Patients with Fibromyalgia, Cognitive Dysfunction Report Significantly Reduced Quality of Life

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Patients with fibromyalgia and cognitive dysfunction report feeling a loss of identify and impaired social interaction.

Patients with Fibromyalgia, Cognitive Dysfunction Report Significantly Reduced Quality of Life

Diane L LaChapelle, PhD

Credit: University of New Brunswick

An analysis of online peer support groups for patients with fibromyalgia revealed themes related to understanding, distrust, decision-making challenges, societal misunderstanding, and the broader impacts on social interaction and identity regarding cognitive dysfunction. These findings emphasize the significant negative impact of cognitive dysfunction on quality of life in this patient population, according to a study published in Journal of Patient Experience.1

Most patients with fibromyalgia report experiencing cognitive dysfunction, also known as “fibrofog,” which impacts verbal fluency, concentration, processing speed, set-shifting, inhibitory control, and short- and long-term memory.2

“Although objective test findings verifying fibromyalgia-related cognitive dysfunction have helped legitimize cognitive complaints among this often-stigmatized population, they do not convey how patients experience the realities of life with cognitive dysfunction,” wrote Diane L LaChapelle, PhD, a professor of psychology at the University of New Brunswick, Canada, and colleagues. “This lack of understanding may contribute to the disparity found between clinicians’ and patients’ treatment priorities, such that cognitive dysfunction is often regarded as a low priority by clinicians, despite being considered a top priority by patients.”

To better understand how patients with fibromyalgia experience cognitive dysfunction, investigators identified posts referencing cognitive symptoms within 2 Facebook fibromyalgia peer support groups at 2 timepoints, exactly 2 years apart. Key discussion themes were established and compared across both time and groups using inductive Thematic Analysis.

Although 1 group discussed cognitive dysfunction more frequently, due in part to a larger membership, the content of the discussions were comparable between groups. Through these online forums, patients explained how cognitive dysfunction significantly and negatively impacted their quality of life, which may indicate these specific symptoms may play a more critical role in the experience of a person living with fibromyalgia.

Results of the analysis identified 4 themes among patients in the online support groups: understanding and describing their cognitive dysfunction experiences, their distrust of cognitive abilities, having to choose between pain and medication side effects, and a feeling of misunderstanding and judgement from others.

Regarding the impact of this symptom on daily life, patients with fibromyalgia reported a loss of identify and impaired social interaction. In terms of social interaction, they pointed to difficulties following conversations, as well as issues with speech production, word recall, and comprehension which limited their ability to maintain conversations and led to feelings of overwhelm. They also described losing their ability to work due to their symptoms, being unable to engage in once-loved hobbies, and feeling fear and despair when experiencing moments of forgetfulness.

Investigators noted that, while the use of a non-interactive, observational study design helped to minimize the potential influence of socially desirable responding, it hindered the collection of demographic information and follow-up inquiry. Future research should focus on assessing the impact of cognitive dysfunction on other sex and gender identities, as patients were predominantly female, therefore reducing the generalizability of the findings. Additionally, as the evaluation of the impact of this symptom on other identities, such as culture and race, were beyond the scope of the research, additional studies examining these identities could help to broaden the understanding of these experiences.

“Based on these findings, health providers are encouraged to discuss cognitive dysfunction symptoms with patients to help understand and prioritize treatment targets and accommodate cognitive difficulties,” investigators concluded. “Focused treatment of cognitive dysfunction may be vital for coping with fibromyalgia and its’ associated symptoms.”

References

  1. Millar KA, Crump L, LaChapelle DL. Lived Experiences of Cognitive Dysfunction in Fibromyalgia: How Patients Discuss Their Experiences and Suggestions for Patient Education. J Patient Exp. 2024;11:23743735241229385. Published 2024 Feb 6. doi:10.1177/23743735241229385
  2. Bell T, Trost Z, Buelow MT, et al. Meta-analysis of cognitive performance in fibromyalgia. J Clin Exp Neuropsychol. 2018;40(7):698-714. doi: 10.1080/13803395.2017.1422699
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