8 ms·

As someone with long covid (which is probably just nerve damage in my case, but i digress) I have been following long covid and been in the community from day 1

As someone with long covid (which is probably just nerve damage in my case, but i digress) I have been following long covid and been in the community from day 1 (sometime around april 2020 is when the first signs starting cropping up). Anyway, a few notes bullet points: - There are a few different types of LC. The array of symptoms is enormous, and people usually have a random(ish) spattering from a list of 100 things. - People with LC usually have normal everything. Blood work, EKG, spirometery, sleep study, whatever. Everything comes back fine. - The overlap between anxiety symptoms and LC symptoms can be pretty high, to the point where the venn diagram becomes just a circle. It's definitely not anxiety, but at least one hypothesis is that your body kind of gets stuck in anxiety mode, even though mentally you aren't anxious. - There are a lot of mentally unwell people in the LC crowd. Obviously having a terrible chronic condition like this and people not believing you will do you in. But their is a subset of people who do not have LC, but have convinced themselves that they do have it, and will not listen to anyone, especially doctors. - There is tons of distrust in the medical community. People really despise the whole system, and it leads to a lot of venomous encounters where people go to doctors just to yell at them. This isn't as fair as it may seem, since at the end of the day, people are upset doctors aren't curing them, but the truth is that there is no cure. The doctors who normally see patients aren't research doctors. They go by the book. All this makes for a pretty bad experience on the medical side. People who by all objective metrics are fine, but have basically dropped out of life from an invisible chronic illness, who are angry and a bit unhinged, and the medical books have zero information except "psychological".

