Long Covid Fatigue - Exhausting Physically and Mentally

Posted by julesmango @julesmango, Feb 19, 2022

It’s been 14mo. Dealing with Fatigue and migraines. Daily naps help but looking for an explanation on what is going on in my body. Up til now all the Dr. Said it was too early to tell. Today I read The NY Times article’ How Long Covid Exhausts the Body’ by Josh Keller (https://www.nytimes.com/interactive/2022/02/19/science/long-covid-causes.html) and for the first time got some explanations on what maybe causing this. Although it is only the beginning of understanding what this virus is capable of, at least it is a start. Very insightful!! Worth reading.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

I haven't read the article yet. I am going to scroll back up in a few minutes and read it. I Had COVID in August of '23 and again in August of '24. This is the last day of August '25 and it looks like I made it through this year OK so far. lol. My second bout left me with long COVID. I feel fine as long as I stay in the cool inside and spend most of the day in my easy chair, but if I venture outside and spend more than 5 or maybe 10 minutes doing anything that actually resembles work, I am totally drained of energy and have to go back inside and lay down under a ceiling fan where I can cool off and regain enough energy to get up and go back to my easy chair. It is totally frustrating. I have not been able to do the yard-work that I really love to do. I have always had a manicured lawn etc.
About a month ago I decided to start walking in the neighborhood, right at sun up, to see if that would help. I can now walk for up to 35 minutes, at a pretty good pace, which is somewhere from 1 to 2 miles, depending on the temp and humidity. I am very tired when I return but not as much as when I started. That seems to be help me regain my strength and stamina. Right now the temp is usually about 78 when I start with humidity around 50% or so. A couple days ago I wondered why I could hardly make the mile and discovered the humidity was 100%. Yup, that will do it.
Now I am going to scroll back up and read the article.
WE CAN DO THIS...

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Profile picture for jjecker1 @jjecker1

I haven't read the article yet. I am going to scroll back up in a few minutes and read it. I Had COVID in August of '23 and again in August of '24. This is the last day of August '25 and it looks like I made it through this year OK so far. lol. My second bout left me with long COVID. I feel fine as long as I stay in the cool inside and spend most of the day in my easy chair, but if I venture outside and spend more than 5 or maybe 10 minutes doing anything that actually resembles work, I am totally drained of energy and have to go back inside and lay down under a ceiling fan where I can cool off and regain enough energy to get up and go back to my easy chair. It is totally frustrating. I have not been able to do the yard-work that I really love to do. I have always had a manicured lawn etc.
About a month ago I decided to start walking in the neighborhood, right at sun up, to see if that would help. I can now walk for up to 35 minutes, at a pretty good pace, which is somewhere from 1 to 2 miles, depending on the temp and humidity. I am very tired when I return but not as much as when I started. That seems to be help me regain my strength and stamina. Right now the temp is usually about 78 when I start with humidity around 50% or so. A couple days ago I wondered why I could hardly make the mile and discovered the humidity was 100%. Yup, that will do it.
Now I am going to scroll back up and read the article.
WE CAN DO THIS...

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Hello , I just came in this support group and wanted to know if anyone else experienced the same as I do after COVID it seems so. I had Covid twice as well the worst one was the first time in 2022 my O2 levels dropped so far I went into a mental decline. I was taken to the hospital by ambulance I do not remember much but it was horrible I was in the hospital for about 10 tens on oxygen my body would not breath on its own finally it did but it was slow going, I left the hospital after I had learned to walk again it was horrible to say the least I have been off of work now from a vehicle accident and three hip surgeries because of it. With the mental issues from the Covid and the fact I too can’t do much either I was an avid golfer and bicycle rider I try so hard to get motivated but I’m so exhausted as well . Reading up on my low o2 levels I do believe I have brain damage of some kind I have not been the same at all. People like my family and friends do not understand what I am going through that is why I reached out to this group and Mayo Clinic to perhaps help me move on with my life , I also stay in my easy chair more than one should . Anyway thanks for reading this any advice let me know
Thanks Frank

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Profile picture for frankcat @frankcat

