(C) Daily Kos This story was originally published by Daily Kos and is unaltered. . . . . . . . . . . KosAbility: Does "soul crushing fatigue" adequately describe your exhaustion? [1] ['This Content Is Not Subject To Review Daily Kos Staff Prior To Publication.'] Date: 2023-10-29 When fatigue is part of your daily routine due to a chronic health condition, you are likely to discover there are no medical terms that adequately describe your status. A new doctor recently told me to “come back if you start feeling tired all the time.” I’ve been tired for 23 years and have mapped out the various forms it takes, so I wasn’t sure how to respond. I have a good relationship with this new doc, so I chose honesty and answered, “Do you mean sleepy, can’t keep my eyes open or weary, worn out? I feel weary all day everyday regardless of how well I sleep, but I’m not sleepy until nighttime.” He said “all of that and more, lack of stamina, exhausted, no energy.” We agreed that I’d check back with him if my fatigue took on new aspects or intensified significantly, and I came home to dig into how fatigue is reported as a clinical symptom. My online searching brought me similar complaints from long covid patients who are having difficulty communicating with doctors and I realized that a mass disabling event like covid greatly increases the need for an analytic, accurate way of documenting the qualities of fatigue people experience. Everyone experiences fatigue from time to time, but the chronic illness version is broader, deeper, and much more overwhelming. I came across a Twitter thread about chronic fatigue in long covid that mirrors the experiences I’ve had and asks similar questions. x Even the word ‘symptom’ to describe the experience seems reductive, as when it hits, it swamps and obliterates any other possible function. 2/8 — Gez Medinger (@gezmedinger) October 18, 2023 In the thread, people suggested new terms for this kind of fatigue, such as the acronym CEASE (Complete Energy And System Exhaustion), and FADE (Fucking Awful Depletion & Exhaustion). Other suggestions were catastrophic exhaustion, functional paralysis, and soul crushing fatigue, plus this one that sums up the situation and the problem. x I describe it: "I feel like my body and brain are saturated with lead, and I'm trying to move through an ocean of cement." They still hear "fatigue," and think it's sleep apnea or depression. Dr. finally referred me to endocrinology who said "we don't see people for fatigue." — Ruth Langmores Salty Attitude (@AnnieTehworst) October 19, 2023 My first Lyme doc used the term “profound malaise” to describe fatigue common as a Lyme symptom. MedLine defines “malaise” as “a general feeling of discomfort, illness, or lack of well-being.” Then I discovered this 2021 study in the journal Brain, Behavior, and Immunity — Health: Dissecting the fatigue experience: A scoping review of fatigue definitions, dimensions, and measures in non-oncologic medical conditions. The Discussion section identified the “core set of dimensions of fatigue” as physical, cognitive, mental, motivational, and emotional and acknowledged the problem with fatigue as a symptom. Based on the findings of this review, there is no one common definition of fatigue that was identified from the included articles. Of the multiple non-oncologic conditions included in the reviewed articles, each had their own medical condition-specific definition of fatigue. However, there were common terms and phrases used to describe this fatiguing experience. x yeah, fatigue seems to come 'after'; a reaction to something you did ... this exhaustion seems to come 'prior', like its just sitting there waiting no matter what. Just the thought of doing the thing itself is tiring. — lux 𓅃 (@lux) October 25, 2023 Some of the “common terms and phrases” they found were the following, none of which individually or collectively match my personal experience. increased rest propensity; tiredness and lack of energy for more than 3 ​h; lack of energy or reduction related to motivation; reduction in concentration; no desire to do anything; not enough energy for the day; and mentally exhausted. The study authors said this indicates that “the reporting of fatigue symptoms is sensitive to context, and that meaning is driven by individual subjective experiences.” Well duh! x The word ‘fatigue’ plays into the fable that careful pacing, i.e. measuring energy by the spoonful, is the way to alleviate all the symptoms of #ME. This can lead to self-doubt on the part of all ME patients who feel they are failing to pace correctly. How can we ban the F word? — Carole Bruce (@CaroleBruce17) October 26, 2023 However, I came away from this exercise with new appreciation for the difficulty in describing fatigue and increased interest in improving how we communicate it meaningfully to our doctors. Lack of stamina too often results in encouragement to build yourself up by exercising, which isn’t viable for someone who gets debilitating post-exertional malaise. Brain fog may suggest a different underlying cause and treatment than sleepiness. “No desire to do anything” results in a doctor’s referral to a shrink. And WTF, does “increased rest propensity” clarify anything? x Everything is on credit with #MECFS . You think you have energy to spend, but it's only borrowed. You'll pay back with interest. — Faithless (@FaithOxenbridge) October 21, 2023 x Chronic illness teaches you that sometimes you can get accustomed to things you never imagined. — Joanna No Banana (@JoannaNoBanana) October 17, 2023 Tired, sleepy, exhausted, worn out, weary, sluggish, no energy, languor (love this one!), torpor, listlessness, drained, lethargy … what’s your fatigue descriptor? [END] --- [1] Url: https://www.dailykos.com/story/2023/10/29/2200856/-KosAbility-Does-soul-crushing-fatigue-adequately-describe-your-exhaustion Published and (C) by Daily Kos Content appears here under this condition or license: Site content may be used for any purpose without permission unless otherwise specified. via Magical.Fish Gopher News Feeds: gopher://magical.fish/1/feeds/news/dailykos/