Bec’s Story – overcoming chronic pain

In support of the @upandsing chronic pain awareness campaign by UP | Understand Pain, Bec has very kindly written her story of achievement. Bec illustrates how we can change our pain and overcome chronic pain by understanding her pain, and taking action based on this knowledge. Enjoy.

“I suffer from chronic pain. This is when pain persists beyond the normal expected healing time. In writing this story, I wanted to describe to you the affect that living in chronic pain had on me as a whole person, since understanding this is vital in order to improve our understanding of both ongoing pain and its treatment.

‘YOU CAN IF YOU THINK YOU CAN.’ Norman Vincent Peale

‘Life can only be understood backwards; but it must be lived forwards.’ Soren Kierkegaard

I didn’t crawl before I started to walk. I have never had a good sense of direction or spatial awareness – I get disorientated coming out of a shop, not knowing which direction I need to turn. I have hypermobility in my joints. I have perfectionist tendencies. I fractured a vertebra when I was eighteen. I have always placed a great deal of importance on exercise and struggle to be as happy without it. Doctors told me I would live in long-term persistent pain.

These are all facts about me. Facts that at first may seem to have no connection. But since nothing works in isolation, everything about us – our experiences, our personalities, the words we hear and stories are told, create a whole. And in order to overcome chronic pain we must learn to deeply understand it, not just from an external objective perspective, but also from a uniquely personal and internal one. Chronic pain comes from and affects the whole person and it therefore must be the whole person who is treated. Once this happens, it is possible not only to overcome chronic pain, but to redefine old stories, undo unhelpful thoughts, alter perspective of past experiences, develop healthier habits and ways of living, know that we can change. Not just our pain, but ourselves…in any way we wish to.

‘Movement anchors thought.’ Cara Hannaford.

I don’t believe that our minds and bodies are separate entities and I have always found a joyous energy in movement that I could not create in any other way. I am told that as a baby I was desperate to get moving and began walking at nine months. On my first trip to the swimming pool as a toddler, I jumped straight into the water the moment I saw it. Growing up, I spent hours outside, climbing trees, building dens, riding my bike. And I was always trying out new sports: dancing, gymnastics, trampolining, roller-skating. From the age of 10 to 18 I played competitive netball. But it was horse riding I really loved once my family moved to Norfolk when I was five. As I grew older, I recognised the deep sense of connection to the world I found when I was engaged in physical activities. It wasn’t the technical aspects of riding I enjoyed the most, but the sheer physicality of it – both whilst in the saddle and working on the yard.

In 2000, aged-18 (during my gap year before university), I had a seemingly uneventful fall during a riding lesson. But an awkward landing caused a compression or vertebral fracture to my spine. Looking back now, it was my first experience of the ambiguous nature of pain. In the first moments after the fall it was incredibly painful, but this quickly eased and I thought I had just winded myself. I got up, walked the horse back to the stables, untacked her and lay down for a rest. But in the following thirty minutes I experienced excruciating pain in my back. I was taken to A&E and x-rays and scans revealed the fracture – it was a clean break without any splintering. This was a fortunate discovery, not only because it meant an operation wasn’t necessary, but also because a splinter could have severed my spinal cord as I moved around after the fall. I remember the consultant berating me for this, which created an intense feeling of fear of how different my life could so easily have been, of the fragility of a life well known – a fear that never completely left me from that moment onwards.

I spent a week in hospital lying as still as possible until a back brace could be fitted. I can recollect the high level of pain only through memories of pleading for more morphine before it was allowed; and from attempts to writhe around to try to redistribute the pain to other parts of my body (although I was held still by the nurses). I spent the following four months in my back brace permanently, a rather unattractive bulky white contraction aimed at preventing kyphosis (curvature of the spine) while the fracture healed. For a further two months I used it only when I was out of the house for long periods. Occasionally, I used a wheelchair when a lot of walking would have been involved. But the pain subsided after just weeks of the accident.

