r/science • u/Potential_Being_7226 PhD | Psychology | Neuroscience • 23h ago
Health Persistent fatigue linked to reduced brain blood flow in people with long COVID
https://theconversation.com/covid-fatigue-linked-to-reduced-brain-blood-flow-2922851.4k
u/Left-Height4925 22h ago
Welp there is another new theory. Hopefully one day they will put all these odds and ends together. Like the theory about a break in the Mitochondrial energy production system that stops the energy creation at the cellular level, leading to the exhaustion.
Also can we change up the nomenclature? If my body is literally too exhausted to move my fingers, it's not 'fatigue'. Fatigue is what I used to feel after a 10 mile mountain hike at 9k+ altitude.
This.. this is exhaustion or debilitation. Even that isn't strong enough. This is unlike anything any normal person will ever feel.
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u/moal09 22h ago
Yeah, it's not just being "tired". I remember being so exhausted with COVID that I couldn't even turn 180 degrees to pick up my phone when I got texted. It was like torture being awake.
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u/Punished_Blubber 20h ago
That’s the same fatigue that you get in depression.
I tell docs I’m not “sleepy” tired per se (although that’s some of that). It’s more like a motivational deficit that is immune to reason.
I know intellectually I’m not supposed to lay in bed all day, but I can’t physically bring myself to get up. I know intellectually I should respond to my wife when she asks a question, but I can’t physically bring myself to activate my vocal chords and formulate a response.
I know literally everything I’m supposed to do in my life. I know how to have a good life, to live healthy, meet my goals, be active socially, but I can’t physically bring myself to do any of it.
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u/Left-Height4925 17h ago
I suffered 5 years of clinical depression in my youth that literally put me to bed for many days and many hours. I completely understand that. This is completely different.
Sitting up for 20 min, when I can, is the equivalent of running flat out for as long. Most days begin with a body/energy check to determine if I can stand up long enough for a shower. Social interactions can cause a crash that puts me flat for days- because even brain energy is energy use. Digesting food is exhausting. My head feels like it weighs 100lb. Which is the weirdest thing.
The easiest thing I can do is type- and frequently have to stop and 'find words' because brain fog wipes them from memory. Doc says that's because the part of our brain than handles social interactions/speaking is different from typing. I mostly type now to communicate with family - right in the same house- because it uses less energy.
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u/wontyoujointhedance 10h ago
I’m slightly less debilitated than you from what it sounds like, but not by much. I think the fact that so many of us are house-bound most of the time makes it so no one really understands just how bad post covid really is. The 100lb head thing is so real. I’ve never felt so weak in my life, and at 32 I’m supposed to be at my “peak” :(
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u/Physicle_Partics 7h ago
This is completely different but as an autistic person, when I'm tired after a long day, talking becomes hard. I think in images, so the conversion from image->word->sounds->muscle movements needed to produce sounds gets muddled up. Often I will toss random words out. If my boyfriend asks me if I have seen his slippers, I might have a crystal clear image of the slippers lying in the kitchen, and then go "uhhh living room, no hallway! Kitchen!"
Writing does not give me the same issue. I think it is because rather than remembering written words as sounds, I remember them as glyphs and correspondingly the image->word glyph->muscle movements needed to type becomes easier.
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u/xinorez1 13h ago
That actually does sound like a blood flow issue. Long before COVID, when I was having a similar issue, I cured myself by taking mega doses of mk4 vitamin k2 after reading that taking several GRAMS at a time improved blood flow for Japanese seniors. I felt that I had nothing left to lose, so I took 10-20+ pills at once and the next day was the first time I had been able to raise myself off of my pillow and out of bed without losing vision in the process in months. I don't know if this will help you but I hope it does...
Incidentally mk4 with vitamin d3 together gave me chest pain and mk7 gave me hemerroids, but the mk4 was the ticket for me!
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u/Altruist4L1fe 5h ago
Make sure you rule out gastroparesis - just saying because you mention eating food being exhausting.
Its caused by the stomach muscles not being able to push food down meaning that the body cant digest food properly - it'll cause severe fatigue, nutrient deficiency, silent reflux that in turn trigger airway inflammation (lung/sinus aspiration) that leads to sleep disorders.
I've had a decades long experience of unexplainable and it looks like this is whats doing it for me. I probably spent decades chasing symptoms and not the root problem.
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u/moal09 20h ago edited 14h ago
I struggled with severe depression for several months in my late teens, and I wouldn't say it's quite the same. It wasn't a motivation issue with COVID. It legit just felt like insane muscle fatigue to where my muscles were super weak and were struggling to complete basic tasks.
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u/A2naturegirl 14h ago
I've had depression for like 30 years and ME/CFS for 9. Depression "tired" is apathy; ME/CFS & long-covid tired feels like permanently being on <10% battery.
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u/Punished_Blubber 19h ago
Ahh interesting. I understand the distinction you’re making here.
With that said, I definitely think my fatigue is psychogenic (“psychomotor retardation”).
I don’t think I’ve experienced the fatigue you described. I’ve had COVID twice and I felt terrible on it, but tbh, I’ve been sicker. I definitely don’t have long COVID either.
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u/PrissyPeachQueen 15h ago
I've had severe depression and Long Covid and they're definitely not in the same ballpark, our language is just limited. Long Covid fatigue is flu-like. Mine came with low-grade fevers, swollen lymph nodes, sore throat, photosensitivity, and muscle pain. That feeling you get when you wake up with the flu, and crawling to the bathroom exhausts you and everything hurts? That's what Long Covid fatigue feels like. I desperately wanted to be active, to participate in life, and I'd attempt to do those things to my own detriment. I physically couldn't.
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u/ImproperUsername 16h ago
Thank you for putting into words my experience in a way I haven’t been able to myself
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u/AnOnlineHandle 10h ago
I suspect a lot of what is diagnosed as depression could actually be other things like the after effects of viruses like this, hence why treatment outcomes are so inconsistent.
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u/Clean_Livlng 16h ago
(ELI5 version) It's like the little person inside your head that presses the buttons and pulls the levers is so fatigued that it takes a lot of effort to pull those levers and get your body moving.
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u/Black_Moons 16h ago
but I can’t physically bring myself to do any of it.
One side politicizes getting vaccinated and wearing masks, causing an illness known even early on to cause brain damage, loss of IQ, exhaustion, etc.
And Americans sit idly by instead of protesting the end of freedom in their country while massive corruption robs them blind...
Hu.... I try not to be a conspiracy theorist but its kinda hard not to be when they are being this blatant about it.
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u/W0nderlandz 16h ago
Yeah, last time I got it was earlier this year. Honestly so fatigued I could barely bother to go the restroom and I almost forgot I had covid. I stayed in bed for 16-20hrs a day for three days straight. Not continuously, but Id try to be up, watch TV or something, and after 30 mins to an hour I would be exhausted and go back to bed.
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u/moal09 15h ago
For me, I was fatigued, but my body didn't actually want to sleep. So I was forced to stay awake
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u/W0nderlandz 15h ago
Same! I definitely think I slept more (like 8-10hrs), but the rest of the time I was just laying in a feverish haze staring at the wall, ceiling, or closing my eyes.
