Living with pain after SCI is very common, albeit incidence and prevalence rates for SCI-related pain vary greatly.12345678 According to a Spinal Cord Injury Rehabilitation Evidence (SCIRE) review, the incidence of post-SCI pain ranges from 11-96%.1 In terms of prevalence, estimates also show a wide range.234 However, some large-scale studies have found similar prevalence rates, ranging from 66-79%.3 For example, in a study conducted from 1993-1996 in four SCI centres in Germany, 66% of the 591 persons with SCI included in the study reported experiencing pain.7 In another large-scale SCI study, this time in Switzerland, the investigators found that 73.5% of the 1549 study participants – persons with SCI living in the community – experienced chronic pain.8 And in a recent systematic literature review and meta-analysis of 17 studies involving 2529 persons with SCI, Burke and colleagues found a prevalence rate of 53% (neuropathic pain) – a rate they considered high.5
""Living with pain after SCI is very common...""
Incidence and prevalence rates differ depending on the study methodology, criteria used for assessing pain as well as the time point when data was collected.123456 To address this issue and to ensure comparability of results, studies should employ a standardised definition and classification of pain.569 Box 1 provides a summary of current definitions and classifications of pain.12391011
Box 1 | SCI and Definitions and Classifications of Pain
While over the years there have been many attempts to define and classify pain, it has been categorised into two forms: nociceptive pain and neuropathic pain.
Nociceptive pain can be musculoskeletal or visceral (deep in the body, usually felt in the abdomen), generally at or above the level of the lesion. It is pain that is caused by damage to the area surrounding nociceptors, that is, a sensory nerve cell specialised for pain. Such pain can involve bone, joints, muscles (both trauma and spasms), kidney function, bowels, sphincter dysfunction, etc.
Neuropathic pain associated with an impairment of the spinal cord is often described as shooting, burning, cutting, crushing or tingling. This class of pain is often caused by a lesion or dysfunction within the nervous system. It may occur above, below or at the level of injury. Neuropathic pain can be further classified as radicular (radiating to the lower extremities along the spinal nerve root) or central (diffuse pain below the level of the injury originating in the central nervous system). Causes may include non-traumatic and traumatic spinal cord injuries.
Information for laypersons on pain following SCI can be found in the library of www.paraforum.ch.
Several proposals for a classification of pain for SCI exist. Among the most frequently mentioned in the literature include the following:
- International Association for the Study of Pain (IASP) classification related to SCI: This is a three-tiered classification. The first tier differentiates between nociceptive and neuropathic pain, while the second tier differentiates between musculoskeletal and visceral pain under the rubric of nociceptive pain and whether the neuropathic pain is experienced above, at, or below the injury level. The third tier identifies the specific body structures and pathology underlying the nociceptive and neuropathic pain experienced.
- Bryce-Ragnarsson SCI Pain Taxonomy: This classification also employs a three-tiered system. The first tier indicates the location of the lesion, i.e. above, at or below the lesion level. The second tier differentiates between nociceptive and neuropathic pain, and the third tier identifies 15 subtypes of pain related to body region and aetiology.
- Pain classification in the International SCI Pain Basic Data Set (ISCIPDS): This instrument contains a section that asks the type of pain experienced. Similar to the IASP and the Bryce-Ragnarsson classifications, the ISCIPDS divides pain into nociceptive and neuropathic pain, and differentiates nociceptive pain into musculoskeletal and visceral pain. However, for pain that cannot be classified as nociceptive or neuropathic, a category called "unknown" is available, and under nociceptive pain, a category “other” is added. Furthermore, unlike the IASP classification, neuropathic pain is differentiated between pain at the lesion level, below the lesion level, and at and below the lesion level. The latter category indicates that the person has pain at and below the lesion level, but is unable to distinguish between the two separate pain experiences.
- Cardenas SCI Pain Taxonomy: This classification divides pain into neurologic and musculoskeletal pain. Neurologic pain is further differentiated into SCI pain (below the lesion where no normal sensation is present), transition zone pain (at the lesion level and unrelated to activity or position), radicular pain (see definition above; related to activity and position), and visceral pain (see definition above; unrelated to activity or position). Musculoskeletal pain is further differentiated into mechanical spine pain (pain in the back or neck that is influenced by activity and position) and overuse pain.
In terms of the characteristics of those who report experiencing pain, studies have also shown that older persons with SCI were more likely to experience pain than younger counterparts. Moreover, a link between pain severity and psychosocial issues, such as financial problems, and the presence of SCI-related complications, such as spasticity, has been found. Interestingly, very few studies have shown any significant correlation between pain and the level and completeness of SCI.156781213
Recognising the factors that are associated with post-SCI is important for pain management. Equally important is knowing how pain impacts on the lives of persons with SCI.
