5 ms·

I'm someone who actually has some form of long-covid or perhaps just damage from the virus. March 12th will be the one year mark for me. I was a mild case, sta

I'm someone who actually has some form of long-covid or perhaps just damage from the virus. March 12th will be the one year mark for me. I was a mild case, stayed home for 2 days, right back on my feet after that. 32M, no health issues. Symptoms just lingered and lingered. They would go away then come back days later. Mainly sinus pressure and dizziness. Then 4 months on I started getting intense chest pain and shortness of breath. Cardiologist noted some abnormalities but was not concerned. Put me on beta blockers. Fast forward to today and I still have shortness of breath, some cardiac symptoms, and random pains in my left arm and back. It really eats into my quality of life, but I am thankful I don't have it as bad as many others. I keep tabs on the long haul community to see if researchers have figured anything out/others found anything that helps. So far there really isn't much. I'll note that there are a surprising number of people who aren't aware they are long hauling (they "recovered" and then months later developed issues - not making the connection until stumbling upon another long hauler) and that people are really hostile about the idea of long hauling. I don't know if it's a coping mechanism or what, but people want (need?) to hear "I fully recovered" when they ask how you are doing. I don't tell anyone except those close to me about it, it's completely not worth the debate they are going to want to have about the validity of my symptoms. It's pretty common in the LH community to not be publicly upfront about it because of this. There are plenty of people who know me, know I got sick, and will relay that I fully recovered.

