Lived Experiences of Cognitive Dysfunction in Fibromyalgia: How Patients Discuss Their Experiences and Suggestions for Patient Education 2024 Millar+

Abstract

Cognitive dysfunction (CD) is a common, impairing symptom experienced by persons with fibromyalgia (FM). This study explored how individuals with FM describe their experience of CD in an online peer support environment. Posts referencing cognitive symptoms were extracted from two Facebook FM peer support groups at two timepoints. Using inductive Thematic Analysis, key discussion themes were identified and compared across groups and time.

Four themes represented the way members described their cognitive experiences in FM: understanding and describing CD experiences, distrust of cognitive abilities, choosing between pain and medication side effects, and misunderstanding and judgement from others. Two themes represented the impact of CD on members’ lives: impaired social interaction and loss of identity. Group members described broad impairments in daily functioning that significantly and negatively impacted their quality of life, indicating CD symptoms may play a more prominent role in the FM experience than previously understood. An infographic is included to aid patient education and help facilitate patient-provider discussions of CD symptoms.

Open access, https://journals.sagepub.com/doi/10.1177/23743735241229385

 

"Data Collection

The data used in this study was comprised of relevant excerpts of data from a larger dataset26 (see Crump & LaChapelle, 2022 for full methodological details about data collection) as well as novel data collected using identical methodology two years after the first data collection period. Two time points were included to increase the trustworthiness of identified themes and to determine whether discussion themes changed over time as the membership of the group evolved. Further, given the recent proliferation of research concerning FM-related CD, we were interested in whether knowledge translation efforts have led to changing views among those living with FM. Data collection was undertaken following approval by the authors’ institutional Research Ethics Board.

Given the observational approach used prevented the researchers from obtaining informed consent, careful consideration was given to ethical issues including consent and potential risk to participants to ensure compliance with article 10.3 of the Canadian Tri-Council policy statement on ethical conduct for research involving humans.27 In accordance with Eysenbach and Till's25 guidelines for discerning public versus private groups, each OPSG observed was publicly searchable, had at least 500 members, did not have posted rules to keep discussion content private, and could be accessed by simply clicking “join”. Detailed explication of how this research complied with the five conditions necessary to waive the requirement of informed consent by the Canadian Tri-Council policy is provided in Crump & LaChapelle.26

The Tri-Council policy also requires research exempt from the requirement of consent to demonstrate potential benefit to participants, the population studied, or society in general.27 The authors hope the current study may contribute to a better understanding of the lived experience of CD symptoms in the context of FM both for individuals with FM and health providers."

 

My social interaction over the last 10+ years is probably under a few hours total. I haven't noticed any significant deconditioning during those few times when I do chat with someone.

 

When I became chronically ill in 2008, I continued social interactions -- maintain contacts, attending parties, inviting people over -- for about 6 months. Then I decided that it wasn't my job to socialize when I'm sick. When I recently got back on FB, nobody but a few seem to recognize me, lol. I have no regrets though. Fair-weather interactions don't mean much when you are sick and there are plenty anecdotes of conditions getting worse as the patients tried to maintain normalcy. I understand that people have needs for social contacts and support, but sometimes it's just easier to be sick alone and focus your energy on recovering, especially in a disease that people don't quite understand. If there is such a thing as a deconditioning of cognitive skills from the lack of social interactions, the stress of trying to maintain it could more than negate the benefit.

 

I find this sort of 'research' pretty distasteful. It is basically snooping and snooping with the assumption that at the end of it you know how to 'help' people using an infographic or something.

It may seem sympathetic but then that is part of the self-justification for these people. Do-gooding busy-bodying I fear.

And what exactly is cognitive dysfunction? Goodness only knows.

The 'thematic' methodology also sounds bogus to me - basically it allows researchers to pick the bits they fancy and re-word them as even more as they fancy.

A meme factory really.

 

I thought it was worth looking up the real definition of the term deconditioning for the purpose of this:

Oxford Languages: "the reversal of previous conditioning of a behaviour, especially as a treatment for phobic and other anxiety disorders.

1. "anxiety reactions triggered by specific stimuli may be subject to deconditioning""

Cambridge Dictionary:
"
the process of losing physical strength through being ill, injured, or not active:
Exercise is very important during recovery, for maintaining muscle strength and avoiding deconditioning.
If a back brace is used for too long, it can lead to deconditioning of the muscles that support the back."

Not sure this bloke knows what he is saying. Literally. ?