21 things I wish I had known before I started working with chronic pain.
By Mark Grant MA
1. Chronic pain involves a lot more than nociception.
Although physical discomfort is the most obvious symptom of chronic pain, its really a syndrome involving nociception, fatigue, anxiety, injury/disease, traumatic stress, brain processes, disability, identity changes and hereditary and environmental factors. Just treating chronic pain as some sort of maladaptive outgrowth of acute pain is an inadequate of perceiving this problem and one that effectively closes down understanding the various contributing factors and how best to treat them.
2. How addicted western civilization is to the idea that pain for which there is no obvious medical explanation is invalid.
Despite it being over 50 years since pain was officially defined as “An unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage,” and the fact that over 50% of visits to general physicians are for medically unexplained pain, doctors continue to tell sufferers its all in their head, physical therapists continue to tell sufferers “no pain no gain” and suffers continue to disbelieve their own bodies and wonder if they are crazy. The idea that pain could, at least in part, be a legitimate symptom of unresolved emotional stress seems to be too threatening a possibility. Opening clients to this possibility is one of the most important challenges of pain management.
3. How much discrimination chronic pain sufferers are subject to
Because their pain does not fit the generally accepted view, chronic pain sufferers are often invalidated. This makes them doubt their felt reality, and prevents them taking the necessary steps to help themselves. As May et al (2019 has observed,
‘The disparity between expressed symptoms, pathological signs and perceived disability in CLBP has led to the moral character of the sufferer forming a constant subtext to medical discourse about the condition.’
In fact the true incidence of malingering in chronic pain sufferers is very low.
The invalidation becomes institutionalized when an insurance provider is involved and sufferers are questioned and forced to defend their symptoms. As Bessel van der Kolk has written;
“When the issue of causation, (blame and responsibility) becomes the main focus, one is inevitably confronted with man’s inhumanity to man, carelessness and callousness, abrogation of responsibility, manipulation and failure to protect.”
This invalidation is not unlike that experienced by traumatized soldiers in WWI who were ostracized and sometimes executed for cowardice when they were really suffering from “shell-shock.” It also has its parallel in abused children who may have been intimidated into silence by the perpetrator or punished by family members for disclosing abuse. When a sufferer’s reality is denied it makes the injury that much worse.
So one of the most useful things you can do for a chronic pain sufferer is to validate them.
4. How much trauma chronic pain sufferers are subject to
As trauma therapists we expect to find traumatic antecedents to our client’s problems in the form of physical or sexual abuse, life-threatening accidents and emotional neglect. Chronic pain sufferers are not only more likely to have experienced more common forms physical or emotional trauma (including attachment problems), they are also likely to have suffered additional trauma as a result of their medical treatment or diagnosis. For example, recipients or multiple surgeries are more than twice as likely to develop PTSD, as are women diagnosed with breast cancer and so on. Because it happens under the circumstances of treatment, medical trauma often goes unrecognized. Noone wants to speak ill of their physician, but it happens and its often more than just bad medicine, it’s a kind of betrayal.
5. The story of the symptom is not the full story.
Regardless of how when or where the pain started, the true final causes of the pain are often more than the injury, accident or illness that triggered the pain (see below). In contrast to the more visible medical aspects of pain, many of the psychological drivers of pain remain unknown to the sufferer due to lack of awareness, denial or dissociation. The uncovering of that story is an essential part of the treatment and the key to healing. Training in trauma-informed approaches, as well as some understanding of dissociation, are essential.
To the extent that chronic pain is an expression of unprocessed physical and emotional stress, regardless of any associated injury or illness, it is a kind of somatization. The key process in somatization is dissociation, a disconnection between sensory and mental aspects of experience. Pain is to some extent, the clients body saying what they cannot say or even know about.
Dissociation is common in chronic pain sufferers depending on how much trauma they have suffered. In one of the few studies of dissociation in chronic pain sufferers Duckworth et al (2000) found that absorption, amnesia, and depersonalization were the three most common dissociative phenomena. Chronic pain sufferers were found to experience these dissociative phenomena 11% of the time (compared with 3% in the normal population). Not surprisingly, chronic pain sufferers with PTSD were found to experience dissociative phenomena more often (17% of the time). Dissociation was also more common among sufferers who felt more distressed and isolated but not necessarily correlated with pain severity.
Regardless of whatever else the client has endure, pain is also dissociative – it separates us form ourselves. As Canadian Hypnotherapist Marlene Hunter has noted, “pain is a dissociative experience – it separates us from what’s going on around us.”