Animats 4y ago
- People with LC usually have normal everything. Blood work, EKG, spirometery, sleep study, whatever. Everything comes back fine. Not everything.[1][2][3] Brain damage is showing up in MRI scans. [1] https://www.nature.com/articles/s41579-022-00846-2 https://www.nature.com/articles/s41579-022-00846-2 [2] https://neurosciencenews.com/post-covid-brain-21904/ https://neurosciencenews.com/post-covid-brain-21904/ [3] https://nnn.ng/study-finds-altered-brain-function-in-long-covid-patients-with-loss-of-smell/ https://nnn.ng/study-finds-altered-brain-function-in-long-co...
- ljf 4y ago
  Indeed, after long covid my wife showed heart damage too, though later scans showed noticeable improvements from her worst results.
- minsight 4y ago
  I was just about to post that nature.com link. So much is known by researchers that isn't well known in the general public.
- specto 4y ago
  My SO ended up with optic nerve damage. Speaking with the neurologist, they've seen a huge uptick in cases with optic nerve damage in both eyes for older patients which is unheard of previously. When the neurologist spoke with others in the same field at a conference, the same is seen all over the world. I asked if there have been any studies to these findings, and she said no because there's no way to pinpoint covid as the root cause since most everyone has had it.
agumonkey 4y ago
Since covid was said to injure epithelial cells, I'm reading about glycocalix these days, a glycan layer on the edothelial apical surface (facing blood vessel inner space). When it's wiped it causes absorption problems, vascular issues.. could explain chronic fatigue.
ok_dad 4y ago
> The overlap between anxiety symptoms and LC symptoms can be pretty high, to the point where the venn diagram becomes just a circle. It's definitely not anxiety, but at least one hypothesis is that your body kind of gets stuck in anxiety mode, even though mentally you aren't anxious. Whoa, I have joked about LC myself a few times, because I am exhausted all the time but cannot sleep because I'm constantly thinking and "buzzing". I just the other day was thinking, "boy, this sure feels like I've been having a low-grade anxiety attack for like months or years now..." but I passed it off as a stupid thought. Now I am not so sure that I'm not having a low-grade, constant anxiety attack. I have had to medicate (doctor supervised) almost continuously to reduce the effects of the anxiety I feel, and I feel like it's not going away. I have gone through quite a bit of mental health stuff over the past 2 decades, so even being semi-knowledgeable about myself and what anxiety is, I guess I just overlooked these effects for a while. I was doing so great on the mental health front until this pandemic hit! Do you have any groups you follow that I could go read through that might give me some ideas on how to better combat these effects, assuming they're somehow anxiety related?
- thewebcount 4y ago
  I'm not on Facebook, but from talking with friends who have related conditions, that's where everyone is online. You have to be aware that some of these groups promote quackery and others are reasonable. (There are always good intentioned people who don't know whether something is or could be quackery because everyone can't know everything. But the responses will usually tell you whether the group is trustworthy or not.)
seydor 4y ago
interesting. an elderly person got both anxiety symptoms and crippling fatigue a month after covid. she seems to get better with anti-anxiety medications (has no mental issues). we literally scanned everything including brain, blood, abdominals, lungs, neurologic symptoms, everything. It's down to either post-covid fatigue, anxiety or both
WheatMillington 4y ago
So long COVID can have almost any symptoms, is not testable, and has a strong association with anxiety. Do you think it's possible that this is just another Havana syndrome or gulf war syndrome?
- thenerdhead 4y ago
  I believe long covid could be a PTSD type of thing (shell shock, combat fatigue, etc). I've recovered from two long hauls after two infections and as I reflect back, both of those infections were times of great stress (having a new baby, stock market tanking, layoffs, family deaths, etc). The things that have helped me are the controversial ones outlined here. Exercise, CBT, lifestyle changes, and even some alternative ones (nicotine, cold plunges, deep breathing, etc).
- Workaccount2 4y ago
  I'm simplifying in my statement, but generally the way it works is that basic tests give evidence for more involved tests, and those tests evidence for even more involved ones. If all the basics look good, doctors generally don't want to start shooting in the dark with much pricier and time consuming tests. So for example if you have cardiac muscle damage, but it only shows up on a cardiac MRI, it can be very hard to get one when your EKG is normal, and they even went so far as to do an echo, and that came back normal too. There are tons of examples of this in long covid. High end expensive tests may show something, but there is no path there because the book says you need to be showing xyz common with known illness abc before that test is warranted.
slaw 4y ago
[flagged]
- tnel77 4y ago
  I wasn’t aware that there were forced vaccinations. Where was this?
  - slaw 4y ago
    If you don't vaccinate for covid you loose your job was enough to enforce. Limited freedom of movement too.
    - tnel77 4y ago
      The same people who cried about this are usually the ones who tell you to “learn to code,” “just move,” and to “pull yourself up by your bootstraps.” I have a hard time having sympathy for people who are misinformed and make sad choices as a result.
      - yonaguska 4y ago
        Authoritarianism is ok as long as it's only detrimental to people I don't like. Being vaccinated was a sad choice for many. These are real people whose lives have been ruined by an industry who's most important mantra is "do no harm". https://twitter.com/MikeOMara https://twitter.com/MikeOMara This account is actually pretty gut wrenching.
        tnel77 4y ago
        If true, that’s genuinely sad. But it raises the philosophical question: what’s one life compared millions saved? That’s easy to say when you aren’t the one with (alleged) vaccine induced ALS.
        slaw 4y ago
        I didn't save any lives, I had covid 6 months earlier than I had vaccination.
dahwolf 4y ago
"There are a lot of mentally unwell people in the LC crowd" Yep. And they ruin it for everyone to the point that the image now exists that LC is "just an excuse for white middle-aged women to not have to work". Part of a larger problem of obsessive self-diagnosis of mental illness and to wear any imagined outcomes with great pride, as if its some badge or privilege.
- thewebcount 4y ago
  While those people certainly exist, what I've seen is a lot of people who are treated like less-than-human because they have minor differences from the general population. You can even see replies here stating opinions that people with long covid are crazy, or that it's a "them" problem and nobody else should have to lift a finger or change any aspect of their lives for them. They get told that if they're high risk they should just stay inside for the rest of their lives and not interact with the rest of humanity. Meanwhile, when they do go out, they have nut jobs who say the above things to their faces, or in extreme cases try to do things like rip their masks off their faces because someone on TV said that would be a good idea. Point being that they're already marginalized and if they don't publicly display it, they get more marginalized. So yeah, they wear it as a badge (sometimes even literally!) because the general population needs to start seeing them and dealing with them and not just shoving them into a corner and telling them to be quiet and expect to have reasonable accommodations made for them. Even simple things like having a sidewalk that fits a wheelchair is apparently an affront to some people.
  - s1artibartfast 4y ago
    >You can even see replies here stating opinions that people with long covid are crazy, or that it's a "them" problem and nobody else should have to lift a finger or change any aspect of their lives for them To be fair, it is a them problem, as in it is literally their problem. I totally agree that nobody should be treated with hostility, but that doesn't change matters. Why exactly should someone else have to lift a finger or change their lives? They can ask for accommodations, and people can choose to give them. They should not get to unilaterally force and expect compliance. People have problems, but they're not necessarily other people's problems Mini, if not most, people will willingly help others within reason. The second that people in need start demanding help and that others must do as they say, most people will classify them as enemies