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u/moal09 14h ago
I kinda just stayed awake browsing reddit and stuff on my computer, but in all honesty, I could barely keep my eyes on the screen
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u/Anknara 20h ago
I remember not being able to use my phone because holding it, even when supporting it on my belly, was too tiring.
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u/moal09 20h ago
Such a crazy feeling. It was only 4 days, but it felt like an eternity.
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u/SympathyBetter2359 19h ago
3 years here so far, really hoping it ends some day.
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u/moal09 19h ago
I know that one YouTuber, Physics Girl got it and has had a really rough time.
I think that at least brought more attention to it 'cause she did film some stuff with her SO showing what life has been like for her.
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u/Henry5321 5h ago
I read an article claiming a recent study showed an electrolyte imbalance and the mitochondria showed oxidative stress. Like their cells were perpetually “over trained”.
Mild exercise didn’t just leave them tired, but amplified the oxidative stress and was actively damaging the mitochondria because they looked over worked.
This specific study didn’t come to any conclusions and created more questions and no good hypothesis.
But it showed it wasn’t just feeling tired.
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u/sam_hammich 17h ago
I mean, the definition of fatigue is extreme weariness that is not responsive to rest. Is that not what this is? Fatigue doesn't just mean "tired".
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u/Molag_Balls 15h ago
Definitions are often secondary to colloquial understanding. "Fatigue" when used in common speech doesn't have nearly the same connotation as "debilitation", for example.
When someone hears "I'm fatigued" they don't think "Oh they're so weak they can't even move their fingers". They think "Oh, they're tired."
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u/moal09 14h ago
Exactly this. That's why when some people hear "chronic fatigue syndrome", they just think "Well, I'm tired all the time too, and you don't hear me bitching about it. This person is just lazy."
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u/blueberrywalrus 21h ago edited 21h ago
The nomenclature issue is more that the clinical (and dictionary) definition of fatigue differs from common usage.
Fatigue is when you can't rest/eat/sleep to recover your energy levels.
People treat it like it means "extra tired," but really it's describing a prolonged state of abnormally low energy levels - rather than a particular severity. Although, for low energy levels to be noticeable then the severity is probably moderately high.
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u/Left-Height4925 17h ago
I'm familiar with the clinical definition, unfortunately we are trying to navigate the real world where people say "Oh yea.. I was pretty fatigued after my run yesterday."
For me my body thinks I've run a 5k just from brushing my teeth.
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u/_9a_ 22h ago
It does have a word, just people look at you funny if you use it: "lassitude"
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u/ClaretClarinets 22h ago
Thought that was what you call diagonal lines around the earth.
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u/MmmmMorphine 20h ago
I thought that was a lass giving someone attitude!
Though more seriously, I feel a strong connotation of indifference with 'lassitude' for whatever reason.
Guess I encountered the word in literary context, not medical, since this apparently is a correct use!
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u/pack_of_wolves 22h ago
Its not a new theory. Have seen papers from 10 years ago for ME/CFS.
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u/Krypt0night 20h ago
"Fatigue is what I used to feel after a 10 mile mountain hike at 9k+ altitude."
Eh, I sort of agree, but not fully. Yes, you'll be fatigued after that, but obviously being tired/wiped/exhausted after an insane workout or something like this isn't a negative fatigue, it's expected.
"Persistent" is the real word in the title. If you have "Persistent Fatigue" then it clearly means something is up. You shouldn't be so tired and exhausted if you've done nothing at all, but every day feels like you DID do a 10 mile mountain hike at 9k altitude.
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u/sam_hammich 17h ago
Fatigue is what I used to feel after a 10 mile mountain hike at 9k+ altitude
Respectfully- maybe the way you use it colloquially, but the clinical definition of fatigue is exactly what you're describing.
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u/According_Reward1674 21h ago
Fatigue is still the right word
Being tired after a long hike is not fatigue. It's tiredness.
The definition of fatigue includes the idea that something doesn't get better with rest. Compare to non-human uses. Fatigue on a steel beam weakens the beam, and the beam will never recover after the event that caused the fatigue
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u/ttwwiirrll 19h ago
Yes. Since 2019 I have experienced bouts of pregnancy fatigue, covid fatigue, long covid fatigue, and perimenopausal fatigue.
They are all called "fatigue" but they all feel distinctly and identifiably different. Covid makes the worst of the bunch.
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u/cauliflower_wizard 19h ago
It’s not a “theory”. They’ve found people with Long Covid have less blood flow to the brain. This is an observable, measurable abnormality.
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u/moal09 14h ago
Has there been healing observed with this? Like is it getting better over time for some people?
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u/metigue 19h ago
With my milk allergy when I drink milk I get this... the easiest way to describe it is like I'm moving through treacle and it just feels so difficult to do anything. First couple of times I just lay in bed unable to move. You can sort of get past it when you get used to it but it's like you're so exhausted it's painful. Just really difficult to describe this experience to others.
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u/cigarettesandchocola 18h ago
No dopamine! Microclots! Less blood flow to the brain! So many studies that point to a lot of systems in the body being fucked up by long covid and still there are scammers telling people that its all in their had and they just need to take a special course for a scary amount of money to feel better.
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u/DoubleBatman 20h ago
We could use D&D’s definitions. I would rate being unable to move your fingers at Exhaustion level 5 (Speed = 0)
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u/intrepidsteve 18h ago
You hit the nail on the head.
It’s not fatigue. I have mostly recovered but my memory isn’t what it was beforehand and I need an hour nap every afternoon. Thank god I don’t work in an office I don’t think I’d be able to do a legit 9-5 anymore.
I work 7-3 because by 3 I need that nap. And if I don’t get it my brain feels scummy
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u/PrissyPeachQueen 19h ago
I'm always surprised by how frequently Long Covid comes up on this sub. I was profoundly disabled by it for years (recovered now!) and a number of people in my family and social circles also had similar problems post-covid. But I literally never hear people talk about Long Covid in the real world. Even in very liberal-leaning groups, it doesn't come up. Sometimes if I mention my experience, other people chime in and tell me that their friend/cousin/etc had the same thing.
It's odd that it must be affecting a substantial percentage of the population if it so frequently is brought up here but our society just doesn't talk about it otherwise.
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u/deportallmagas 17h ago
Long COVID isn't talked about because I think the majority of people just don't think it's real, or they haven't heard about it.
It absolutely exists. Fucked my life up pretty badly. Living for years feeling the most tired you've ever been, no motivation, no dopamine, no nothing. Hobbies weren't fun at all, and I still don't enjoy things the same way.
I think it's probably like extended PAWS from opiates. Your brain is rewired after a certain amount of prolonged suffering.
