Online Survey Reveals Perspectives, Desires for Understanding in Patients with Fibromyalgia

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Thematic analysis revealed common themes, including uncertainty about the cause of fibromyalgia, feelings of invisibility, confusion about symptoms and flares, and a strong desire for more accessible treatment information.

Results of an online survey revealed patients with fibromyalgia reported confusion regarding a variety of aspects of their condition, including the cause and symptoms, as well as a desire for the people in their lives to be more understanding, according to research published in Patient Education and Counseling.1

“Despite prevalence rates up to 2 –8% of the population, fibromyalgia is still often underdiagnosed by medical providers and is poorly understood by many patients with the condition,” wrote lead investigator Lora Black, PhD, psychologist in the Department of Psychiatry & Behavioral Health at The Ohio State University Wexner Medical Center, and colleagues. “Poor patient understanding of their medical condition is associated with worse treatment adherence among those with chronic illnesses, demonstrating the vital need for providing fibromyalgia education as a core component of treatment in addition to medication management, physical activity, pain-focused psychotherapy, sleep hygiene, and general symptom management.”

Although current pain education interventions have been successful in both increasing knowledge and decreasing pain catastrophizing in this patient population, they were developed without patient input and may therefore not fully grasp what is most important and relevant to patients. Additionally, these interventions tend to be more suited for a face-to-face administration, rather than virtually, and demands for self-guided online and virtual interventions have increased in recent years. In order to create and effectively implement these programs, an understanding the patient perspective is crucial.2

To analyze the gaps in knowledge, areas of confusion, and understanding of fibromyalgia, participants were invited to complete an online survey comprised of a number of open-ended questions. These responses were then evaluated using thematic analysis. Eligible patients were recruited using flyers placed in comprehensive spine center clinics and a Facebook page dedicated to a chronic pain research lab.

A total of 38 subjects completed the survey. Most (63%) were female, White (62.2%), and the mean age was 36.1 years (range 18 — 68 years). Diagnosis of fibromyalgia ranged from <1 year to >30 years. Upon analysis, common themes included being unsure of the cause of their fibromyalgia, feelings of invisibility, confusion and frustration regarding the random and variable nature of symptoms and flares, and a desire for more available treatment information and recommendations.

Within these themes, opinions differed. Some patients believed emotional trauma and stress may have caused their condition, while others reported genetics or outside influences, such as chemicals or food, to have triggered their fibromyalgia. Some subjects reported interest in learning about ways to cure fibromyalgia, while others focused on treatment/management options.

Investigators noted several limitations including using a self-reported fibromyalgia diagnosis as opposed to a clinically confirmed one. Additionally, results may not be generalizable to all demographics as the sample was largely female, White, employed, and were living with fibromyalgia between 1 and 10 years. Lastly, the responses were less detailed than what one might expect from more formal qualitative individual interviews or focus groups.

“This study highlights the need for better fibromyalgia education, during both formal educational interventions as well as regular clinical encounters, and provides specific educational targets for future educational interventions,” investigators concluded. “Many participants expressed poor understanding regarding multiple aspects of fibromyalgia and were interested in learning more about areas such as etiology and treatment options. This desire for more information provides natural buy-in for educational interventions.”


  1. Black LL, Black WR, Chadwick A, Christofferson JL, Katz H, Kragenbrink M. Investigation of patients' understanding of fibromyalgia: Results from an online qualitative survey. Patient Educ Couns. Published online January 17, 2024. doi:10.1016/j.pec.2024.108156
  2. A A Heapy, M W Stroud, D M Higgins, J J Sellinger. Tailoring cognitive-behavioral therapy for chronic pain: A case example, J Clin Psycho l 62 (2006 ) 1345 –1354.