Acceptance of Chronic Neuropathic Pain in Spinal Cord Injured Persons: A Qualitative Approach

Chronic Neuropathic Pain in Spinal Cord Injury 

Chronic neuropathic pain (CNP) in spinal cord injury (SCI) is a significant problem that has physical, functional, and psychosocial repercussions beyond the consequences of the SCI itself. Neuropathic pain is defined as “pain initiated or caused by a primary lesion or dysfunction in the nervous system” (Mersky & Bogduk, 1994, p. 212), and is considered to be one of the most disabling sensory disturbances associated with SCI (Tasker, 2000). The intensity of CNP in some individuals is reported to gradually increase over time and SCI patients may experience more than one type of neuropathic pain in addition to musculoskeletal pain (Jensen et al., 2005, Siddall et al., 2003, Widerstrom-Noga, 2002). The prevalence of CNP as reported in the literature varies owing to the lack of consensus regarding the definitions, terminology, and classification systems used to describe SCI-related pain (Agency for Healthcare Research and Quality [AHRQ], 2001). A review of the literature indicates that the prevalence of CNP in SCI individuals varies from 40% to 75% with 25%-60% of individuals experiencing moderate to severe pain (AHRQ, 2001; Wollaars, Post, van Asbeck, & Brand, 2007).

Studies indicate that CNP negatively affects SCI individuals physically, psychologically, and socially. Spinal cord–injured persons with CNP are reported to have greater functional disability and interference with activities of daily living, decreased mobility, sleep disturbance, and overall poorer self-rated physical and mental health than individuals who do not have CNP (Jensen et al., 2005, Putzke et al., 2000, Rintala et al., 1998, Turner and Cardenas, 1999, Widerstrom-Noga, 2003). Psychologic factors, such as anger, anxiety, and depression, have been shown to correlate significantly with CNP in SCI (Haythornthwaite et al., 2000, Jensen et al., 2005, Widerstrom-Noga et al., 2004, Wollaars et al., 2007).

When efforts to alleviate pain have not been successful, SCI patients are often told that they will need to “learn to live” with the pain. This statement is reflected in studies that explored the concept of “acceptance of pain” in chronic pain patients who suffer primarily from musculoskeletal pain. Acceptance of pain as defined by McCracken (1998) entails “giving up the struggle with unyielding pain and learning to live a better life” (p. 22) despite having chronic pain. Acceptance of CNP in SCI may be a realistic alternative to prolonged suffering and increased disability when pain eradication is unattainable.

The Clinical Challenge 

One author (P.H.), a clinician at a rehabilitation center, observed the negative physical and psychosocial effects of CNP on the lives of community-living SCI individuals. The many phone contacts and clinic visits that related to unrelieved CNP led to an increased awareness that SCI individuals have difficulty coping with their pain despite the use of commonly prescribed medications and treatments. To better understand the effects of CNP, a series of focus groups were conducted with community-living SCI individuals. The effects of CNP were explored regarding physical, emotional, psychosocial, environmental, informational, practical, and spiritual domains to identify effective and ineffective pain coping strategies (Henwood & Ellis, 2004). “Learning to live with the pain” emerged as a dominant theme and appeared to be related to “acceptance” of pain, which in turn seemed to facilitate adjustment. Further research was warranted to better understand how SCI persons learned to live with CNP and how this related to acceptance of pain.

The present research was exploratory and designed to provide insight into the experience and context of SCI individuals who live with CNP and have attained some degree of acceptance of their pain. A grounded theory approach was used to enable the researcher to understand the phenomenon of CNP and to construct a substantive theory that would explain, for this group of participants, their experience of acceptance and living with CNP. There is little theoretical development in this area, and grounded theory is a method that enables the researcher to develop inductive theory derived from the data (Corbin & Strauss, 2008).