in_cahoots 6y ago
Were you able to get tested? For some reason I’ve gotten the impression that a disproportionate number of long-haulers got sick in March or April and never had a confirmed test. I’m not sure whether that points to a change in the virus or a psychosomatic component to being infected with an unknown virus at the beginning of the pandemic.
- Itsdijital 6y ago
  I could not get tested in March. I tested positive for antibodies in August. I live right outside NYC, which based on April antibody testing, likely had 250,000 to 500,0000 cases/day for about a 3 week period from late Feb into March. This was when the media was still debating about whether or not the virus was a big deal and Trump was saying just a few people were sick.
- wincy 6y ago
  My wife and I got sick in early March 2020 and she coughed until July. We were never able to get a positive test, as they weren’t available unless you went to the hospital. I also had a negative antibody test. She started coughing again last month. It’s possible it’s not COVID but it seems very strange she’d develop this chronic cough right after a global respiratory disease pandemic sweeps the world.
  - jennyyang 6y ago
    I don't know where you live, if you even live in the US, but that is a travesty that you weren't able to access quick testing. In the Bay Area, I get free testing through Project Baseline. My family has alternated getting tested once every 2 weeks, since our assumption is that if one of us gets COVID, then all of us gets COVID. Collectively we have been tested around 15 times,including children, and it's a breeze to get here. But overall lack of testing capability is one of the stupidest things that happened over this past year. The US should have free testing available to everyone at least once a week. The capacity to test 100 million people in 2 days should have been built up, because testing is so vitally important to understanding what is going on. The fact we don't have that should be a crime because it has lead to so many deaths. One thing to keep in mind is that a very bad flu went around in February/March. I know at least 10 people that thought they had COVID but didn't, because this flu was occurring at the same time. The other thing that many people have gotten mixed up with COVID is severe allergies. Try taking daily antihistamine to see if that clears up her coughing. Antihistamines need to be taken for weeks at a time in order to get good effectiveness, doing it one-off isn't nearly as effective. Her illness last March, be it COVID or not, may have made her more susceptible to alleriges or anything that irritates her lungs.
    - janekm 6y ago
      Just as an aside, it's not necessarily the case that all your family would get infected if one of you does... in studies the proportion of family members who get infected is between 10-50%: https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2774102 https://jamanetwork.com/journals/jamanetworkopen/fullarticle... My wife got infected around 10 days ago (PCR confirmed last Wednesday, now seemingly recovered and testing negative) and while I exhibited some very mild cold symptoms (fatigue, joint pain, a single high temperature reading) it never went beyond that (so far, knock on wood) and I tested negative when tested at the same time... Good point about the flu. I also had some flu symptoms around that time and always tested negative on antibody tests.
halfjoking 6y ago
Exactly. It's best just to lie and say I'm 100% recovered. Just did it last weekend at my dad's 60th bday party. My one year is also coming up soon, and I still get mild symptoms like the "hot skin" and bulging veins but otherwise I'm better than 99% of people on /r/covidlonghaulers. I'm tired of explaining it. I'm tired of everyone's advice. In the rare event I'm doing something social during this pandemic I just try to forget about it and not think about my relapses. LongCovid f-ing sucks.
npunt 6y ago
> people are really hostile about the idea of long hauling Definitely, and true of any poorly understood illness. A common response when people hear about suffering without a simple explanation is fear and rejection. It reminds them of their mortality, it breaks their just-world hypothesis, and it forces them to be burdened with the knowledge that people suffer and we don't know why because the world is vastly more complex than we understand. Many people would rather reject people's suffering than live with these feelings.
bouncycastle 6y ago
It could be caused by stress & anxiety, especially if the cardiologist is not concerned. I think all these lockdowns, travel restrictions and social distancing are not improving our psychiatric health either.
- keane 6y ago
  I think another effect we could be seeing is costochondritis, a pain/soreness which is known to be caused by viral infection and the stress of this year is potentially making worse.
- Itsdijital 6y ago
  It's not like that. There is definitely something damaged or some wires crossed. Stress and anxiety make it worse, but it's still there all the time regardless. Full deep breaths cause all kinds of aches to shoot around my torso and laughing is outright painful. The skin on my hands shriveled so much they look like 60 yr old hands. I have head aches all the time, whereas before I never got them. At anytime I can feel my heartbeat throughout my body, especially in my hands and neck. My feet get so cold now I feel like i could get frostbite in a 70F room. Hard exertion quickly brings me to a point where I almost faint. I get dizzy periods usually for at least a few hours a day. Also this year was hardly stressful/anxiety inducing for me, at least on the day to day level. Other periods of my life were orders of magnitude worse with typical stress/anxiety symptoms. Nothing like this.
  - bouncycastle 6y ago
    Stress and anxiety often results with real physical symptoms, like high blood pressure and it does make your skin go as you described. My main giveaway was when you mentioned cardiovascular symptoms, but your cardiologist was not concerned. And then there's the feedback loop, where the stress from the symptoms causes more stress.
    - daenney 6y ago
      Unless you're an actual physician with expertise in this area and have access to their medical records, please stop trying to invalidate their pain and experiences and explain things away. This behaviour is the reason people stop talking about it and part of why we still know so little about the long-term consequences of it all.
phyalow 6y ago
