I chose to focus in particular on the relationships that different people suffering from chronic painful conditions have with their pain: how does pain affects their daily lives, and conversely, how they cope with it in their turn?

I sat in on a pain clinic lead by a consultant anaesthetist and specialist in pain management. In addition to an interview with a woman who has for many years suffered from rheumatoid arthritis, and whom in this essay I will call Fiona, these experiences have mapped out a new face of pain that I had not been exposed to previously, sensitizing me to issues I was previously unaware of. The stories and feelings that each of the five people raised were so colourful, their words so vivid, that I drew inspiration from their accounts to do something which I have not attempted since leaving home aged eighteen: paint a picture. In this assignment, I only hope I can do their descriptive powers justice, and that the feelings and thoughts that they evoked in me are understandable in writing and in this pictorial form.

One of my earliest childhood memories of lasting pain is curling up in bed with a tummy ache. There was very little except making-up a hot water bottle that a parent to do, no wound on which to put a plaster, no bump to kiss better. But I remember finding out that an excellent ‘sore tummy’ remedy was to lie face-down in bed with my stomach against the mattress, and imagine the pain being soaked up as if by a sponge. I was utterly convinced it worked, and even taught it to my little sister, though I’m not sure she warmed to it.

Pain is defined by the International Association for the Study of Pain as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage” (1). I would not be surprised if most people agreed that this definition sounds as dry and devoid of substance as a Jacob’s cracker. We have all at some stage or other, unless we belong to a family carrying a rare genetic mutation that prevents our nerves from conducting pain, felt pain. And pain affects us on many different levels: it can prevent us from carrying out certain physical tasks, it can flatten our moods and cause us to ignore pleasures we would otherwise have enjoyed, and it can isolate us. The fact that we have given it its current name – ‘pain’ – after the Latin word ‘Poena’, in Roman mythology the spirit of punishment, shows just how inextricably tied this sensation is with the grain of who we are and how we live. However to an aspiring experimenter, the IASP definition, with its peppering of emotional and subjective, flags up the fact that pain is a personal experience, and the basic sensational component of the definition is the tip of the iceberg. This makes it extremely hard to qualify, quantify, study in non-human models… in short, it means that pain studies are extremely difficult from the scientific perspective.

And yet, pain is the main reason patients seek medical help (2), and over the years western medicine has become highly skilled at using patient histories and examining them physically in order to use pain as a diagnostic tool to find root problems to cure. Thanks to efforts made by pioneering scientists, not least Bristol physician Thomas Beddoes and his young assistant Humphrey Davy who back in 1795 self-experimented with Nitrous Oxide (3), modern medicine disposes of powerful anaesthetic agents that block out pain in acute settings. This transition a surprisingly long time, and before Queen Victoria’s reign, most people had to undergo surgery with little or no pain relief (since it was deemed that drunken patients could be harder to handle than alert ones) (3). Thank goodness we now know a great deal more about acute pain than we did then, and as a former neuroscience student, I learned what types of nerve fibres conduct what type of pain, went into painful detail about the different channel proteins present on different nerve fibres, and information such as this is extremely useful for understanding the mechanisms of anaesthetics and other drugs. Can we one day hope to numb pain without compromising feeling or movement? Such aspirations are certainly on pharmacologists’ minds for the future, and I wonder whether any of my classmates back then have chosen to tackle problems such as those as the focus of their furthered neuroscience careers.

As a hopeful future clinician, I feel this simplistic and readily-studied model of pain falls too short of the pain that brings patients to seek help from doctors. History is full of wonderful stories that illustrate just how remarkable and truly complex the human relationship to pain is, not just on a biological level, but on a wider, personal level also. Surgeon Leonid Rogozov’s self operation to remove his appendix (4), or a favourite of my grandfather’s: goalkeeper Bert Trautmann’s ‘football folklore’ moment in 1956 when he played on for the remaining 20 minutes of a game after sustained a neck fracture in a nasty fall, or even the Indian fakirs’ strength of mind when walking on hot coals, are a testament to man’s powerful intrinsic abilities to override painful feeling. Neuroscience has been interested in studying these central analgesic systems in the hope of using patient’s own circuits to alter pain perception, and already deep brain stimulation in man has successfully produced selective analgesia to patients with previously intractable pain (5). But such procedures are costly, time-consuming, and invasive. Neurosurgery is just not a realistic course of treatment for so many people, and many would probably not choose to undertake it anyway.