Hello , I just came in this support group and wanted to know if anyone else experienced the same as I do after COVID it seems so. I had Covid twice as well the worst one was the first time in 2022 my O2 levels dropped so far I went into a mental decline. I was taken to the hospital by ambulance I do not remember much but it was horrible I was in the hospital for about 10 tens on oxygen my body would not breath on its own finally it did but it was slow going, I left the hospital after I had learned to walk again it was horrible to say the least I have been off of work now from a vehicle accident and three hip surgeries because of it. With the mental issues from the Covid and the fact I too can’t do much either I was an avid golfer and bicycle rider I try so hard to get motivated but I’m so exhausted as well . Reading up on my low o2 levels I do believe I have brain damage of some kind I have not been the same at all. People like my family and friends do not understand what I am going through that is why I reached out to this group and Mayo Clinic to perhaps help me move on with my life , I also stay in my easy chair more than one should . Anyway thanks for reading this any advice let me know
Thanks Frank

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This is a great place as the people posting on here, including myself, do understand. Do you see a doctor? I have found that my medicine for ADHD (Vyvanse) and Duloxetine (for depression) as well as Naltrexone have helped with my ability to function during the day. The problem, as you know, is that I get post-exertion malaise and fatigue and it is worse in the mornings. I have heard that physical therapy, low exertion exercise helps. For me that is just doing things that need to be done (laundry, dishes, etc.) This is a frustrating and disabling virus. My doctor and I are just treating the symptoms so I can function. I am better than I was 3 years ago, but still struggle daily. Hang in there.

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Profile picture for diverdown1 @diverdown1

This is a great place as the people posting on here, including myself, do understand. Do you see a doctor? I have found that my medicine for ADHD (Vyvanse) and Duloxetine (for depression) as well as Naltrexone have helped with my ability to function during the day. The problem, as you know, is that I get post-exertion malaise and fatigue and it is worse in the mornings. I have heard that physical therapy, low exertion exercise helps. For me that is just doing things that need to be done (laundry, dishes, etc.) This is a frustrating and disabling virus. My doctor and I are just treating the symptoms so I can function. I am better than I was 3 years ago, but still struggle daily. Hang in there.

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Hello and thank you for replying back to me ,I did see a doctor she put me on meds but I felt like a zombie, I stopped taking them . I am hoping with some more help perhaps from Mayo clinic I can seek more options whatever they may be . I will keep you posted thank you

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For me, 8 months on Low Dose Naltrexone is regulating my overly active immune system. I have less pain as the inflammation has gone down dramatically, my highly reactive skin has pretty well cleared up, allergies to food have minimized and I have more energy. It has not taken me back to pre COVID but I feel better than I have in five long years.

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Profile picture for julesmango @julesmango

The Chronic Fatigue Syndrome (CFS) specialist that I saw at Institute Neuroimmune Medicine INIM at Nova Southeastern University, ordered the following Labcorp tests:
EBV Nuclear Antigen Ab, IgG
EBV Ab VCA, IgG
EBV Early Antigen Ab,IgG
EBV Ab VCA,IgM
EBV PCR
Also CFS specialist ordered the following tests:
Human Herpes Virus 6 PCR
Cytomegalovirus (CMV) Ab, IgG
I was negative for the last two; Herpes 6 and CMV but they see others with chronic fatigue that are positive with these two. Worth checking all.
The first three EBV tests I was positive. So she prescribed Valtrex (Valacyclovir) 500 mg tablets 1 tablet by mouth twice daily. Although I have only been on it 2.5 weeks, I think it is helping. I was negative for the last two EBV tests, but the first three positive, the results were high, way out of the range.
She didn’t test me for Mono but I know I don’t have Mono. When I did have it in college, 36 years ago, from EBV. I had the worst sore throat and fatigue but it lasted 6-8 weeks, not the same. The good news is: This long Covid fatigue has SLOWLY gotten better but over 18 months. The first 2 months I was in bed all day on a bad day and a good day maybe walk to family room and lay on the sofa all day. But slowly, I could do a little more each day. Then I would overdo it and crash. Migraines on bad days. After having to see a neurologist for the onset of migraines from Covid, I have found Rizatriptan ODT 5 mg tablets. dissolve 1 tablet as the migraine starts and it helps fight it off now! A wonderful discovery. Wish I had Riza, in the beginning, but thankful to have the last 4 months of this journey.
I hope all this information helps someone else dealing with post Covid fatigue. Positive Attitude is everything I have learned. Also when you have a bad day, think about or look at a list of things that use to make you feel good. The other thing I have learned is to manage your moments. Pace and keep track of your activities throughout the day. Every day you have different energy levels and have to divide your tasks into manageable portions and intersperse them with resting periods. Everyday I have scheduled naps in the afternoon. At first, I would rest every time a migraine was coming. Now 18 months later, with managing moments and daily naps, plus the revelation that I had EBV all these years and Covid reactivated it causing this crazy fatigue and having a treatment plan finally, I can enjoy limited activity. I hope others will stay strong and positive during their individual post long covid journey! 😊