Within six months I was back in the gym, running and horse riding again. I spent the two months I had left before starting university travelling around Europe: I ran the streets of waking cities; mountain biked in the Alps; paraglided off the coasts of Greek Islands; and went whitewater rafting in Austria. These are the parts of the trip I remember vividly due to feeling enormous gratitude that I was still able to do them. It was the type of gratitude created by a near miss, a lucky escape, the insight that life can change in a second. My accident made me realise the ability to move our bodies is a gift. It is a gift that not everyone is given, or gets to keep. Running became a prayer. The heightened awareness of the ground beneath me in those first few steps provides immediate comfort. And then as I settle into the rhythm, the motion becomes an energy, which is like life waking up inside me. Running gives me a connection to something bigger, something both within and beyond myself. I am mindful, totally present in the moment, immersed in the feeling of moving and, if outside, in my surroundings.

‘People will forget what you said. People will forget what you did. But people will never forget how you made them feel.’ Maya Angelou.

For the majority of the following twelve months my back gave me few problems, but towards the end of my first year at university I began getting bouts of terrible pain in it. A new MRI scan and x-ray revealed what I was told was Degenerative Disc Disease, and that the fluid from inside one of my discs had leaked, pressing on nerves – the cause of the pain. I received some physiotherapy and the pain subsided over the next couple of months.

I have since learnt that Degenerative Disc Disease is a very general term used to describe changes in the spine – a normal part of the ageing process. Aged 19, one of my discs had degenerated faster than was usual for someone my age, (but not an uncommon result of a spinal trauma), which it was why it was used to describe the cause of my pain at the time. However, what the label actually meant wasn’t explained to me, and the power of the word ‘degenerative’ (suggesting progressive deterioration) and ‘disease’ (implying impairment or abnormal function), remained long after the pain had disappeared. I became more cautious of activities that may threaten my back’s ‘safety’, especially falling, and concerned that in the future I may have further problems relating to a condition I now believed I irreversibly had. A more accurate description of the situation would have been to simply state that one of my discs had degenerated.

‘There is nothing either good or bad, but thinking makes it so.’ William Shakespeare, Hamlet.

Throughout my twenties I experienced pain in my back on a fairly regular basis, but nothing too debilitating or lasting much longer than a month or so. I remained very active: as I was now living in London, mostly running and going to the gym. However, from the age of 26 I also began getting a recurrent pain in the outer part of my left knee – not an uncommon for problem runners. Various physiotherapists informed me it was Iliotibial Band Syndrome (a tightness or inflammation of the ligament that runs down the outside of the thigh from the hip to the shin), and gave me exercises to treat it. But they never provided a long-term solution and I began to find it increasingly irritating as the pain reoccurred more often; for five years it prevented me from running more than a few miles, and sometimes appeared when I was just walking.

In March 2013, the knee pain began again and this time I set out to find an alternative treatment since traditional physiotherapy hadn’t worked. Whilst I did so, I stopped running altogether. The knee pain simmered down but in May 2013 I noticed soreness in the front of my hip – it felt like I’d pulled a muscle. Yet despite reducing exercise even further over the summer, it didn’t improve – in fact the soreness heightened and spread around the back of my hip (a burning-like pain), and for a few weeks acute tenderness in my calves and shins developed.

In September 2013 I began seeing Christian Poole, a Sport and Exercise Rehabilitation Coach (specialising in running) who uses an Applied Functional Science approach, which targets the cause rather than symptom of an injury, unlike previous physiotherapy I’d received. Since my focus was very much on the returning knee pain, which I saw in isolation, in my naivety, I didn’t mention the other more recent pains I had. Short-term injuries were common because I exercised a lot, so I still didn’t think much of the hip pain. I presumed I simply hadn’t rested it enough yet.

We began a running re-education and rehabilitation programme targeting the potential cause of my knee pain, which would change my running form and improve the overall movement of my body. However, within weeks we had to discontinue because the soreness around the back and front of my hip worsened significantly, spreading into my right gluteus muscle and lower back. I also got sharp shooting pains down my right leg and in the outer left knee (a different type of pain to what I’d experienced in this area before). My emotional response to this was stress and further frustration: I’d finally found what I believed would be a way to alleviate my returning knee pain, only to be faced with a new set of problems.