In the developed world alone, 20% of the adult population is affected by pain that persists for more than 3 months (6), but despite the abundant need for pain relief worldwide, the needs of these patients are still largely unmet. Despite its marvellous toolbox of neural stem cells and genetic manipulations, modern medicine is still fantastically ignorant of how pain is processed at higher levels in people with long-term pain, which is estimated to cost the UK economy alone a cumulated £11Bn a year.

In carrying out this project, I aimed to leave my former laboratory concerns and conundrums to one side, and seize the chance to talk to real experts of what pain is: the people who live in close companionship with pain day by day, who experience it first hand and who are at the front line of treatment.

It was my first ever visit to a pain clinic, and I had spent all morning looking forward to it. As I wound my way up the stairs and through tortuous corridors of the hospital, I thought back at the few times ‘pain clinics’ had been mentioned in a clinical setting I experienced previously. The practitioners had been from different specialties, but there was always and air of defeat associated with the ‘pain clinic referral’ as if to say “I’ve failed my patient. I’m really at odds’ end as to what to do here, and not a single drug, no amount of gabapentin, amitryptiline or any of the usual stuff made any difference. I’ll have to refer them on” and I sat reminiscing in the consultant’s office, I started to feel my insides twist with dread as my watch signalled that the opening time for the clinic was approaching.

I was worried about what feelings I might myself have when faced with people in constant, intractable pain. I wondered what pain would look like, whether patients would arrive looking sweaty and clammy, struggling through gasps, writhing in their seats? I knew this was very unlikely to be the case, but still I couldn’t evacuate the images of faces with knitted brows, clenched teeth and squinting eyes that came to mind. I already felt the heat of the room, though I was still perfectly alone. But I was also excited to soon be witnessing how a real ‘pro of pain’ would go about advising in these difficult situations. The IASP deems there is a lack of emphasis on pain management, and that “pain education is severely lacking” (2). I mused over what miraculous pain-relieving skills, if any, the consultant would have at his fingertips, as I’m sure many patients in the waiting room down the corridor have done over the years.

Four sets of notes for the afternoon clinic lay on the desk, bound with an elastic band, and as I read through my second set, the doctor walked through the door, calmly greeted me as he took his seat, and swiftly stepped into his pre-clinic routine. It felt as if that first five minute exchange was some kind of easel set-up. My seat in the corner by the window would be an ideal spot from which I could see the patients’ faces clearly, while being distant enough so as to gain a good outside perspective on the doctor-patient interactions.

The afternoon flowed seamlessly, and the white stony-dead room I had occupied 20 minutes earlier was unrecognisable to me as it underwent four remarkable metamorphoses of colour, hues, lighting, and size. The four patients had all taken that very same seat, the durations of their appointments were very similar, and yet a markedly unique ambiance governed the room in each case. I could discuss each consultation separately, and it would undoubtedly make more clinical sense to do so, however ever since I walked home from clinic at 5pm, my thoughts and impressions have centred around themes I had had the pleasure to discover that afternoon, and that had emerged in different patients.

In each of the four consultations, and in my one-hour interview with Fiona especially, I was marked by how starkly living with pain somehow projected patients into being a character from a new story. Their previous lives had all been shaken up by a perturbing event: lifting a heavy chair, undergoing surgery, struggling more than usual to carry skis around on holiday, or even a funny feeling in a leg prompting a Google self-diagnosis. Some of these, the chair and the two surgical procedures, were punctual, and had provoked instant help-seeking especially in the two patients in whom pain followed surgery, as the support structures were already in place as a part of their post-operative assessments. But in Fiona’s case, for example, the feeling of “being taken over by something” which made her “think twice before making a cup of tea” and “even found reading a decent book boring” lasted for six whole months before she sought help from a doctor. Fiona slowly began finding daily activities unbearable, such as opening doors with knobs instead of handles, opening tins, switching taps on, and especially driving, which were extremely debilitating and isolating. Help-seeking did not occur until Fiona uncharacteristically explained, or in her own words, “moaned” to her sister, who was herself already suffering from rheumatoid arthritis. But like many of the patients that afternoon, Fiona remembers the time of her diagnosis as a huge relief, where “it all set in motion” and she “didn’t feel like a moaner”. One patient had expressed how she had been “very frightened when I didn’t have my diagnosis”.