7. The role of brain functioning - chronic pain as a kind of memory.
Apkarian has described chronic pain as ‘a neuro-degenerative disorder’. The trauma-informed approach teaches us that present symptoms can be a manifestation of past trauma, maintained by central sensitization and kindling. As Scaer describes it,
“..a traumatic event whose completion is truncated by lack of spontaneous resolution of a freeze/immobility response … is associated with a complex set of somatic pathologic events…kindling is intrinsic to the self-perpetuation of this pathologic process, driven by internal cues derived from unresolved procedural memory of threat, and enhanced by endorphinergic mechanisms inherent to both the initial response to threat, and subsequent freeze/dissociation.”
Whether the traumatic event was a car accident or years of developmental abuse, the subsequent changes to brain structure and functioning and the central nervous system are the key to understanding and unlocking chronic pain. Because pain is a procedural memory the precipitating circumstances are often forgotten or disconnected from the current symptoms.
8. There is (nearly) always a psychological component.
Regardless of what injuries or illnesses the client has been diagnosed with, there is nearly always a significant psychological component to chronic pain. When you consider the high likelihood that chronic pain sufferers have endured previous trauma, together with the effects of their illness and pain, this is not surprising. The challenge is to shift the focus from medical concerns and create a safe space within which to uncover the psychological factors that are contributing to the pain (e.g. “I deserve to suffer’; ‘Its not safe to not have pain,’ etc). Unlike some kinds of physical damage, psychological factors are changeable. But you should never suggest that pain is all psychological.
9. People have different constitutions.
Jean Charcot (the famous French neurologist) believed that somatization (or hysteria) was caused by a combination of environmental stressors and hereditary disposition. His successor Pierre Janet believed that human beings have an innate amount of latent psychic energy (force) that can be activated (manifest) to accomplish tasks of living. Tension is the capacity to utilize that energy. Janet believed that that some of us have more force (energy reserves) than others. For example, he viewed Napoleon as a force “millionaire” because of his capacity to accomplish numerous tasks over a sustained period, whilst many of his hysteria patients had lower reserves. Individuals with lower reserves of force are more susceptible to psychological and health problems (agitation) because of an imbalance between energy and force, and excessive depletion of force. A person with low reserves of force might develop Tinnitus because of sustained stress, while a person with high levels might be completely unaffected. When treating chronic pain sufferers each client’s innate energy levels, constitution and tolerance for adversity should be individually evaluated, beneath the veneer of coping, achieving, appearing normal etc.
Twin studies indicate that about half the risk of developing chronic pain can be attributed to genetic factors. Heritability estimates range from 30 to 70 per cent for most pain conditions. Having a genetic predisposition doesn’t mean you will develop pain, but it does mean that your risk is increased if you have experienced severe stress and/or illness. When environmental stress and genetics interact to produce illness, your genes actually get altered - a process known as epigenetics. This is a developing field with improvements in diagnosis and treatment likely to emerge in the near future. In the meantime its worth sharing this information with clients and also asking them if anyone else in their family suffered from chronic pain.
11. Chronic pain has survival value.
From a survival perspective chronic pain has traditionally been viewed as having no value since it is no longer telling the organism anything that is new. The pain has already done its job of alerting the organism to the fact that there is injury and assuming treatment has been sought, there should be no further need for it. In 2014 researchers from the university of Texas decided to test this popular view of acute vs chronic pain by inducing central sensitization in squid and seeing what happened. They did this by cutting the ends off some squid’s tentacles. They then anesthetized some of the injured squid and compared how normal (healthy, uninjured), injured no-pain (anesthetized), and injured/not anesthetized (chronic pain) squid reacted when faced with predators. The researchers found that the squid in the chronic pain condition were better at avoiding predators than both the healthy and injured no-pain squid. They surmised that the hyper-aware state in the injured non-anesthetized squid must be serving to protect them from the increased risk of death associated with their injury. The researchers concluded that ‘the propensity to develop chronic pain is an evolutionarily encoded feature of complex neural systems.’ Overcoming chronic pain thus requires addressing safety issues arising from the effects of pain over and above the purely signal value of pain.
12. Non-western Approaches.
Non-western approaches such as Chinese or oriental medicine, Ayurvedic medicine, and Homeopathy offer a much more holistic approach to understanding and treating disease and illness. For example, according to ayurvedic medicine everything is composed of five elements: Space, Air, Fire, Water and Earth. Disease arises because of imbalance that systematically moves through the following stages.
1. Accumulation; In the first stage of the disease, one or more of the five elements begins to accumulate within the body or mind.
2. Aggravation; When the imbalanced element moves outside of its normal boundaries, it is believed to have entered the second stage of the disease.
3. Dissemination; The wandering elements move throughout the body, in essence, looking for weak points in which to settle.
