Covid is ruining my life.

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Rock said:
Appreciate you and everyone else checking in. Today is day 52, I think, and unfortunately, it didn't seem to be a good day. Just felt lightheaded and dizzy all day. Fatigued more than usual, which is saying something. And so it becomes a thing of figuring out why. Did I eat too many carbs yesterday? I've lost 30 pounds so my appetite coming back should be a good thing but maybe not. Or did I just exert myself too hard yesterday? I walked my dogs a combined 15 whole minutes at the pace of a 90 year old.

I'm quite low. I'm starting to have to consider things like, do I give up my dogs? I can't walk them and I can't afford to pay someone to walk them for very long. I have terrible insurance as a teacher and I'm so far in debt it would make your head spin. Here is what my dogs are used to:

IMG_3302.jpeg

My 78 year old mom is trying to help walking them but it's about to snow again so Kansas winters doing me a big help there. Don't want her to break a hip.

Anyway, I'm just exceptionally low and I don't see a lot of light ahead of me. Some people that have this are so fatigued they can't leave bed and I'm freaking out I'm headed in that direction. So many of the unknowns are the problem. Doctors seemingly not understanding this disease, or whatever it is, is all the more tortuous. I feel sorry for all the people who have said they have chronic fatigue and weren't taken seriously.

Sorry, again, I don't mean to be so depressing. It's just bleak. I don't know what else to say.

Appreciate you asking and hug your loved ones and cherish your health and all that.
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Rock. Feel horrible for you. I keep holding out hope it will just disappear. Keep doing what the doctors tell you. We are all wishing you a full and rapid recovery.
 
gtyellowjacket said:
Rock. Feel horrible for you. I keep holding out hope it will just disappear. Keep doing what the doctors tell you. We are all wishing you a full and rapid recovery.
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Thanks. Rapid recovery does happen but probably less so than not. The CDC (I know) does say "most people with Long COVID symptoms see significant improvement after 3 months" and I'm 5-6 weeks from that. I have been reading a lot of long COVID communities (Reddit, Facebook, etc.) and that's of course going to skew toward people with years long bouts of this. That does worry me. I try and not let the anxiety get to me but it's hard when you're confined to a couch and not doing anything too stimulating like.. watching TV or looking at your phone.

Bleh. Thanks again for the well wishes. Really appreciate it.
 
Hang in there Rock.

I use the Green Noise from the Better Sleep app to sleep and rest - it may chill your brain waves down.

You may not feel like it, but daily light to moderate exercise (40-60 min if you can) will start to reset your immune system. The virus is gone, but the alarm bells in the immune system won't turn off, because they run on positive feedback loops that amplify immune response. If the immune system is on five alarm mode for days/weeks it takes some time and intervention to turn them off. Moderate exercise is an excellent positive modulator of the immune system. Hope some of this helps.
 
Duke Mu said:
Hang in there Rock.

I use the Green Noise from the Better Sleep app to sleep and rest - it may chill your brain waves down.

You may not feel like it, but daily light to moderate exercise (40-60 min if you can) will start to reset your immune system. The virus is gone, but the alarm bells in the immune system won't turn off, because they run on positive feedback loops that amplify immune response. If the immune system is on five alarm mode for days/weeks it takes some time and intervention to turn them off. Moderate exercise is an excellent positive modulator of the immune system. Hope some of this helps.
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Appreciate you trying to help.

Are you familiar with post exertional malaise and chronic fatigue? I don't know that I have XYZ but many scientists/doctors are saying perhaps to not work out when you have long covid. It's very possible I am not one of those people and should work out. It's all just a guessing game at this point which is why it's so frustrating.

Again, only time will tell what will or won't hurt me and it's frustrating because it's a weeks and months long thing at this point it seems. :(
 
Rock said:
Appreciate you and everyone else checking in. Today is day 52, I think, and unfortunately, it didn't seem to be a good day. Just felt lightheaded and dizzy all day. Fatigued more than usual, which is saying something. And so it becomes a thing of figuring out why. Did I eat too many carbs yesterday? I've lost 30 pounds so my appetite coming back should be a good thing but maybe not. Or did I just exert myself too hard yesterday? I walked my dogs a combined 15 whole minutes at the pace of a 90 year old.

