Patient Perspectives of Disease Activity, Medications and Substance Use in People with Fibromyalgia, 2022, Khoo et al

Objective: To explore patient perspectives on disease activity and experiences, as well as medication use of a group of fibromyalgia patients attending a single-centre rheumatology public hospital outpatient setting.

Methods: Patients seen in fibromyalgia clinic within a rheumatology unit from July 2016 to December 2019 were posted a voluntary survey with questionnaires pertaining to patient-reported measures of disease impact (FIQR), fatigue (MFI-20) and psychological distress (K10). A free-text section allowed description of disease impact. Patients were also asked to record medication use and comorbidities, which were then compared to the electronic medical records (EMR) of the overall clinic cohort.

Results: Forty-five patients responded to the survey (43/45, 95.6% female; mean age 56.5 years). Respondents had generally severe fibromyalgia (mean FIQR 67.1/100, range 23.7– 92.8), moderate psychological distress (mean K10 27.5/50, range 14– 45) and high fatigue (mean MFI 74.9/100, range 40– 96). Free-text responses generated themes of pervasive disease impact and the necessity of adjusting life around unpredictable symptoms. Almost half reported opioid (21/45, 46.7%) and gabapentinoid (19/45, 42.2%) use. 16/41 (39%) use cannabinoids for their fibromyalgia symptoms. Comparing medication use with survey non-respondents (n=85), there was generally similar representation except for significantly greater NSAID use among survey respondents (33/45, 73.3% vs 22/85, 25.9%, p< 0.001).

Conclusion: For patients living with fibromyalgia in this study, there were high levels of disease activity, psychological distress and fatigue. Patients described the need to accept disease-imposed limitations and life adjustments. Almost half reported opioid use, despite evidence suggesting poor efficacy and possible harm.

Open access, https://www.dovepress.com/patient-p...ance-use-peer-reviewed-fulltext-article-OARRR

 

I don't know what disease activity means, although I have an idea of what they mean here, but it really shows how little attention to details goes into this type of work.

Because medicine failed them. But the framing instead puts the entire responsibility on the patients. Patients wouldn't need to adjust to disabling illness if healthcare hadn't failed them, so this is a direct consequence of that failure.

The model says X. Reality shows Y. X must be true, therefore Y cannot. Shmart. As if people would use those drugs if they weren't effective, a lesser evil.

Honestly this is borderline Tobias Funke in Arrested developed and his inability to hear the subtext in what he says. The patients are telling them everything they need to work with, and still they fail to learn anything because the model says one thing and the model cannot be false, therefore reality is. Evidence-based medicine is abused to deny basic reality.

This is the opposite of science. It's worse than unofficial pseudoscience, because it has power over people.

 

Credit to them for qualitative research, listening to how the illness affects these patients. I am somewhat heartened by this. Except this information is already available and valid if one were to do a review of medical literature. Why repeat it, why not spend the money or brain power (ahem) on genetics, or microRNAs or something with a future?

Of course the more severe your FM is, the more drugs you will try to knock back the pain some. Opioids are more a social construct of a problem though not especially tailored to the unique pain of FM, more of a sledge hammer approach with opioids, too non-specific.

Really someone should tell the respondents to stop taking NSAIDs for fibro pain (unless they have also a rheumatic disease or osteo-arthritis or some other condition warranting this drug type). All the best rheumatologic consensus statements say that NSAIDs are ineffective at best for FM pain. Do zilch.