I will never know for certain, but it seems probable that the following factors: whatever injury originally caused my hip pain; the importance I placed on running (or not running); my emotional response to pain at this point; and the prolonged and incorrect belief there was a structural abnormality in my spine (‘Degenerative Disc Disease’) contributed to what happened next – a persistent, ongoing pain response. Scans in 2014 showed that there is now no degeneration to my discs that wouldn’t be expected for my age, yet for many years I had a misguided perception that this wasn’t the case. What I had always attributed as the cause of my reoccurring back pains didn’t exist. Therefore, it is possible that for a long time my central nervous system was becoming gradually sensitized, firing pain as protection, when no protection was actually necessary…Perhaps the injury to my hip was just the final trigger.

‘When you are courting a nice girl an hour seems like a second. When you sit on a red-hot cinder a second seems like an hour. That is relativity.’ Albert Einstein.

By December treatments were reduced to symptomatic relief as the pain spread further up my back and neck, more intense, ever present and distracting. Moving hurt. Not moving hurt. Walking and simple everyday activities (loading the washing machine, cooking, getting dressed) became challenges. My general level of energy dropped significantly: being in constant pain over a prolonged period is tiring.

Initial investigations didn’t reveal any obvious cause of my pain and I began to feel as though I was going insane: I would go to sleep with pain in one area only to wake with it somewhere else instead or in addition. The moving of the pain felt like a cruel game – like one of those tricks where someone hides the ball under a cup, moves it around, and no matter how carefully you watch, it’s never under the cup you think it’s going to be. I saw my pain as a separate entity, a small gremlin of a creature, which merrily jumped around my body parts, taunting and laughing at me as I tried to pin it down, unable to catch it and hold it still. My knowledge of pain at this point was that for pain to be present, there had to be a physical injury or illness. This idea – this myth – is embedded in most of us. If I’d had a better understanding of pain before this experience, then I would have felt less fearful. But I didn’t understand, and as a result I felt anxious and even more stressed.

Fortunately serendipity had been kind to me. It was lucky I’d decided to see Christian about my knee, because he did understand what the behaviour of my pain now suggested. He began educating me about the neurophysiology of chronic pain using the work of Professors Lorimer Moseley and David Butler. However, in order to rule out a physical cause for certain, I went for x-rays and MRI scans on my back and hip. Due to NHS waiting-times, it was further seven months from the referral in December before these were carried out and the NHS would offer me no treatment until we had the results.

Consequently, because the behaviour of my pain strongly indicated it, in the meantime Christian and I treated my pain as chronic – a result of an unstable central nervous system. Over the following months we used a variety of strategies to begin to overcome the pain: mobilisation and massage, trigger-point therapy, specific exercises, and graded exposure and pacing of physical activity. I educated myself as much as a could about chronic pain and neuroscience-based treatments. As a result, I understood that gradually increased activity was part of the treatment process and that movement, even if it hurt, wasn’t going to physically harm me (aerobic exercise at the correct level calms the central nervous system, and controlled movement prevents secondary pain from muscular deconditioning and joint stiffness). But moving parts of my body through pain was counterintuitive and the complexity of chronic pain scared me. My prior experience of pain, which stayed in one area, was familiar and felt concrete. There is damaged tissue or bone, which is treated in some way: the pain goes away. Now pain itself was the problem and this felt abstract and evasive. Despite this, in January I made some significant progress and even began introducing some very short run/walk exercises.

However, in that seven-month wait, in my mind there still remained a degree of uncertainty – and sometimes hope – as to the cause of my pain, that it still might be the result of an injury or structural issue. This option felt like it would be less complex to treat and more understood (by myself, doctors and those around me). The waiting for the MRI scans undoubtedly impacted negatively on my pain, mindset and therefore effectiveness of the treatment. It was a liminal space to live in for over half a year and to have been without the care of a private clinician at this stage (and as it turns out at any stage) would have made remaining at work and coping with my pain impossible, especially as my interactions with medical practitioners working for the NHS were largely a source of frustration and anxiety rather than supportive and constructive.

‘There is something about words. In expert hands, manipulated deftly, they take you prisoner.’ Diane Setterfield.