4. Localization; The wandering elements settle in a different part of the body.
5. Manifestation; Recognizable symptoms manifest.
6. Disruption; A chronic disease condition arises.
This is a much more comprehensive, systemic model that western medicines cause-effect approach. Recent discoveries regarding the role of trauma are stimulating theories of pain that are increasingly consistent with these incredibly old ideas. For example, the Ayurvedic concept of localization has its parallel with the modern concept of central spreading where pain develops in other areas of the body beyond the site of the original illness or injury. Ayurvedic medicine involves recognizing and reversing early signs of imbalance, (in a trauma sufferer this might mean paying more attention to their feelings) and managing illness with mind-body inputs such as increased exposure to nature, supplements, massage and diet.
13. Overcoming chronic pain involves a lot more than pain control.
As Fuchs (2009) says, ‘A psychiatry of the brain has to be systemic ... [that is] one that addresses the physical, emotional and environmental aspects of illness and corresponding dysfunctional patterns of neural activity.’ Given the sensory, emotional and cognitive elements that make up chronic pain, overcoming pain involves much more than just pain management, namely:
Tame the pain
Uncovering the meaning of your pain
Dealing with other stressors
These steps offer a comprehensive, task-oriented approach to overcoming pain and its effects from the most basic physical aspects of pain through to its effects on identity. Your assessment and case-conceptualization will determine the order of proceedings although in most cases therapy involves incremental work and much circling around and moving backwards and forward.
14. The ascending and descending analgesic systems
Human beings are endowed with bottom-up and top-down pain pathways, each of which relies on differed neurotransmitters. Both system can be “re-tooled” to act as analgesic pathways. Bottom-up strategies include sensory inputs such as hot and cold stimulation, topical creams, and of course bilateral stimulation. Top-down strategies include inputs such as imagery, accessing memories of comfort and mindfulness. In terms of the window of tolerance, clients with higher levels of distress (including pain) may not be able to harness top-down strategies initially, because of their reliance on sustained attention and memory processes. They may have to rely on brief externally mediated inputs until their arousal levels are less high. There are many methods for activating each system – see the adjunctive strategies chapter in my ‘Pain Control with EMDR manual’ (6th edition) for more information.
15. The client must want to get better.
Noone wants to be in pain, but human beings are complex and there may be parts of the client’s personality that need the pain as a substitute for other unmet needs. Beyond the signal value of acute pain, people need pain for many, usually unconscious, reasons. An adult survivor of abuse might subconsciously “need” their pain as evidence of their deserving to be punished, or fear of negative consequences of feeling well (where being in pain is part of a state of heightened alertness). Chronic pain sufferers who have insurance claims may need their pain to validate their injury in the face of attempts to minimize or dismiss it to reduce costs. A client I was treating recently, who genuinely wants to get well, but is completely dependent upon an insurance company to pay for his treatment and limited living expenses, confessed that he felt conflicted about applying the strategies I was teaching him as any improvement could lead to him being labelled a malingerer and the withdrawal of this support. He had already experienced much judgment and mistreatment at the hands of medical specialists who could not reconcile his organic injury with his pain levels. Such conflicts fall under the rubric of ‘secondary gain.’ Such conflicts must be identified and carefully and respectfully addressed if the client is ever to make any lasting progress with their pain.
EMDR is indicated as a treatment for chronic pain for many reasons;
The methods efficacy with psychological trauma, one of the most significant contributing psychological factors, (McWilliams et al 2003, Fishbain et al 2017).
The methods ability to ameliorate physiological aspects of traumatic memories (Elofsson et al 2007).
The methods ability to rectify maladaptive emotional processing (Tesarz et al 2019).
The methods consistency with neurological mechanisms of pain, including kindling and neuroplasticity (Ray & Zbik, 2002).
EMDR is one of the most direct ways to process-trauma-related pain such as whiplash, phantom limb pain, gastro-intestinal problems, Fibromyalgia, chronic fatigue pain etc. As in the treatment of trauma, the key to successful treatment is identifying the right target; that is the issue or memory that is the most fear-laden, the thing that is maintaining the clients current stress/pain levels. In the assessment phase you should consider developmental trauma in addition to more obvious forms of trauma such as physical or sexual abuse.
The second most important task is being able to assess whether this client is able to benefit from EMDR, often this is a matter of how much energy they have. When working with pain you will soon discover the answer to this question and if this answer is no, meaning the pain is being maintained by less accessible psycho-physiological processes, don’t despair, there are other ways of developing healing resources.
Hypnosis is an indispensable adjunct/alternative to EMDR for clients whose pain does not resolve following EMDR or for clients whose pain is treatment resistant. Milton Erickson, the leading Hypnotherapist of the 20th century, defined hypnosis as,
“a communication of ideas and understandings to an individual in such a fashion that he will be most receptive to the presented ideas and thereby be motivated to explore his body potentials for the control of his psychological and physiological responses and behavior.”
