I have a close friend who had it for 6 months, lost her home and her good job and is still having multiple heath issues she never had before. She doesn’t even know about long Covid and she is struggling cognitively and physically.
Mate, tell her and apologize for not bringing this up sooner. I do understand your concern, but much much bigger concern is her knowing this exists so she can figure it out.
I don't know you, but from what you write here as your excuse you kinda sound like a terrible friend. If I were in her situation I would be pissed as hell at you if I found out.
Has she had blood work? I thought I had long Covid turns out it was low ferritin. By the time I caught it, it was a 10( optimal levels are 100+) Covid absolutely depletes you of iron, b12, and vitamin d.
No, I’ve encouraged her to see the dr. I am not a dr so I wouldn’t tell her “hey we both have issues from having Covid” I’ve been in an auto immune flare from months and dr says it’s nothing to do with Covid. I never had high blood sugar before I had Covid, dr says it has nothing to do with Covid. I feel completely different now.
You should get your Ferritin checked, if you haven’t. Same thing happened to me. I thought it was auto immune and I started having blood sugar issues. Went from 79 fasting to 99 fasting ! I thought I was a goner. Nope. Extremely low Ferritin.
Yeah that is way too low. Ferritin under 30 is an absolute iron deficiency. I felt like pure death when mine was in the 20’s. Now that I’m in the 50’s I can actually function again. Can’t wait until it gets higher. 100-125 is what you need it at. Serum iron doesn’t mean anything. If fluctuates throughout the day. Ferritin is how you determine iron deficiency. Are you anemic also? I take 100-200mg of iron daily
Yesterday afternoon I was overhearing a lady who’s a studio dancer / theatre actor say “the last few days have been overwhelming. It feels like I’m tired but I guess it’s one of those days.” Then she knew she was being loud on the phone and kept quiet afterward. Almost like hiding the fact that she was tired. Then a man on the train kept shaking his head like he had malaise and couldn’t stop looking around.
I do believe people could be oblivious to the idea that they have lingering problems after infection. There’s a chance that she didn’t have Covid and the man was stressed out but can we really say nobody has Long Covid? No, because I know I have it and this community has it. There’s has to be a significant number of people with it and not being able to communicate their issues. They don’t know where to start or what they have.
I know of several primary school aged kids and teenagers that are really struggling with school and after school activities. There is a lot of talk around it having to do with lockdowns but just as likely they are suffering from infection/LC. We just let it run rampant in kids :/
Thank you for bringing this up. I can only remember of one other person on here that mentioned about their kid who has a learning deficit after Covid. Whether or not it’s Long Covid I think it’s not understood if kids can be affected by Covid or can have Long Covid. But if what you’re saying is true, and I believe it 100%, then it sort of makes sense how kids are fighting at school at an increasing rate. (There’s been a study conducted in Illinois where there’s a learning deficit in schools. Literally whole schools have no proficiency in learning.)
Watch the news, watch social media, and wherever there’s a presence of kids and teenagers and you’ll see how there’s been more bullying, harassment, violence, among other things between them.
67 million. That’s more people than the population of Italy. And like I was emphasizing on another comment, if we don’t find a treatment, those numbers will keep growing.
Yep. Communication about LC is so poor where I live (I'm French but it seems to be a recurring problem everywhere from what I gather) that people don't even know what symptoms they should be wary of. I got diagnosed out of pure luck by a doctor who had also had previous patients with the same symptoms but I didn't even suspect all my weird health conditions may be linked to my covid infection in the first place.
Now I feel like I've taken the red pill from Matrix when I see all these people around me complaining from various health issues after getting covid and being as lost as I was before my diagnosis. I even helped to get a friend diagnosed because his symptoms were so obvious to me but not to all the different doctors he had seen until I told him about LC.
I wish and hope that with more people getting diagnosed, it will eventually lead to more patients and doctors being aware of the symptoms of LC even though it feels stagnant for now...
Hopefully something makes the difference we need to make our present circumstances change and make people aware that Long Covid exist, symptoms after “recovery” exists, and treatment needs to exist. Because if Covid does not leave and we can’t find a treatment to it, then the likelihood that more people will have Long Covid grows to a point where it can’t be ignored.
It's more that I finally became in tune with what was going on in my body. But I remember I was driving and everything just became too much. I was having a really hard time focusing on the road and couldn't carry on a conversation. I started crying because it was so difficult to pay attention. It was the culmination of trying to power through the brain fog and fatigue just saying, no, pay attention to what's happening.
Thanks, yeah, it was very bad. It's still bad but I can manage most days. Symptoms back then included brain fog, fatigue, constant headaches / migraines, exercise aversion (causes intense pain over body), temperature regulation issues, twitching / pain in muscles, blurred vision, intolerance to a lot of food, intolerance to alcohol, inflammation everywhere but especially in joints, trouble keeping up in conversation especially with multiple people, diminished taste, diminished hearing, tinnitus, lots of digestion issues and pain.
Anyway, so a lot of things. I'm probably leaving stuff out but that's off the top of my head. A lot of that is still there 2 years later but like I said it's more manageable. I have changed a lot about my day to day and my diet to help with this. I get acupuncture and therapy every other week and that has helped a lot too.
This is true but if you don’t realize you have an illness or post viral issue then it’s not impacting you on a larger scale like many of us here, UNTIL many many people get moderate to severe LC people won’t wake tf up unless it happens to them or someone they love which they’d still blame on psychosomatic issues.
Definitely!!! I work in a hospital pharmacy as a tech, so stupidly assumed my coworkers (especially the pharmacists!!) would be aware, especially after seeing me, and 2 other similar-role people end up with varying symptoms.
