Chronic Illn. 2012 Jun 1. [Epub ahead of print]
Coping with chronic complex regional pain syndrome: advice from patients for patients.
Rodham K, McCabe C, Pilkington M, Regan L.
Department of Psychology, University of Bath, Bath, UK.
To explore what advice people currently living with chronic complex regional pain syndrome would offer to another person coming to terms with a diagnosis of chronic complex regional pain syndrome.
Semi-structured interviews with 21 adults (5 male) living with chronic complex regional pain syndrome who had completed a complex regional pain syndrome rehabilitation programme were conducted.
Effectively self-managing complex regional pain syndrome required individuals to play an active role. This could only be achieved if they felt they had sufficient control. Means of attaining control involved attaining a level of acceptance, becoming well-informed and accessing the right kind of support. The advice offered by patients for patients largely reflected that offered by healthcare professionals. One area where there was a conflict concerned sleep hygiene.
Our study provides support both for the argument put forward by Redman that without appropriate preparation and support, self-management is ineffective, and that by Skuladottir and Hallsdottir that the main challenge of the chronic pain trajectory is that of retaining a sense of control. The clinical implications of this are discussed.
RS: To play an active role one needs to understand CRPS and have a deeper knowledge of the condition. Developing skills to deal with the condition is vital. This requires training, support and motivation like any other learning experience. My treatment programmes start with this phase alongside other aspects and themes.
Musculoskeletal Care. 2011 Jun 12. doi: 10.1002/msc.211. [Epub ahead of print]
An Exploration of the Support Person’s Perceptions and Experiences of Complex Regional Pain Syndrome and the Rehabilitation Process.
Lauder A, McCabe CS, Rodham K, Norris E.
University of Plymouth, Plymouth, UK.
We explored the perceptions and experiences of those who support a relative or friend with complex regional pain syndrome (CRPS), a chronic pain condition of unknown aetiology usually affecting a single limb. Semi-structured interviews were analysed using interpretative phenomenological analysis, and four superordinate themes are presented here. These themes describe the efforts of carers to make sense of CRPS and the rehabilitation process, to be sensitive to the discomfort of the person with CRPS and to respond in an attuned and helpful way. CRPS had become integrated into the carers’ lives as they sought to monitor, protect and motivate the person they supported. The themes are discussed in relation to each other and to extant literature, including work on social support and adjustment to chronic illness, and the clinical implications are explored.
J Adv Nurs. 2006 Aug;55(4):457-64.
Acceptance and denial: implications for people adapting to chronic illness: literature review.
Telford K, Kralik D, Koch T.
School of Nursing and Midwifery, University of South Australia, Glenside, South Australia, Australia.
This paper reports an exploration of the terms acceptance and denial by exploring the literature, with the aim of understanding the implications of using these concepts to categorize people’s responses to living with chronic illness.
People learning to live with a chronic illness or condition may be judged and labelled by others as being in denial, particularly when they do not adhere to prescribed treatment regimes.
A literature search for the period between 1989 and 2003 was conducted using the electronic databases Medline, CINAHL, PSYCArticles, Health Source Nursing/Academic Edition, Academic Search Elite and Sociological Abstracts. Key terms used were ‘acceptance and denial’ and variations of such themes as ‘chronic illness’, ‘disability’, ‘adjustment’, ‘illness discourse’, ‘medical discourse’, ‘illness experience’, ‘labelling’, ‘self’ and ‘identity’.
The theoretical background of the common constructs ‘acceptance and denial’ are discussed using the psychoanalytic theories of Freud and Kubler-Ross’s work on death and dying. Healthcare professionals and lay people commonly refer to the terms acceptance and denial when describing a person’s response to chronic illness. Those whose understanding of the illness experience relies on the acceptance-denial framework may not listen when people with chronic illness attempt to tell their own unique story of how they have experienced life with illness. Instead, their listening antennae may be focused on fitting aspects of the experience with stages of adjustment. When others use labels of acceptance and denial, people who are learning to live with a chronic illness may internalize these labels as reflections of the self. This may be most likely when the person using the label is perceived to have authority, such as a healthcare professional. The internalization of negative information associated with these labels may obstruct the reshaping of self-identity that is fundamental when making a transition to living well with chronic illness.
Healthcare professionals are urged to challenge the stage model of adjustment as a way of understanding the response to illness and to listen instead to the stories people tell. They are encouraged to privilege the person’s experience as the basis for developing a sensitive, client-focussed response that takes into account the wider social context of people’s lives as well as the medical aspects.
Physiother Can. 2011 Summer;63(3):305-14. Epub 2011 Aug 10.
Interactions between Pain and the Motor Cortex: Insights from Research on Phantom Limb Pain and Complex Regional Pain Syndrome.
Mercier C, Léonard G.
Catherine Mercier, OT, PhD: Centre interdisciplinaire de recherche en réadaptation et en intégration sociale (CIRRIS) and Département de réadaptation, Université Laval, Quebec.
Purpose: Pain is a significantly disabling problem that often interacts with other deficits during the rehabilitation process. The aim of this paper is to review evidence of interactions between pain and the motor cortex in order to attempt to answer the following questions: (1) Does acute pain interfere with motor-cortex activity. (2) Does chronic pain interfere with motor-cortex activity, and, conversely, does motor-cortex plasticity contribute to chronic pain. (3) Can the induction of motor plasticity by means of motor-cortex stimulation decrease pain. (4) Can motor training result in both motor-cortex reorganization and pain relief.
Summary of Key Points: Acute experimental pain has been clearly shown to exert an inhibitory influence over the motor cortex, which can interfere with motor learning capacities. Current evidence also suggests a relationship between chronic pain and motor-cortex reorganization, but it is still unclear whether one causes the other. However, there is growing evidence that interventions aimed at normalizing motor-cortex organization can lead to pain relief.
Conclusions: Interactions between pain and the motor cortex are complex, and more studies are needed to understand these interactions in our patients, as well as to develop optimal rehabilitative strategies.