I'm quite low. I'm starting to have to consider things like, do I give up my dogs? I can't walk them and I can't afford to pay someone to walk them for very long. I have terrible insurance as a teacher and I'm so far in debt it would make your head spin. Here is what my dogs are used to:

IMG_3302.jpeg

My 78 year old mom is trying to help walking them but it's about to snow again so Kansas winters doing me a big help there. Don't want her to break a hip.

Anyway, I'm just exceptionally low and I don't see a lot of light ahead of me. Some people that have this are so fatigued they can't leave bed and I'm freaking out I'm headed in that direction. So many of the unknowns are the problem. Doctors seemingly not understanding this disease, or whatever it is, is all the more tortuous. I feel sorry for all the people who have said they have chronic fatigue and weren't taken seriously.

Sorry, again, I don't mean to be so depressing. It's just bleak. I don't know what else to say.

Appreciate you asking and hug your loved ones and cherish your health and all that.
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Sorry to hear that you are still dealing with this.

Health is a lot to worry about.

I hope that something changes soon, and you are able to start recovering.
 
Rock said:
Appreciate you trying to help.

Are you familiar with post exertional malaise and chronic fatigue? I don't know that I have XYZ but many scientists/doctors are saying perhaps to not work out when you have long covid. It's very possible I am not one of those people and should work out. It's all just a guessing game at this point which is why it's so frustrating.

Again, only time will tell what will or won't hurt me and it's frustrating because it's a weeks and months long thing at this point it seems. :(
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This is true. From what I’ve heard, the best “treatment” for Long Covid is as much rest as possible. Like, literally limiting your physical activity as much as you possibly can and letting your body reset. Doesn’t make much intuitive sense to me, but that seems to be the emerging view.
 
I'm sorry that you're dealing with these symptoms.

FWIW, I had a less severe long COVID symptom for several months: numbness in my lower right leg and foot. The numbness was severe enough in my foot that I sometimes exhibited "drop foot"--the goddamn thing would not work; I could not plant my foot and push off.

I eventually sought treatment from a neurologist and underwent a conductivity test that satisfactorily proved that I was not a crazy person.

The neurologist offered no treatments. But the numbness and drop-foot symptoms gradually disappeared.
 
lawtig02 said:
This is true. From what I’ve heard, the best “treatment” for Long Covid is as much rest as possible. Like, literally limiting your physical activity as much as you possibly can and letting your body reset. Doesn’t make much intuitive sense to me, but that seems to be the emerging view.
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I talked to a doctor friend in Boston and she's pretty much the smartest person I know. She's a family medicine doc so she's not a neurologist or specialist but I still really value her opinion. She tells her patients to still get enough exercise that would cover my needs (walking my dogs) but it's hard to abide by their thought when my body feels so fatigued. But, I have basically laid around for like 11 straight days so is the fatigue also due to that? It's so hard to know. I walked them for a whole 10 minutes today and took a shower so we'll see how tomorrow goes.

I'd almost take getting run over by a car or shot in the face over this because at least then there'd be some tangible understanding of what went wrong and how to fix it. This is just a guessing game and throwing money down the drain on doctors and supplements.
 
breepf said:
I'm sorry that you're dealing with these symptoms.

FWIW, I had a less severe long COVID symptom for several months: numbness in my lower right leg and foot. The numbness was severe enough in my foot that I sometimes exhibited "drop foot"--the goddamn thing would not work; I could not plant my foot and push off.

I eventually sought treatment from a neurologist and underwent a conductivity test that satisfactorily proved that I was not a crazy person.

The neurologist offered no treatments. But the numbness and drop-foot symptoms gradually disappeared.
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Glad to hear that you got better. Always good to hear positive outcomes.