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I know this is a couple of months after your post, but having just read it, I need to respond with the fact that your CFS (etc.) specialist (is this a doctor?) was ordering tests for viruses that were theorized as far back as the 1980s as possibly being involved in CFS/ME. I remember this because I HAD CFS/M.E. back then, and spent a lot of time in the university library researching on Medline. One whoopie British doctor gave a presentation there who was big on the EBV reactivation theory and I actually called him on it during questioning because there was a great deal of research that failed to support that hypothesis.
But yes, EB virus, cytomagaolvirus, etc. etc. were all being cited and studied as possible culprits and yet, some forty years later, the conclusion is...inconclusive!
CFS/M.E by the way, is likely the same as LC, and they both manifest in similar, varied, and somewhat loopy ways.
Personally, my theory is that all this viral "reactivation", when it can indeed be confirmed, is likely a SYMPTOM of this illness/syndrome, and NOT a CAUSE!
Therefor, going on anti-viral drugs to suppress those particular viruses is not going to necessarily relieve the symptoms of the disease itself.
I'm hoping that what might still remain and not be undone of the 1.1 Billion dollars in funding that the CDC had been allocated to study this now pretty prevalent disease might actually uncover a bona fide etiology, and hence, hopefully, a proper effective treatment.
In the meantime, I shall as patiently as possible await the cure for me that worked last time, namely the passage OF time, (two years in my case).
Best of luck, though, in any case, and please do keep us posted on any progress!

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Profile picture for sanDGuy @sandguy

I know this is a couple of months after your post, but having just read it, I need to respond with the fact that your CFS (etc.) specialist (is this a doctor?) was ordering tests for viruses that were theorized as far back as the 1980s as possibly being involved in CFS/ME. I remember this because I HAD CFS/M.E. back then, and spent a lot of time in the university library researching on Medline. One whoopie British doctor gave a presentation there who was big on the EBV reactivation theory and I actually called him on it during questioning because there was a great deal of research that failed to support that hypothesis.
But yes, EB virus, cytomagaolvirus, etc. etc. were all being cited and studied as possible culprits and yet, some forty years later, the conclusion is...inconclusive!
CFS/M.E by the way, is likely the same as LC, and they both manifest in similar, varied, and somewhat loopy ways.
Personally, my theory is that all this viral "reactivation", when it can indeed be confirmed, is likely a SYMPTOM of this illness/syndrome, and NOT a CAUSE!
Therefor, going on anti-viral drugs to suppress those particular viruses is not going to necessarily relieve the symptoms of the disease itself.
I'm hoping that what might still remain and not be undone of the 1.1 Billion dollars in funding that the CDC had been allocated to study this now pretty prevalent disease might actually uncover a bona fide etiology, and hence, hopefully, a proper effective treatment.
In the meantime, I shall as patiently as possible await the cure for me that worked last time, namely the passage OF time, (two years in my case).
Best of luck, though, in any case, and please do keep us posted on any progress!

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Personally, my theory is that all this viral "reactivation", when it can indeed be confirmed, is likely a SYMPTOM of this illness/syndrome, and NOT a CAUSE!