I saw numerous GPs over these seven months as they coordinated my care (providing medical notes when I needed to work reduced hours; sending me for and receiving the results of scans; and finally referring me to the pain management team). I also later saw a number of physiotherapists and a pain psychologist. With the exception of one physiotherapist I saw just once, but who I will forever remember for her positivity about my situation in a culture of different beliefs, all delivered a similar message: there is no cure for chronic pain. I would have to learn to live with it. They only ever talked of “pain management” as a long-term solution, usually with the help of painkillers. In the earlier months what my GPs said to me planted enormous doubt around my chances of getting better. These were medically trained doctors and I was no expert. Why would they say this to me if it wasn’t true? I couldn’t shake what they’d said: and what they said terrified me. I was very social, outgoing, active. These things were already becoming difficult to keep up in a constant pain-state.

I was desperate for reassurance from other sources that there was a way to overcome my pain. However, websites of the NHS and pain management clinics, along with those of pain charities, all delivered a similar message: it was possible to learn to manage chronic pain to gain a greater quality of life, but not to cure it. I was – and remain even more so now – confused as to why they all repeated this message when scientific, evidence-based research around the brain, pain and neuroplasticity has proved this no longer needs to be the case. Newer treatments have proved effective in overcoming chronic pain conditions. I am now evidence of this myself.

But back then I searched for blogs written by survivors of chronic pain who had made recoveries…I found none. Instead I found blogs and posts written by desperate people who had been living in pain for many years, possibly typed out sitting in the darkness at their computers, just like I was. I was left with two opposing messages. There is a Chinese proverb that says: ‘When faced with two points of view – better to choose to believe the more positive one.’ I made a conscious decision at this point to do just this and returned to what I knew to be the latest biopsychosocialist treatment approaches, adding the work of Dr. Adriaan Louw to my list of pain educators.

However, this was constantly tested as the GP who took on my case was frustrated by my determined attitude: he repeatedly told me I needed to accept that there was no cure for my pain and that private practitioners who said otherwise did so because they had a vested interest (i.e. my returning ‘business’). He was also annoyed I wouldn’t accept painkillers. I was adamant I didn’t want to begin a process of relying on them or want to mask the pain: I needed to feel it so I could work to overcome it, not a short-term fix. His response was to tell me I was in a state of denial, and that people who refused painkillers always came back in the end for them, often in a worst state. I felt criticised rather than cared for.

I believe that all the NHS practitioners I saw were well intentioned but either that their pain education is out of date and inadequate, or that the system doesn’t allow for necessary treatments to take place due to short-term cost demands. I have since spoken to a number of GPs, who informed me they know little of the latest neuroscience-based research around pain, yet they are the first contact for a chronic pain patient and what they say matters. I often wonder what would have happened if I hadn’t by chance been seeing Christian during this time: the only voices I’d have heard would have been of those who told me there was no way to fully recover…

The additional anxiety caused by negative medical prognosis and information on the Internet impacted on my pain – now living alongside it was fear. Fear that my pain would never go away. I tried to ignore it, but in the ever-presentness of the pain, the fear gnawed away at me in the background. And despite the progress made in January, by March the pain had spread to more parts of my body and significantly heightened. Some places, such as below my ribs became incredibly sore, I had stabbing pains continuously down the entire right side of my body, turning my right hip caused an intense shooting pain… And although my resolve to overcome my pain didn’t waver, Christian, and some practitioners whose research I’d read, were lone voices of hope in my world. I didn’t doubt the science, or the treatment approach, but I did often doubt myself. I knew it was necessary to manage my stress and fears to overcome my pain, but was struggling to do so. No one else I knew could offer me reassurance because most found it difficult to understand that there was no physical cause of my pain and were genuinely perplexed by what was happening to me.

‘My suffering left me sad and gloomy.’ Yann Martel, Life of Pi.

My pain, the gremlin, was winning. The constant state of discomfort had an ever-increasing affect on my life. Events that required I stay for a given length of time, (a birthday party, a wedding, a dinner out, a meeting at work), or imposed activities and environments (crowds, travel, sitting or standing for long periods) evoked a claustrophobic feeling.