Hypnosis is a learning state, not unlike EMDR but hypnosis offers a different path for accessing the client’s subconscious resources, via direct or indirect suggestion, dissociation, age-regression etc. Recordings of hypnotic sessions can be replayed to help the client absorb whatever lessons or skills are required in their own time. Hypnosis seems to be most helpful for clients whose pain is entrenched and who need more time to transform pain -maintaining patterns of feeling and thinking.
17. Parts/ego-state work
Although we and our clients like to present ourselves as having one identity, one over-arching self, most of us are made up of a collection of parts or ego-states. These are clumps of feelings thoughts and behaviours - usually some variation of parent-child-adult. Ideally our parts work together to help us meet our physical, emotional, and social needs in an appropriate, balanced way. The child parts tells us when we are feeling scared or need a hug. The adult part hears that and takes appropriate action. Trauma survivors tend to have over-developed survivor parts and limited awareness of their vulnerable parts. In a chronic pain sufferer this might take the form of being over-invested in appearing strong (adult part) at the expense of emotional needs (child part). This means living in a permanent state of alert and eventually leads to exhaustion and ill-health. Parts work is about helping the client develop a healthier relationship between their parts leading to greater integration and wholeness. Through learning to listen to their child part the individual becomes more self-compassionate and self-caring, leading to reduced tension and increased capacity for healing. In many cases no amount of relaxation, pain management, self-care advice, cognitive re-structuring, even EMDR, will be effective unless it is supplemented with parts/ego-state work.
18. Somatic psychology
Somatic psychology reminds us of the need to help our clients be present to what they are experiencing in their bodies and allow emotional responses to complete. As Bessel Van Der Kolk says, “the two most important phrases in therapy are “Notice that” and “What happens next?” Once you start approaching your body with curiosity rather than with fear, everything shifts.” Its so easy to get beguiled by our client’s words and stay in talk-therapy mode. We need to constantly check-in with our bodies and those of our clients to ensure that we are working in a grounded space. Of course, this needs to be done sensitively and based on the client’s readiness and needs. There are many times when clients need to avoid what they are feeling in their bodies until they have sufficient safety and confidence to encounter their feelings. But so many times when I have been stuck in therapy, just asking to client to notice what is going on in their body has gotten things moving again.
19. There are limits regarding what the human body can manage.
Even with the best treatment, complete pain relief may not be possible. People who have suffered pain for many years, whose innate energy (force) is spent, may just not have the necessary resources to heal from pain. But if the client can be assisted to cope better, live without the pain being “centre-stage,” and feel less defined by their pain, then something of value has been achieved.
At this point you (the therapist) also need to accept your own limitations, whilst holding that tension between feeling like you weren’t good enough vs wanting to know more and wondering if that would have made a difference. On the day you did the best you could with what you had. There’s always more to learn!
20. How rewarding helping people who are suffering can be.
Regardless of what changes you can help the client achieve; it is always an honour to sit with someone who is suffering. To lighten the load of someone who is suffering, even if all you may have left to give is your concern, is the greatest thing you can do as a human being and I have always found this humbling and rewarding. As Carl Rogers used to say,
“In my early professional years I was asking the question: How can I treat, or cure, or change this person? Now I would phrase the question in this way: How can I provide a relationship which this person may use for his own personal growth?”
Duckworth, Melanie P., Iezzi, Tony, Archibald, Yvonne, Haertlein, Patricia & Klinck, Ann. (2000) Dissociation and Posttraumatic Stress Symptoms in patients with Chronic pain. International Journal of Rehabilitation and health. 5(2), 129-139.
Elofsson UO, von Scheele B, Theorell T, Sondergaard HP. (2007) Physiological correlates of eye movement desensitization and reprocessing. Journal of Anxiety Disorders June 3; [Epub ahead of print].
Ellenberger, Henri (1981) The Discovery of the Unconscious. P331-416. Basic Books.
Fishbain David A, Pulikal Aditya, Lewis John E, and Gao Jinrun (2017) Chronic pain types differ in their reported prevalence of post-traumatic stress disorder (PTSD) and there is consistent evidence that chronic pain is associated with PTSD: an evidence-based structured systematic review. Pain Medicine 18: 711-735.
Haley Jay (1993) Uncommon Therapy. Norton.
McWilliams LA Cox BJ Enns MW(2003). Mood and anxiety disorders associated with chronic pain: an examination in a nationally representative sample. Pain 106; 127-133.
Ray, Albert R., & Zbik, Albert (2002). Cognitive Behavioral Therapies and Beyond. In; Tollison, C.David Sattherwaite, John R., & Tollison, Joseph W., (Eds). Practical Pain Management. P 189 – 207. Philadelphia, Lippincott Williams & Wilkins
Scaer, Robert C (2001) The Body Bears the Burden. The Hawthorne Medical Press.
van der Kolk, Bessel A (2015) The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma. Penguin.