Method 

Results 

Developing Theory Overview 

The theory to describe the process of acceptance of CNP in SCI individuals was developed around the basic social process of “moving forward with pain.” Moving forward with pain was evident in each of the six major categories: 1) “comprehending the perplexity of CNP”; 2) “seeking pain resolution”; 3) “acknowledging pain permanence”; 4) “redefining core values”; 5) “learning to live with the pain”; and; 6) “integrating pain.” The framework is best described in terms of a wheel (Fig. 1). The six segments within the wheel represent each of the six phases of acceptance of pain. The SCI individuals typically advanced through the six phases in a sequential fashion. They moved forward gradually through each phase as they gained experience in living with CNP. Overlap between the phases occurred as the cognitive, emotional, and behavioral adjustments characteristic of each phase were adopted. The dotted lines that separate each phase in the figure illustrate the periodic setbacks to an earlier phase that can occur in response to an increase in pain severity. As the necessary adjustments were made over time, these SCI participants continued to move forward toward acceptance of CNP. Variation was noted in the time span required to pass through each phase.

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Figure 1 The process of moving forward with chronic neuropathic pain in spinal cord–injured individuals.

Two processes, “increasing independence” and “evolving pain view,” that were integral to “moving forward” through each phase, are represented in the figure by the area between the two outer concentric circles. The following findings describe each phase and the associated adjustments undertaken during the process of “acceptance of CNP” as based on information obtained from the participants.

Comprehending the Perplexity of CNP 

Initially the SCI individuals did not associate CNP with their SCI and often appeared to question on an existential level the “why” of overwhelming pain when they were already burdened with functional limitations related to their SCI. One participant noted: “I couldn't deal with the pain. I found it too hard to take … I was disabled plus I had to suffer through this pain.”

The particular quality of the pain sensations and the unpredictable nature of CNP affected the physical and psychosocial well-being of the SCI individuals. Chronic neuropathic pain was often expressed by means of metaphor, such as “like you go skating in the winter and your skates are too tight,” “like someone putting a cigarette out on your bones,” or “it feels like somebody's pulling my toenails off.” Although there were predictable patterns of pain, i.e., pain increasing throughout the day and following activity, within that pattern unpredictable spikes in pain intensity could also occur. The triggers of increased pain were often inexplicable. These elusive triggers represented an enigma that contributed to inner conflict.

Seeking Pain Resolution 

Throughout this phase, SCI individuals' attention, time, and energy were expended in actively pursuing a means to alleviate their suffering while struggling to cope. The driving force behind seeking pain resolution was the commonly held belief that a cure for CNP was achievable. Typically, these participants became engaged in a cyclic process of starting and stopping medications commonly prescribed for neuropathic pain. Each medication was tried for a period of weeks to months and the dosage was adjusted to achieve the maximum effect. Despite the dosage increase, pain relief was inadequate and the presence of unacceptable side effects often led to the decision to stop the medication and proceed to the next available option. However, each successive effort to find a specific medication to control CNP resulted in increasing frustration. Each person eventually reached their own limit as to how far and how long they would continue their search. During this often-lengthy phase, SCI persons perceived their pain as being a “disabling factor” that intruded on their daily lives, a factor over which they had no control. One participant described his experience with medications:

I tried this one, that one. It didn't work, it didn't work, it didn't work … then I just thought, well no problem there doctor. Just reach to the right or to the left on the medical shelf and grab me the next drug.… And that's when I found out that there aren't as many pills out there as we would like to believe.

When the hope of pain relief through medications was exhausted, several participants turned to alternative treatments. While these treatments may have provided partial and temporary pain relief, the costs in terms of time, energy, money, and the potential for treatment-induced pain were often judged to be unacceptable. As such, these strategies were frequently abandoned.

