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Long Covid - Experiences, Symptoms, Ongoing Effects... (1 Viewer)

urbanhack

urbanhack

Fight The Power!
Starting this thread because I've got long covid symptoms more than a year after having covid. I'm curious if anyone else here (or family/friends) has had any lingering issues. I still don't have my full taste and smell back. I'd say my taste is at 90 to 95% but smell maybe only at 75%. I was just doing some research and saw this from the mayo clinic which describes exactly what I'm experiencing especially the last sentence.

Could you experience unusual tastes and smells?

Phantosmia is the perception of a smell that doesn't exist, much like phantom limb pain. Regardless of the cause of loss of smell, patients can experience phantosmia. Often the phantom smell is unpleasant, such as the smell of smoke or rotten meat. Also, normally pleasant smells can be perceived as foul.
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I've also noticed that I've felt more dizzy and disoriented occasionally. I've always had a fear of heights but for some reason that fear has gotten abnormally exacerbated the last six months or so. I have no idea if this is related to Covid but nothing else has changed in my life.

Curious if anyone has experienced this or other long term effects of Covid.

 
I had COVID just under 6 months ago and my sense of smell is still dulled, with the occasional "it should smell good but smells like an ashtray". My sense of taste seems to be around 85% right now, but my sense of smell is still in the 60-75% range. I could have it WAY worse than that (my only other  symptoms were mild fatigue and a slight headache - thanks vaccinations!), but wonky taste/smell is weird and kind of sucks.

 
Only know a few people with long symptoms

  • 1 with no taste smell at all 9 months later from an alpha infection early 2021.  Only eats mashed potatoes and bread, and takes a multivitamin and goes in for blood work to make sure isn't getting some deficiency.  Also in treatment for serious depression.   Absolutely no improvement since infection in this area.
  • 1 with no smell and still altered taste, but only some things (bitter mostly is inedible).  Seems to be slowly getting better.  Got a little better after vaccination, and has seems to be progressing to normal on taste and some smells are back.  
  • 1 11yo child which is the saddest, parents passed on the vax, got covid August.  Hasn't been able to be in school more than 2hrs a day since, and sleeps about 18hrs a day.  Multiple people in her mom's side of the family had strange symptoms ranging from extremity issues, to tounge issues but they resolved more or less except hers.  
I know a handful that were very sick with it that still can't really exercise like they used to from no-vax Delta.  Not sure if those count as they are fairly recent. Nothing I know of that caused problems with omi.

 
My brother still does not have his sense of smell back a year later.

We went skiing this last week and were driving up i70 and there was a 18 wheeler with one of its wheels on fire. My brother could not even smell burning rubber, which if you have ever smelled burning rubber, it is not a subtle smell.

 
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urbanhack said:
Starting this thread because I've got long covid symptoms more than a year after having covid. I'm curious if anyone else here (or family/friends) has had any lingering issues. I still don't have my full taste and smell back. I'd say my taste is at 90 to 95% but smell maybe only at 75%. I was just doing some research and saw this from the mayo clinic which describes exactly what I'm experiencing especially the last sentence.

I've also noticed that I've felt more dizzy and disoriented occasionally. I've always had a fear of heights but for some reason that fear has gotten abnormally exacerbated the last six months or so. I have no idea if this is related to Covid but nothing else has changed in my life.

Curious if anyone has experienced this or other long term effects of Covid.
Click to expand...


My friend that can't taste says any meat tastes like charcoal/smoke and coffee or other bitter foods makes her want to vomit.  Additionally, she had some vertigo like symptoms that she got some help with by acupuncture :shrug:   Could have just been placebo, but ok.  

 
My friend, 39, got COVID around Thanksgiving and lost all taste and smell. He said both are only partially back. He used to love coffee, wine and hoppy beer. He said coffe and IPAs are so bitter he can’t even stomach a sip and wine just tastes like vinegar. He’s only drinks vodka, gin or Mexican beer now.