Very similar experience and age to me. I tested positive for Covid late March last year. I was moderately sick for 2 weeks, chest pains, tight chest, loss of smell etc, also had a weird rash on my shins (mini blood blisters). Any way I thought I was better, I had a bout of small relapses and general fatigue through April then come mid May, I basically had a huge relapse in symptoms, admitted to hospital with Myocarditis (heart inflammation caused by my immune response to the virus), highly elevated troponin levels (indicators of cardiac damage) - which meant bed rest for 3 months. One other weird symptom I had that was confirmed by MRI, was the V5 nerve on my cheek had its Myelin protein sheath stripped/damaged by my immune response/covid which has caused me facial pain (Neuralgia) for most of the past year. According to the Neurologist I saw this is uncommon in Covid, but happens to MS patients and more commonly post other viruses. Anyway I am much better now and barely have any symptoms now with the exception of getting tired much more easily. I wouldnt wish this disease on anyone. I hope your symptoms improve. I also have told basically no one except my immediate family about my symptoms as its not worth the pain of discussion!
- mentos 6y ago
  My dad was in the hospital with Covid for 3 weeks 1 completely unresponsive last March 2020 from the NYC strain. Everyone in my family (5 people) developed primary symptoms but me (33 years old). I had a very strange course of leg/muscle pain, scratchy throat the first month then chest/arm pain for another month with GI issues the next. My 3 year old niece who had beaten the primary symptoms relapsed with a fever end of September and right around that time I started getting neurological issues where I was dizzy and had a burning cheek and buzzing/tingling fingers/toes with mild muscle twitching in my face. 6 months later I’m much better but still grappling with dizzyness and nerve pain in my cheek which sounds similar to you. I’m convinced my immune system is going nuts from exposure to Covid and I fear I may have developed a more long term auto immune issue. Probably time I take these symptoms to a neurologist. Did the Dr prescribe you anything for your myelin damage?
  - memossy 6y ago
    You may wish to look into Clemastine/Tavegil antihistamine, easy to get over the counter.
AntiImperialist 6y ago
In other news, a number of people who stubbed their toes developed ass cancer.
memossy 6y ago
I was helped with my sinus pressure and dizziness by 2 x 1g N Acetyl Cysteine per day. Very short half life, very quick response (if any), available on Amazon.
sjwalter 6y ago
Interesting. My grandfather died a few days after getting the "vaccine" (which isn't really a vaccine because it doesn't stop getting the illness or transmitting it). So did a bunch of other old guys he knew. Many such cases.
Mediterraneo10 6y ago
> people are really hostile about the idea of long hauling. This is largely because the self-identified "long COVID" community on FB groups etc. (as opposed to the scientific community studying the phenomenon) is behaving very similarly to the "chronic Lyme" groups that flourished just before COVID. Many of those people truly felt distress and, indeed, one shouldn’t deny their symptoms. However, any link between those symptoms and Lyme disease was extremely questionable, to put it mildly. The same holds now with COVID, and many of the "long COVID" self-reporters were never even formally diagnosed positive for the virus in the first place.
- wpasc 6y ago
  Read a little up on the history of the medical community underdiagnosing or ignoring autoimmune diseases because they are harder to confirm. Those autoimmune diseases are very real and given the history of underdiagnosing diseases that are harder to track, we should take seriously the reports of symptoms by people as more than hypochondria.
  - lamontcg 6y ago
    Yeah, we need to believe autoimmune / long COVID sufferers first. There's a parallel here with default assumptions of sexual assault / harassment being against the victim because of the existence of some claims that were clearly manufactured. (And not entirely surprisingly the victims of autoimmune diseases tend to be disproportionately women, so there's more than just a superficial similarity here)
- alchemism 6y ago
  As far as the relation to COVID is concerned, I would look into the symptom severity of untreated chronic Lyme as opposed to treated. Psychosomatism may be an issue — but consider also that the neurological mechanisms governing it may themselves be degraded through the course of such infections.
- eli 6y ago
  I guess at this point it's easy enough to get an antigen test to see if you had it, but I'm sure a great many people who got Covid last summer didn't get a positive test. A lot of places the official advice was not to bother so long as symptoms were manageable at home.
koheripbal 6y ago
Did your doctors have you try blood thinners? I read a theory that prolonged symptoms are the result of persistent blood clots in various organs.
bengale 6y ago
About two years ago I had a pretty bad viral infection. Doctor said they weren't really sure what it was at the time, advised to keep hydrated, well rested, etc and to come back if things got really bad. I ended up in A+E a couple of times where I thought I was having a heart attack, Apple Watch had my heart rate at over 200 when I was just laying in bed. All they could find in tests were that might white blood cell count was really high. The main illness lasted about 4 weeks I think, maybe a little longer to really be 'back on my feet' but I was in bed for most of the 4 weeks, and I lost about 30lbs over the whole time where I had zero appetite. But to be completely honest I don't think I ever fully recovered. Even now my fitness level must only be about 50% of what it was before, I feel like I aged about 10 years in the course of a month or so. I'm still on beta blockers, had a bunch of tests on my heart and all the cardiologist can suggest is that it might go away in a couple of years. But for now I get palpitations and general dizzy sick feeling at least once a fortnight and it stays around for a few days at a time. It's so strange to think about what a difference there is before and after. I was just getting ready for a holiday with some friends to Octoberfest before I got ill, but the idea of being able to go out like that for four days is insane, there's no way I could do it. That and I had to quit drinking alcohol completely as it seems to really exacerbate the heart issues. I've read quite a lot of people talk about post-viral issues, and I wonder if the long COVID stuff is going to turn out to be something quite similar. Would be nice to have more research being done to see if they can help at all, as it can be quite hard now to get a doctor to take it seriously. I get the impression from a conversation with my doctor that the reason they were more willing to do tests for me was that I had no history with going to the doctor before that unless I had some sort of physical injury, like a broken shoulder. I think we maybe living with more than the economic damage for quite sometime after this is all said and done. Can only hope for the best for people that are dealing with it longer term.

