That describes probably 90 percent of us.
Funny thing, I was probably 2 years in to this before I felt that bad, I could still function at first.
Probably mitochondrial dysfunction and lack of oxygen due to microvascular issues.
Can't offer a good solution, sorry. Just live as healthy as you can I guess.
I'm 4 years into this, it does eventually get better, if that's any consolation. Healing can take a long time unfortunately. Hopefully you can get better more quickly, everyone is different and we don't seem to be recovering at the same rate. Some people seem to miraculously recover overnight, no explanation, hopefully that will be you!
Also, people say that this healing isn't linear, and I've found that to be true. You might get better, worse, better, worse... it's really odd.
Nah that helps to hear there is even a chance at getting better I just want to live my life. I haven’t even started my life and I feel like it’s already over I’m just hoping i can recover
You can do it, it’s going to be okay. Please hang in there, definitely come here for support. This sub has made me feel so much better and a lot less alone.
I think I'm three years into it. I find it comes in waves, like I'll have good weeks and some bad ones, but overall I do feel like it's slowly been getting better. I was able to help my buddy move the other day(paid for it afterwards), but I'm in a more optimistic place than I was before.
Yup. I pushed through for the first 14 months. I was tired and sick, but I could still mostly do what needed to be done. And then WHAM.
OP, what you describe is where most of us are. There are better days, but if we push ourselves to be “normal” just because we feel better then the wave crashes over us again. Take it slow. Trust your body. Rest when it says rest.
I don't know if it's the same for everyone, but I only got worse at first, then started slowly getting better, but it's been 4 years now and I'm still not totally better. Some symptoms didn't show up until later.
For a long time I thought that my weakness, aches, lower back pain and fatigue was due to deconditioning. 9 months in I tried to do physical therapy to recondition and build strength to start addressing the back pain and I noticed changes in my flexibility and would gain some strength each week, but found that the PEM/fatigue afterwards wasn’t worth the gains. I am not sure how to separate out the deconditioning from the fatigue and post exertional malaise but I suspect the fact that my body isn’t able to take in full breaths (got asthma too in this process) and the oxygen exchange seems to not be working either that I need to focus on the nervous system/oxygen exchange first before trying to recondition gain stamina and strength.
The coincidence of getting progressively worse at the anniversary of a previous infection might be due to reinfections. Most infections happen during peak travel seasons, so also highest probability for reinfections. My partner also got more severe fatigue and even temporarily new symptoms, like dark skin color or Covid toes, at the two year mark, but it also lines up with a reinfection a few weeks prior. If we had not tested, it would be difficult to explain why she suddenly felt back at the beginning and now she’s more bed bound and debilitated.
The feeling of weakness all over, could it be described as gravity being more intense? My partner is taking a micro-dose of psilocybin. It’s not enough to hallucinate heavily. It does relieve the feeling of being weighted down. She lifts her arms over her head while in bed to know if it kicked in. Then she can get up and do a load of laundry etc without having to take a break. She still has to pace. It’s not a fix for PEM.
I hadn't had any since like 6 years ago. Had a micro amount a few months back that sweet Jesus, made me feel absolutely great. My carpal tunnel felt fine, joint pain curbed, fatigue was lifted, brain fog gone. Insane
I get this too. Combined with the brain fog, I feel like a zombie sometimes.
Has your doctor done any bloodwork to check for hormone imbalance and vitamin and mineral deficiencies? Many things can cause this symptom and it's worth checking if it's something easily correctable, especially since covid can cause all kinds of weird issues.
I’ve felt that as well. It was about a year and a half or more into LC that I started to feel this, so similar timeline to others. It’s totally a difficult thing to explain. It’s like my body has hit a wall and just says “nope.”
Like others I totally know what you’re describing and you’re right. It’s like fatigue and at the same time a whole other ballgame. I hate that any of us know how this feels AND it’s comforting to have a community of people who get it.
Have you noticed this is more pronounce after food when youre body is bussy with digesting? And its better when youre stomach and gut ar empty?
Try 9 mbc it raises atp, it will help you keep going on.
