My name is Lesley and I’ve been living with persistent pain for most of my life. I’ve been involved with the Dorset Pain Management Service for two years. I am now considered a volunteer expert by experience and there are many like me who have chosen to share what we have learnt, and how it has changed our lives, with others who are new to the service. When I came to the Pain Management Service I came with very low expectations, totally unsure what it was all about. With the Why Me question overlying everything. Today I’ll guide you through the service, what they offer, but also what will be expected of you so that you can make the most of your time with us. Let me introduce you to some of our other volunteers who will share their experiences with you today. This is Ben, David, Rose, Angela and Mark. First, let’s hear Ben’s story of what life was like before he started his pain management journey.

When I came to the pain team I was basically in despair. I have an arthritic condition and had been suffering from neck pain for some five years and a hip replacement which was plagued with complications. This was set off by an infection. In all I had some 16 surgeries, not all with the desired outcome. The pain slowed me down considerably and I was unable to work. I relied heavily on potent medication and felt I’d exhausted all my treatment options. I felt there was little more medical intervention open to me. In going to the Pain Service I was looking for ways to cope with and reduce the intensity of my pain. I was hoping to become more mobile and active.

We have a range of professionals working within the service, all of whom are pain clinicians. They will see you as a whole person and will want to understand how your health has impacted on all areas of your life. Each specialist has a particular set of skills which may offer you the help you most need. Our physios can guide you towards a physically healthier lifestyle; our occupational therapists can enable you to lead a full, meaningful life – which may feel out of reach when you’ve been living with pain for so long; our psychology team are there to help you identify and manage the emotional challenges relating to living with pain; our nurses can help by describing the biology of pain – you’ll hear how that can help later on. Also they work with people to improve their understanding of when and how to use medication safely. Our therapy assistants can support you in putting pain management into practice in a number of different practical ways. Our medical staff, consultants, and their team can help when specific medical interventions are to be considered. Our support team – both admin and our volunteer Experts by experience – provide direct contact and support to people in their journey through the service. The key person who completes the team is always you. By including yourself as an important member of the team working towards your own healthcare, you have a key role in the decisions made about how to progress.

So, what does the journey with our team look like? Your path through the service will be individual to you and may include face-to-face or phone consultations with a single clinician; attending one of our many specialist groups. Some examples are: sleep group; exercise class; mindfulness group; fibromyalgia management group; being supported while you go through the pain management material at home on your computer via our self-directed course; or meeting with others in a virtual group. Being supported at any stage of your journey by one of our Experts by Experience and once your work is done with the team, you can keep in touch through our Facebook pages, website and services run by our Experts By Experience network.

Can we help you with your pain? We can help you manage pain from anywhere in the body and these are just a few that you may be familiar with: Low back pain, Fibromyalgia, Neck pain, Arthritis, Post-stroke pain, Phantom limb pain, Groin pain, Ehlers-Danlos Syndromes, Abdominal pain, Complex Regional Pain Syndrome, Foot pain, Facial pain, Headaches, Post- joint-replacement, Spinal cord injury, Nerve pain, Pelvic pain, Rheumatoid arthritis, Hip pain.

We can help manage a wide variety of pain conditions.

Whilst promoting the life-changing possibilities of pain management, there may be times when it is not the right time for you. Pain management takes your commitment, time and energy and this may not be possible if you are still undertaking diagnostic tests or medical treatments that you hope may ‘fix’ your pain, and are not able to embrace pain management. You may be short of time right now – say, you’re moving house or starting a new job. That’s okay. The team will still be here when you are ready. If you are ready, willing, and able, we are here to support you on your journey.

Let’s begin by introducing you to our Four Pillars and how they form the foundation of your successful pain management:

Pillar A – Learning About Pain. Is it time to rethink what you already know about your pain?

Pillar B – A Healthy Lifestyle. Would you consider your lifestyle as healthy?

Pillar C – Doing What Matters. Do you feel that life is on hold until the pain disappears?

Pillar D – Emotional Wellbeing. Do you take enough care of your emotional health and wellbeing?

These building blocks help us to help you build a better future where you can reclaim your life. Next, we will hear from our Experts By Experience on how they applied each of these pillars in real life.

Hi. I’m David. I was born in 1954 with a deformed spine that I had no idea about until I was 37 years of age. When I started to suffer with my pain, my doctors recommended treatments, such as a spinal corset and spinal injections. None of these treatments reduced by pain. In November 2006, my pain progressed while out horse-riding. I just pushed on at the time and didn’t ask for help. Around seven months later I finally sought help. I discovered I had osteoporosis and had fractured my spine. To say it was painful was an understatement. To help with my pain, I was given morphine tablets, supplemented with oramorph when the pain became too unmanageable. But they made me drowsy and affected my mental health as well. Sometimes I would feel like a zombie. Over the following years, the recommendation from the specialist was to increase the level of both drugs to try to reduce my pain levels. The levels of drugs that I had been prescribed are now considered unacceptable by public health authorities. In 2018, I was invited to attend a pain management programme, which changed my life. During the eight-week course, I learnt that taking opioids long-term can be counter-productive. In fact, some may actually increase pain in the long term. What worked for me was learning about pain, relaxation, moving my body, and a positive mindset. Working with the team, we created a plan to gradually and safely wind down some of my medications. I don’t take morphine tablets any more and I’ve reduced my oramorph intake to recommended safe levels. Although I still experience pain, with continued support from the pain management team, I now feel in control of my life and, most importantly, my future.

