Giving Answers, But No Cure, to People with Chronic Pain
Dr. Abdul-Ghaaliq Lalkhen on Fibromyalgia
Usually pain goes away, not dramatically, like an unwanted guest you kick out of your house, but quietly. At the end of its time with you it becomes an itch at the edge of your perception, and then eventually it is no longer present at all. The alarm switches off because your body has healed. There are times, however, when, despite all the tissues knitting together, pain persists.
Most people think of pain as a symptom of injury or harm, and the main preoccupation of the doctor is to find out what the cause of the pain is. Doctors often employ an approach to medicine that involves gathering many pieces of information and whittling them down to a single diagnostic label, aiming to reduce the complexity presented by individuals with persistent pain and a multitude of symptoms down to a single point of origin—a pain generator.
But pain is a very complex biological alarm system. It is biologically ancient, with pathways that are hardwired into multiple areas of the brain, and it is not as specific a guide to danger as we like to think it is. Dysfunction of the organs, for example the heart or the pancreas, results in poorly localized pain to the left arm and the middle of the stomach, respectively. The specificity of pain as a symptom is therefore often overestimated. A straightforward diagnosis—a pain generator—cannot always be found. The tools doctors employ to reach such a diagnosis have traditionally been taking a history of pain, ordering tests, and performing a clinical examination. In the past medical students were encouraged to use the mnemonic derived from the name Socrates when assessing pain: site, onset, character, radiation, associations, time course, exacerbating/relieving factors, and severity.
Medical students today, in contrast, are increasingly taught the Calgary Cambridge method of consultation. First the doctor will make every attempt to build rapport by asking open questions and employing active listening techniques, placing the patient at the center of care. They collect information in order to assess both the disturbance in the person’s physiology (the disease) as well as an understanding of the psychosocial factors that may impact the disease. This change in how doctors assess patients is rooted in the understanding that disease and illness are two very different concepts: disease is what the doctor says the patient has, and illness is what the patient suffers with. Doctors assess and treat for disease, while patients report illness. The disease is determined through a process similar to the old method, by taking a history, performing an examination, and ordering tests to narrow down the possibilities with regard to what is different from normal or not functioning properly. The concept of illness attempts to understand the disease within the context of the patient, because this has implications for how successfully that condition may be treated. Unfortunately, most doctors still operate a reductionist model and ignore the psychosocial aspect of a patient’s health.
Lower-back pain, for example, is a universal human affliction and is often attributed to dysfunction of various components of the spine, which is a very complex structure consisting of vertebral bodies stacked one on top of the other. Various tests have been devised by doctors in order to mimic the pain the patient presents with and therefore identify the pain generator—the source of the problem and the bit of the patient’s back that can be fixed with screws and rods, cut out with a scalpel, or made numb by burning its nerve supply. This follows the reductionist trap of trying to refine a disease and define a disease process. But the spine is not a structure that is easily defined in such terms, and the innervation of the spine is complex; one nerve may in fact give sensation to multiple structures.
Nociception is the detection of harmful stimuli by specialized receptors and nerve endings, and this information that damage has occurred to the body is transmitted to the spinal cord and brain. Pain is the way the individual perceives this harmful information. Pain occurs when the person filters the information about harm through their past life experiences and current psychological makeup. The information about harm is also filtered through the cultural and social lens of that person, and the presentation to the GP with symptoms of pain will very much depend on the individual’s psychosocial context.
Thinking about humans as having a body separate from their mind rather than being an integrated entity leads to a poor assessment and insufficient management in healthcare. When the body is seen as a machine and the focus is on looking for a disease, a disruption of bones and ligaments, or dysfunction of organs, the impact of psychological and social factors on both the initial reporting of symptoms and the subsequent response to treatment is ignored, leading to inadequate management and a lack of progress in improving function.
As we have explored, pain is an abnormal sensation emanating from the body and is interpreted through the person’s own unique experiences and understanding of normal. Pain is the final expression of what the individual understands about their body and their tolerance for discomfort. Pain is culturally determined: where pain is due to an obvious cause, such as a broken limb or a musculoskeletal strain, it is relatively easy to understand; where pain occurs insidiously and progressively it is more difficult to understand. We are as a species meaning-makers, and if our doctor can’t explain our pain we will develop our own narrative rooted within our cultural context. So what happens when there is pain and illness that has persisted beyond the normal period of healing, but no evidence remains of the initial disease, injury, or ongoing tissue damage? At this point, a patient is said to suffer from chronic pain.
I sometimes run pain clinics on a Saturday when the hospital is quiet and I have more space to breathe. (This also enables me to get out of doing the Saturday cleaning at home.) I first met Helen on a Saturday. She was very fashionably dressed and was accompanied by her husband. They seemed like a loving and attentive couple; the partner who attends the appointment is sometimes too attentive to be helpful. She had the air of reticence I often see in patients who have been referred to a clinic named after a symptom. Neurosurgical clinic, cardiology clinic, respiratory clinic—these are clinics that inspire confidence of a cure. Not so a pain (management) clinic. Helen had been referred by a neurosurgeon because she had complained of pain in her arms and legs. The neurosurgeon had explained to her that there was no target for an operation on her spine that would cure her pain. She did not receive this information well. She’d had two previous operations on her neck and assumed that the symptoms she was experiencing were symptomatic of the same problem. So she could not understand why she was not being offered a third operation. (Not that the other two operations had resolved her symptoms. I am always amazed and a little bit envious of the faith that people have in surgeons and their scalpels.)