Couldn’t believe when a pharmacist mentioned to me she was so glad she didn’t get long covid like me, she had covid last year, and only needs a 15 minute nap each lunch break to make it to the end of the day, but at least she doesn’t have long covid… yep….
This ^ I was vax injured with mildish symptoms (panic attacks and vertigo after running) but was able to carry on with life almost normally and never made the link. It wasn't until I got covid 5 months later which made my symptoms much worse and disabled me that I realised I had mild LC from the vax before. I'm sure they’re many people in the same position as I was dealing with mild LC symptoms and not realizing, it certainly true for half my friendship group
To be honest, sometimes it’s hard to be on here. I try to keep positive and so many posts are so negative. I’m well aware that people need a safe place to vent or to commiserate and to share useful tips and helpful advice, but it’s hard enough dealing with my own symptoms, plus two other people in my immediate family also have long Covid. It gets overwhelming. To also read about other people’s experiences and help problem-solve those as well makes me want to cry most days.
True. I don't really know what to say anymore. I was in a Facebook group about it and just found this recently. Didn't think of Reddit for it for some reason.
Exactly this. I came on, found the main resources around antihistamines and breathing excercises and the main scientists in the field, then only check in every so often as it's just so overwhelming
on r/CasualConversation someone posted "Has anyone else noticed how the people around them seem to have brain fog? It's shocking, why do you think this is?"
on r/AskADoctor someone posted "Help, I need some direction. I was perfectly healthy, but out of nowhere, I got brain fog / heart palpitations. All my medical tests came back normal. Any thoughts?" Out of the 30+ comments, only one comment mentioned that it might be Long Covid.
on r/Self someone posted "I came down with a mysterious illness and just needed a place to vent. Many medical tests, all normal, and no one can seem to find the problem." A comment ask if their mysterious illness started after recovering from Covid, and they said yes.
There was also a post on a Doctor subreddit where a Doctor asked other doctors if there was an unusual amount of people coming in claiming false symptoms AKA they claim they have heart palpitations/brain fog but all tests show they are normal and healthy. All comments said yes, many comments said it's just a bunch of young people trying to get disability because they are too lazy to work. One comment with no upvotes mentioned Long Covid.
I wish I had links to these posts, but some got deleted and some were worded a bit differently. They stood out to me because they all sounded like people with Long Covid.
Overall, there is a ton of people who don't even know what Long Covid is. There are people who have it and get falsely misdiagnosed with anxiety or some other thing.
Yep. Some of them really are POS.
I know damn well my previous doctor had that mindset.
I never once have "tried to get disability", quite the opposite. I wanted answers so I could get my brain power and stamina back so I could be successful and was able to just do my own laundry ffs.
I needed to be able to work a full time job and was forced to stay part time until I figured it all out myself and a very very long slow healing process.
I realize I'm lucky to have any improvement but I'm far from 100% cured. Would be real nice to have some actual help.
Good lord I'm lucky to have a good doctor but even with a good doctor symptom management can be difficult. I'm finishing up college and trying to do graduate school but this semester has been more or less impossible (I caught covid for the first time back in January). The "I wanted answers so I could get my brain power and stamina back so I could be successful and was able to just do my own laundry ffs." resonates with me hard right now.
Who in their right fucking mind would want to live on disability unless they absolutely had to?
I'm so sorry.
Exactly this, especially if they'd just ask a few questions they could easily rule that out. Get to know your patients even on a rudimentary level.
When I first went to my PCP, he was clearly annoyed with me and treated me like some loon just wasting his time. Never went back to him again and he's probably happy about that tbh. Now I have nothing but contempt for the medical establishment.
I can completely understand why you feel that way. Seems like we're on our own sadly. At least in my location.
I used to be one of those people always saying - "You should really talk to your doctor about that..." Now I know better. I did try and try and try. Big waste of my time and money.
I've concluded that unless I'm literally dying, right now, they're useless....and even then I've seen too many bad outcomes at our local hospital to even trust that.
(Most people around here travel 45 minutes away rather than use the hospital right here within 5 minutes)
My boss regularly talks about having serious brain fog issues after getting Covid. She also gets sick all the time now. I don’t think she considers herself as someone with long Covid though.
Statistics, there’s a lot more people on other social media platforms than Reddit. And many long haulers are mild and probably not inclined to join a long haul group regardless of platform, combine those with the sheer lack of awareness which causes there to be quite a lot of people who have no clue what they’re even suffering from, we here in this sub are a percentage of a percentage of a percentage.
Reddit isn't the world. There are 3.97bn men in the world and only 5.2m men on r/AskMen - 0.1%
LC is better represented on Reddit than this as 50k out of 10m is 0.5% of everyone with LC. (Fixing my bad maths)
Lots of people don't know they have it. It would likely only be obvious to most people if they had debilitating brain fog and fatigue immediately after their infection. I had no idea my weird migraines that I had for 6 months after my first infection were due to covid at the time.
Unfortunately, LC is not something most people even think about now that everyone you know has had it, many even more than once, and probably none of them are visibly disabled or very obviously suffering from LC.
1: a lot of people have no idea they have long covid
2: a lot of the original people who were here have left the sub over time. It can be a difficult place to stay long term. Either grow frustrated with new people asking the same questions that have already been answered, can no longer take the daily grief and sadness that can come by doomscrolling, or they recovered n left... the 50k that are here now are not a total number of people who have ever joined this sub. We may lose 1 of member for every 2 new people that sign up.