My general health started to deteriorate. I couldn’t sleep, was fatigued and easily caught viruses. I felt guilty if I visited someone and then felt unwell. I often had to cancel plans to meet friends. My parents began travelling from Norfolk to clean my flat. Activities I could take part in were restricted. Walking and driving became problematic because my neck was too rigid and painful to turn – I had to rotate my whole body to cross the road or check at junctions. I have a physically and cognitively energetic job as a teacher and senior leader in a primary school, and although I remained at work for the majority of the time, my capacity and performance were affected.

And I deeply missed running and exercising. Not just because these had previously formed large parts of my identity and social life but because of what moving my body, and physically pushing myself means to me. Because of the clarity of thought and inner-calmness I find in them. Without them, I couldn’t see a way out: I saw myself standing, dressed in my running kit, alone in the middle of an empty road, enclosed by a thick fog. Being unable to run, felt like an ironic joke. What once had been a source of comfort, a means of escape, was an activity I associated with pain. And by March 2014 I was overwhelmed by how physically fragile I perceived myself to be. There was a total disconnect between my mind and my body, which scared and frustrated me in equal measure. By now just thinking about running made my pain worse. I was unable to truly imagine ever running again.

Pain infiltrated every movement, every thought, every plan, every conversation, every interaction. It was there in my body, in my facial expression, in my words, in the tone of my voice. It was there in my laughter. It was there in the reflection of light as I poured water into a glass. Others couldn’t see it, but I could feel it. It painted the world in muted colours. It was like watching each moment through a dirtied window, everything slightly marked and smudged, and always from a three-step distance from everyone else. My experience of the world now felt different because pain added an extra unpleasant sensation to every moment. My perceptions of space and pace altered: sometimes action around me became too fast, sometimes it became disorientatingly slow; busy, thriving, energetic places became threatening, oppressive. These things sometimes provoked a type of loneliness that was engulfing. A kind of detaching loneliness. A kind of loneliness at its most acute when I was surrounded by people. A kind of loneliness that made me want to be alone – because it was the least lonely place to be.

Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.’ Mary Anne Madmacher

However, there was progress and hope – days when my pain lessened, and although initially just for short periods, moments when I was completely pain free. In these I experienced a lightness of body akin to floating. The same feeling as that very first day of spring after winter – that feeling that lasts only a second in the very moment you step outside and suddenly notice the air is warmer. Shapes and colours returned with a more intense clarity and brightness.

And I was intent on not being completely reduced by my pain. The deterioration in the quality of my life and my passion for running only made me more resolute. I refused to be signed off work, and as my pain improved I began volunteering at running events to reconnect with the community I missed. I felt a deep sense of identification and belonging here and was reminded that runners believe that our bodies achieve what our minds believe. Reconnecting with this helped me enormously to get back up each time I was knocked down. I gained resilience from recognising progress, no matter how small. And for a reason I cannot explain, throughout the whole experience, a notion that good would eventually be born from it drove me on. Some very close friends supported me in remaining focused on this when I became fearful or doubtful. These people still saw me, as me – a person beyond my pain. This too was important.

From April to June 2014 more steady improvements in my condition were made. Finally, in June the scans and x-rays were completed and showed there were no structural causes of my pain. I was put on a waiting list to see a NHS pain management team. By now, my pain was consistently at a much lower level and had settled along my right side in a line from hip to neck. Changing my pain so that it remained only in this area was significant progress and a relief. My pain was no longer a gremlin that jumped around, but a crocodile that rested along the side of my spine. Yet each time I attempted to increase my activity – walk a little further, cycle for a few minutes, or just be more active in day-to-day tasks – my pain flared up. The crocodile dragged me under water again every time I moved too much or whose presence I couldn’t ignore if I stayed still for too long.

I was told it would be at least another three months before an assessment with a NHS pain management team. I also understood by this point that whatever they might offer me in terms of support, would be from a viewpoint of helping me ‘manage’, rather that ‘treat’, my pain. This wasn’t what I wanted. I had no interest in engaging in a process of this nature: I knew it would feed my fears, and fear knocked me off course. I knew that my pain could go, but not that it would, or when this would happen. This, and worrying I’d never be able to run or exercise again was a limiting issue, preventing me from moving forward again. As a result, Christian referred me to Richmond Stace, feeling that at this stage a new voice; his expertise in chronic pain conditions specifically; a change of clinic I didn’t already associate with pain (or running), could help me to overcome my pain further.