in_cahoots 6y ago

Were you able to get tested? For some reason I’ve gotten the impression that a disproportionate number of long-haulers got sick in March or April and never had a confirmed test. I’m not sure whether that points to a change in the virus or a psychosomatic component to being infected with an unknown virus at the beginning of the pandemic.

Itsdijital 6y ago
I could not get tested in March. I tested positive for antibodies in August. I live right outside NYC, which based on April antibody testing, likely had 250,000 to 500,0000 cases/day for about a 3 week period from late Feb into March. This was when the media was still debating about whether or not the virus was a big deal and Trump was saying just a few people were sick.
wincy 6y ago
My wife and I got sick in early March 2020 and she coughed until July. We were never able to get a positive test, as they weren’t available unless you went to the hospital. I also had a negative antibody test. She started coughing again last month. It’s possible it’s not COVID but it seems very strange she’d develop this chronic cough right after a global respiratory disease pandemic sweeps the world.
- jennyyang 6y ago
  I don't know where you live, if you even live in the US, but that is a travesty that you weren't able to access quick testing. In the Bay Area, I get free testing through Project Baseline. My family has alternated getting tested once every 2 weeks, since our assumption is that if one of us gets COVID, then all of us gets COVID. Collectively we have been tested around 15 times,including children, and it's a breeze to get here. But overall lack of testing capability is one of the stupidest things that happened over this past year. The US should have free testing available to everyone at least once a week. The capacity to test 100 million people in 2 days should have been built up, because testing is so vitally important to understanding what is going on. The fact we don't have that should be a crime because it has lead to so many deaths. One thing to keep in mind is that a very bad flu went around in February/March. I know at least 10 people that thought they had COVID but didn't, because this flu was occurring at the same time. The other thing that many people have gotten mixed up with COVID is severe allergies. Try taking daily antihistamine to see if that clears up her coughing. Antihistamines need to be taken for weeks at a time in order to get good effectiveness, doing it one-off isn't nearly as effective. Her illness last March, be it COVID or not, may have made her more susceptible to alleriges or anything that irritates her lungs.
  - janekm 6y ago
    Just as an aside, it's not necessarily the case that all your family would get infected if one of you does... in studies the proportion of family members who get infected is between 10-50%: https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2774102 https://jamanetwork.com/journals/jamanetworkopen/fullarticle... My wife got infected around 10 days ago (PCR confirmed last Wednesday, now seemingly recovered and testing negative) and while I exhibited some very mild cold symptoms (fatigue, joint pain, a single high temperature reading) it never went beyond that (so far, knock on wood) and I tested negative when tested at the same time... Good point about the flu. I also had some flu symptoms around that time and always tested negative on antibody tests.

halfjoking 6y ago

Exactly. It's best just to lie and say I'm 100% recovered. Just did it last weekend at my dad's 60th bday party. My one year is also coming up soon, and I still get mild symptoms like the "hot skin" and bulging veins but otherwise I'm better than 99% of people on /r/covidlonghaulers. I'm tired of explaining it. I'm tired of everyone's advice. In the rare event I'm doing something social during this pandemic I just try to forget about it and not think about my relapses. LongCovid f-ing sucks.