 
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culdeus said:
My friend that can't taste says any meat tastes like charcoal/smoke and coffee or other bitter foods makes her want to vomit.  Additionally, she had some vertigo like symptoms that she got some help with by acupuncture :shrug:   Could have just been placebo, but ok.  
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Interesting.  Sounds almost identical to my situation. 

 
my friend's wife has had meningitis twice since contracting covid in early march 2020. she's had some of the same things you've mentioned related to smell/taste but doctors tell her meningitis is one of the potential side effects of having had covid and she's been ko'd by it twice in the last 18 months.

 
I shared this in the COVID vax thread (I think), but I'll repeat it here:

I tested positive for alpha 11/13/2020.  In the midst of it, I also suffered the comorbidities of pneumonia and bronchitis.  In total, I was out of work for a month.  When I had it, my breathing was such that to walk 30 steps from my couch to bed caused me to feel like I was suffocating.  Then, once I laid down, the feeling returned.  I had to calm myself down to keep from panicking.

Early 2021 I go to the doctor looking for help.  They sent me to physical therapy, where they treated me like I had COPD.  I went through that for 6 weeks, and while I felt better, it wasn't 100%.  I wait a few months, and then go back to the doctor again.  This time, I get referred to a pulmonologist who has a couple of tests run.  There was an EKG (which I needed for my cardiologist appointment, anyways), chest scan, and a another breathing test.  The pulmonologist says nothing is wrong physically, but acknowledges I'm not right.

So, here I am, 14 months later still having trouble breathing.  We got a foot of snow here and I couldn't help clearing the driveway because I don't have the ability to do that kind of thing.  I can walk short distances, but if I'm with someone, and they start walking away from me, I have to ask them to slow down.  I have a fitness watch that I wear to make sure my heart rate doesn't get too high - which it can now easily.  When it gets too high, I stop and take a break.

I had to have part of my work duties changed as a result.  Before, during storm restoration, I was considered a "hazard responder", going out and looking for wire down, and getting the information that a crew needs to restore service efficiently.  With probably 20 pounds of PPE (steel toed shoes, hard hat, etc.) trying to walk through woods or brushy areas would just destroy me.  My doctor wrote my boss a letter stating I can't do that anymore.  Now, I'm a dispatcher which I can do from my man cave.

ETA: I suffer from depression all the time and this has just made it much worse.  You can't imagine the feeling of being unable to do the things you used to.  Some of it is frozen rage that I want to physically attack anyone and everyone who had anything to do with creating this.

 
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In the Covid thread last fall, I described many of the things posted by others above, parosmia-related, that happened to a friend of mine and her daughter who is my son's age. She couldn't even be in the house when coffee was being made or food was being microwaved because it made her so nauseous. And there were only a couple of things she could eat for a while, because everything else tasted like ashtray or rancid meat.  Oddly enough, one she could tolerate was sushi. I think the other one was rice cakes, maybe?

The other couple of personal friends that I know that lost taste/smell, had it come and go intermittently for several months afterwards. 

 
Daughter is nine months into fatigue,  smell, taste issues that have been pretty bad.  Slightly gets better each week.  

 
Tom Servo said:
The pulmonologist says nothing is wrong physically, but acknowledges I'm not right.
Click to expand...


I was told I didn't have covid - but I had the same symptoms from late Oct '19 - Christmas.  Covid really broke out in what ...January, February '20 -  thought I was going to die on the couch.  I almost called 911 several times over that period, but it was 2-3am and I didn't want to scare the family.  I did nothing but sleep, sweat and hallucinate for over 8 weeks.  When I could get up and around some - I experienced the same as you did.  

I was x-rayed and tested for pneumonia - negative.  I guess I should get tested to see if I had it.  But there is no doubt that I still don't have the stamina/breathe I had before.  

 
I had covid around Thanksgiving 2020. Didn't have much for symptoms at the time. Still have a little more phlegm than before but that's it.

Hope you all are feeling better as soon as possible. 

 
Tom Servo said:
I shared this in the COVID vax thread (I think), but I'll repeat it here:

I tested positive for alpha 11/13/2020.  In the midst of it, I also suffered the comorbidities of pneumonia and bronchitis.  In total, I was out of work for a month.  When I had it, my breathing was such that to walk 30 steps from my couch to bed caused me to feel like I was suffocating.  Then, once I laid down, the feeling returned.  I had to calm myself down to keep from panicking.