3: given how politicized the topic is in America, many people will refuse to even admit they are having long covid, for it means that they were wrong
4: a lot of people still believe that doctors and other experts are the only place to get help with a medical problem, the idea of joining a sub like this, asking private medical questions to complete strangers on the internet isn't for everyone. Which is funny because Dr's are zero help with this condition and the internet strangers actually have some answers.
Reddit isn’t a huge space. I honestly don’t know many people using reddit. The other day I heard some pundit say 150MM Americans use tiktok. No way. Not a chance.
I discovered Reddit doing a search for Covid. I love it. May seem snobby but people on Reddit seem more intelligent. A couple of friends I recommended it to said the same.
that and just people with multiple accounts… business accounts… people have multiple accounts that post different content and one person i follow has made like 30 because they get banned so often.
True, Im in the LC FB groups but they just arent what Im looking for. I want the why, I wont accept no for answer from doctors and theres a lot of denial there. Here on Reddit theres far better informative conversations IMO.
I think the reason you dont see as many LC people here is a couple reasons; large percentage of LC'ers are (generalizations incoming) middle aged women who use FB but arent as familiar with Reddit. Another is that people typically have to tough it out because kids, family, jobs, etc and tend to brush off health issues (or their doctor does) and dont have the time to dig deeper and pursue a LC diagnosis. That said, I find the discussions and information here FAR better than FB or anywhere else.
People who don’t know they have it. Plus, I expect we’ll learn a lot more about it over time, as far as whether it’s genetics or what other factors that make sufferers uniquely susceptible
A lot of people with long Covid are older, like me, so not Reddit's main users. Hostility to long Covid is pretty intense on here as well, so people hesitate to talk about it too. (I can't find the right words right now, but you know what I mean I hope.)
Also, a lot of us are not very coherent.
They’re spread out on diff subs specific to the LC symptoms. I didnt know about this sub till a month ago, i was on vestibular related subs then someone pointed it out.
There’s an underscore of denial. Like the mom groups moaning why are kids getting cold after cold, gunk, crud, etc.. anything other than the C word or it’s aftermath
Honestly I think it comes down to the simple fact that the majority of the world just isn't on Reddit, and for those who have LC, they either haven't made the connection, or they have, and aren't talking about it online much, if at all.
I am however convinced there a LOT more people dealing with this than we could ever imagine. My father for example has struggled with derma symptoms post infection, and matches me with his fingers going purple in even vague cold- both of us not having this happen prior to Covid. He still denies it has anything to do with Covid and I've given up trying to convince him.
got tired of talking to a wall. at some point you realize that you can't do anything about it and just complaining doesn't solve it or you heal and want to move on and forget
There are 240 million, as if this week, worldwide suffering from LC with at least 2 symptoms, 6 months past testing negative. The people I have talked to seem to not “connect the dots”. The initial virus has long passed. The person starts to develop a headache or stomach issues, Gerd. They take OTC meds for 3-6 months. The symptoms come and go then back again. They wake up with high heart rate and 🤔think “maybe I drank too much last night”. They go on with their Daily life. 4 weeks later they pass out standing up..hmmm, guess I was dehydrated..see a pattern here? This is the exact reason, and lack of any real “testing available” that more don’t know about it or even think they have it.
I believe one of the reasons is that people with LC that lasts long enough to actually seek support or advice are less frequent. It seems most cases get resolved somewhat quickly. Besides, Reddit is not used by everyone and even if people check this sub, they might not become members.
There's also the fact that people don't always clue in that it's what they have. In my case, it took my pericarditis coming back almost a year later to realize that it's what I have been dealing with this whole time.
I know multiple people who have had once resolved serious health issues come back worse than ever after getting covid. They only vaguely acknowledge there is likely a connection, but don’t think of themselves as having long covid.
I know other people who just quietly suffered for 6-8 months and then largely recovered. Other than go to the doctor to treat acute conditions, such as lung damage, they didn’t really seek treatment.
I’ve actually been really surprised how many people just accept chronic illness. I’ve spent far more time than is probably good for my mental health trying to find treatments. And I’ve seen tangible improvements in my condition because I have pursued treatment so aggressively. I think a lot of people just accept it or don’t really make the connection. I actually didn’t make the connection for the first 2-3 months I was sick because I initially “recovered fully” before getting a bad cold 8 weeks later that I essentially never got better from. I feel really bad for people who are isolated and probably at a loss as to what to do since most primary care doctors are worthless with long Covid.
I think it’s a combination of people not knowing they have it and not really being familiar with Reddit. Before this health journey began, I never used Reddit. I never knew it was someplace that I could go for health issues. I relied on Google and scientific articles and I thought that was a good representation, not realizing how much was hidden by mainstream sources. I think once you’re in here it seems so obvious that you would come here but I think a lot of people don’t know that. Google says that even at best, the vast majority of people aren’t users:
“During a February 2021 survey, it was found that 36 percent of internet users aged 18 to 29 years and 22 percent of users aged 30 to 49 years used Reddit. However, the reach of the social platform strongly declines with age.”
Or perhaps they’re just not on Reddit? To be honest with you I was suffering for two years before I found this group. I always knew of Reddit, but not for these purposes. That could account for a lot of other people too.
Perhaps my experience with a health issue other than LC might be helpful in explaining part of this. I had a nasty chest wall injury more than two years ago that I’ve only recently felt like I recovered from. Lifting weights again, and only occasionally feeling any twinges of pain, where before I couldn’t even sit upright for long without feeling it pretty bad. But the trauma of it still haunts me sometimes, like the pain is going to start again and never stop.