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u/RandoCommentGuy 15h ago
I feel like it's cause there isn't a test for it or a treatment. With say COVID or flu you can do a swab have it tested and get positive or negative result. With Long COVID it just seems to be fatigue and some other symptoms, then they say you may have it. But other diseases and health problems can cause that too, and it can feel like a dismissal when you are told its Long COVID and it's is what it is, which is how my wife felt (not saying we don't believe it's real, but can see how some might not accept it)
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u/deportallmagas 15h ago
Yeah it felt like they were just saying "we have no idea what's wrong with you" when they told me it's likely Long COVID. I didn't follow up at all because I knew that they were just going to have me hydrate, take vitamins, eat well, and sleep well (also didn't have insurance at the time). Maybe there's some medicine they can give out for it, but I doubt it.
We won't know for years and years what's actually going on, if we ever do find out. God damn vague ass illness.
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u/RandoCommentGuy 15h ago
Exactly, Vague describes the issue perfectly. Also, once you are diagnosed, other issues can get overlooked that are unrelated, or at least treatable, but they don't test for unless you keep pushing.
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u/moal09 14h ago
I definitely feel the latter stuff a little. I spent 2-3 months basically feeling like I was suffocating on a daily basis, and even though I've recovered a considerable amount in the 8 months since, I feel like it had some sort of lasting effect on my mind. I can't quite feel happiness to the same degree I used to, and it's like there's always this cloud hanging over me even when I'm doing stuff I enjoy. I wouldn't say I'm severely depressed or anything because I can still smile and laugh and have fun, but it's like there's always this element of grey to the world now -- like some of the color was sucked out of everything.
A large part of me wishes I could just abandon this body and start over in a new, working one. I feel like I'm living life as a broken porcelain doll that someone taped back together. Every problem I've ever had in life always felt fixable before, but this is something different.
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u/cauliflower_wizard 19h ago
Our society has decided Covid is over and have discarded disabled people for their convenience and comfort.
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u/Left-Height4925 17h ago
Most of us are bedridden anyway- how are you going to see people who aren't out there? I am in a large ReCover group thankfully- to share things.
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u/PrissyPeachQueen 19h ago edited 19h ago
I think this is a pretty black-and-white view that doesn't really reflect the average person. Ableism is real, yes, and it is true that disabled people's lives are valued less in a capitalist society. But this ignores that w e were all told that getting vaccinated meant we had nothing to worry about anymore. I'm in the US and the average person here is struggling to pay their bills and is scared of climate change and the rise of fascism. They are not living in convenience and comfort. They've also been discarded by the ruling class and are responding to their circumstances and putting out the most urgent fires first. The pandemic was a bad time for everyone, it makes sense for there to be psychological avoidance.
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u/Redditbrooklyn 18h ago
I think it’s more accurate to say that the governments decided that capitalism needed to keep on doing capitalism. Capitalism never looked out for disabled people to begin with. If you’re a person who is worried about all the things you’ve mentioned, you probably want to believe the fantasy that there’s nothing to worry about with covid anymore. In a lot of places, people can’t afford to take time off work to recover, it would impact their jobs if they tried to mask at work, they can’t afford regular testing, and when you’re already burnt out from everything, you’re just going to give up with this too. It feels a little like how if you ask most young people what their retirement plan is, they’re like “that maybe the planet won’t survive that long?” Because there’s just too many things to manage even when confronted with the science, or with people they know who have become disabled from covid, etc.
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u/moal09 17h ago
It's an odd situation because people were just desperate for things to get back to normal. Meanwhile, COVID is just sort of this ever looming danger now. It's not as fatal because we have multiple vaccinations now at this point, but it still seems to be causing significant permanent damage for some people
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u/cauliflower_wizard 16h ago edited 16h ago
The vaccine was never touted as preventative of transmission. You could always read up on covid research yourself.
The average person is ableist. Most people take their health for granted, most people don’t consider that they are one accident or illness away from being disabled. Most people are not considering disabled people in their day-to-day. People literally forget we exist. We live in a culture that promotes ableism. Hyper-individualism and bootstrap ideology encourage people to show up to work sick, and deprioritise rest.
People choosing not to wear a mask are choosing their comfort over the safety and wellbeing of everyone but especially disabled people.
If you’re worried about the rise of fascism, don’t partake in it. Wear a mask. Protect and consider disabled people.
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u/ChiefChunkEm_ 19h ago
How do you know you’re recovered? What symptoms did you have that you no longer have
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u/PrissyPeachQueen 18h ago
Severe fatigue, flu-like symptoms that got worse with activity, recurrent low grade fevers, tachycardia and hypotension when I stood up, brain fog, hypoglycemic episodes, trigeminal neuralgia, and allergy symptoms whenever I ate most foods.
I consider myself recovered because I can do or eat anything without provoking those symptoms
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u/Fun_Bandicoot8288 17h ago
Damn, you just described my experience to a T.
I’m mostly fully recovered as well!
Rarely I’ll have a flare up.
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u/thesaddestpanda 17h ago
Not the person you're asking but lumbrokinase helped me a lot. The theory is that it dissolves micro-clots from covid.
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u/Rock_on1000 17h ago edited 17h ago
I’ve recovered from it too. After I had been sick for long enough to realize doctors can’t do anything to help, I dove really deep into herbal medicine and supplements so idk what is most responsible for my symptoms improving but cannabis (the whole plant, not just THC) helped tremendously with the GI symptoms and most other physical symptoms.
Although, it definitely hit my digestive system the worst. Even my favorite food tasted off and the smell of almost all food became revolting instead of appetizing. I had very bad nausea, was painfully bloated all day, zero appetite, etc. I could hardly finish 1/4 of my usual food portions without getting more bloated, nauseous, and uncomfortable overall. All of this started affecting my daily life, including sleep, so cannabis especially gave me absolute loads of relief so that I could eat and sleep like a normal person again. The munchies genuinely saved my life lmaoo
Ginger, turmeric, and peppermint also gave me tremendous relief; then at one point I started taking NAC, bromelain, and nattokinase which I think also gave my health a big push in the right direction. Ginkgo biloba and other nootropic type herbs got rid of the brain fog as well.
It goes a lot deeper than that but I’m convinced at least one of those had a role to play in my recovery.
Some of the herbs I was using the most frequently also showed potential efficacy against covid in some studies, and cannabis was one of them. Dandelion and wormwood root were a couple others that I was also using often and benefiting from very much. Google will tell you it doesn’t work and health officials advise against it or the usual “there isn’t enough research to know for certain” but that hasn’t been my experience.
All I’m saying is that, as much cannabis, ginger, turmeric, dandelion, etc. I was taking (it was a LOT)…they were obviously doing something. On top of that, there’s already promising data regarding this too? Which makes even more sense that I was so fortunate to get immediate relief from so many of these herbs.
Obviously, you have to get them from a good source, use them properly, safely, with respect, all that important stuff that goes without saying…I just know that taking the earth’s medicine made life easier for me more and more every day, when I had long covid.
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u/sector9love 15h ago
I have Long Covid and I’m afraid to speak about it outside of safe online spaces…which there aren’t many of these days. You’ll see me masking at doctors appointments and getting dirty looks (yes even from oncologists and their nurses). In case you haven’t noticed lately there’s a lot of ableist dog whistling in the press and on social media.
What a time to survive the plague.