Early 2021 I go to the doctor looking for help.  They sent me to physical therapy, where they treated me like I had COPD.  I went through that for 6 weeks, and while I felt better, it wasn't 100%.  I wait a few months, and then go back to the doctor again.  This time, I get referred to a pulmonologist who has a couple of tests run.  There was an EKG (which I needed for my cardiologist appointment, anyways), chest scan, and a another breathing test.  The pulmonologist says nothing is wrong physically, but acknowledges I'm not right.

So, here I am, 14 months later still having trouble breathing.  We got a foot of snow here and I couldn't help clearing the driveway because I don't have the ability to do that kind of thing.  I can walk short distances, but if I'm with someone, and they start walking away from me, I have to ask them to slow down.  I have a fitness watch that I wear to make sure my heart rate doesn't get too high - which it can now easily.  When it gets too high, I stop and take a break.

I had to have part of my work duties changed as a result.  Before, during storm restoration, I was considered a "hazard responder", going out and looking for wire down, and getting the information that a crew needs to restore service efficiently.  With probably 20 pounds of PPE (steel toed shoes, hard hat, etc.) trying to walk through woods or brushy areas would just destroy me.  My doctor wrote my boss a letter stating I can't do that anymore.  Now, I'm a dispatcher which I can do from my man cave.

ETA: I suffer from depression all the time and this has just made it much worse.  You can't imagine the feeling of being unable to do the things you used to.  Some of it is frozen rage that I want to physically attack anyone and everyone who had anything to do with creating this.
Click to expand...
Heel up well.

This sounds so much like what I experienced after have two PE's in my lungs in November 2009.

Had a great pulmonologist that repeatedly gave me great advice by saying it will take a long time to heal.  While I can do most things 13 years later, my stamina is still in the crapper.  

I didn't have any ash tray taste issues like many are having now, but my sense of taste on what I like and dislike changed dramatically.  Along with my metabolism.  It was like getting it all reset. 

The other great advice was to do only what I could repeat the next day.  Don't push yourself to hard.  I had six months in the beginning of feeling like ran a marathon just from getting up and going to the bathroom. 

Good luck.  

 
I don't know if it's long covid or not, but I do have a little brain fog in the morning.  Could be something else.   Harvard put out a pretty good article on the brain fog symptoms and how to treat it.

 
just chatted with an older friend of mine who got "mild" covid last May. she has developed a heart problem that doctors told her is viral. she's looking at getting a pacemaker because she's barely been able to walk across a room without getting winded for the last couple months.

sounds like she has been deteriorating pretty quickly the last couple months and it all started after she got covid.

 
Getzlaf15 said:
Heel up well.

This sounds so much like what I experienced after have two PE's in my lungs in November 2009.

Had a great pulmonologist that repeatedly gave me great advice by saying it will take a long time to heal.  While I can do most things 13 years later, my stamina is still in the crapper.  

I didn't have any ash tray taste issues like many are having now, but my sense of taste on what I like and dislike changed dramatically.  Along with my metabolism.  It was like getting it all reset. 

The other great advice was to do only what I could repeat the next day.  Don't push yourself to hard.  I had six months in the beginning of feeling like ran a marathon just from getting up and going to the bathroom. 

Good luck.  
Click to expand...
Thanks GB. If I do site visits/meet with customers/go out to take pictures for my hobby, I usually take a day off from a lot of physical exertion.  I feel some need to keep moving if for no other reason than to give me a reason to go on.  As I've told others, I go on because I have to.

 
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culdeus said:
Only know a few people with long symptoms

  • 1 with no taste smell at all 9 months later from an alpha infection early 2021.  Only eats mashed potatoes and bread, and takes a multivitamin and goes in for blood work to make sure isn't getting some deficiency.  
Click to expand...
If one has no taste or smell why only eat the blandest foods possible?

 
Wow. I didn't know this about everybody. I hope everybody heals from this. What a disaster. I'm sorry for the tribulations you guys have had to undergo. 