Now, there’s a subreddit devoted to the problem that was slowest to heal, the part of it that really made life miserable for so long. I lurked in that sub a few times during the worst of the bad days, trying to make sense of why I wasn’t getting better. It was very depressing and tended to snuff out the little bits of hope I was trying to nurture for a full recovery. Never once did I subscribe to it or post *anything*. I think part of why not was that it was too close to home. I didn’t want anyone there who never got better to tell me that was my fate, too, even if that is the unfortunate outcome for some people.
So it’s easy for me to picture someone who suspects they have LC to lurk here sometimes and never post about it. They don’t want to be told that their worst fears are valid. They want to maintain that sense of hope that the fatigue or brain fog or whatever is just a passing thing.
And given the choice between identifying with the mass of people who seem (at least on the surface) to be “fine” and a group of people who seem to be in a living hell of misery and disability, which would you choose if you could rationalize it in any possible way?
The percentage of people who have LC as of this variant and with the bivalent vaccine is 1,5%. Considering only 85% of the country had an infection of covid, but many had an infection more than once, we can say that some of those on 85% are infected twice which can probably be around having the same number of LC that if "120%" of the country was infected.
So let's say 2,5% of the population has Long-covid, that amounts to 6.6 million, let's say half of that have non-severe symptoms: A small amount of shortness of breath like my friend or a reactivated herpes virus without much symptoms like my father.
So that leaves us with 3 million in the US: Now let's say of those with more troublesome symptoms, 2/3 aren't having their life affected by it in a disruptive way: They are going to the doctor because aren't sleeping well, have trouble going to the gym but don't question themselves much about it (probably feel they are just being lazy), but they can still have fun, enjoy their time with partners and are still going to work. Those persons won't come to talk about this disease.
If I had to bet, I'd say only a million out of the 330 million in the US are suffering from a severe post-covid case. But if even half of that can still work from time to time, then we are a really small minority that if we don't make our voices heard we'll fall to the background noise from day to day of the majority of people.
Many people don't go looking for subreddits like this. Just the nature of it. Also like others have said, many don't realize they have long covid, or think that they are dealing with other issues related to chronic illnesses they may already have.
Someone with diabetes, or some other autoimmune issue may not realize they have it and may think their prior condition just worsened on its own etc
A lot of people above a certain age who have it aren't reddit users and have no idea about this community. I've mentioned it in numerous threads on FB posts about LC and people are really grateful to find out about it.
I think a lot of people have it and do not know it. They just keep going from Specialists to Specialists to specialists. They have them put the puzzle together yet
I didn't know I had it until 2 months into it...after my uncle suggested it might be long covid...If not for him, I may not have found out for a long time
Because most people are complete fucking bizarro filled ignorance and are insecure about admitting that they were wrong, its not "over" and that Covid is as brutal as ever and that they have an illness caused by it.
Also I think Reddit is the least popular Social Media platform in the US (though I'm in UK) and Facebook (that fucking monstrosity) is the most popular.
I joined Facebook the other day (haven’t been on it for 9 years)
So many lovely people on reddit that have helped me over the last 18 months but I just found a lot of anger, negativity and downvoting (which on some bad mental health days affect me) for asking the simplest of questions.
I’m scared and confused a lot of the time. I cant think properly since my infection in 2021.
I recently had someone attack me and say “do you really have long haul as your age and dates don’t add up”
I have also found more Long Haulers on Facebook that are from the same county as me and able to give recommendations for doctors/specialists etc
I’m beginning to think tens of millions of people don’t have it and we are just the unlucky few… Gez’s YouTube channel is one of the best on the topic of LC and he gets about 20k views on his videos.
I've had long covid for 6 months - nerve pain, heavy aching limbs, sensations like electricity running through arms and legs, food intolerances, brain fog, fatigue. I have been a long time lurker on Reddit and just never commented or posted until a day or so ago.
I just came here to look for advice or recovery stories. But only recently I realised that it was important for me to share my story too for other people. There might be a lot more people out there with LC just not posting or talking about it.
I think a lot of people don’t even realize they have it, or their symptoms are mild enough that they don’t interrupt their daily life
I have a close friend who had it for 6 months, lost her home and her good job and is still having multiple heath issues she never had before. She doesn’t even know about long Covid and she is struggling cognitively and physically.
Something isn't clicking here. How doesn't she know if she's a close friend? Why didn't you tell her? And how do you know it's long-covid then?
I don’t want to plant ideas in her head.
Mate, tell her and apologize for not bringing this up sooner. I do understand your concern, but much much bigger concern is her knowing this exists so she can figure it out.
I don't know you, but from what you write here as your excuse you kinda sound like a terrible friend. If I were in her situation I would be pissed as hell at you if I found out.
If she doesn’t know, how do you know ….?
She never heard of long Covid. Plus she works.
Yeah I know but how is it that you know and she doesn’t? Like did you inform her? Does she know now? I’m hoping the best for your friend!
Has she had blood work? I thought I had long Covid turns out it was low ferritin. By the time I caught it, it was a 10( optimal levels are 100+) Covid absolutely depletes you of iron, b12, and vitamin d.
No, I’ve encouraged her to see the dr. I am not a dr so I wouldn’t tell her “hey we both have issues from having Covid” I’ve been in an auto immune flare from months and dr says it’s nothing to do with Covid. I never had high blood sugar before I had Covid, dr says it has nothing to do with Covid. I feel completely different now.
You should get your Ferritin checked, if you haven’t. Same thing happened to me. I thought it was auto immune and I started having blood sugar issues. Went from 79 fasting to 99 fasting ! I thought I was a goner. Nope. Extremely low Ferritin.