Animats 4y ago

- People with LC usually have normal everything. Blood work, EKG, spirometery, sleep study, whatever. Everything comes back fine. Not everything.[1][2][3] Brain damage is showing up in MRI scans. [1] https://www.nature.com/articles/s41579-022-00846-2 https://www.nature.com/articles/s41579-022-00846-2 [2] https://neurosciencenews.com/post-covid-brain-21904/ https://neurosciencenews.com/post-covid-brain-21904/ [3] https://nnn.ng/study-finds-altered-brain-function-in-long-covid-patients-with-loss-of-smell/ https://nnn.ng/study-finds-altered-brain-function-in-long-co...

ljf 4y ago
Indeed, after long covid my wife showed heart damage too, though later scans showed noticeable improvements from her worst results.
minsight 4y ago
I was just about to post that nature.com link. So much is known by researchers that isn't well known in the general public.
specto 4y ago
My SO ended up with optic nerve damage. Speaking with the neurologist, they've seen a huge uptick in cases with optic nerve damage in both eyes for older patients which is unheard of previously. When the neurologist spoke with others in the same field at a conference, the same is seen all over the world. I asked if there have been any studies to these findings, and she said no because there's no way to pinpoint covid as the root cause since most everyone has had it.

agumonkey 4y ago

Since covid was said to injure epithelial cells, I'm reading about glycocalix these days, a glycan layer on the edothelial apical surface (facing blood vessel inner space). When it's wiped it causes absorption problems, vascular issues.. could explain chronic fatigue.

ok_dad 4y ago

> The overlap between anxiety symptoms and LC symptoms can be pretty high, to the point where the venn diagram becomes just a circle. It's definitely not anxiety, but at least one hypothesis is that your body kind of gets stuck in anxiety mode, even though mentally you aren't anxious. Whoa, I have joked about LC myself a few times, because I am exhausted all the time but cannot sleep because I'm constantly thinking and "buzzing". I just the other day was thinking, "boy, this sure feels like I've been having a low-grade anxiety attack for like months or years now..." but I passed it off as a stupid thought. Now I am not so sure that I'm not having a low-grade, constant anxiety attack. I have had to medicate (doctor supervised) almost continuously to reduce the effects of the anxiety I feel, and I feel like it's not going away. I have gone through quite a bit of mental health stuff over the past 2 decades, so even being semi-knowledgeable about myself and what anxiety is, I guess I just overlooked these effects for a while. I was doing so great on the mental health front until this pandemic hit! Do you have any groups you follow that I could go read through that might give me some ideas on how to better combat these effects, assuming they're somehow anxiety related?

thewebcount 4y ago
I'm not on Facebook, but from talking with friends who have related conditions, that's where everyone is online. You have to be aware that some of these groups promote quackery and others are reasonable. (There are always good intentioned people who don't know whether something is or could be quackery because everyone can't know everything. But the responses will usually tell you whether the group is trustworthy or not.)

seydor 4y ago

interesting. an elderly person got both anxiety symptoms and crippling fatigue a month after covid. she seems to get better with anti-anxiety medications (has no mental issues). we literally scanned everything including brain, blood, abdominals, lungs, neurologic symptoms, everything. It's down to either post-covid fatigue, anxiety or both