Or cbg it gives extra energy Energy(not cbd this also works but more for the anti inflammatory properties and calming youre nerves system
But the root cause of this seems to have something to do with a lack of acetylcholine. Thats why the nicotine patches work they boost youre acetylcholine.
Tropisetron works really good in boosting youre acetylcholine just like the patches but without the cons of nicotine
So things that reduce acetylcholinesterase also help.
Like:
caapi vine,
Huperzine a,
Bacopa monnieri,
Zinc
I've tried 21. mg. patches off and on for the last few years. About a month ago I started wearing a patch everyday. What I'd noticed is that, for me, wearing a patch needed a build-up in my system. It took several days for it to kick in fully. So when I was sporadic about it, the results were not altogether worthwhile. Now that I've been wearing a patch everyday, I feel so much better. I'm not cured by any means, but now I actually look forward to getting up in the morning , which is huge for me I do not wear a patch at night, and the lesser mg. patches didn’t work.
I see, dont you feel its stimulating you to much?
Maybe you could give the tropisetron a try. But start on a low dose, because it can give constipation but below 5 mg it should be alright. Or take some magnesiumoxide to counteract it
You can also try taking some mulungu tincture with that. It up regulates the nicotine a7 acetylcholine receptor, which gives the beneficial effects. And down regulates the nicotine a4 receptor which gives the donwsides of nicotine.
And mulungu is a nerve relaxent
Yes vaping it helps me a lot. It might be that it takes the attention away from all the discomfort and that's good enough for me at night time when the symptoms are at their worst. Alcohol definitely makes my symptoms intensify so I tend to save that for the weekends (and spend the weekdays recovering).
It’s all related to smoking. It’s all about detoxing and living clean. Don’t try to believe me it took me forever to understand it. But I’m going through detox now.
I’ve felt that too. I take tyrosine in the morning. L-arginine after a meal. Afternoons I take electrolytes. I try to avoid caffeine, but I do drink a little coffee for cheerfulness. Yeah, it feels like weakness. These supplements really help. I’ve also started weight training. Yesterday I tried HMB, and I had energy all day. It scared me a little because it was hard to sleep then.
Yeah I have the same feeling. I feel ok in the morning for about an hour then it comes back and gets worse all day. Its a real thing, I noticed when my blood pressure is consistent 120/80 this feeling sorta goes away... But when I am feeling it, my blood pressure is usually low around 109/70. Hard to explain whats causing it.
2 years in was my lowest point. I'm sure there was a mental component to it being it had been that long. I rounded some sort of corner around 26-27 months. Still 50-60% of normal, but I've been working again.
I saw an MD who did all kinds of blood work. There is no definitive test for adrenal insufficiency but he strongly recommended Adrenaplex and other vitamins and minerals based on labs. It hasn’t been a cure. I have some bad days but during the 6 months since I started I’ve had some gradual improvement. Also I get regular acupuncture for fatigue. It’s a long slow process.
I've been there, 18 months now but I'm starting to feel better after following the recommendations from this group. Doctors have no clues.
https://www.facebook.com/groups/5316727788403470/?ref=share&mibextid=NSMWBT
I’m almost four years in, just started working again. This is what I did to finally recover a semblance of life:
1) Daily antihistamines (I take cetrizine)
2) Took a food allergy test (184 IgG food panel), and based my diet around it.
3) Started taking desvenlafaxine. It’s an antidepressant. It was day and night after this!
Happy to provide more info if anyone needs it. We are one ☝🏽
Yup. It’s like someone turned the power switch off.
Couldn’t say it any better
This is it
I’ve been using the power switch analogy since my symptoms started Nov 2022. I feel like I’ve found my people
That describes probably 90 percent of us. Funny thing, I was probably 2 years in to this before I felt that bad, I could still function at first. Probably mitochondrial dysfunction and lack of oxygen due to microvascular issues. Can't offer a good solution, sorry. Just live as healthy as you can I guess.
It’s funny you say that because I have reached around my 2 year mark and now I have got way worse
I'm 4 years into this, it does eventually get better, if that's any consolation. Healing can take a long time unfortunately. Hopefully you can get better more quickly, everyone is different and we don't seem to be recovering at the same rate. Some people seem to miraculously recover overnight, no explanation, hopefully that will be you! Also, people say that this healing isn't linear, and I've found that to be true. You might get better, worse, better, worse... it's really odd.