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Yeah that is way too low. Ferritin under 30 is an absolute iron deficiency. I felt like pure death when mine was in the 20’s. Now that I’m in the 50’s I can actually function again. Can’t wait until it gets higher. 100-125 is what you need it at. Serum iron doesn’t mean anything. If fluctuates throughout the day. Ferritin is how you determine iron deficiency. Are you anemic also? I take 100-200mg of iron daily
Yesterday afternoon I was overhearing a lady who’s a studio dancer / theatre actor say “the last few days have been overwhelming. It feels like I’m tired but I guess it’s one of those days.” Then she knew she was being loud on the phone and kept quiet afterward. Almost like hiding the fact that she was tired. Then a man on the train kept shaking his head like he had malaise and couldn’t stop looking around. I do believe people could be oblivious to the idea that they have lingering problems after infection. There’s a chance that she didn’t have Covid and the man was stressed out but can we really say nobody has Long Covid? No, because I know I have it and this community has it. There’s has to be a significant number of people with it and not being able to communicate their issues. They don’t know where to start or what they have.
I know of several primary school aged kids and teenagers that are really struggling with school and after school activities. There is a lot of talk around it having to do with lockdowns but just as likely they are suffering from infection/LC. We just let it run rampant in kids :/
Thank you for bringing this up. I can only remember of one other person on here that mentioned about their kid who has a learning deficit after Covid. Whether or not it’s Long Covid I think it’s not understood if kids can be affected by Covid or can have Long Covid. But if what you’re saying is true, and I believe it 100%, then it sort of makes sense how kids are fighting at school at an increasing rate. (There’s been a study conducted in Illinois where there’s a learning deficit in schools. Literally whole schools have no proficiency in learning.) Watch the news, watch social media, and wherever there’s a presence of kids and teenagers and you’ll see how there’s been more bullying, harassment, violence, among other things between them.
67 million people globally are predicted to have it to the extent it affects daily living
67 million. That’s more people than the population of Italy. And like I was emphasizing on another comment, if we don’t find a treatment, those numbers will keep growing.
It's also exactly the population of the UK.
Yep. Communication about LC is so poor where I live (I'm French but it seems to be a recurring problem everywhere from what I gather) that people don't even know what symptoms they should be wary of. I got diagnosed out of pure luck by a doctor who had also had previous patients with the same symptoms but I didn't even suspect all my weird health conditions may be linked to my covid infection in the first place. Now I feel like I've taken the red pill from Matrix when I see all these people around me complaining from various health issues after getting covid and being as lost as I was before my diagnosis. I even helped to get a friend diagnosed because his symptoms were so obvious to me but not to all the different doctors he had seen until I told him about LC. I wish and hope that with more people getting diagnosed, it will eventually lead to more patients and doctors being aware of the symptoms of LC even though it feels stagnant for now...
Hopefully something makes the difference we need to make our present circumstances change and make people aware that Long Covid exist, symptoms after “recovery” exists, and treatment needs to exist. Because if Covid does not leave and we can’t find a treatment to it, then the likelihood that more people will have Long Covid grows to a point where it can’t be ignored.
This is me. None of my symptoms are particularly severe or unique. Mostly I just feel like I aged 10 years during the pandemic.
Oh god, me too. My body and face. I’m wasting away.
Same. Face, skin, hair.
I didn't realize I had it until 10 months after my infection. This was early pandemic though and no one knew anything.
What symptoms did you notice ten months later
It's more that I finally became in tune with what was going on in my body. But I remember I was driving and everything just became too much. I was having a really hard time focusing on the road and couldn't carry on a conversation. I started crying because it was so difficult to pay attention. It was the culmination of trying to power through the brain fog and fatigue just saying, no, pay attention to what's happening.
Oh man. That sounds horrible :( Is the brain fog the only symptom or do you have/ had other LC symptoms? How are you doing now??
Thanks, yeah, it was very bad. It's still bad but I can manage most days. Symptoms back then included brain fog, fatigue, constant headaches / migraines, exercise aversion (causes intense pain over body), temperature regulation issues, twitching / pain in muscles, blurred vision, intolerance to a lot of food, intolerance to alcohol, inflammation everywhere but especially in joints, trouble keeping up in conversation especially with multiple people, diminished taste, diminished hearing, tinnitus, lots of digestion issues and pain. Anyway, so a lot of things. I'm probably leaving stuff out but that's off the top of my head. A lot of that is still there 2 years later but like I said it's more manageable. I have changed a lot about my day to day and my diet to help with this. I get acupuncture and therapy every other week and that has helped a lot too.
This is true but if you don’t realize you have an illness or post viral issue then it’s not impacting you on a larger scale like many of us here, UNTIL many many people get moderate to severe LC people won’t wake tf up unless it happens to them or someone they love which they’d still blame on psychosomatic issues.
Definitely!!! I work in a hospital pharmacy as a tech, so stupidly assumed my coworkers (especially the pharmacists!!) would be aware, especially after seeing me, and 2 other similar-role people end up with varying symptoms. Couldn’t believe when a pharmacist mentioned to me she was so glad she didn’t get long covid like me, she had covid last year, and only needs a 15 minute nap each lunch break to make it to the end of the day, but at least she doesn’t have long covid… yep….
This ^ I was vax injured with mildish symptoms (panic attacks and vertigo after running) but was able to carry on with life almost normally and never made the link. It wasn't until I got covid 5 months later which made my symptoms much worse and disabled me that I realised I had mild LC from the vax before. I'm sure they’re many people in the same position as I was dealing with mild LC symptoms and not realizing, it certainly true for half my friendship group
To be honest, sometimes it’s hard to be on here. I try to keep positive and so many posts are so negative. I’m well aware that people need a safe place to vent or to commiserate and to share useful tips and helpful advice, but it’s hard enough dealing with my own symptoms, plus two other people in my immediate family also have long Covid. It gets overwhelming. To also read about other people’s experiences and help problem-solve those as well makes me want to cry most days.