Acknowledging Pain Permanence 

During a prolonged phase of “seeking pain resolution,” the SCI individuals gradually came to recognize the permanence of CNP, the futility of continued pursuit of a pain cure, and the need to “learn to deal with it.” Awareness of this fact signified a turning point in the process of acceptance, because it reflected the initiation of behavioural change. Because the resolution of pain was no longer an expectation, the behaviors aimed at seeking pain resolution decreased. Acknowledging pain permanence is reflected in this quote: “And then I finally said to myself, nothing's going to work. I might as well try to live with it, and learn to live with it, and since then I haven't tried pursuing any type of pain relief.” As the SCI individuals acknowledged the permanence of CNP, they proceeded to the fourth phase of acceptance of CNP, “redefining core values.”

Redefining Core Values 

Redefining core values involved a cognitive process of introspection and self-talk whereby the relative importance that pain played in their lives and future life aspirations were considered. The determination of core values in life coupled with the acknowledgement that they had no control over their pain led to an attitudinal shift to “move forward” in life despite having CNP. However, the decision to stop seeking pain resolution was difficult because they recognized that they alone must learn to live with the pain. Uncertainty remained as to how they would cope with CNP while attaining their life goals. During this phase, CNP continued to be viewed as a “disabling” factor. The following quote reflects the questioning of core values while coping with CNP:

I had these burning sensations, I was saying to myself, “geez, is it worth it for me to go to school and try to learn all this stuff while I'm having burning sensations. Am I going to have this for the rest of my life? … Am I going to live with it or am I going to dwell on it, and … just dwell on the pain and the pain and the pain, the constant pain.” Then I decided for myself, no, I'm going to change my attitude and then go on, do my studying, do my learning, and then forget about the pain.

Learning to Live with the Pain 

Learning to live with CNP was a prolonged phase perceived to be a challenging undertaking requiring a firmness of resolve that transcends the negative impact of pain. Just as one struggles to overcome the limitations of disability associated with SCI, one applies considerable effort and willpower in learning to live with CNP. Learning to live with CNP involved a process whereby one's cognitive, emotional, and behavioral approach to coping with pain was modified. Indeed, a symbiotic relationship seemed to exist between learning to live with the pain and acceptance of pain. “It's like a coin with two sides [acceptance and learning]. One depends on the other.” Another participant shared the belief that learning to live with CNP involves a gradual process that unfolds with experience as “you take it step by step and accept it step by step.” Learning to live with the pain and subsequently acceptance of pain was realized by the participants as they “moved forward” through a series of adjustments as described in the following subprocesses: “devaluing pain,” “learning one's functional limitations,” “setting and achieving goals,” “maximizing function,” “mind-body connection,” and “adopting pain management strategies.”

Integrating Pain 

The final phase of acceptance involved integrating pain into daily life through the application of each individual's “tool bag” of pain management strategies. This expertise enabled the SCI individuals to rebuild an active lifestyle, a key factor that supported greater coping and acceptance of their pain. It was at this point that pain merged with one's self-identity such that CNP became “part of what you are.” The following quote reflects the notion of the expert coping with pain:

After a while you get accustomed doing battle. You become kind of like an old soldier. … The new soldier will want to get specific directions at all times. An old soldier can cope without having to be directed at all times. … After a while you get to that point where your mind works in a way where it serves you well.”

Discussion 

The rich data obtained from these SCI participants portrays a process that is reflected in the concept of “acceptance of CNP.” As described by these participants, it is a complex process involving a series of cognitive, emotional and behavioral adaptations that unfold within six phases. During these phases, the SCI individuals were continuously pushing forward in their efforts to deal with their pain while striving to regain an active life. Two driving forces, “increasing independence” and “evolving pain view,” were noted to move the process of acceptance forward.

Support for the concepts in the proposed framework can be found in the literature of chronic pain and adaptation to disability. The evolving theory components that describe the process of acceptance of CNP in SCI individuals are similar in a number of ways to concepts that describe acceptance of pain in chronic pain patients; however, differences are also apparent.

The use of metaphor, including words typically associated with violence, was common, because descriptors used for other types of pain were viewed to be inadequate for conveying the magnitude of suffering. The particular features of CNP regarding its quality, unpredictability, and variable intensity were common among these participants and represented an enigma that was difficult for the SCI individuals to interpret. Initially, the SCI individuals were trying to understand why they had pain in addition to the disability caused by the SCI. The absence of an apparent source of CNP coupled with its unpredictable nature was perplexing and resulted in cognitive and emotional turmoil.