 
Good friend of mine still has less than perfect smell/taste, maybe a little more than halfway restored. From November 2020, pre vax. He also has some lingering brain fog and short term memory issues.

 
TripItUp said:
I don't know if it's long covid or not, but I do have a little brain fog in the morning.  Could be something else.   Harvard put out a pretty good article on the brain fog symptoms and how to treat it.
Click to expand...
I’ll search for it or if you get a chance can you link it? 
 

My son tested positive for flu/negative for Covid around the holidays so we assumed we all passed around flu. I noticed a couple days of weird smells so think it may have been Covid too. It went away after a few days but a couple weeks later I’m still feeling a brain fog. 
 

 
Nathan R. Jessep said:
In the Covid thread last fall, I described many of the things posted by others above, parosmia-related, that happened to a friend of mine and her daughter who is my son's age. She couldn't even be in the house when coffee was being made or food was being microwaved because it made her so nauseous. And there were only a couple of things she could eat for a while, because everything else tasted like ashtray or rancid meat.  Oddly enough, one she could tolerate was sushi. I think the other one was rice cakes, maybe?

The other couple of personal friends that I know that lost taste/smell, had it come and go intermittently for several months afterwards. 
Click to expand...


My niece (27 yrs. old) had COVID last February, so going on pretty much a year now. She suffers from parosmia. Many foods smell and taste like rancid meat. She sometimes has to walk out of the room when food is being cooked because the smell makes her sick. What food smells are OK and what ones are sickening seems to be pretty random. She uses a nose plug often when she eats to avoid the altered smells.

 
One of my favorite customers, maybe in his early 70s, has been suffering majorly since his infection in the summer of 2020. He had two separate 10 day hospital stays with about a week in-between. Before COVID he was in great shape and might have been on blood pressure meds otherwise completely healthy. COVID destroyed his lungs. He’s fine most of the time but every couple of months he has a flair up that puts him down for a couple weeks. His doctor has been doing his best to keep him out of the hospital. Just in the last month he’s been hit pretty hard and now appears to be getting treatment for pneumonia and may not be able to avoid the hospital this time.

 
https://mcisymposium.org/program/

A free 2-day virtual symposium in its 20th year. I organized the meeting for the first 10 years. Day 1, Feb 26, from 10:30 am to 12:30pm is a session on the neurological manifestations of COVID with presentations from 5 researchers in the USA with panel discussion and audience Q&A.

 
First guy I knew who got it, March 2020 so no vax, no treatments at the time. He says many foods taste bad like dirt and he can't smell anything.

 
I had a completely asymptomatic case over the summer that kicked my asthma into overdrive. Not realizing it was covid, I started dealing with it as allergies or some other issue with my asthma. When nothing was working and I started coughing up phlegm regularly, did they start thinking ti could be COPD (even though Ive never smoked a single cigarette in my life). Through the blood work ups they found my antibodies and confirmed the Covid, that was back in November'ish. Since then I have completely gone down hill. I can barely take a flight of stairs, I am exhausted all the time, I cannot focus on work and have trouble getting through the day. Thank god I work for myself in a desk job, but my client work is starting to get very backed up. I had to quit playing ice hockey and refereeing last year. I cant do anything around the house that would even be considered mildly strenuous. 

I'm working with a pulmonologist who is starting a new medication on Friday. Fingers crossed it helps. I also consulted with a Covid long haul dept at Mt Sinai Hospital in NYC and they say my story is common, and their recommendation is that my pulmonologist is doing all the right things and we need to wait it out. She did say that while it takes time, they have seen recovery in most patients. My concern though is for my other organs like kidneys, heart and brain. My pulseOx is in the 92-95 range (95 + above is normal), but I dont want to risk heart attack, stroke or other damage being I cant get enough oxygen into my body. I would say my lungs are at a 40% of what they should be. 
 

@Tom Servo 'm sorry you are going through this as well. I have been suffering from some depression as well as any physical activity I completely gone and I worry if I will ever get back to even being somewhat of my old self. 

 
My wife and I both got covid in January 2021, pre-vax. Neither of us really have our full taste and smell back yet but at least I only rarely get a "covid taste or smell" anymore. My parosmia lasted a few months. I joined a facebook group of Parosmia sufferers and it's heartbreaking reading the stories and makes me very thankful mine wasn't as bad as what some others are going through.

