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Have you ever had an illness that most people don't understand? (lemmy.world)
submitted 2 years ago by to c/asklemmy@lemmy.ml
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[โ€“] 34 points 2 years ago (3 children)

@rip_art_bell Yes I have Fibromyalgia and not many people know about how that works.

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  • [โ€“] 4 points 2 years ago (1 child)

    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.

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  • [โ€“] 4 points 2 years ago

    @Breezy Yes sadly most doctors haven't heard of it and if they have some don't think it's actually a thing. I'm very lucky in having my mum that also has the same condition so it's nice to know i'm not the only one going through things.

    Also no one knows if it is genetic there has been very little research about it let alone in that area. Glad you came to comment hope your mother has learnt to deal with the pains, fog and tiredness.

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  • [โ€“] 3 points 2 years ago (1 child)

    I hear about this condition a lot. May I ask how it manifests?

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  • [โ€“] 5 points 2 years ago (1 child)

    @shinigamiookamiryuu It's really unknown how Fibro forms, to be put simply it's your body sending the wrong signals to your brain telling your body it is in pain (This is only one thing in fibro but a big part of it). Sadly there isn't a easy way to test for Fibro, you have to be tested for many other things before you get to the possible diagnosis but as @xmunk mentioned most doctors don't understand it, some don't even think it is an actual thing.

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  • [โ€“] 2 points 2 years ago (2 children)

    Hypothetically, could dogs be used to diagnose it? I know dogs' smelling ability can detect depression, cancer, and DID. Why not fibro?

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  • [โ€“] 4 points 2 years ago (1 child)

    @shinigamiookamiryuu I wouldn't say you couldn't but is a strange set of symptoms with things such as our pains as it can be effected by stress, mood, weather or even temperature. A dog could be trained to detect it as well as even help with service dogs but that's a lot of money and research. As well as Fibro is very misunderstood as we aren't even sure how it comes about, Trauma maybe, Born with it, possibly.

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  • [โ€“] 3 points 2 years ago (1 child)

    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.

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  • [โ€“] 3 points 2 years ago (1 child)

    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.

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  • [โ€“] 3 points 2 years ago (1 child)

    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).

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  • [โ€“] 4 points 2 years 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.

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