It's funny you say that about the test proving you're not crazy. One thing that shows I'm not is I've developed POTS (postural orthostatic tachycardia syndrome) where when I get up from sitting my HR shoots up like 50-80 beats per minute. I was in decent shape so it's not for that reason and of course, it developed nearly overnight. I was able to show my doctor this and he was like ok I believe you. Then he said maybe you could try this drug called mitodrine that contracts your blood cells or something and I immediately got anxious and was like, let's see if we can't fix it with other methods.

Anyway, I'm rambling so. Glad to hear you're better than you once were!
 
Rock said:
Glad to hear that you got better. Always good to hear positive outcomes.

It's funny you say that about the test proving you're not crazy. One thing that shows I'm not is I've developed POTS (postural orthostatic tachycardia syndrome) where when I get up from sitting my HR shoots up like 50-80 beats per minute. I was in decent shape so it's not for that reason and of course, it developed nearly overnight. I was able to show my doctor this and he was like ok I believe you. Then he said maybe you could try this drug called mitodrine that contracts your blood cells or something and I immediately got anxious and was like, let's see if we can't fix it with other methods.

Anyway, I'm rambling so. Glad to hear you're better than you once were!
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Midodrine is a vasoconstrictor, it ups blood pressure. Are you experiencing fainting/near fainting spells?

If you have a bp monitor it may be worthwhile to get several readings in different postures, at home. No doubt your doc would thoroughly evaluate your bp before putting you on a vasoconstrictor, but merely being in a doctor’s office can do wild things to some folks bp 🤚. Having home readings could provide a more realistic view of your baseline. If you take home readings, could be worthwhile to lookup the protocol for orthostatic hypotension.
 
Sorry for not responding @gtyellowjacket. I appreciate that you asked. For whatever reason, it’s often just too much energy to write a simple reply such as this.

Things are about the same. That’s among the most frustrating things about this. It’s a slow crawl to progress it seems. Glacial change.

I essentially sleep from being medicated and then just lay in the dark and try and not do too much. Some days I feel ok and move around the house, others I just have to lay down a lot. It’s like my energy never replenishes and I’m just always on zero. Be it that my mitochondria are all screwed up and my body doesn’t produce energy or my central or autonomic nervous systems are out of whack and telling my body to do the wrong things. I don’t know.

I did see that Chapel Hill has a quality long covid clinic. I may have to visit my brother and pay the clinic a visit. Traveling at the moment sounds insane though. Maybe in the summer.

Anyway, thanks again. Please get your vaccinations and stay healthy btw. No one should ever get or have this.
 
Rock said:
Sorry for not responding @gtyellowjacket. I appreciate that you asked. For whatever reason, it’s often just too much energy to write a simple reply such as this.

Things are about the same. That’s among the most frustrating things about this. It’s a slow crawl to progress it seems. Glacial change.

I essentially sleep from being medicated and then just lay in the dark and try and not do too much. Some days I feel ok and move around the house, others I just have to lay down a lot. It’s like my energy never replenishes and I’m just always on zero. Be it that my mitochondria are all screwed up and my body doesn’t produce energy or my central or autonomic nervous systems are out of whack and telling my body to do the wrong things. I don’t know.

I did see that Chapel Hill has a quality long covid clinic. I may have to visit my brother and pay the clinic a visit. Traveling at the moment sounds insane though. Maybe in the summer.

Anyway, thanks again. Please get your vaccinations and stay healthy btw. No one should ever get or have this.
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Definitely don't worry about responding to me if you are exhausted. More important to get rest and get better.
 
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If you are getting all this documented by visting physicians and whatnot you may want to file a SSDI claim. Even if you get better you could get approved for a closed period of the time you could not work. And if you don't get better, God forbid, you need to get the ball rolling now before Trump replaces all the good judges. It can take 1-2 years to get to hearing stage and they usually rubber stamp you "no" until hearing unless you've lost two limbs or something. It's much easier to get approved if you're over 50 and evern easier if you're over 55. .
 
