Have you ever had an illness that most people don't understand? - eviltoast
    • Breezy@lemmy.world
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      1 year ago

      I was gonna bring this one up, not because i have it, but my mother does. I barely under stood it after it was explained several times. Hardly no one knew what it was when my mother was diagnosed, some of other docters havent had even heard of it according to her.

            • Call me Lenny/Leni@lemm.ee
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              1 year ago

              Based on your particular description here, a part of me wonders if it can be placed on the same spectrum as multiple sclerosis (something I am all too familiar with). If so, it might definitely help it be understood, as what people know about MS seems like it would serve as a good point reference for fibro.

          • Knusper@feddit.de
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            1 year ago

            One theory I’ve heard where fibro comes from, is that the body is always in fight-or-flight mode (for varying reasons), it never properly switches over to rest-and-digest mode for an extended period.

            So, it could be that someone with fibro just smells like someone taking an exam, but like, even in theoretically relaxed situations.

            • Call me Lenny/Leni@lemm.ee
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              1 year ago

              It sounds like a good theory, but according to that theory, where would the pain come from? I don’t think I’ve ever been struggling on certain answers on an exam and suddenly it hits me (excuse the pun, I couldn’t resist).

              • Knusper@feddit.de
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                1 year ago

                I’ve basically only watched one video on this (of someone who’s supposedly medically trained, has fibro themselves and published a book about fibro), so you know, don’t think I’m an expert.

                But well, according to this video, one common cause for pain in people with fibro is muscle tension. She said something like, what’s normally considered dangerous levels of muscle tension, where you’d actively medicate people in a hospital, that’s normal levels for fibros.

                Obviously, you won’t get muscle tension in an exam, except maybe in your writing hand, because you’re not really using your muscles and exams tend to be short enough anyways.

                Another suspected cause is that during fight-or-flight, your body releases testosterone, which inhibits, I believe, oxytocin production, which means your body slows down long-term regenerative processes. So, quickly closing up a bleeding wound is on schedule, but making sure your joints are regenerated before the next fight-or-flight situation, that’s lower priority while you’re supposedly still in a fight-or-flight situation.