 
I'm in day 8 since I tested positive and while I've been feeling fine from the get go, I also lost my sense of taste and smell on day 4. Not liking the comments above that it may last awhile. :(

 
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Sorry to hear about all the things people have experienced.  I hope everyone recovers quickly and completely.

Real question.  If you've got these symptoms for months, how can you estimate your smell/taste at 85%, for example?

 
I had a bad episode of Delta in the summer of 2021. I can't drink Coke anymore; it tastes like some sort of poison or chemicals have been added. Mountain Dew, to a lesser extent, is also ruined for me. Those are the only things that are affected by taste/smell, although every now and then I do detect a weird smell that I just call my COVID smell. It's something I never smelled before and I can't really describe it other than a really bad smelling candle or something. I get tired easily from doing physical activities and I can't seem to get enough sleep. I'm tired every day and when I wake up, all I can think about is when I'm going to be able to take a nap. 

 
I hope that everybody that has posted in here dealing with long haul covid issues truly does recover fully. I know a lot of long haulers that are experiencing some of the same stuff being mentioned here—as well as a few others. A close family friend of ours (she’s 56 years old,  relatively good shape—probably needs to lose 20 lbs)—got covid before vaccinations are available—and ever since—she’s experiencing what can be described as being like moderate dementia.  A couple of my customers had had hearing issues since getting covid. They describe a relatively constant ringing sound.   I also know a lot of people that mention feeling quivers or tremors that are uncontrollable since getting covid.  I just wish that some of the people that only look at the mortality rate of covid can familiarize themselves with some of these battles that many people that survived covid are still dealing with.  

 
Those of you with the loss of smell/taste, have you done any recommended re-training of your olfactory system? I cant find the link, but I remember it including using concentrated scents like lemon, rosemary, etc. and deeply inhaling them multiple times a day. Apparently works, but I wonder if anyone's done this?
 
Pretty sure my mom has long covid. No Vax (don't get me started) and caught it back in the spring of 21. Fairly mild case but she's had all kinds of problems since then...despite being a very healthy woman in her mid 60's.

Lots of fatigue, soreness and tons of joint swelling. Constantly retaining fluid in her extremities. Been to a dozen doctors (neurologist, rheumatologist, internist) and they can't figure out what's wrong. Been tested for everything from sciliaic disease to MS to cancer. No end in sight and no consistent improvement in the past year.

She's now starred exploring holistic remedies (which has me very concerned) out of desperation. Wouldn't take a vaccine from Moderna but she'll take any supplement or herb that Tor Eckman recommends :wall:

No taste or smell issues as far as I know but the timing and inability to get a real diagnosis (plus the fact that she never got vaccinated) makes me think it's covid related. She's worries that she's gonna be like this forever now and it sucks
 
I’ve got one smell issue. Onions, and only onions, smell wierd to me. It’s hard to explain what the smell is, but it’s not pleasant. And I love onions!
 
urbanhack said:
Starting this thread because I've got long covid symptoms more than a year after having covid. I'm curious if anyone else here (or family/friends) has had any lingering issues. I still don't have my full taste and smell back. I'd say my taste is at 90 to 95% but smell maybe only at 75%. I was just doing some research and saw this from the mayo clinic which describes exactly what I'm experiencing especially the last sentence.

Could you experience unusual tastes and smells?

Phantosmia is the perception of a smell that doesn't exist, much like phantom limb pain. Regardless of the cause of loss of smell, patients can experience phantosmia. Often the phantom smell is unpleasant, such as the smell of smoke or rotten meat. Also, normally pleasant smells can be perceived as foul.
Click to expand...


I've also noticed that I've felt more dizzy and disoriented occasionally. I've always had a fear of heights but for some reason that fear has gotten abnormally exacerbated the last six months or so. I have no idea if this is related to Covid but nothing else has changed in my life.

Curious if anyone has experienced this or other long term effects of Covid.
Click to expand...
Another year later, how are you doing now? Fully recovered?
 
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