Long Covid stole my entire life from me before I turned 40, my dream job, my relationships, literally everything. I am mostly homebound because of it. I used to be a Netflix executive just a few years before I got sick and now doctors are telling me I won’t ever work again.
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u/nextdoorelephant 19h ago
Curious, what were your long covid symptoms and how did you treat them?
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u/Left-Height4925 17h ago
Got Covid during a move- which is mostly a blur. I never recuperated fully. It got to be spring and I decided to go start digging a large garden, paint interiors, etc. Normal things that I could knock out easily, before. I kept noticing I had to sit down frequently. Things that usually would take hours were taking me days.
Then suddenly one day I was bent over popping a plant in a hole and my head suddenly felt like it weighed 100lbs. Like it 'pulled' my body down and over to the ground. I couldn't move. It was terrifying. Thought I was stroking out. That was when I knew the exhaustion and other symptoms were serious.
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u/moal09 22h ago edited 22h ago
I wonder if this has anything to do with people developing breathing issues post-COVID as well.
I and a bunch of other people have developed varying degrees of seemingly unexplainable breathing problems months or years after. Weirdly enough, I didn't really have any respiratory symptoms when I got it. I just got very very extreme fatigue for 4+ days or so -- to the point where I could barely lift my head or turn around.
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u/srfrosky 22h ago
Isn’t it largely a cardiovascular disease that has significant respiratory symptoms?
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u/goldenbugreaction 22h ago edited 21h ago
Yes. It is a “a vascular disease masquerading as a respiratory one”
https://www.bmj.com/content/392/bmj.s31
It’s a lot like altitude sickness without the shortness of breath (dyspnea). What made it strange wasn’t that people were having trouble getting oxygen into their lungs (usually)—the trouble was not getting that oxygen from the lungs into the blood.
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u/moal09 22h ago edited 17h ago
That second one is interesting. I remember one of the first things I noticed when I started having breathing issues 2 years after COVID was that my body didn't seem to be responding properly to oxygen demands. Like I would go for a run that would normally exhaust me, and I wouldn't feel out of breath at all, as if I hadn't exerted myself whatsoever. I'm not in good shape cardio-wise either, so this was not normal. I also started getting minor heart palpitations about a week before the breathing issues started. I'd never had heart palpitations my entire life. Did a 48 hour holter monitor test to be safe, and nothing out of the ordinary. The palpitations went away once the breathing stuff got really bad.
I told the doctors at the ER about this whole not getting out of breath thing when things started to get bad, but I basically got laughed out of the room. I remember one of the doctors was extremely rude about it and basically told me I should be glad to be in such good shape. I kept trying to explain that I wasn't in good shape, and this was very abnormal for me. It was very disconcerting knowing I should be gasping for air after exerting myself to an extreme degree, but feeling absolutely nothing. You could've asked me to do 100 jumping jacks, and my body would have 0 response other than feeling fatigue in my limbs. Meanwhile at rest, I was struggling to actually get a normal feeling breath.
I also started having very scary instances where I would be lying in bed at night, and it felt like my body kept forgetting to breathe on its own. This slowly got better over many months, but I still don't feel quite right.
I've spent months seeing doctors and a pulmonologist and stuff, and they can't seem to find anything wrong with my lungs other than some minor scarring (never smoked), and some minor blood gas exchange issues, so they just kinda threw up their hands. That's why this stuff about it being cardiovascular in nature is interesting. The way it's lining up with some of my experiences has me wondering.
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u/goldenbugreaction 21h ago
To be fair to the doctors, they probably wouldn’t have even known what to do with that information. It’s understandable why, especially early on in the pandemic, they would want to put hypoxic patients on ventilators. But as I mentioned in the edit, the trouble most people had wasn’t how much oxygen their lungs were getting, it was how much was getting into their blood.
“I also started having very scary instances where I would be lying in bed at night, and it felt like my body kept forgetting to breathe on its own.”
This to me is the most terrifying thing about it: it has to have some neurological mechanism. Hence the disruption of basic nervous system functions like taste and smell.
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u/bewarethefrogperson 20h ago
holy crap, i have the exact same feeling - like my body isn't remembering to breathe in without concious effort! i tried to talk to my doctor about it and she just gave me a puff test for asthma. there's almost a heavyness to my chest, where it feels like my lungs don't want to inflate again.
it's super weird at night, expecially when i'm comparing my breathing rate to that of my partner. I breathe incredibly slowly compared to him now.
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u/snakeproof 14h ago
Do you ever notice when this happens and you need to breathe to catch up that you have to do a deep yawn like breath to feel normal again, like normal breathing doesn't satisfy you?
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u/wontyoujointhedance 10h ago
One neurological mechanism we already know is B12 deficiency. One of the most common autoimmune conditions that Covid triggers is pernicious anemia.
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u/RlOTGRRRL 20h ago
This might be a stupid q, but have you looked into sleep apnea?
Waking up, feeling like you can't breathe, could it be sleep apnea by any chance?
I have a family member who was one of the first people who got covid in Venice, before it shut down. And she also developed new heart palpitations, did the same studies, and no one was able to figure it out.
She did a sleep study too and nothing, so sleep apnea might be irrelevant for you too.
If you're not already in the covid subs, there are lots of great long covid communities with lots of info digging into this mystery.
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u/moal09 20h ago edited 20h ago
I don't think I have apnea. I sleep an uninterrupted 7-9 hours per night, and I don't wake up feeling breathless. I actually wake up feeling pretty okay. I don't snore according to people around me either (although I do grind my teeth apparently). I did have extreme trouble getting to sleep the first month my breathing problems started, but sleep went back to normal-ish by like month 4. The worst part of sleeping nowadays is that lying down with my bed pressing into my back makes it harder to breathe.
The trouble breathing was throughout the day instead, although it's been much better the last few months. My family did mention that they walked in on me sleeping a few times around a month before all the issues started, and I looked kinda grey though, so who knows. My mother specifically told me it looked like I was dead, and she almost woke me up once to check if I was alright.
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u/gerryflap 13h ago
Anecdotal, but I also have long COVID and often feel like breathing just doesn't work as it should and costs way more effort. I'm also quite certain this makes it harder to sleep properly. I had 2 tests for sleep apnea, both were negative. My body probably puts in more effort to breathe, but still manages to keep the flow of oxygen going. But just trying and trying to breathe slowly doesn't really seem stable enough to keep doing.
Doesn't help that my nose also became extremely tight, either due to COVID or perhaps as a reaction to the nose spray (even though I used it properly).
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u/c64cosmin 15h ago
I can totally relate to the "my body forget how to breathe" thing, been manually breathing for a while, it is gone now, but it was debilitating for a while after first infections
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u/ghostsolid 22h ago
I didn’t have breathing issues and now 3 years later starting to experience air hunger.
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u/moal09 22h ago edited 22h ago
I started experiencing the same 2 years after getting it, and it eventually developed into some sort of weird issue where it felt like my inspiratory muscles stopped working properly. I would try to inhale, and I would get air resistance like the muscles that were supposed to help me weren't working right, or my airway had been clamped shut or something. Had this horrible frozen feeling in my chest/abs too along with other weird symptoms like left-sided facial numbness/muscle spasms and vertigo the first week. Blood oxygen never dropped below 97 though.