Like any story, there are ‘befores’ and ‘afters’. In some cases, good family support and a natural inclination to cope in difficult situations keep the effects of pain encapsulated in the physical world. One patient that afternoon struck me in particular by how extraordinarily happy she was in all her clinical scoring sheets. Despite the fact that her Complex Regional Pain Syndrome (CRPS) was completely uncontrolled pharmacologically, and that everything had failed, she described herself as being “very happy most of the time”, and the pain bothered her mostly because it “prevented [her] from walking”, made it difficult for her to tend to her house and garden, and also meant that her husband needed to do more things for her.

In other cases, such as with one patient with “burning pain around the eye” which felt like someone was “yanking a cord”, the symptoms really took over her fragile balance. A host of personal losses, both of her partner and her work as an academic, aggravated her condition to levels of pain that were “unbearable”. Despite the fact that she responded well to pain relief, she needed very high doses to get her through the day. I could see how her enormous anxieties were feeding her feelings of pain, and how the situation made her feel like a different person to who she was previously – saying “it is so much at odds with who I am”, and leaving her to wonder, amongst all the clinical uncertainty, “whether this is as good as it gets – whether this is normality now.” Her fast, panicked, almost frantic tone pointed at how she was struggling with her condition even as she spoke, and when she explained how, with her condition “time goes so long”, I was not only reminded of the poem “Pain – expands the Time” by Emily Dickinson, but I also felt how extremely tiring it must be for her. I was feeling panicked on her behalf for the 40 minutes of the consultation, and watching her exit the clinic through the double doors on her return to a cold house provoked huge sadness in me. I wanted to reach out to her, to appease her, to help her build a coping strategy… instead I watched her leave, a little bit more relaxed than when she arrived, optimistic at her scheduled acupuncture session with the clinic specialist nurse, and greatly in need of her upcoming first appointment with the expert pain management psychologist.

This assignment really enabled me to see some key concepts put into practice in settings where patient participation is integral to establishing the correct course of treatment:

In the case of the afore-mentioned patient, it was clear that her illness emerged from, and was affecting different aspects of her life, and a consensual agreement that psychological therapy would be beneficial shows how the intervention also needs to address the different domains of her condition, uniting the two first principles of whole person care.

The wonderfully agreeable woman who suffered from CRPS illustrated another aspect of whole personal care beautifully – despite her pain, she refused inpatient care at a specialist centre in a nearby town as being home with her family was more important to her, and instead opted for a sympathetic nerve block in a few weeks’ time. In all cases, effective relationships, both with the doctor, but also with family and friends were vital for effective care, and lack thereof made coping with pain extremely difficult.

And finally, it is only through listening to the patient’s story that the clinician could begin to understand what each and every patient meant when they came for “pain relief”.

Altogether, this work really opened my eyes to the importance of emotional engagement with the patient in providing better care, and I really hope that many of the lessons learned during the course of this project will serve me well in my future clinical practice.

(An extract from a Bristol Medical School WPC assignment)

REFERENCES:

Pain — expands the Time — by Emily Dickinson

Pain — expands the Time —
Ages coil within
The minute Circumference
Of a single Brain —

Pain contracts — the Time —
Occupied with Shot
Gamuts of Eternities
Are as they were not –

1. IASP. Part III: Pain Terms, A Current List with Definitions and Notes on Usage” (pp 209-214) . [book auth.] H. Merskey and N. Bogduk, IASP Task Force on Taxonomy. Classification of Chronic Pain, Second Edition. Seattle : IASP Press, 1994.

2. Patel, A. Kopf and N. B. Guide to Pain Management in Low-Ressource Settings. Seattle : IASP, 2010.

3. Porter, Roy. Cambridge Illustrated History of Medicine. Cambridge : s.n., 2009.

4. Auto-appendectomy in the Antarctic: case report. V. Rogozov, N. Burnel. 2009. BMJ 2009; 339:b4965.

5. Analgesia in conjunction with normalisation of thermal sensation following deep brain stimulation for central post-stroke pain. Pickering AE, Thornton SR, Love-Jones SJ, Steeds C & Patel NK. 299-304, s.l. : Pain, 2009, Vol. 147.

6. Survey of chronic pain in Europe: prevalence, impact on daily life, and treatment. H. Breivik, B. Collett, V. Ventafridda, R. Cohen, D. Gallacher. 287-333, s.l. : European Journal of Pain, 2006, Vol. 10.