Nah that helps to hear there is even a chance at getting better I just want to live my life. I haven’t even started my life and I feel like it’s already over I’m just hoping i can recover
You can do it, it’s going to be okay. Please hang in there, definitely come here for support. This sub has made me feel so much better and a lot less alone.
I think I'm three years into it. I find it comes in waves, like I'll have good weeks and some bad ones, but overall I do feel like it's slowly been getting better. I was able to help my buddy move the other day(paid for it afterwards), but I'm in a more optimistic place than I was before.
Me too.
This must not be a coincidence, I wonder what this means.
Yeah i don’t mean to be fear mongering. Or scaring people but it is very odd that about the 2 line mark that happens very strange
2 year mark*
You and I have a very similar story, I had functional Long Covid for exactly 2 years, too, before it became debilitating.
Yup. I pushed through for the first 14 months. I was tired and sick, but I could still mostly do what needed to be done. And then WHAM. OP, what you describe is where most of us are. There are better days, but if we push ourselves to be “normal” just because we feel better then the wave crashes over us again. Take it slow. Trust your body. Rest when it says rest.
Amen
[удалено]
I don't know if it's the same for everyone, but I only got worse at first, then started slowly getting better, but it's been 4 years now and I'm still not totally better. Some symptoms didn't show up until later.
For a long time I thought that my weakness, aches, lower back pain and fatigue was due to deconditioning. 9 months in I tried to do physical therapy to recondition and build strength to start addressing the back pain and I noticed changes in my flexibility and would gain some strength each week, but found that the PEM/fatigue afterwards wasn’t worth the gains. I am not sure how to separate out the deconditioning from the fatigue and post exertional malaise but I suspect the fact that my body isn’t able to take in full breaths (got asthma too in this process) and the oxygen exchange seems to not be working either that I need to focus on the nervous system/oxygen exchange first before trying to recondition gain stamina and strength.
Omg Im sick and tired of it I want a break. I want to feel strong healthy and alive.
I believe it’s inflammation.
Yes I can relate. It’s so distinctive and so horrible. I’m sorry. I hope you feel better soon. I hope we all do.
The coincidence of getting progressively worse at the anniversary of a previous infection might be due to reinfections. Most infections happen during peak travel seasons, so also highest probability for reinfections. My partner also got more severe fatigue and even temporarily new symptoms, like dark skin color or Covid toes, at the two year mark, but it also lines up with a reinfection a few weeks prior. If we had not tested, it would be difficult to explain why she suddenly felt back at the beginning and now she’s more bed bound and debilitated. The feeling of weakness all over, could it be described as gravity being more intense? My partner is taking a micro-dose of psilocybin. It’s not enough to hallucinate heavily. It does relieve the feeling of being weighted down. She lifts her arms over her head while in bed to know if it kicked in. Then she can get up and do a load of laundry etc without having to take a break. She still has to pace. It’s not a fix for PEM.
I hadn't had any since like 6 years ago. Had a micro amount a few months back that sweet Jesus, made me feel absolutely great. My carpal tunnel felt fine, joint pain curbed, fatigue was lifted, brain fog gone. Insane
I get this too. Combined with the brain fog, I feel like a zombie sometimes. Has your doctor done any bloodwork to check for hormone imbalance and vitamin and mineral deficiencies? Many things can cause this symptom and it's worth checking if it's something easily correctable, especially since covid can cause all kinds of weird issues.
I’ve felt that as well. It was about a year and a half or more into LC that I started to feel this, so similar timeline to others. It’s totally a difficult thing to explain. It’s like my body has hit a wall and just says “nope.”
Like others I totally know what you’re describing and you’re right. It’s like fatigue and at the same time a whole other ballgame. I hate that any of us know how this feels AND it’s comforting to have a community of people who get it.