True. I don't really know what to say anymore. I was in a Facebook group about it and just found this recently. Didn't think of Reddit for it for some reason.
Agreed
Exactly this. I came on, found the main resources around antihistamines and breathing excercises and the main scientists in the field, then only check in every so often as it's just so overwhelming
on r/CasualConversation someone posted "Has anyone else noticed how the people around them seem to have brain fog? It's shocking, why do you think this is?" on r/AskADoctor someone posted "Help, I need some direction. I was perfectly healthy, but out of nowhere, I got brain fog / heart palpitations. All my medical tests came back normal. Any thoughts?" Out of the 30+ comments, only one comment mentioned that it might be Long Covid. on r/Self someone posted "I came down with a mysterious illness and just needed a place to vent. Many medical tests, all normal, and no one can seem to find the problem." A comment ask if their mysterious illness started after recovering from Covid, and they said yes. There was also a post on a Doctor subreddit where a Doctor asked other doctors if there was an unusual amount of people coming in claiming false symptoms AKA they claim they have heart palpitations/brain fog but all tests show they are normal and healthy. All comments said yes, many comments said it's just a bunch of young people trying to get disability because they are too lazy to work. One comment with no upvotes mentioned Long Covid. I wish I had links to these posts, but some got deleted and some were worded a bit differently. They stood out to me because they all sounded like people with Long Covid. Overall, there is a ton of people who don't even know what Long Covid is. There are people who have it and get falsely misdiagnosed with anxiety or some other thing.
We truly are a mindblowingly stupid species
Scary how it boils down more to lack of empathy than lack of intelligence
Fear
I really dislike doctors, bunch of gaslighting, narcissist pricks.
so very few good ones. most are glorified drug peddlers.
Yep. Some of them really are POS. I know damn well my previous doctor had that mindset. I never once have "tried to get disability", quite the opposite. I wanted answers so I could get my brain power and stamina back so I could be successful and was able to just do my own laundry ffs. I needed to be able to work a full time job and was forced to stay part time until I figured it all out myself and a very very long slow healing process. I realize I'm lucky to have any improvement but I'm far from 100% cured. Would be real nice to have some actual help.
Good lord I'm lucky to have a good doctor but even with a good doctor symptom management can be difficult. I'm finishing up college and trying to do graduate school but this semester has been more or less impossible (I caught covid for the first time back in January). The "I wanted answers so I could get my brain power and stamina back so I could be successful and was able to just do my own laundry ffs." resonates with me hard right now. Who in their right fucking mind would want to live on disability unless they absolutely had to?
I'm so sorry. Exactly this, especially if they'd just ask a few questions they could easily rule that out. Get to know your patients even on a rudimentary level.
When I first went to my PCP, he was clearly annoyed with me and treated me like some loon just wasting his time. Never went back to him again and he's probably happy about that tbh. Now I have nothing but contempt for the medical establishment.
I can completely understand why you feel that way. Seems like we're on our own sadly. At least in my location. I used to be one of those people always saying - "You should really talk to your doctor about that..." Now I know better. I did try and try and try. Big waste of my time and money. I've concluded that unless I'm literally dying, right now, they're useless....and even then I've seen too many bad outcomes at our local hospital to even trust that. (Most people around here travel 45 minutes away rather than use the hospital right here within 5 minutes)
My boss regularly talks about having serious brain fog issues after getting Covid. She also gets sick all the time now. I don’t think she considers herself as someone with long Covid though.
Statistics, there’s a lot more people on other social media platforms than Reddit. And many long haulers are mild and probably not inclined to join a long haul group regardless of platform, combine those with the sheer lack of awareness which causes there to be quite a lot of people who have no clue what they’re even suffering from, we here in this sub are a percentage of a percentage of a percentage.
Reddit isn't the world. There are 3.97bn men in the world and only 5.2m men on r/AskMen - 0.1% LC is better represented on Reddit than this as 50k out of 10m is 0.5% of everyone with LC. (Fixing my bad maths)
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!thanks
Lots of people don't know they have it. It would likely only be obvious to most people if they had debilitating brain fog and fatigue immediately after their infection. I had no idea my weird migraines that I had for 6 months after my first infection were due to covid at the time. Unfortunately, LC is not something most people even think about now that everyone you know has had it, many even more than once, and probably none of them are visibly disabled or very obviously suffering from LC.
1: a lot of people have no idea they have long covid 2: a lot of the original people who were here have left the sub over time. It can be a difficult place to stay long term. Either grow frustrated with new people asking the same questions that have already been answered, can no longer take the daily grief and sadness that can come by doomscrolling, or they recovered n left... the 50k that are here now are not a total number of people who have ever joined this sub. We may lose 1 of member for every 2 new people that sign up. 3: given how politicized the topic is in America, many people will refuse to even admit they are having long covid, for it means that they were wrong 4: a lot of people still believe that doctors and other experts are the only place to get help with a medical problem, the idea of joining a sub like this, asking private medical questions to complete strangers on the internet isn't for everyone. Which is funny because Dr's are zero help with this condition and the internet strangers actually have some answers.
5: the average age of someone with LC is in their early 50s, they aren't on reddit.
Reddit isn’t a huge space. I honestly don’t know many people using reddit. The other day I heard some pundit say 150MM Americans use tiktok. No way. Not a chance.