WheatMillington 4y ago

So long COVID can have almost any symptoms, is not testable, and has a strong association with anxiety. Do you think it's possible that this is just another Havana syndrome or gulf war syndrome?

thenerdhead 4y ago
I believe long covid could be a PTSD type of thing (shell shock, combat fatigue, etc). I've recovered from two long hauls after two infections and as I reflect back, both of those infections were times of great stress (having a new baby, stock market tanking, layoffs, family deaths, etc). The things that have helped me are the controversial ones outlined here. Exercise, CBT, lifestyle changes, and even some alternative ones (nicotine, cold plunges, deep breathing, etc).
Workaccount2 4y ago
I'm simplifying in my statement, but generally the way it works is that basic tests give evidence for more involved tests, and those tests evidence for even more involved ones. If all the basics look good, doctors generally don't want to start shooting in the dark with much pricier and time consuming tests. So for example if you have cardiac muscle damage, but it only shows up on a cardiac MRI, it can be very hard to get one when your EKG is normal, and they even went so far as to do an echo, and that came back normal too. There are tons of examples of this in long covid. High end expensive tests may show something, but there is no path there because the book says you need to be showing xyz common with known illness abc before that test is warranted.

slaw 4y ago

[flagged]

tnel77 4y ago
I wasn’t aware that there were forced vaccinations. Where was this?
- slaw 4y ago
  If you don't vaccinate for covid you loose your job was enough to enforce. Limited freedom of movement too.
  - tnel77 4y ago
    The same people who cried about this are usually the ones who tell you to “learn to code,” “just move,” and to “pull yourself up by your bootstraps.” I have a hard time having sympathy for people who are misinformed and make sad choices as a result.
    - yonaguska 4y ago
      Authoritarianism is ok as long as it's only detrimental to people I don't like. Being vaccinated was a sad choice for many. These are real people whose lives have been ruined by an industry who's most important mantra is "do no harm". https://twitter.com/MikeOMara https://twitter.com/MikeOMara This account is actually pretty gut wrenching.
      - tnel77 4y ago
        If true, that’s genuinely sad. But it raises the philosophical question: what’s one life compared millions saved? That’s easy to say when you aren’t the one with (alleged) vaccine induced ALS.
        slaw 4y ago
        I didn't save any lives, I had covid 6 months earlier than I had vaccination.

dahwolf 4y ago

"There are a lot of mentally unwell people in the LC crowd" Yep. And they ruin it for everyone to the point that the image now exists that LC is "just an excuse for white middle-aged women to not have to work". Part of a larger problem of obsessive self-diagnosis of mental illness and to wear any imagined outcomes with great pride, as if its some badge or privilege.

thewebcount 4y ago
While those people certainly exist, what I've seen is a lot of people who are treated like less-than-human because they have minor differences from the general population. You can even see replies here stating opinions that people with long covid are crazy, or that it's a "them" problem and nobody else should have to lift a finger or change any aspect of their lives for them. They get told that if they're high risk they should just stay inside for the rest of their lives and not interact with the rest of humanity. Meanwhile, when they do go out, they have nut jobs who say the above things to their faces, or in extreme cases try to do things like rip their masks off their faces because someone on TV said that would be a good idea. Point being that they're already marginalized and if they don't publicly display it, they get more marginalized. So yeah, they wear it as a badge (sometimes even literally!) because the general population needs to start seeing them and dealing with them and not just shoving them into a corner and telling them to be quiet and expect to have reasonable accommodations made for them. Even simple things like having a sidewalk that fits a wheelchair is apparently an affront to some people.
- s1artibartfast 4y ago
  >You can even see replies here stating opinions that people with long covid are crazy, or that it's a "them" problem and nobody else should have to lift a finger or change any aspect of their lives for them To be fair, it is a them problem, as in it is literally their problem. I totally agree that nobody should be treated with hostility, but that doesn't change matters. Why exactly should someone else have to lift a finger or change their lives? They can ask for accommodations, and people can choose to give them. They should not get to unilaterally force and expect compliance. People have problems, but they're not necessarily other people's problems Mini, if not most, people will willingly help others within reason. The second that people in need start demanding help and that others must do as they say, most people will classify them as enemies