Took 3-4 months to start getting better, and it's 11 months later now, and though things have improved immensely, I'm still not back to normal. Breathing issues suck. Pain is one thing, but your body struggling for air is like torture.
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u/ghostsolid 22h ago
So sorry you are experiencing this too. I can totally relate. I find that I am always running out of air when talking because it seems my body doesn’t inhale the normal amount unless I think about it. If I am in bed and lay on my stomach I find that I just don’t breathe unless I consciously think to pull air in and even then it feels hard!
Edit: I have wondered if it’s fatigue in the muscles that are used for breathing.
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u/moal09 21h ago edited 21h ago
Yeah, I get out of breath talking now too, which sucks 'cause I used to be such a blabbermouth. It is getting better at least. I'm not as out of breath after talking now as I was even 2-3 months ago.
And yeah, I have the same issue with my body seemingly "forgetting" to breathe sometimes. That has also improved significantly over time though. Whatever's happened to me, my body does seem to be very slowly recovering to some extent. I'm just afraid I'll never go back to normal. The prospect of spending the next 30-40 years of my life with significant breathing issues is like a nightmare.
Your last point is something I've wondered as well. I brought it up to my doctor, but she's not sure.
For the first half year especially, it felt like my diaphragm just wasn't working properly. It's supposed to do 80-90% of the work of breathing by pulling air in through a vacuum effect, but it felt like it wasn't working at all. I would feel so much air resistance just trying to breathe in. Like I had to manually force the air in, which was beyond tiring. That along with that weird frozen/locked up feeling in my chest/abdomen really makes me wonder. It's like all those muscles just got "stuck" or completely exhausted and wouldn't respond to commands very well.
I remember the more I would breathe throughout the day for the first 2 months, the more out of breath I would get. As if those muscles just didn't have the energy to keep going. And when I would cough or sneeze, I would get a lot of pain in my diaphragm area. It's the only time in my entire life where I was actively suicidal and considering some form of MAID. If I hadn't started to improve by month 3-4, I don't know what I would've done.
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u/ghostsolid 21h ago
Its so hard where there are almost no experts that understand this disease and what exactly is happening. Glad you are getting better at least.
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u/ballerina22 20h ago
I've developed the air hunger thing since having covid (and also asthma and POTS). It feels like I can't take in a breath. I'm trying to inhale but I can't move the muscles in my throat and it feels like there's a plug that air can't get around. It gets excruciatingly painful after about the second breath you can't catch and that's when the panic sets in. It's been going on for about 3 years and it's still terrifying every time.
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u/moal09 20h ago
I would maybe get checked for vocal cord dysfunction. It can cause a lot of the issues you're describing. Try also elevating your head during sleep and avoiding meals before 3 hours bed and see if that helps because silent reflux might play a role if that's the case. Reflux from LPR can splash onto your vocal cords and cause them to spasm/close, which creates a feeling of suffocation even though technically enough air is still getting through to keep you alive.
Did you have asthma and POTS before getting COVID?
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u/ballerina22 19h ago
I did not have asthma or POTS before and have never had issues with reflux or acid or GERD.
In my case, it is partially exacerbated by my c-spine fusion. Putting my head and neck together properly caused everything else in there to move around. I have days when it truly feels like I'm being choked.
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u/moal09 19h ago edited 19h ago
Feel like you should keep hounding your doctor about it 'cause that's not an acceptable way to live.
I had the same constant choking feeling on my throat for months, and it improved after I started elevating my head/chest during sleep and avoided meals 3 hours before bed. The pulmonologist thinks it might've been caused by the stuff I mentioned with my vocal cords spasming and also inflammation and nerve irritation in general.
Even now, the feeling still sort of lingers, but it's much much weaker than it was earlier on. Before, it was so bad, I literally felt like I was being strangled by someone. Now it's more like someone is resting their hands on my throat sometimes, which is annoying, but not nearly as bad.
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u/Different_Swimmer715 21h ago
I had Covid three times and got permanent fatigue, a permanently stuffed nose and air hunger since the last infection. Had my heart and lungs scanned and checked and it all came back good, symptoms persist though. The air hunger is especially weird because I can go jogging or lift weights and be fine, but then I'm making lunch and I literally can't get through two sentences while talking to my cat without random gasps.
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u/moal09 17h ago edited 14h ago
My left nostril is permanently stuffed up and chronically dry since the breathing issues started. Within the last like month or so though, I'm finally getting some airflow returning to it again as my breathing improves. Maybe something to do with respiratory muscles healing, and it becoming easier to get air in/out.
And my stuff is the same way also. Exercise doesn't exacerbate my breathing problems at all, but talking does. I notice I get out of breath when eating also. I'm a pretty thin guy for reference, so it's not like this is weight-related either.
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u/LurkingArachnid 21h ago
I am experiencing air hunger for the first time 2 1/2 years in. Interesting that this happened to someone else too. In my case, I think part of it is that my nose has gradually been getting more congested throughout the day for whatever reason and so I’m not really getting when I breathe through it.
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u/Kaurifish 21h ago
As someone who got nasty post-viral syndrome + asthma more than a decade ago, push the docs hard on this. They absolutely do not want to believe how debilitating it can be.
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u/moal09 21h ago
One issue I've run into is that even if a doctor suspects symptoms of long COVID, they don't really know what to do about it. All this is so new
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u/eye_of_the_sloth 20h ago
Oh is this where you get a normal cold or viral w.e. and then it turns into a 2 month long cough + sudden need for asthma inhaler, and a constant drip/lump in the throat that makes you cough and clear your throat after every sentence. It lasts far too long, negative on all tests, and medicines and Drs dont help. Then it fades away ??? am I not alone?
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u/kingqueefsalot 22h ago
I'm wondering the same.
I had long covid 4 years ago and I still have respiratory episodes. I have no clue what triggers them. But out of nowhere I'll suddenly start wheezing with each breath and it feels like I have something like silly putty stuck in my throat that makes it really difficult for air to pass through. Thankfully the episodes are rare now and only happen randomly every 2-3 months. But before long covid I never had any respiratory issues, and now I have to carry an inhaler with me everywhere I go just in case.
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u/moal09 21h ago edited 21h ago
The globus sensation in your throat might be from acid reflux damage. That's a very common symptom along with air hunger mimicking asthma because of the inflammation it causes, which makes the nerves constrict your airway. The two conditions are also very comorbid with one another because asthma changes air pressure in the upper body, which can worsen reflux, and reflux causes airway inflammation that can worsen asthma or asthma-like symptoms.
Might be worth looking into that with your doctor. There's a form of reflux called silent reflux or LPR where you get no heartburn because the reflux doesn't sit in your chest long enough, but the acid travels further up into your throat and sinuses and can even micro aspirate into your lungs during sleep. It's silent because you don't really notice it until it starts to cause real damage.
Sleeping flat and eating close to bedtime tends to make this worse.
