this post was submitted on 30 Oct 2023
126 points (98.5% liked)

Asklemmy

43194 readers
876 users here now

A loosely moderated place to ask open-ended questions

Search asklemmy ๐Ÿ”

If your post meets the following criteria, it's welcome here!

  1. Open-ended question
  2. Not offensive: at this point, we do not have the bandwidth to moderate overtly political discussions. Assume best intent and be excellent to each other.
  3. Not regarding using or support for Lemmy: context, see the list of support communities and tools for finding communities below
  4. Not ad nauseam inducing: please make sure it is a question that would be new to most members
  5. An actual topic of discussion

Looking for support?

Looking for a community?

~Icon~ ~by~ ~@Double_A@discuss.tchncs.de~

founded 5 years ago
MODERATORS
you are viewing a single comment's thread
view the rest of the comments
[โ€“] SamXavia@kbin.run 34 points 10 months ago (3 children)

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

[โ€“] xmunk@sh.itjust.works 6 points 10 months ago

Even most doctors don't understand it! Sad hooray!

[โ€“] Breezy@lemmy.world 4 points 10 months ago (1 children)

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.

[โ€“] SamXavia@kbin.run 4 points 10 months 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.

[โ€“] shinigamiookamiryuu@lemm.ee 3 points 10 months ago (1 children)

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

[โ€“] SamXavia@kbin.run 5 points 10 months ago (1 children)

@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.

[โ€“] shinigamiookamiryuu@lemm.ee 2 points 10 months 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?

[โ€“] SamXavia@kbin.run 4 points 10 months ago (1 children)

@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.

[โ€“] shinigamiookamiryuu@lemm.ee 3 points 10 months ago (1 children)

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.

[โ€“] SamXavia@kbin.run 3 points 10 months ago

@shinigamiookamiryuu It does have similar things to MS yes

[โ€“] Knusper@feddit.de 3 points 10 months ago (1 children)

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.

[โ€“] shinigamiookamiryuu@lemm.ee 3 points 10 months ago (1 children)

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).

[โ€“] Knusper@feddit.de 4 points 10 months 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.