Coping with chronic complex regional pain syndrome: advice from patients for patients

Abstract

Objective: To explore what advice people currently living with chronic CRPS would offer to another person coming to terms with a diagnosis of chronic CRPS. Methods:Semi-structured interviews with 21 adults (5 male) living with chronic CRPS who had completed a CRPS rehabilitation programme were conducted.Results: Effectively self-managing CRPS 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. Conclusions:Our study provides support both for the argument put forward by Redman 1 that without appropriate preparation and support, self-management is ineffective, and that by Skuladottir and Halldorsdottir 2 that the main challenge of the chronic pain trajectory is that of retaining a sense of control. The clinical implications of this are discussed.

‘What I Really Needed Was the Truth’. Exploring the Information Needs of People with Complex Regional Pain Syndrome

“…Brunner et al () explored patients' actual knowledge of CRPS and found it to be limited, potentially undermining their ability successfully to self‐manage the condition. Another study, with individuals undertaking a specialist CRPS in‐patient programme, identified the importance of patients being able to access high‐quality information to increase their knowledge of their condition, normalize their experience and learn new coping strategies (Rodham et al, ). To the best of the authors' knowledge, no study has explored the information needs of a broader patient group, who may or may not have experienced specialist services.…”

Co-creation of information leaflets to meet the support needs of people living with complex regional pain syndrome (CRPS) through innovative use of wiki technology

“…The intention was to create a companion wiki page that would complement an existing CRPS wiki page [23] created by professionals but lacking the patients' voice, experience and perception of CRPS. Such an information resource would be useful for both people living with CRPS and health professionals who are not likely in the course of their 7 career to encounter many people living with CRPS [24]. Therefore the opportunity to understand CRPS from the perspective of the person living with the condition will be invaluable in enhancing the ability of health professionals to support and normalise the experiences of those patients they do encounter.…”

“…[3][4][5][6][7]. It is clear that CRPS can have a negative impact on the physical, emotional, social and financial aspects of patients' lives [8].…”

“…In addition, patients are faced with the frustration of no longer being able to do the things they used to and can lose their sense of identity. Furthermore, patients have reported that their health professionals lacked knowledge of CRPS and this was a source of considerable frustration [5,7]. Similarly, a study on the carer experience of CRPS demonstrated that carers were disappointed to discover that CRPS was not well known or understood by health professionals [4].…”

“…The internet can give everyone a voice and so it is possible to read authentic first-hand experiences of others who are or who have encountered the trials an individual now faces. Participants in the Rodham et al study [7] talked candidly about their search and desire to find the 'right' kind of information, and although the Internet was considered an untrustworthy place, at the same time it was the resource that was most available to them. If people with the condition are anxious, frightened and misinformed after searching online, it is likely that other groups, such as friends, family and employers may share similar concerns.…”