Pain – A Challenge to Daily Living
There seems to consensus in the literature that pain is a major contributor to decreased quality of life of persons with SCI. Pain can significantly interfere with a person's ability to perform daily activities and limit participation in major life areas, such as work and social life.1357121314 For example, in a study by Störmer and colleagues approximately 45% of the 591 study participants reported limitations in daily living due to pain, and approximately 23% indicated that the pain limited their daily routine severely or completely.7 In a more recent study, Widerström-Noga and colleagues found high agreement among the 483 study participants, who indicated that pain often limits their participation in physical and social activities.13
""Pain can significantly interfere with a person's ability to perform daily activities and limit participation in major life areas...""
Moreover, constant or worsening pain has been found to be associated with psychological conditions such as depression, depressive mood or anxiety. However, it unclear whether pain results in increased psychological conditions or vice-versa.{cs19-fin01}356713
Irrespective of the area of daily life that is impacted by pain, the person's strategy for coping with pain influences his or her pain experience and the extent the pain limits daily living, and ultimately impacts his or her quality of life. Adaptive coping has shown to be associated with less pain (or lower probability of experiencing pain).{cs19-fin01}371314 Coping with pain on a daily basis is not only a challenge for persons with SCI but also for health professionals who are involved in the healthcare of persons living with SCI.
Management of Pain
Given that the pain experienced by persons living with SCI is a multi-faceted, bio-psycho-social phenomenon, many SCI experts recommend a comprehensive, multi-modal approach to managing pain following SCI. This can involve both pharmacological interventions and non-pharmacological approaches.1315161718
The most widely employed pharmacological pain management strategies involve antidepressants and anticonvulsants, specifically in treating neuropathic pain experienced by persons with SCI.1{cs19-03-fn3}1315 While there is evidence that specific anticonvulsants, such as gabapentin and pregabalin, improve neuropathic pain post-SCI, antidepressants have shown to be effective in reducing pain only in persons with SCI who are also depressed.131518 It has been suggested that the reduction in pain is more the indirect result of the treatment for depression rather than a direct treatment of the pain itself. Unfortunately, antidepressants are also often associated with side-effects, such as drowsiness or constipation.1 There are other pharmacological substances, such as opioids, that are employed to treat post-SCI pain.13151618 However, describing them would go beyond the scope of this case study.
""...relieving post-SCI pain solely with pharmacological solutions seems inadequate...""
Although the first line of pain management interventions tends to be pharmacological in nature,1 relieving post-SCI pain solely with pharmacological solutions seems inadequate.313151617 Given this, non-pharmacological solutions may be an alternative or rather complementary to pharmacological approaches.
To date there is inconclusive evidence for the effectiveness of non-pharmacological pain management approaches in reducing post-SCI pain.135131718 These approaches can be broken into two broad groups: physical interventions and psychological interventions. Physical interventions include but are not limited to heat therapy and massage, physical therapy, acupuncture, transcranial magnetic stimulation, transcranial electrical stimulation (TENS), and exercise. Regular physical exercise and TENS, for example, have shown to be effective in reducing pain, while acupuncture has reached mixed results depending on the type of acupuncture used. Psychological/behavioural interventions include, among other things, hypnosis, visual imagery, and cognitive behavioural therapy (CBT).1{cs19-03}15161718 CBT, a commonly used psychological/behavioural intervention within a comprehensive pain management programme, aims to help programme participants to develop adaptive coping skills in order to manage pain. CBT together with medication have shown to be an effective short-term treatment of chronic pain in persons with SCI.1 CBT has also been recommended as a complementary therapy within a combination therapy scheme in the Canadian clinical practice guidelines for the management of neuropathic pain.18 In contrast to pharmacological approaches or other non-pharmacological approaches, psychological/behavioural interventions address the impact of psychosocial factors on the pain experience of persons with SCI.31415
""...educating persons with SCI about post-SCI pain and possible treatments seems to be a valuable element in comprehensive pain management...""
Complementary to the aforementioned approaches, educating persons with SCI about post-SCI pain and possible treatments seems to be a valuable element in comprehensive pain management, even if the educational interventions are not primarily intended to reduce pain intensity.13131819 For example, in a study conducted by Norrbrink Budh and colleagues, the study participants (persons with post-SCI neuropathic pain) experienced a decrease in anxiety and depression, improved sleep quality and improved sense of coherence after participating in a 10-week comprehensive pain management programme that included educational sessions on pain mechanisms and pain treatment.19 Furthermore, in another study conducted by Widerström-Noga and colleagues, the majority of study participants viewed education about pain and pain management as a priority, and that inadequate communication of information as a barrier.13 In recognition of the merits of education as an essential element in pain management, the working group that developed the Canadian clinical practice guidelines recommends that education is provided to increase a person's knowledge about post-SCI neuropathic pain, to strengthen self-management skills, and to reduce the fear of pain.18
The management of pain following SCI is the focus of this case study. This case study of Ida describes the challenges she faced and the efforts undertaken in managing neuropathic pain within a comprehensive, multidisciplinary inpatient rehabilitation programme for persons living with SCI.