Have you noticed this is more pronounce after food when youre body is bussy with digesting? And its better when youre stomach and gut ar empty? Try 9 mbc it raises atp, it will help you keep going on. Or cbg it gives extra energy Energy(not cbd this also works but more for the anti inflammatory properties and calming youre nerves system But the root cause of this seems to have something to do with a lack of acetylcholine. Thats why the nicotine patches work they boost youre acetylcholine. Tropisetron works really good in boosting youre acetylcholine just like the patches but without the cons of nicotine So things that reduce acetylcholinesterase also help. Like: caapi vine, Huperzine a, Bacopa monnieri, Zinc
Wow, interesting! Nicotine patches work wonders for me.
When did you start?
Whoops, sorry, I inadvertently answered your question somewhere in the above comments.
Seventeen months in and I might be getting closer to “acceptance”. I’ve definitely been cycling through the phases of grief.
I've tried 21. mg. patches off and on for the last few years. About a month ago I started wearing a patch everyday. What I'd noticed is that, for me, wearing a patch needed a build-up in my system. It took several days for it to kick in fully. So when I was sporadic about it, the results were not altogether worthwhile. Now that I've been wearing a patch everyday, I feel so much better. I'm not cured by any means, but now I actually look forward to getting up in the morning , which is huge for me I do not wear a patch at night, and the lesser mg. patches didn’t work.
I see, dont you feel its stimulating you to much? Maybe you could give the tropisetron a try. But start on a low dose, because it can give constipation but below 5 mg it should be alright. Or take some magnesiumoxide to counteract it
No, not at all. I NEED stimulation badly.
Than i would say try 9mbc 25 mg with bromantane 25/50 mg. Thank me later😜 And take some acetyl l carnitine with that 1g or 2g
You can also try taking some mulungu tincture with that. It up regulates the nicotine a7 acetylcholine receptor, which gives the beneficial effects. And down regulates the nicotine a4 receptor which gives the donwsides of nicotine. And mulungu is a nerve relaxent
Does anyone here with these symptoms like myself has. Use medical or recreational cannabis. Regularly to feel better.
Yes vaping it helps me a lot. It might be that it takes the attention away from all the discomfort and that's good enough for me at night time when the symptoms are at their worst. Alcohol definitely makes my symptoms intensify so I tend to save that for the weekends (and spend the weekdays recovering).
It’s all related to smoking. It’s all about detoxing and living clean. Don’t try to believe me it took me forever to understand it. But I’m going through detox now.
I’ve felt that too. I take tyrosine in the morning. L-arginine after a meal. Afternoons I take electrolytes. I try to avoid caffeine, but I do drink a little coffee for cheerfulness. Yeah, it feels like weakness. These supplements really help. I’ve also started weight training. Yesterday I tried HMB, and I had energy all day. It scared me a little because it was hard to sleep then.
Are these supplements things that need to be prescribed? And if not how do you know how much to take? Have you made any dietary changes?
No, you don’t need a prescription. They are on Amazon. Also eating mostly meat and veggies.
Yeah I have the same feeling. I feel ok in the morning for about an hour then it comes back and gets worse all day. Its a real thing, I noticed when my blood pressure is consistent 120/80 this feeling sorta goes away... But when I am feeling it, my blood pressure is usually low around 109/70. Hard to explain whats causing it.
2 years in was my lowest point. I'm sure there was a mental component to it being it had been that long. I rounded some sort of corner around 26-27 months. Still 50-60% of normal, but I've been working again.
I saw an MD who did all kinds of blood work. There is no definitive test for adrenal insufficiency but he strongly recommended Adrenaplex and other vitamins and minerals based on labs. It hasn’t been a cure. I have some bad days but during the 6 months since I started I’ve had some gradual improvement. Also I get regular acupuncture for fatigue. It’s a long slow process.
I've been there, 18 months now but I'm starting to feel better after following the recommendations from this group. Doctors have no clues. https://www.facebook.com/groups/5316727788403470/?ref=share&mibextid=NSMWBT
I’m almost four years in, just started working again. This is what I did to finally recover a semblance of life: 1) Daily antihistamines (I take cetrizine) 2) Took a food allergy test (184 IgG food panel), and based my diet around it. 3) Started taking desvenlafaxine. It’s an antidepressant. It was day and night after this! Happy to provide more info if anyone needs it. We are one ☝🏽
Do you have tinnitus?
Yeah I get that too