‘When you become aware that pain can change you’ve started on the right path, when you know that you can change your pain, then you’re really moving forwards. Don’t fear pain – change it.’ Richmond Stace.

During my first appointment with Richmond, I described my pain to him. But he listened to and heard me – the whole person. He saw the altered sense of self that it had created. This was the first step that really enabled me to know, rather than just be aware of, my pain experience as one within a whole. My pain was not in isolation from the rest of my self. One of the first things he did was to get me to refer to my pain as my pain, rather than the pain as I had been doing. My pain was coming from me, my brain, and therefore was part of me. I felt fully seen for who I was at that moment. But he also reassured me that this wasn’t who I had to remain, since someone who was continually living in pain, was someone I desperately didn’t want to be.

We began a programme that built on the treatment I had already received, continuing to incorporate specific exercises, manual therapy and mobilsation techniques. We also added in a graded motor imagery programme. This included: mirror feedback (performing very precise movements in front of a mirror in order to provide visual feedback to rewire the neuro network within the brain to create new maps); and an online imagery recognition programme to treat my altered nervous system by exercising the brain in measured steps. But as well as treating my pain neurologically, we also began to look at improving other aspects of my life: ways to treat my fatigue, insomnia, and weakened immune system; ways to tackle my fears; ways to manage the demands of life that had become challenges in pain. I had already begun mindfulness meditation as I had read about its benefits in managing living in chronic pain. Richmond coached me how to use and apply it to improve my quality of life as a whole, and explained how it changes pain given its calming affect on the central nervous system’s ‘fight or fight’ mode. We also set very specific targets of what I wanted to achieve in the long-term, such as running a marathon.

Over the following months we began working on this goal. But since just thinking about physical activity would make my pain worse, we started by using visualization techniques to prepare my brain for these in a way it would perceive as non-threatening. First there was an imagery recognition process using photographs of other runners, and then by watching other runners themselves and imagining myself in their position. I then applied specific visualization techniques, which used brain and body, to imagine myself running. Over the course of the following months I would practise these daily, often with the help of music, words and mantras, and gradually, imagining running and other physical activities no longer made my pain worse. Within a couple of months my pain levels had reduced further, and I was able to walk and move more without my pain worsening. I was also experiencing longer periods without pain and by August I felt confident enough to do some yoga. In June, this had seemed like an impossible idea. In October I started running again. In November I completed a 5km. In February 2015 10km. In March (almost two years since the pain had begun) a half-marathon. I still had regular pain during these periods, but bit by bit I learnt to disassociate it from movement, learnt to nudge into it, work around it, sometimes even use it to my advantage. It didn’t all suddenly become easy – at times the process felt relentless and exhausting. However, I was now in control of my pain, rather than my pain being in control of me.

Key to the process was individualisation. Not only did we work towards the goals I had set – things so important to me they would drive me forward – but we also incorporated strategies to challenge the affect that negative words had previously had on my progress, as well as aspects of my personality, mindset and beliefs about past experiences that may be causing the persistence of my pain. As a result, even in times when my pain flared up, I could increasingly remain feeling focused, positive, safe and reassured. These strategies were taken from a variety of fields – from writing, philosophy, sport, psychology, and science. It was finding what worked best for me. I deepened my understanding of chronic pain to understand my own particular pain so well that I could overcome it. I now perceive any flare-up as an opportunity to learn, rather than something to be feared – although these flare-ups are becoming fewer and further between each month now.

‘YOU CAN IF YOU THINK YOU CAN.’ Norman Vincent Peale

Overcoming my chronic pain was the most physically, mentally and emotionally challenging thing I have ever done. But in retraining my body how to move, my mind how to think, myself how to be, it has left me not only running further than I have in eight years (with no knee or back pain). It has also taught me to find the same joy and energy in stillness as I find in movement. It taught me to live my life with greater positivity, confidence, compassion, gratitude, and to be more fully in the present moment.

And to anyone living in persistent pain: it is possible to overcome chronic pain. You do not have to learn to live with it, or manage it. You can treat it and change it. No matter how out of reach this may seem, know that it is true. ‘You can if you think you can.’