Living with Complex Regional Pain Syndrome: Understanding the Battle

Abstract

Living with complex regional pain syndrome (CRPS) can be described as similar to living with any other chronic pain condition, but with extra complications. Many health professionals have never heard of the condition and it is even less known in the general community. There is a diversity of presentations, no objective medical test for diagnosis, and it remains a diagnosis of exclusion based on clinical signs and symptoms. The pathophysiology is not fully understood and there is no dedicated treatment. There are only low-quality data supporting any treatment approach. Although there is no known cure it may go into remission. It may also reappear. The condition may occur spontaneously. Although the mechanisms are not well understood, it can spread to other parts of the body.

This chapter is based on a PhD study entitled “Battling Complex Regional Pain Syndrome: A Phenomenological Study.” The aim is to describe and discuss the meaning of living with CRPS. Using a heuristic hermeneutic phenomenological approach to investigate the phenomenon of living with CRPS, 17 patients and four health professionals from 6 different countries were interviewed. Textual material from internet blogs and a book containing patient stories were also included as data sources. As the first author has been diagnosed with the condition, she was interviewed as well. Serving multiple purposes, the interview transcript was used as data while allowing for explication of preunderstandings and assumptions. This is an important step in phenomenological research. Findings revealed that living with CRPS is a daily battle. Within the battle analogy, readers can recognise aspects of the themes and relate to them on some level. Within this battle, there are many smaller, but important, fights. These fights are the themes which are:

• Dealing with an unknown enemy;

• Building an armoury against a moving target;

• Battles within the war;

• Developing battle plans with allies; and

• Warrior or prisoner of war.

The enemy is CRPS. Patients are the soldiers or warriors fighting it. From fighting for a diagnosis and coping with strange symptoms and disbelief, patients struggle with a condition that has no known cure and constantly changes. They battle against moving a painful body part too much and causing a flare or moving it too little and losing use of it. They face judgement from others, including health professionals, who do not understand CRPS. Support can be difficult to find. Patients must become resilient and must rise to the challenge with a warrior like attitude. Those who don’t may feel like a prisoner of war.

This chapter provides vignettes composed from patient interviews. The vignettes could facilitate a better understanding of lived experiences from the patients’ perspective.

Clinical Implications: Health professionals (HPs) have little understanding of the smaller battles faced by patients living with CRPS and patient goals do not necessarily correlate to those of the HP. It is anticipated that with better understanding of the lived experience, HPs will deliver more empathic patient focussed care. This could result in the clarification of realistic patient goals and needs as opposed to HP expectations of adherence and compliance to therapeutic interventions and could foster more collaborative and supportive self-management strategies for patients.