I completely agree with you!!!

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Profile picture for frankcat @frankcat

Hello , I just came in this support group and wanted to know if anyone else experienced the same as I do after COVID it seems so. I had Covid twice as well the worst one was the first time in 2022 my O2 levels dropped so far I went into a mental decline. I was taken to the hospital by ambulance I do not remember much but it was horrible I was in the hospital for about 10 tens on oxygen my body would not breath on its own finally it did but it was slow going, I left the hospital after I had learned to walk again it was horrible to say the least I have been off of work now from a vehicle accident and three hip surgeries because of it. With the mental issues from the Covid and the fact I too can’t do much either I was an avid golfer and bicycle rider I try so hard to get motivated but I’m so exhausted as well . Reading up on my low o2 levels I do believe I have brain damage of some kind I have not been the same at all. People like my family and friends do not understand what I am going through that is why I reached out to this group and Mayo Clinic to perhaps help me move on with my life , I also stay in my easy chair more than one should . Anyway thanks for reading this any advice let me know
Thanks Frank

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Hi @frankcat. I was not hospitalized like you (I can't imagine the trauma of that experience!) but I have experienced the 'body not breathing on its own' horror. It's beyond terrifying and debilitating, especially when not hospitalized, with no one to rescue you in the event... I had to manually breathe, if that makes sense. It's as if my body had forgotten how to do it naturally - automatically. I couldn't sleep. It would come and go for about 6 months and I still have bouts with this by much less frequently, thank the Lord! This set in at about 18 months post Covid (original strain - March 2020), 6 months post vaccination (original series - Moderna). To this day there are times when the opposite happens and I can feel my body breathing well on its own - my rib cage rising, the pull from the pelvis all the way up to the chest - and I'm conscious of how it's doing this completely on its own and I relish in how good it feels. Most of the time I need to 'pull' my breath up if that makes any sense?

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Profile picture for frankcat @frankcat

Hello , I just came in this support group and wanted to know if anyone else experienced the same as I do after COVID it seems so. I had Covid twice as well the worst one was the first time in 2022 my O2 levels dropped so far I went into a mental decline. I was taken to the hospital by ambulance I do not remember much but it was horrible I was in the hospital for about 10 tens on oxygen my body would not breath on its own finally it did but it was slow going, I left the hospital after I had learned to walk again it was horrible to say the least I have been off of work now from a vehicle accident and three hip surgeries because of it. With the mental issues from the Covid and the fact I too can’t do much either I was an avid golfer and bicycle rider I try so hard to get motivated but I’m so exhausted as well . Reading up on my low o2 levels I do believe I have brain damage of some kind I have not been the same at all. People like my family and friends do not understand what I am going through that is why I reached out to this group and Mayo Clinic to perhaps help me move on with my life , I also stay in my easy chair more than one should . Anyway thanks for reading this any advice let me know
Thanks Frank

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Hi Frank,
I too have fibromyalgia having been diagnosed a few years ago. I swear to God this all started with Covid. Specifically getting the vaccination 2x and still having Covid. I will NEVER get another Covid vaccination! I don’t know if anyone can find out for sure if this was the cause.

Thank you for sharing your story. You are not the only one. Hang in there. Good days and bad.

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Profile picture for jah456 @jah456

Hi Frank,
I too have fibromyalgia having been diagnosed a few years ago. I swear to God this all started with Covid. Specifically getting the vaccination 2x and still having Covid. I will NEVER get another Covid vaccination! I don’t know if anyone can find out for sure if this was the cause.

Thank you for sharing your story. You are not the only one. Hang in there. Good days and bad.

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I have had so many people shame me saying, "You should have gotten vaccinated." I did NOT get any of the COVID vaccines because I have never been a person to get sick. It is interesting and horrifying that the folks who got the vaccination(s) are also getting Long COVID. Regardless., Hang in there today. I have extreme post exertion malaise this morning. It was two days I felt ok in the morning. I am grateful for those two days. Never knowing what will cause me to feel like sh*t is frustrating, but I am trying to remain grateful that I am able to function with the help of some of the meds.

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