Although “seeking pain resolution” is a common characteristic of the chronic pain experience (De Vlieger et al., 2006, Warms et al., 2002), total and permanent pain relief is rarely attained, and for patients with SCI there is evidence that pain may increase over time (Jensen et al., 2005). Persistence in changing an inherently resistant condition such as chronic pain can result in greater physical impairment and emotional suffering that reinforces a focus on pain, impeding adjustment and the pursuit of alternative positive life experiences and goals (McCracken, 1998, McCracken and Samuel, 2007). The physical and emotional suffering attributed to CNP set in motion vigorous efforts to eradicate the pain based on the commonly held belief that chronic pain is resolvable. Among the present SCI participants, seeking a cure for CNP was not only viewed to be feasible, but also, in some cases, considered to be a responsibility in terms of “fixing” oneself. Although behavior involved in “seeking pain resolution” is viewed to be contrary to the notion of acceptance, the findings in the present study suggest that this phase may be a necessary component in the process of acceptance of CNP. Through a process of trial and error, the SCI individuals eventually came to recognize that their efforts to entirely resolve their pain were ineffectual.

Although the process of acceptance of pain in chronic pain patients is reported to involve the determination of realistic activities and personally relevant goals (Geiser, 1992, Hayes et al., 2006, McCracken and Samuel, 2007), there is limited information in the pain literature about specific behaviors that facilitate the process of acceptance in SCI individuals. “Acknowledging pain permanence” emerged as a key phase in the process of acceptance of CNP in the present SCI individuals. The realization that it may not be “worth it” to continue the pursuit of pain resolution set the stage for accepting the need to live with CNP.

The notion of “redefining core values” appears to be similar to a cognitive process that facilitates adaptation to chronic illness and disability (Antonak and Livneh, 1991, Livneh and Antonak, 1997). It also shares characteristics with the construct of “values-based action” as described by Hayes in the “acceptance and commitment therapy” model of chronic pain treatment (Hayes et al., 2006, Hayes et al., 1999). Changes in acceptance and values-based action, such that individuals give up the struggle to avoid pain, and painful activities, are associated with improvements in functioning (Vowles & McCracken, 2008). The values-based action process for these individuals with chronic pain is a values clarification and a process of moving forward in spite of the pain (Vowles & McCracken).

In the present study, a reevaluation of life values and priorities and a search for new meaning and goals were elements of acceptance. For the SCI individuals, “redefining core values” was instrumental to moving forward with pain. As efforts to disengage from the pursuit of pain control took place, the SCI individuals reflected on the importance that pain played in their lives while identifying their personal goals and future potential given the inevitability of CNP. Values such as educational pursuit, rewarding employment, and meaningful relationships were considered.

“Learning to live with the pain” emerged as the most critical and difficult phase in the process of acceptance of CNP. A series of activities described as “reprogramming” occurred during this phase that enabled the SCI individuals to manage their CNP, which in turn enhanced their coping and subsequently their acceptance of the pain. They were able to put pain in “perspective,” which enabled them to cope better with the frustrations and limitations associated with pain. Focusing on ability rather than disability related to pain also helped to foster a greater sense of control over the pain and life. Gradually, the approach to physical activity was also adapted to limit fatigue and exacerbation of pain. The ability to perform cost-benefit analyses developed regarding weighing the positive and negative effects of participation in activities on pain and fatigue.

Conclusions 

The proposed evolving theory suggests a broad understanding of the construct, “acceptance of pain.” The six phases, related adaptations, and integral processes that describe the “process” of acceptance of pain add several new dimensions to the construct that have not been previously described. Given the devastation of CNP, more research to explore the type and timing of interventions to assist patients to cope seems to be essential. The present study lays some of the groundwork for that research.