Fibromyalgia (FM) is a condition surrounded by much controversy in what establishes a diagnosis, what are the consistent historical features, and most importantly, what can be done about it – the treatment strategies. Doctors seem polarized, either they “believe in it” or they don’t. The result is a frustrated patient because after multiple attempts, they can’t get a straight answer from their healthcare provider in regards to what’s causing their symptoms and what can be done about it. Consequently, the patient doesn’t know where to turn. A very important article, published in September 2011, discusses the experience of living with this condition from the patient’s point of view.
The study consisted of six female patients diagnosed at a university hospital with FM, which by the way, means all other conditions that create similar symptoms have already been considered and/or “ruled out.” As a background, the authors describe FM as “…a chronic syndrome with no cure.” Because of this, they state, “…a thorough understanding of the illness experience is therefore key in the palliative care of patients…” They acknowledge that care givers of FM patients often include chiropractors and other manual therapists and knowledge of the “…meaning and reality of living with this condition” is reported as being ESSENTIAL for all healthcare providers who manage FM patients. The focus of the study was to carefully look at the personal, occupational, and social impact of the condition on patients’ lives and their views about the future. Structured interviews with each participant were analyzed.
The results showed that FM impacts all aspects of life with theme main themes arising from the data: 1. Personal life impact; 2. Occupational life impact; 3. The forecasted impact on future life; 4. Social interaction impact. Specifically, most of the participants had stopped working and felt useless. Leisure activities were greatly affected, as many described opting to not participate in various leisure-oriented activities (such as going for walks, shopping, or attending social events). In some cases, FM strengthened familial bonds and in other cases, it destroyed families. FM patients were reported to be “relieved” when a diagnosis was “finally” made, as it marked an end to a period of uncertainty. The participants were often ambivalent to interaction and despite some positive points, frustration prevailed from “perceived incomprehension” or not really understanding why they feel the way they do. At times, this made it hard to discuss their symptoms and personal experiences. This study reveals the negative impact of FM and how complex and individual it is for each patient.
What is important about this study is that it alerts those of us who treat FM that we need a more efficient diagnostic process and we need to be better educated so that we can provide a multifaceted treatment option approach as each FM patient’s needs vary because of how each patient “deals with” the condition. We need to really listen to the patient to determine what treatment goals they are interested in and we must create treatment plans that center around those needs and desires, possibly including checklists so everyone stays on task as it’s quite easy to become distracted by the symptoms of FM.