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u/realitydoor 18h ago edited 17h ago
Wow. Last year i had to quit smoking because i couldn't breathe. I felt like i was suffocating. I quit smoking the same week i came down with this. I couldn't tell if it was my heart, my lungs, or my stomach. It kind of felt like a panic attack. I couldn't breathe at all so the doctor prescribed an inhaler, pepcid ac, and sucralfate. It turned out the pepcid did the trick. I didn't realize it might be silent acid reflux. I still take the pepcid and it makes me feel better every time I take it. That's good information you shared.
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u/kingqueefsalot 18h ago
Thank you for all of this info! I will definitely be bringing this up at my next Dr appt.
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u/Altruist4L1fe 15h ago
Could be silent (LPR) reflux. Aspiration of acid & trypsin into the lungs & sinuses.
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u/TactitcalPterodactyl 19h ago
This is me. I had a ton of lung and heart tests, all of which came back immaculate, but I still have this unexplainable shortness of breath and air hunger.
I can sometimes go for an intense bike rides or work out at the gym with zero breathing problems. Other times I'm winded just from walking up the stairs. It comes and goes randomly.
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u/snakeproof 14h ago
This is exactly what I have, I can do all sorts of strenuous activity with no issues, then I get air hungry while sitting, and only a deep yawn can reset it.
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u/dmanbiker 21h ago
Ive had covid twice, both times after getting the vaccination, and to me it feels like I have the flu with only exhaustion and just a lightheaded sort of feel. You can just tell its covid when you've had it before because it makes you feel weird. I didnt even run a fever or anything and was vaping and smoking weed through the whole thing without issue. I could have worked straight through it with a little discomfort if I didn't find out I had it from a test.
Idk if it's because im vaccinated or maybe the disease doesnt affect me as bad, but I know several people who got extremely sick from covid, sometimes for weeks, and they all had a cough, while covid for me was like 3 days of feeling a little weird and loopy both times.
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u/thetantalus 20h ago
For all the people commenting here about fatigue, please 1) get a sleep study done, and 2) get a CO2 test done.
I had recurring debilitating fatigue and after several doctors, a pulmonologist finally figured it out.
Now I’m on a breathing machine every night. While some might think that sucks, the quality of life has increased so dramatically I love the damn thing.
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u/moal09 20h ago edited 17h ago
For me, it's just trouble breathing rather than fatigue, but that's interesting. Were you sleeping a full 8 hours uninterrupted before the machine?
I did get some PFTs done by the pulmonologist, but I kept failing the test where you're supposed to breathe out for a really really long time. I would run out of air really quickly no matter what I did. The guy running it actually got kind of annoyed with me 'cause he said he couldn't get a proper reading unless I blew out for at least X seconds, but I kept trying to explain that I was literally doing my best and couldn't.
The only thing they mentioned to me after my PFTs was that there was some evidence of gas trapping.
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u/Varathane 22h ago
Can we get to a solution for this please? What increase brain blood flow?
Here's another one for those that are long covid patients that fits criteria for ME. We've known since the start of the pandemic that ME patients have reduced CBF.
A study in 2020 measured the drop in Cerebral blood flow (CBF) in 100 severe ME/CFS patients this was provoked just from sitting up:
Severe ME/CFS patients With POTS -- had a reduction in CBF of 28%
Severe ME/CFS patients without POTS - reduction in CBF of 23% (no change in heart rate and blood pressure)
Healthy Controls - reduction in CBF of only 0.4%
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u/Carbon140 21h ago
Probably nothing meaningfully fixes this unfortunately. Last time research like this was posted it seemed as though it's probably structural damage to microscopic blood vessels in the brain. (and probably whole body), leading to a general loss of function in multiple areas.
Having said that, I myself did mostly recover from chronic fatigue, but it took around a decade, maybe your body can repair, albeit very slowly.
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u/ProfessorMagnet 21h ago
What did you do to recover and do you know what caused your fatigue?
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u/Murdathon3000 20h ago
Any serious infection can cause symptoms similar to long COVID. COVID being a world stopping pandemic means that the amount of people developing said symptoms increased dramatically and was generally attributable to one specific illness, COVID.
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u/superg64 13h ago
This but also minor illnesses can also trigger it(generally less common and less severe). Any named diseases to generic flus to a common cold can trigger it. I wouldn't be surprised if other things that trigger immune responses like allergies and autoimmune conditions could trigger me/cfs.
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u/Carbon140 15h ago
In my case it was severe glandular fever, which has been the most common cause of it prior to covid afaik.
The only thing that seemed to help was years of basically restful living (no or light work) , very healthy eating, weight training (cardio was death) and time... I was extremely lucky to have supportive parents, I feel for anyone who is unable to go to these lengths because of work etc.
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u/darkmushyM 20h ago
Only thing that helped me was the right supplements and food. Would do a genetic/dna test and upload it to geneticlifehacks so you know what you need
Ofcourse bloodtests to make sure nothing is high value or under value
Also make sure to rest
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u/shiningdickhalloran 18h ago
Which supplements and foods helped?
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u/Varathane 18h ago
None. Just random improvements over time. All the supplements I tried did jack all and I ditched them that first year. Quite clear it didn't make a difference when I was still stuck in bed, and then I couldn't be sure if they were adding to my symptoms.
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u/hughperman 21h ago
POTS medications may be useful, due to the overlap or even same-ness of the mechanism.
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u/beigs 19h ago
They have helped me - I have POTS and long covid :/
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u/Varathane 19h ago edited 19h ago
well it has been 15 years for me of ME not solely fatigue. I had some improvements in year 1 and year 5 for seemingly no reason, so no bedbound anymore. I can be upright all day for the past 5 years and putter a bit unless in PEM, but doesn't take much to trigger that. Can't seem to get beyond 700m hikes without PEM for 3 days.
My trigger was a few repeat bouts of malaria p.vivax in a short span.4
u/moal09 17h ago edited 17h ago
That's kind of depressing. It's crazy how the things it damages seem to be anything and everything. Some people develop breathing issues, others serious fatigue and muscle weakness, others lose sense of smell or taste, some have problems with the body's autonomic processes, etc.
Can those blood vessels heal fully? Whatever happened to me, I did start getting better very slowly after 4 months. 11 months in now, and nowhere near normal, but MUCH better than before.
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u/Left-Height4925 17h ago
How about discovering what is causing the low CBF in the first place?
Also researchers are recognizing that ME/CFS is an 'offshoot' of LC- and I have it now.→ More replies (1)5
u/maetel_999 18h ago
pentoxifylline may help... There is or was a study to treat long COVID. I looked into awhile ago and need to look into it again.
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u/TheSnydaMan 20h ago edited 19h ago
Regular cardiovascular exercise, walking, improving airflow (moreso providing more oxygen per breath)
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u/ShiftyBizniss 18h ago
People with ME can't really exercise. It causes PEM and often results in a worsened baseline after the crash subsides.
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u/Left-Height4925 17h ago
Exercise has proven to worsen Long Covid, unfortunately.