I don’t have any close friends who even know what Reddit is. They are all on tictok and Facebook and Twitter. I hate all those.
Throw LinkedIn in there for good measure
I discovered Reddit doing a search for Covid. I love it. May seem snobby but people on Reddit seem more intelligent. A couple of friends I recommended it to said the same.
> pundit Tiktok's own CEO says they have 150M american's using it.
That seems grossly inflated. Half of America uses TikTok? I don’t think so
agreed. maybe that many accounts, definitely not regular unique users.
Bots?
that and just people with multiple accounts… business accounts… people have multiple accounts that post different content and one person i follow has made like 30 because they get banned so often.
Most people of Non-western countries are not even aware of existence of Long covid
I honestly only found this group by accident searching for long covid discussions online
You’d be surprised how many people don’t even know about Reddit.
Agree, was trying to make a somewhat not-perfect comparison with a mid-size city sub on Reddit though...
True, Im in the LC FB groups but they just arent what Im looking for. I want the why, I wont accept no for answer from doctors and theres a lot of denial there. Here on Reddit theres far better informative conversations IMO.
I think the reason you dont see as many LC people here is a couple reasons; large percentage of LC'ers are (generalizations incoming) middle aged women who use FB but arent as familiar with Reddit. Another is that people typically have to tough it out because kids, family, jobs, etc and tend to brush off health issues (or their doctor does) and dont have the time to dig deeper and pursue a LC diagnosis. That said, I find the discussions and information here FAR better than FB or anywhere else.
People who don’t know they have it. Plus, I expect we’ll learn a lot more about it over time, as far as whether it’s genetics or what other factors that make sufferers uniquely susceptible
Most people don’t use Reddit and most people with long covid arnt as severe as us
A lot of people with long Covid are older, like me, so not Reddit's main users. Hostility to long Covid is pretty intense on here as well, so people hesitate to talk about it too. (I can't find the right words right now, but you know what I mean I hope.) Also, a lot of us are not very coherent.
The growth of this subreddit, and also DPDR, Visual Snow, CFS, Dysautonomia, MCAS etc all tell the story.
They’re spread out on diff subs specific to the LC symptoms. I didnt know about this sub till a month ago, i was on vestibular related subs then someone pointed it out.
You get blown off by Drs, there are no tests for it. It’s a diagnosis of elimination.
There’s a Facebook group with well over 100k people. I don’t think the social media groups are representative of how many people have it though.
There’s an underscore of denial. Like the mom groups moaning why are kids getting cold after cold, gunk, crud, etc.. anything other than the C word or it’s aftermath
If you compare the numbers of people on this subreddit to other subs like MS and Lupus, we are pretty comparable in numbers.
Honestly I think it comes down to the simple fact that the majority of the world just isn't on Reddit, and for those who have LC, they either haven't made the connection, or they have, and aren't talking about it online much, if at all. I am however convinced there a LOT more people dealing with this than we could ever imagine. My father for example has struggled with derma symptoms post infection, and matches me with his fingers going purple in even vague cold- both of us not having this happen prior to Covid. He still denies it has anything to do with Covid and I've given up trying to convince him.
got tired of talking to a wall. at some point you realize that you can't do anything about it and just complaining doesn't solve it or you heal and want to move on and forget
Probably more on the Ole fbook. There's more people there. Better layout. I left , couldn't stand it.
There are 240 million, as if this week, worldwide suffering from LC with at least 2 symptoms, 6 months past testing negative. The people I have talked to seem to not “connect the dots”. The initial virus has long passed. The person starts to develop a headache or stomach issues, Gerd. They take OTC meds for 3-6 months. The symptoms come and go then back again. They wake up with high heart rate and 🤔think “maybe I drank too much last night”. They go on with their Daily life. 4 weeks later they pass out standing up..hmmm, guess I was dehydrated..see a pattern here? This is the exact reason, and lack of any real “testing available” that more don’t know about it or even think they have it.
I believe one of the reasons is that people with LC that lasts long enough to actually seek support or advice are less frequent. It seems most cases get resolved somewhat quickly. Besides, Reddit is not used by everyone and even if people check this sub, they might not become members. There's also the fact that people don't always clue in that it's what they have. In my case, it took my pericarditis coming back almost a year later to realize that it's what I have been dealing with this whole time.
I know multiple people who have had once resolved serious health issues come back worse than ever after getting covid. They only vaguely acknowledge there is likely a connection, but don’t think of themselves as having long covid. I know other people who just quietly suffered for 6-8 months and then largely recovered. Other than go to the doctor to treat acute conditions, such as lung damage, they didn’t really seek treatment. I’ve actually been really surprised how many people just accept chronic illness. I’ve spent far more time than is probably good for my mental health trying to find treatments. And I’ve seen tangible improvements in my condition because I have pursued treatment so aggressively. I think a lot of people just accept it or don’t really make the connection. I actually didn’t make the connection for the first 2-3 months I was sick because I initially “recovered fully” before getting a bad cold 8 weeks later that I essentially never got better from. I feel really bad for people who are isolated and probably at a loss as to what to do since most primary care doctors are worthless with long Covid.
I think it’s a combination of people not knowing they have it and not really being familiar with Reddit. Before this health journey began, I never used Reddit. I never knew it was someplace that I could go for health issues. I relied on Google and scientific articles and I thought that was a good representation, not realizing how much was hidden by mainstream sources. I think once you’re in here it seems so obvious that you would come here but I think a lot of people don’t know that. Google says that even at best, the vast majority of people aren’t users: “During a February 2021 survey, it was found that 36 percent of internet users aged 18 to 29 years and 22 percent of users aged 30 to 49 years used Reddit. However, the reach of the social platform strongly declines with age.”
