patients Programme. Whilst working there I wrote a six week patient / health care professional-led pain self-management programme called the Persistent Pain Programme (PPP) and an illustrated handbook that participants receive when they attend the PPP. I also held another position called a Business Development Manager.

Now I work exclusively on the development of the Pain Toolkit training seminars and workshops for people with pain and health care professionals. 8

www.britishpainsociety.org/patient_pmp.htm

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Promoting pain management education: Each year I am invited to present at the 9European Federation of IASP® chapters (EFIC®) 10Pain School in Austria and speak about managing pain from the patient’s perspective.

11

The Societal Impact of Pain - A Road Map for Action

I have been involved with the Societal Impact of Pain since its concept in 2010. SIP is a European initiative www.sip-platform.eu which provides opportunities for discussion for health care professionals, pain advocacy groups, politicians, insurances, representatives of health authorities, regulators and budget holders. Pain Toolkit I co-authored the original 12Pain Toolkit booklet with Dr. Frances Cole the Pain Toolkit which has been supported by the Department of Health now used extensively in the UK, Europe, Australia, New Zealand and Canada.

Since 2009 240,000 copies of the Pain Toolkit have been printed and are in circulation throughout the UK. They have been translated into German, French, Italian, Dutch and Spanish by 13Grunenthal Germany. Cont/.

9

www.efic.org/ www.paincourse.com/front_content.php 11 www.sip-platform.eu 12 www.paintoolkit.org/assets/downloads/Pain-Toolkit-Booklet-Nov-2011.pdf 13 www.grunenthal.com 10

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Pain Toolkit website: We recognised in early 2010 a Pain Toolkit website was needed and in November 2010 we launched one, www.paintoolkit.org. Since November 2010 the site received 55,000 visitors in the first year and now gets around 10,000 plus a month. We have also developed a Facebook page and a link to Twitter to ensure that we can be interactive with health care professionals and patients who use the Pain Toolkit concept as a valuable resource.

@paintoolkit2

Pain rehabilitation: 14Emopain project I work part time on the Emopain project www.emo-pain.ac.uk and part of the Patient Advisory Team for the University College London, Imperial College and Leicester University who are conducting research on the role of movements in persistent pain. The study is taking advantage from recent technological developments, in the field of computer gaming, and aims at recording people’s movements using special sensors. The Essex Way During 2006 (January 19th – 21st Oct) I walked across the Essex Way (from Epping to Harwich - 130km/81 miles) to raise the profile of pain and pain management in Essex and UK. Of course I walked it in a pacing way – a little each month.

The walk raised £1,299.00

14

www.emo-pain.ac.uk

All illustrations used in the Pain Toolkit Plus are with the kind permission of Grünenthal GmbH Aachen Germany - www.grunenthal.com

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Your Pain Toolkit

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