Rock said:
Appreciate you trying to help.

Are you familiar with post exertional malaise and chronic fatigue? I don't know that I have XYZ but many scientists/doctors are saying perhaps to not work out when you have long covid. It's very possible I am not one of those people and should work out. It's all just a guessing game at this point which is why it's so frustrating.

Again, only time will tell what will or won't hurt me and it's frustrating because it's a weeks and months long thing at this point it seems. :(
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Yeah, I'm seeing new data about problems in the mitochondria (O2 powerhouse) and invasion with immune cells. That almost sounds like muscular dystrophy or aging. I'll do a quick dive and see what the issue is...some of my research is in the MD and aging area...

 
Rock said:
Sorry for not responding @gtyellowjacket. I appreciate that you asked. For whatever reason, it’s often just too much energy to write a simple reply such as this.

Things are about the same. That’s among the most frustrating things about this. It’s a slow crawl to progress it seems. Glacial change.

I essentially sleep from being medicated and then just lay in the dark and try and not do too much. Some days I feel ok and move around the house, others I just have to lay down a lot. It’s like my energy never replenishes and I’m just always on zero. Be it that my mitochondria are all screwed up and my body doesn’t produce energy or my central or autonomic nervous systems are out of whack and telling my body to do the wrong things. I don’t know.

I did see that Chapel Hill has a quality long covid clinic. I may have to visit my brother and pay the clinic a visit. Traveling at the moment sounds insane though. Maybe in the summer.

Anyway, thanks again. Please get your vaccinations and stay healthy btw. No one should ever get or have this.
Click to expand...
Have you had a food sensitivity test? I had several health issues and regular Drs couldn’t find anything. Long story short, gluten was my main culprit.

Bottom line, check everything out. Leave no stone unturned.
 
Duke Mu said:
Yeah, I'm seeing new data about problems in the mitochondria (O2 powerhouse) and invasion with immune cells. That almost sounds like muscular dystrophy or aging. I'll do a quick dive and see what the issue is...some of my research is in the MD and aging area...

Click to expand...

Wow - so I've seen some histology, including on the paper cited and the muscles resemble aging and muscular dystrophies after exercise. There is damage and invasion of immune cells. Another commonality is insufficient nitric oxide levels. There is a family of nitric oxide synthase enzymes that produce nitric oxide to increase blood flow, take up glucose from the blood, fight oxidative stress and inflammation, and regulate turnover of proteins.

In vascular tissue, including in skeletal muscle, eNOS (endothelial nitric oxide synthase) dilates arterioles and increases blood flow during exercise. In long COVID eNOS is low and therefore blood flow is impaired. nNOS (neuronal nitric oxide synthase - discovered in neurons first) lives normally at the cell membrane. nNOS also assists blood flow, glucose uptake, mitochondrial function, muscle hypertrophy and strength. During spaceflight, muscular dystrophies, and aging nNOS in skeletal muscle moves away from the cell membrane and flips from anabolic to catabolic in function.

if nNOS is returned back to the cell membrane with MDs, aging, spaceflight then muscle damage, immune cell invasion, and weakness/wasting are mitigated. Finding nNOS and skeletal muscle data may be difficult re: long COVID. There only a handful of us who are engaged in the nNOS and myopathy area...but I'll scour for more information. I know enough about the pathways where I might be able to piece together a scenario. It could be ischemic damage, but looks like more.

It's possible that an L-citrulline supplement *could* improve nitric oxide (•NO) bioavailability and reduce fatigue. Citrulline is converted to L-arginine in cells and used as a substrate for eNOS and nNOS.

One of the things to keep in mind, is that the muscle damage seen in some of the studies after exercise used HIGH INTENSITY (weighlifting, HIIT, sprinting) or high Volume of exercise. Therefore, it is possible that mild exercise like walking which could be more helpful.
 
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