Helen was 48 and worked as an operating-room nurse, a job that involves standing for long periods of time, as an operation may last for three or four hours. Scrub nurses have to open up large, heavy trays and keep an eye on the number of swabs used in case one gets left inside the patient, a mistake that is easier to make than you think. Helen had two children in their teens and an older child who had children of his own. She was therefore mother, grandmother, wife, and NHS worker. I asked about her pain symptoms, and she said that she gets pain in most parts of her body on most days—a deep ache that gets worse as the day progresses. She experienced aching in her legs and her arms, felt constantly tired, could not remember things very well anymore, never woke up refreshed from sleep, and often had episodes of low mood for no real reason.
In my opinion, Helen was suffering from fibromyalgia syndrome, a poorly understood condition thought to be due to widespread dysfunction of the nervous system. We do not know what causes it, but patients complain of diffuse, achy, widespread tenderness throughout all four quadrants of the body. Environmental factors that can trigger fibromyalgia include soft tissue injuries such as those sustained in a road traffic accident as well as prolonged periods of psychological stress. The damaged muscles and ligaments from such an accident would normally result in acute pain lasting a few weeks, but in a genetically susceptible individual the stress (from both physical injury and psychological distress) can trigger the development of widespread and persistent pain.
Fibromyalgia and other, similar conditions such as chronic fatigue syndrome, which fall under the umbrella of “central sensitivity syndromes,” may be triggered by certain types of infections, for example Lyme disease or viral hepatitis. Psychological stress, including from deployment to war, has been associated with the development of conditions such as fibromyalgia. There appears to be a mixture of genetic factors that renders an individual vulnerable to the development of central sensitivity syndromes. The genetic markers by themselves are not sufficient to cause these conditions, but interaction with environmental triggers can result in dysfunction of the neurological and hormonal system of the body, producing excitability of the pain system as well as related systems, such as those regulating sleep and mood.
Patients with fibromyalgia syndrome have associated sleep disturbance, chronic fatigue, and memory impairment. In addition, patients may present with widespread nonspecific and confusing (to myriad specialties) symptoms that can include bladder dysfunction without any obvious cause, breathlessness without respiratory disease, dizziness without neurological cause, burning, numbness, and tingling unrelated to any nerve injury, irritable bowel syndrome, and a host of other symptoms. The diagnosis of fibromyalgia is made after patients score the number of areas where they experience pain, together with the severity of their cognitive impairment, unrefreshing sleep, and fatigue. They also score any of the complaints they suffer with in order to arrive at a composite score. In the absence of any other condition that can better explain their symptoms, and if they meet the threshold score, the patient is given a diagnosis of fibromyalgia syndrome. Fibromyalgia may occur simultaneously with other chronic pain conditions, like osteoarthritis, rheumatoid arthritis, and systemic lupus erythematosus. Approximately 10 to 30 percent of patients with these rheumatic disorders also meet the criteria for a diagnosis of fibromyalgia syndrome.“Is the pain psychological, and are you telling me I am imagining it?” She then started to cry.
When I explained this, Helen looked at me skeptically, as most patients do when I talk them through fibromyalgia. In a world where we believe in concrete, visible signs of disease and illness and where there is a scan or blood test for nearly everything, the idea that you can have dysfunctional nerves sounds like psychological gobbledygook to most people. I acknowledged that this was quite a lot of information to take in and that she was probably better off reading some of the leaflets we give to patients about the condition, pain management, and the role of clinical psychology in treating it. I offered her the option of coming back to see me if she did not understand the information; alternatively, if she had understood and wanted to embrace an approach that favored rehabilitation, then she could make an appointment to see one of our clinical psychologists. As first dates go in the pain clinic, it was not one of my more successful. I could sense her need for a more definitive solution to her problem.
A month later Helen phoned the pain clinic to ask for another appointment with me. When she and her husband sat down, she said to me, “I do not understand. I do not understand why if my arm is hurting it is not because of a trapped nerve in my neck. I do not understand how I can have pain in my arm that is not due to a trapped nerve or problem with my muscles. Is the pain psychological, and are you telling me I am imagining it?” She then started to cry. Her husband leaned toward her somewhat helplessly and gently stroked her thigh. When someone starts to cry in the clinic I often reflect on the expression “private pain” and the idea of being alone with your pain. I have never met a lonelier person than someone suffering with pain. Unlike a child that bumps its head and is soothed by the embrace of a parent, the chronic pain sufferer is not helped by the embrace of a loved one because the pain is unrelenting, and they cannot be held all day long.
The body has a system of nerves that form a network, and the dysfunction of these nerves results in the experience of persistent pain. I usually google “nervous system” and use the images section to talk a patient through what they are experiencing. I explain that the nervous system works a bit like a car alarm that goes off because somebody is breaking into the car; this is acute pain. When the intruders have been chased away, the alarm switches off. But sometimes the alarm goes off without there being an intruder, and in this case the problem is with the alarm itself. Both the pain and the loudness of the alarm are real, not imagined; the problem is not with the machinery but with the way the system functions. In the case of chronic pain, the alarm cannot be switched off once it is broken—the car owner can only learn to manage their response to the alarm.
This is the most distressing part of my job: offering answers with no hope of a cure. Being told that you have to manage a problem rather than having it cured—there is no disc that can be cut out, no bone that can be mended or joint that can be replaced—is difficult for most people to understand and accept.
I told Helen that our technology is not yet sufficiently advanced and that there is no scan or blood test that will prove she has chronic pain. She said her biggest problem was that when she tried to explain fibromyalgia syndrome to her colleagues at work they said, “Oh, that’s a made-up condition, it’s all in your head.” They assumed she was trying to get out of work. Sadly, this kind of negative reaction is not uncommon, even among healthcare professionals, and is the result of the widespread lack of understanding why and how people develop chronic pain.
From An Anatomy of Pain by Dr. Abdul-Ghaaliq Lalkhen. Used with the permission of Scribner. Copyright © 2021 by Abdul-Ghaaliq Lalkhen.