So, how are my real physical ailments dealt with in pain management? Well, one of the first things that happened when I came to the team was that I was educated about the biology of pain. I thought I knew all about pain, after all I’ve lived with it long enough; and, to be honest, I didn’t want to learn any more. I just wanted it gone. But with nothing else on offer, I was willing to listen. To me, understanding pain was straightforward. Pain equalled damage; and so more pain equalled more damage. A bumped toe would hurt a bit; a broken toe would hurt a lot more. A strained back would hurt a bit; a deformed back would hurt a lot more. It seemed to make sense, but that was before I looked into things in more detail. The team showed me a very helpful online resource called Retrain Pain (retrainpain.org) and I started to see some of the complex biology that is required to create an experience of pain: the nerves, the hormones, the immune system, the brain – each part having a different influence on my body. I started to become more curious about the process and, as I did, something dawned on me. My deformity was something that I’d had since birth; however the pain only started in my thirties, meaning my simple education of pain equals damage was not the whole answer to my pain. I bet you can guess what I thought next. If the amount of pain I had wasn’t the result of deformity or damage, it must because of the effects of age. I’d had x-rays, which showed arthritis; I heard words like “degeneration”, spondylosis, wear-and-tear – all used to describe my scans. I fully expected this as I had been very physical and feared that time had taken its toll. The level of pain, if not a measure of damage in my spine, was obviously a measure of my ageing spine and how worn out I was. But here was another challenge to my understanding. Sometimes my pain was better than other times. At my age, well, that only moves in one direction. If the amount of pain I had was because of the amount of ageing and wear, it would not be possible for some days it felt better. I was even shown some amazing evidence from research, carried out on people with no pain. I’m in my 60’s. For those in my age group without any spine pain, 88% had degeneration, 69% had worn out and bulging disks, and 38% had prolapsed or slipped disks. So these physical changes were also unlikely to be the whole sole cause of my pain. I realised I had to develop a new understanding of what pain is and how it worked in order that I could manage it well. It was an important part of my pain management journey and perhaps too much information to share with you all here today. But I would encourage you all to look at the resources available on the pain team’s website to help you understand pain in a way that will help you too.

Pillar B – a healthy lifestyle. We are now going to hear from Rose. Exercise has always been a challenge for me. But starting with tiny steps and being able to choose, helped me begin and quickly gain confidence. Now I exercise for ¾ hour a day with enthusiasm.

Pillar C – doing what matters. We are now going to hear from Angela. After a referral from my GP, I drove to the pain clinic thinking there was nothing they could do. Pain is pain. How wrong was I? I met Bob who opened my mind about dealing with pain. I started to set goals, aiming for things I pushed to one side before. Something simple like going for a walk with a friend. Instead of making excuses to stay inside all day, I’m now fostering a dog so I go out every day. Changing my mindset has given me my life back. I will always have pain but I deal with it in a totally different way now. I give myself no longer than an hour in the morning to prepare for the day. I’ve found the sooner I start moving about, the pain can be there but my mind starts focusing on something else.

Pillar D – emotional wellbeing. We’re now going to hear from Mark. Hello. I came to the pain service because I was beginning to realise that my pain was driving my anxiety levels and gradually taking control of my life. I have learnt that being kind to myself is not a weakness and that resting instead of doing, practising mindfulness and rhythm breathing are an effective way of reducing my anxiety levels. This in turn has helped me not to be so angry with myself about not being able to be as physically active as I would like and also let me take back control of my pain.

So, are you saying the pain’s all in my head? Absolutely not! All pain is real, personal and complicated. It can also be an exhausting daily battle and that’s why we take the full life experience approach. Whether your pain is in specific areas or all over your body, this helps us to plot a course to understand and manage your pain in a way that gives you back control.

Will this cure my pain? This is probably going to be the question on your mind right now. Let’s return to Ben’s story to answer this question. I walk much better than I did – although still with a stick. I’m altogether more active now and have a technique that allows me to spend more time at my desk. As a result, I have become more relaxed and sociable. My weight, although not ideal, is at least under control. I have become an active beekeeper – something I wouldn’t have been able to do before and have numerous roles within the local, county, and regional beekeepers’ associations. I have even returned to a life of learning and at 66 I am still taking and, believe it or not, passing exams. I am working towards becoming a master beekeeper. In addition to this and as a significant part of my own treatment, I have become a volunteer with the pain service – something that I heartily recommend.

What would you say to someone thinking of working with us?

Hi. This is Lesley – the real me. If you’re considering taking part in the pain management programme and have any doubts, then I can truly say ‘Don’t hesitate, do it’. It’s the start of a journey for you to take back control of your life. I can honestly say that you won’t regret spending any second of time working with this professional, caring, and truly inspirational team. And remember, you matter.

Thank you for taking the time to watch this video. We hope you found it useful.