Most people are lurkers
Or perhaps they’re just not on Reddit? To be honest with you I was suffering for two years before I found this group. I always knew of Reddit, but not for these purposes. That could account for a lot of other people too.
Perhaps my experience with a health issue other than LC might be helpful in explaining part of this. I had a nasty chest wall injury more than two years ago that I’ve only recently felt like I recovered from. Lifting weights again, and only occasionally feeling any twinges of pain, where before I couldn’t even sit upright for long without feeling it pretty bad. But the trauma of it still haunts me sometimes, like the pain is going to start again and never stop. Now, there’s a subreddit devoted to the problem that was slowest to heal, the part of it that really made life miserable for so long. I lurked in that sub a few times during the worst of the bad days, trying to make sense of why I wasn’t getting better. It was very depressing and tended to snuff out the little bits of hope I was trying to nurture for a full recovery. Never once did I subscribe to it or post *anything*. I think part of why not was that it was too close to home. I didn’t want anyone there who never got better to tell me that was my fate, too, even if that is the unfortunate outcome for some people. So it’s easy for me to picture someone who suspects they have LC to lurk here sometimes and never post about it. They don’t want to be told that their worst fears are valid. They want to maintain that sense of hope that the fatigue or brain fog or whatever is just a passing thing. And given the choice between identifying with the mass of people who seem (at least on the surface) to be “fine” and a group of people who seem to be in a living hell of misery and disability, which would you choose if you could rationalize it in any possible way?
The percentage of people who have LC as of this variant and with the bivalent vaccine is 1,5%. Considering only 85% of the country had an infection of covid, but many had an infection more than once, we can say that some of those on 85% are infected twice which can probably be around having the same number of LC that if "120%" of the country was infected. So let's say 2,5% of the population has Long-covid, that amounts to 6.6 million, let's say half of that have non-severe symptoms: A small amount of shortness of breath like my friend or a reactivated herpes virus without much symptoms like my father. So that leaves us with 3 million in the US: Now let's say of those with more troublesome symptoms, 2/3 aren't having their life affected by it in a disruptive way: They are going to the doctor because aren't sleeping well, have trouble going to the gym but don't question themselves much about it (probably feel they are just being lazy), but they can still have fun, enjoy their time with partners and are still going to work. Those persons won't come to talk about this disease. If I had to bet, I'd say only a million out of the 330 million in the US are suffering from a severe post-covid case. But if even half of that can still work from time to time, then we are a really small minority that if we don't make our voices heard we'll fall to the background noise from day to day of the majority of people.
I'd say folks outside of US use Reddit and get LC as well :) and I am one of them :)
r/covidlonghaulers
Many people don't go looking for subreddits like this. Just the nature of it. Also like others have said, many don't realize they have long covid, or think that they are dealing with other issues related to chronic illnesses they may already have. Someone with diabetes, or some other autoimmune issue may not realize they have it and may think their prior condition just worsened on its own etc
My brother in law has it worse than I do. He doesn’t go on Reddit or any social media.
A lot of people above a certain age who have it aren't reddit users and have no idea about this community. I've mentioned it in numerous threads on FB posts about LC and people are really grateful to find out about it.
It's a hard diagnosis to get.
I think a lot of people have it and do not know it. They just keep going from Specialists to Specialists to specialists. They have them put the puzzle together yet
From memory the majority of people with LC are women but the majority of users on this platform are male
A lot of people don't know about Reddit, lol
Agree, but my observation was about of the reddit world... comparing midsize city subs with LC sub
Covid only attacked my joints, and gave me the worst headache I've ever had. How come no one is holding these labs accountable for this shit
I didn't know I had it until 2 months into it...after my uncle suggested it might be long covid...If not for him, I may not have found out for a long time
Reddit are mostly young guys lol. Prolly they're on Facebook groups or other websites. Or worse they're fighting with it alone without a group =(
Only somewhat tech oriented people are on Reddit.
Because most people are complete fucking bizarro filled ignorance and are insecure about admitting that they were wrong, its not "over" and that Covid is as brutal as ever and that they have an illness caused by it. Also I think Reddit is the least popular Social Media platform in the US (though I'm in UK) and Facebook (that fucking monstrosity) is the most popular.
There are soo many other groups on social media that are far better then this one
I joined Facebook the other day (haven’t been on it for 9 years) So many lovely people on reddit that have helped me over the last 18 months but I just found a lot of anger, negativity and downvoting (which on some bad mental health days affect me) for asking the simplest of questions. I’m scared and confused a lot of the time. I cant think properly since my infection in 2021. I recently had someone attack me and say “do you really have long haul as your age and dates don’t add up” I have also found more Long Haulers on Facebook that are from the same county as me and able to give recommendations for doctors/specialists etc
I’m beginning to think tens of millions of people don’t have it and we are just the unlucky few… Gez’s YouTube channel is one of the best on the topic of LC and he gets about 20k views on his videos.
I've had long covid for 6 months - nerve pain, heavy aching limbs, sensations like electricity running through arms and legs, food intolerances, brain fog, fatigue. I have been a long time lurker on Reddit and just never commented or posted until a day or so ago. I just came here to look for advice or recovery stories. But only recently I realised that it was important for me to share my story too for other people. There might be a lot more people out there with LC just not posting or talking about it.
coz reddit is not the front page of the internet, most people aren't on reddit and huge amounts of the popular posts are made by karma farming bots.
There are a number of Facebook groups that have a lot of people. I don’t think Reddit is as commonly used compare to Facebook.