A lot of us in my group were highly active - one was in Olympics trials, another was a long distance runner- we tried to do the old 'get over the flu by working it out" and I feel, personally, that is part of what pushed me completely over the edge into ME/CFS.→ More replies (3)
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u/Sessile-B-DeMille 20h ago
My sister has this, its devastating. She lives about 6 hours from us, and I have to go get her for the holidays, driving that far would exhaust her.
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u/Left-Height4925 16h ago
I have been on a couple very short trips - like a few miles- since getting it 3 yrs ago. Having a pillow and being able to lie down in the back seat is essential. Also to keep sound down, like very calm music if you play any. Also try not to talk outside of what is absolutely necessary. Social interactions are exhausting. If you stop for food, make it light, easy to digest and low carb. Hope that helps.
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u/Potential_Being_7226 PhD | Psychology | Neuroscience 23h ago
Article is open access at Neuroimage Reports:
Hedberg SM, Borg K, Stenberg J, Hedström S, Granberg T, Gyllenberg A, Petersson S, Van Loo H, Nordin LE, Möller MC. Cognitive fatigue is related to reduced cerebral perfusion and sustained attention in patients with post COVID-19 condition: An fMRI study. Neuroimage Rep. 2026 Sep 12;6(4):100406.
https://doi.org/10.1016/j.ynirp.2026.100406
Abstract
Persistent fatigue is one of the most prevalent and disabling symptoms of Post-COVID-19 Condition (PCC). To investigate possible mechanisms underlying fatigue in PCC, the present study investigated the relation between different aspects of fatigue and fatigability, and cerebral blood flow (CBF) in individuals with PCC. The participants, 22 patients and 19 controls, matched by age and sex, performed a 20-min-long psychomotor vigilance task (PVT) during fMRI. The total mean reaction time (RT) was used to measure processing speed and fatigability by dividing RTs into quartiles. CBF was measured with pseudo-continuous arterial spin labeling. Self-reported state fatigue (VAS-scale) was assessed before and after the PVT. Patients reported larger increase in state fatigue (p = 0.004) and longer RTs across all quartiles (p = 0.001) compared to controls, with no difference in fatigability between groups. The voxel-wise analysis of CBF revealed significantly lower global CBF in patients compared with controls (49.2 vs. 51.7 mL/100 g/min). Regional hypoperfusion was observed in several clusters, including the right inferior occipital gyrus (27.9 vs. 46.4 mL/100 g/min), left postcentral gyrus (29.8 vs. 51.3 mL/100 g/min), and right middle cingulate cortex (30.5 vs. 48.7 mL/100 g/min).
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u/CapableNeat4351 15h ago
Genuinely curious how one exactly gets diagnosed with long covid? Can people who were asymptomatic and unknowingly had it still suffer from long covid?
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u/oyst 6h ago
I feel like for a lot of people it's getting checked for everything else, finding nothing, but still having a pattern of symptoms, so then the doctor goes, "well, this does look a lot like [other cases of long covid]..." I was even referred to a long covid clinic in a similar situation but not treated, because I was improving. the definition of long covid at the time meant no improvement or cure!
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u/wontyoujointhedance 10h ago
Definitely yes to the 2nd q. I had “exposures” before and never had a positive test or symptoms. The last one in July ‘24 triggered some autoimmune responses.
Then my partner got it in Jan ‘25, and no doubt I have to have had it, but never showed any symptoms beyond fatigue. We couldn’t get tests at the time, they were sold out everywhere.
Then, two weeks later, full on post covid syndrome for me (but not him, hah). I’ve recovered a small amount compared to where I was a year ago, but nowhere near back to normal.
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u/PlanetXParadox 5h ago
I’ve never had COVID that I know of but my sister had it asymptomatically, and I have been dealing with worsening chronic fatigue for a while.
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u/Left-Height4925 14h ago
Yes 2 the 2nd Q
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u/CapableNeat4351 13h ago
Welp. I’ve been dealing with worsening chronic fatigue since Covid…might be time to get that checked out. Also getting put on a cpap machine for mild sleep apnea but maybe this is worth looking into
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u/Skynetdyne 19h ago
How is this even diagnosed? I see so many articles on Long Covid but never met or heard anything about it outside in the real world. Im fatigued all the time you think my doctor would ever entertain age idea of long covid being the cause? No chance.
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u/ChaoticKiwiNZ 18h ago
Its usually diagnosed by the process of elimination. My systems are very heart related (I literally have aches in my jaw and left arm all the time for the last 3 years). I have had several ECGs at the ED and one when an ambulance came out (I had an adrenaline rush but it presented like a heart attack). I managed to see a cardiologist and he ran a bunch of tests and told me my heart is 100% fine. He then told me about dysautonomia and said that it was incredibly common after COVID. He told me that the vast majority of the referrals to see him were from people in the exact same situation as me (perfectly healthy and fit before COVID but never recovered fully and now have a vast array of symptoms).
Because all my tests are coming back 100% fine he diagnosed me with Dysautonomia caused by long COVID. He did tell me that most people get better and even fully recover over time but he can't tell me how long it will take. Some take 3 to 6 months others take years and years.
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u/moal09 17h ago
1 year recovering from severe breathing issues for me. Recovery started about 4 months after and has been slowly continuing ever since. Dunno if I'll ever get back to normal, but at least there are some signs of life from my body.
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u/7marius7 18h ago
It's often not diagnosed, and many doctors actively look for anything else. There's no test, no consensus on causation, and no clear proven treatment. It's also full of potential subtypes requiring different approaches. It's a mess.
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u/sector9love 15h ago
The diagnostic criteria for MECFS are quite clear even the CDC website has it.
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u/Dinierto 15h ago
And yet my wife who has it can't get a doctor to sign off on it as the ones around here don't seem to believe in it. She has all the symptoms and has progressively gotten worse to where she wears compression socks and uses a cane but the last doctor said "maybe you're not getting enough sleep because you're reading books all night" (she has trouble sleeping and when that happens she reads)
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u/sector9love 14h ago
Yeah that’s true for 99% of my other doctors. It’s really hard being a woman and trying to receive healthcare these days. Particularly when it comes to MECFS. It’s great that she has a supportive partner, and truly even just going to appointments with her can make a massive difference in doctors taking her seriously.
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u/moal09 14h ago
I'll say the same problems exist if you're a young healthy male as well. Doctors don't take you seriously ever because the idea is that you're too young and healthy looking to be having serious issues.
I was told I was too young to be having any serious GI issues when I woke up with black stool and a horrible feeling one morning in my late 20s with residual awful symptoms that lasted a week. Found out a decade later that I had an ulcer that burst and bled. I have a lot of chronic GI issues now because of that, and I probably wouldn't if the doctors had taken me seriously back then.
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u/sector9love 1h ago
The problem is way worse for young women I’m sorry for what you went through but you have no idea
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u/DeArgonaut 21h ago
That backs u pmy own hypothesis. Ever since I had an infect shortly before covid was officially in the us (unsure if it was covid or something else) I've had issues with feeling fatigue, but espeically with feeling fatigue after using the toilet, and esp eating. In both cases blood flow should be moving towards my my bowl and stomach respectively, so even less blood in my brain
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u/sector9love 15h ago
I agree with everything you said.