npunt 6y ago

> people are really hostile about the idea of long hauling Definitely, and true of any poorly understood illness. A common response when people hear about suffering without a simple explanation is fear and rejection. It reminds them of their mortality, it breaks their just-world hypothesis, and it forces them to be burdened with the knowledge that people suffer and we don't know why because the world is vastly more complex than we understand. Many people would rather reject people's suffering than live with these feelings.

bouncycastle 6y ago

It could be caused by stress & anxiety, especially if the cardiologist is not concerned. I think all these lockdowns, travel restrictions and social distancing are not improving our psychiatric health either.

keane 6y ago
I think another effect we could be seeing is costochondritis, a pain/soreness which is known to be caused by viral infection and the stress of this year is potentially making worse.
Itsdijital 6y ago
It's not like that. There is definitely something damaged or some wires crossed. Stress and anxiety make it worse, but it's still there all the time regardless. Full deep breaths cause all kinds of aches to shoot around my torso and laughing is outright painful. The skin on my hands shriveled so much they look like 60 yr old hands. I have head aches all the time, whereas before I never got them. At anytime I can feel my heartbeat throughout my body, especially in my hands and neck. My feet get so cold now I feel like i could get frostbite in a 70F room. Hard exertion quickly brings me to a point where I almost faint. I get dizzy periods usually for at least a few hours a day. Also this year was hardly stressful/anxiety inducing for me, at least on the day to day level. Other periods of my life were orders of magnitude worse with typical stress/anxiety symptoms. Nothing like this.
- bouncycastle 6y ago
  Stress and anxiety often results with real physical symptoms, like high blood pressure and it does make your skin go as you described. My main giveaway was when you mentioned cardiovascular symptoms, but your cardiologist was not concerned. And then there's the feedback loop, where the stress from the symptoms causes more stress.
  - daenney 6y ago
    Unless you're an actual physician with expertise in this area and have access to their medical records, please stop trying to invalidate their pain and experiences and explain things away. This behaviour is the reason people stop talking about it and part of why we still know so little about the long-term consequences of it all.

phyalow 6y ago

Very similar experience and age to me. I tested positive for Covid late March last year. I was moderately sick for 2 weeks, chest pains, tight chest, loss of smell etc, also had a weird rash on my shins (mini blood blisters). Any way I thought I was better, I had a bout of small relapses and general fatigue through April then come mid May, I basically had a huge relapse in symptoms, admitted to hospital with Myocarditis (heart inflammation caused by my immune response to the virus), highly elevated troponin levels (indicators of cardiac damage) - which meant bed rest for 3 months. One other weird symptom I had that was confirmed by MRI, was the V5 nerve on my cheek had its Myelin protein sheath stripped/damaged by my immune response/covid which has caused me facial pain (Neuralgia) for most of the past year. According to the Neurologist I saw this is uncommon in Covid, but happens to MS patients and more commonly post other viruses. Anyway I am much better now and barely have any symptoms now with the exception of getting tired much more easily. I wouldnt wish this disease on anyone. I hope your symptoms improve. I also have told basically no one except my immediate family about my symptoms as its not worth the pain of discussion!

mentos 6y ago
My dad was in the hospital with Covid for 3 weeks 1 completely unresponsive last March 2020 from the NYC strain. Everyone in my family (5 people) developed primary symptoms but me (33 years old). I had a very strange course of leg/muscle pain, scratchy throat the first month then chest/arm pain for another month with GI issues the next. My 3 year old niece who had beaten the primary symptoms relapsed with a fever end of September and right around that time I started getting neurological issues where I was dizzy and had a burning cheek and buzzing/tingling fingers/toes with mild muscle twitching in my face. 6 months later I’m much better but still grappling with dizzyness and nerve pain in my cheek which sounds similar to you. I’m convinced my immune system is going nuts from exposure to Covid and I fear I may have developed a more long term auto immune issue. Probably time I take these symptoms to a neurologist. Did the Dr prescribe you anything for your myelin damage?
- memossy 6y ago
  You may wish to look into Clemastine/Tavegil antihistamine, easy to get over the counter.