Also please consider MECFS. Using the toilet is physiological exertion, and sometimes it comes with a delayed cost called PEM.
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u/DeArgonaut 15h ago
Rn I think my situation is most likely ME/CFS with a strong possibility of it being worsened by that infection. I was having some fatgiue issues prior to it, but then it got way worse
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u/sector9love 14h ago
Unfortunately this is what happened to me as well. Pace yourself like your life depends on it
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u/cauliflower_wizard 19h ago
1 in 10 covid infections result in Long Covid. Your likelihood increases each time you’re infected. Anyone can get Long Covid, not just the “vulnerable”.
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u/Gloriathewitch 18h ago
long covid sufferer since the pandemic was declared, you do NOT want this. every time i get a flu i permanently get worse, i get brain fog fibromyalgia symptoms and crushing fatigue every day, forget having a career and travelling i'm happy if i can just get groceries and do chores....
i try not to think about the future outlook because i know old age is going to be even harder.
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u/GimmickNG 13h ago
that seems like an incredibly high number. if covid happens every year then by now everyone should have long covid.
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u/cauliflower_wizard 13h ago
Millions of people do have Long Covid.
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u/GimmickNG 13h ago
Yeah, millions with an m. Not billions. It doesn't make it good, but thats anywhere between 10 to a thousand times lower.
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u/Flux_My_Capacitor 20h ago
I’ve got the LC circulation issues but not the fatigue, thank effin’ god.
Of course there’s zero understanding as to why any of this happens so I guess I just thank my lucky stars.
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u/born2bfi 17h ago
Same. I have POTS that’s gotten better over time but I’m still medicated for it. I can mostly live a normal life other than I get wore down if I’m on my feet too long. It really did a number on me though over the years. I’m trialing LDN now and seeing if that modulates my immune system and makes the dysautonomia better. Takes up to 6 months to see results.
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u/Billkamehameha 21h ago
How can I fix it? I've been feeling tired and out of breathe for the past year or two. I've just thought it was old age
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u/cauliflower_wizard 19h ago
You can’t fix it necessarily. But you can prevent getting repeat infections.
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u/AuK07 22h ago
How do we get checked up for long covid symptoms
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u/Left-Height4925 16h ago
I wrote my history - completely- from Covid on out. I had no history before that, my only trips to the hospital were for tonsilectomy and baby. Not on any meds for anything at all previously. I was 'ridiculously healthy' for my age. I listed all of my symptoms and about when they started.
Narrowing everything down, the only thing left was LC.
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u/Xsiah 22h ago
What do you mean? Either you feel symptoms and go to your doctor, or you don't and there's nothing to check.
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u/the-apple-and-omega 22h ago
Lots of doctors don't consider long covid.
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u/MediocrePotato44 22h ago
They do not. I’ve got 3 different doctors and none of them consider them this. I’ve done two sleep studies because they thought sleep apnea. That was normal. I’ve been put on ADHD meds, narcolepsy meds, no real help. Now they want me to start considering a neurologist because my fatigue and brain fog are so bad.
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u/AuK07 22h ago
I got Covid delta and omicron eventually but I think that either I’m exaggerating but since then I’ve had pretty random mucus production or sudden upper respiratory stuff. Or if my headaches and random brain fog is not just imagined
How do we concrete test for these things
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u/Xsiah 22h ago
There's no single concrete test for it, nor or there a single treatment once it's determined that you have it. Go to your doctor, explain your symptoms, when they started, etc. There are different things your doctor can try to address your symptoms regardless of their origin.
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u/AuK07 22h ago
No but I just don’t know if they’re natural or not or a response to something else
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u/Xsiah 21h ago
So if your headache is "natural" you don't want it treated, but if it's because you had COVID then you do?
I really don't understand - if you feel unwell, you get it checked out. All aches, production of bodily fluids, etc. are in response to something - it might be allergies, viruses, injuries, etc. what difference does it make if they're from COVID or not?
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u/astreetratnamedesire 22h ago
Thought the article said "President Fatigue."
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u/BillieRubenCamGirl 22h ago
This tracks with my new fainting thing every time I stand.
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u/cmndr_keen 22h ago
Check for orthostatic hypotension, the test is a simple series of BP checks
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u/BillieRubenCamGirl 22h ago
Yeah I’ve been seeing a cardiologist. He says it’s not my heart. He has confirmed my blood pressure drops when I stand. But that’s a symptom, not a cause.
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u/Tablettario 20h ago
Sounds like it could be POTS or disautonomia? I was diagnosed after the cardiologist ruled everything else out and then I asked about a tilt table test.
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u/Mindless-Baker-7757 22h ago
Not from these results, no. This study doesn’t really prove anything average brain blood flow between normal and long COVID patients.
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u/herecomestherebuttal 18h ago
I’m so glad long covid is being studied and taken seriously. It sounds like a nightmare and i’m shocked you know who hasn’t found a way to sweep it under the rug.
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u/wakatacoflame 21h ago
Does anyone else think “long covid” is such a strange medical term? Don’t they usually say things like “chronic” or “persistent”? Long covid sounds like something a kid says.
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u/Varathane 19h ago
post-COVID syndrome, or post-acute sequelae of COVID-19 (PASC) are the more medical terms for it.
Sequelae being: a chronic complication of an acute condition such as post-dengue fatigue syndrome from dengue fever (about 1/3rd of dengue fever patients end up with this) or post ebola syndrome (which can cause blindness & deafness along with fatigue and neurological symptoms)
Yes, long covid is a strange term for it. It was coined in spring of 2020 by some patients who at that point had not been sick for very long. No idea why places like Mayo Clinic have pages for it instead of using proper medical terms. We already have the "post _ syndrome" format for other infectious sequelae.
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u/PrissyPeachQueen 20h ago
It is a strange term! It makes it sound like there ongoing covid infection causing the symptoms, but what's most likely going on with "long covid" is prolonged immune dysregulation and autonomic dysfunction that don't normalize after an acute infection passes. The name "long covid" was coined by a patient online in 2020 and it stuck.
There are existing diagnoses for many of the ailments that people put under the long covid umbrella, namely, ME/CFS and POTS. These conditions have been known for decades to follow infectious triggers, but the govt failed to invest in research in them, so when covid hit people just came up with a new term. I tell doctors I have ME/CFS, they have no idea what i'm talking about because no one teaches it in med school. I tell them I have Long Covid, often they've heard of it, but the term is basically meaningless. It is very stupid.
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u/Left-Height4925 16h ago
Clinically they are calling it PASC now "Post-Acute Sequelae of SARS-CoV-2". I think they use 'Long Covid' in public stories and articles because that is what most people are familiar with.
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u/GRCooper 22h ago
As an aside, stay current with your vax. I had the original double dose, but didn’t bother after and I wound up in isolation for 2 weeks with it last year. Zero stars, would not recommend.
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u/Mindless-Baker-7757 22h ago
Why were you isolated for two weeks. I thought recommendations were “if you’re sick stay home. If you’re not you can go out”
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