AntiImperialist 6y ago

In other news, a number of people who stubbed their toes developed ass cancer.

memossy 6y ago

I was helped with my sinus pressure and dizziness by 2 x 1g N Acetyl Cysteine per day. Very short half life, very quick response (if any), available on Amazon.

sjwalter 6y ago

Interesting. My grandfather died a few days after getting the "vaccine" (which isn't really a vaccine because it doesn't stop getting the illness or transmitting it). So did a bunch of other old guys he knew. Many such cases.

Mediterraneo10 6y ago

> people are really hostile about the idea of long hauling. This is largely because the self-identified "long COVID" community on FB groups etc. (as opposed to the scientific community studying the phenomenon) is behaving very similarly to the "chronic Lyme" groups that flourished just before COVID. Many of those people truly felt distress and, indeed, one shouldn’t deny their symptoms. However, any link between those symptoms and Lyme disease was extremely questionable, to put it mildly. The same holds now with COVID, and many of the "long COVID" self-reporters were never even formally diagnosed positive for the virus in the first place.

wpasc 6y ago
Read a little up on the history of the medical community underdiagnosing or ignoring autoimmune diseases because they are harder to confirm. Those autoimmune diseases are very real and given the history of underdiagnosing diseases that are harder to track, we should take seriously the reports of symptoms by people as more than hypochondria.
- lamontcg 6y ago
  Yeah, we need to believe autoimmune / long COVID sufferers first. There's a parallel here with default assumptions of sexual assault / harassment being against the victim because of the existence of some claims that were clearly manufactured. (And not entirely surprisingly the victims of autoimmune diseases tend to be disproportionately women, so there's more than just a superficial similarity here)
alchemism 6y ago
As far as the relation to COVID is concerned, I would look into the symptom severity of untreated chronic Lyme as opposed to treated. Psychosomatism may be an issue — but consider also that the neurological mechanisms governing it may themselves be degraded through the course of such infections.
eli 6y ago
I guess at this point it's easy enough to get an antigen test to see if you had it, but I'm sure a great many people who got Covid last summer didn't get a positive test. A lot of places the official advice was not to bother so long as symptoms were manageable at home.

koheripbal 6y ago

Did your doctors have you try blood thinners? I read a theory that prolonged symptoms are the result of persistent blood clots in various organs.

bengale 6y ago

About two years ago I had a pretty bad viral infection. Doctor said they weren't really sure what it was at the time, advised to keep hydrated, well rested, etc and to come back if things got really bad. I ended up in A+E a couple of times where I thought I was having a heart attack, Apple Watch had my heart rate at over 200 when I was just laying in bed. All they could find in tests were that might white blood cell count was really high. The main illness lasted about 4 weeks I think, maybe a little longer to really be 'back on my feet' but I was in bed for most of the 4 weeks, and I lost about 30lbs over the whole time where I had zero appetite. But to be completely honest I don't think I ever fully recovered. Even now my fitness level must only be about 50% of what it was before, I feel like I aged about 10 years in the course of a month or so. I'm still on beta blockers, had a bunch of tests on my heart and all the cardiologist can suggest is that it might go away in a couple of years. But for now I get palpitations and general dizzy sick feeling at least once a fortnight and it stays around for a few days at a time. It's so strange to think about what a difference there is before and after. I was just getting ready for a holiday with some friends to Octoberfest before I got ill, but the idea of being able to go out like that for four days is insane, there's no way I could do it. That and I had to quit drinking alcohol completely as it seems to really exacerbate the heart issues. I've read quite a lot of people talk about post-viral issues, and I wonder if the long COVID stuff is going to turn out to be something quite similar. Would be nice to have more research being done to see if they can help at all, as it can be quite hard now to get a doctor to take it seriously. I get the impression from a conversation with my doctor that the reason they were more willing to do tests for me was that I had no history with going to the doctor before that unless I had some sort of physical injury, like a broken shoulder. I think we maybe living with more than the economic damage for quite sometime after this is all said and done. Can only hope for the best for people that are dealing with it longer term.