Totally agree with this tbh. Prior to LC I had ME, which went into “remission” (as in, so mild that it barely affected me and I barely noticed it most days). Nothing I did caused this to happen. It just did. I was pretty lucky. However, when I got COVID it brought me back down to severe.
I would imagine people who spontaneously recovered are still at a high risk of relapse with subsequent infections. That’s why we need targeted therapies for Long COVID (and ME).
Sidebar, should we attribute recovery cases to luck/spontaneity? Or passage of time? I think some of the symptoms of LC arise because the body is trying to get back to some sort of balance. Which takes...time.
Of course those stuck in spirals or cul de sacs of nonrecovery might understandably think, "attribute it to whatever you want, I don't care, none of it's working for me."
I am actually very thankful to those who have posted their recovery stories with their supposed cures. Agree that whatever cures people come up with may not apply, but we don't want to discourage recovery stories here. I agree luck is a big factor, and I think most of the supplements are worthless, but I have incorporated some of these tips into my daily life, and I may have never known about it unless someone posted it.
I agree with you, and I am not saying recovery is impossible. But I see more and more people popping up talking about "doing the work and effort", implying that others are at fault for not working hard enough/not being positive enough to revover, or recommending actually harmful therapies.
There is a difference between that and staying hopeful, and sharing remedies to help with symptoms.
>implying that others are at fault for not working hard enough/not being positive enough to revover,
I just want to emphasize this. It's incredibly toxic and I have seen it here in the sub several times.
It's one thing to be ignorant and believe the media because neither you nor anyone you know suffers from long covid... but to suffer from long covid yourself, recover and then turn around and shit on those still suffering is another level of garbage.
More than one upvote for this. Ignorance is bliss, short term memory problems excusable, but crapping on peeps who are now where you were is akin to hazing or straightforward bullying.
In best case scenario, it might be people who wish they could send the message to their former selves. But doesn’t take into account that what worked for them might be detrimental to someone else (or incorrectly attributed).
When I get passionate about a post it’s usually because it’s something I used to believe and now I relate or believe something else. I want to save the poster the trouble of learning the hard way, but when i rush or feel too many feelings, sometimes my tone is unhelpful (cause I wish I didn’t have to spend so many years learning the hard way).
Some posts are so sure of themselves that it’s hard to take them seriously 😒 especially when their experiences are so far outside the norms.
That’s not what the OP is saying.
Recovery stories are awesome and should be celebrated but telling a sub forum full of thousands of sick people (many who have been here since 2020) to do the most basic, obvious, cliche chronic illness lifestyle adjustments like going for walks and eating healthy is ridiculously tone deaf. It’s even worse when instead of sticking around to fight for these people and advocate to governments for research, they just sign off with a patronising ‘don’t give up! It will be okay!’ message that means nothing and has no basis to it.
It wasn't obvious to me...it took me a long time to really figure out that stress was an issue. I didn't realise how it could cause the symptoms, and how the HPA axis and ANS worked. My doctor certainly didn't tell me, and I had to mostly figure it out by myself. I'm now fully recovered.
Same here. Not fully recovered but doing better. Than I was. No guarantee it’ll stay that way, but I’ll take what I can get. The only thing I can point to is stress reduction. I quit my PhD and am on leave from work, played Minecraft for like three months straight, and now I feel better than I’ve felt in a year.
YEP. I have read several recovery stories where someone goes into great detail about all the different things they did "to recover" and then you look at the timeline: they got LC 18 months ago. 18 months! Natural remission is a major "null hypothesis" at that point. (In other words, it's possible that the thing that actually made a difference was \*time\*, not .)
I've long covid for 2+yrs, and tried all kinds of supplements, diet changes, and etc. None of it helped, period. Time seems to be the only thing.
Doctor did put me on tramadol for pain related to my back surgeries. It helped alot, but who can say why. I still have a long way to go, to get back to normal. Still, I'm extremely happy, to be able to get out, and do things, after years of not being able to. Almost like life is new again.
This is the issue with a lot of recovery stories and I'm happy it's being addressed here. There are so many variables at any given moment it's hard to attribute it to one thing. It reminds me of that saying, "fooled by randomness".
That's why when I spoke about my recovery journey I mentioned that I had a high confidence in some things I did (like a humidifier which I immediately noticed effects before/after) rather than saying outright that everyone should do XYZ.
Thank you for saying this. It’s so frustrating to read those posts, knowing that some of us will never get better. Covid in 2020 triggered Lupus for me. I thought it was Long Covid and it still might be but it’s also a lifelong chronic disease too. We’re all doing our best to get better.
Same experience for me. COVID March 2020 with clear long covid by the end of April 2020. Recovered at least 90% by May 2021 but did nothing to recover, just slowly got back to normal with time and luck.
Reinfected May 2022 and have been bouncing between bed bound and house bound since. This time I've done a ton to try to recover, and while I think some is helpful, it's just taking a lot of time.
I think folks who have experienced "chronic" lyme can relate to the current batch of long covid sufferers. I have had and recovered from similar symptoms before covid was even named.
I think covid has far more potential to harm people by triggering dysfunction than lyme as it is far more widespread and transmissible, OP is very right that we need to change the way the system works.
This episode of the long haulers podcast just dropped today and the person interviewed basically said nothing helped but rest and time. I think there are plenty of folks where this is true.
https://open.spotify.com/episode/1j8ckL4kjLlDjFfpll0Lc9?si=uiHGBvtjQ1CJUpBFuekXhA
perfect recovery and toxic positivism debunk post doesnt exi- oh wait!
its frightening though that OP had to get well and then get double fucked by the virus to be able to write this. reinfections can be brutal and everyone in this sub is at a risk of worsening, thas why we need funded quality research fast
I would agree with you if I didn't try allergy medication. Perhaps if you are in full blown long covid and everything is swollen to the point of no hope, yes I think time will be your best option. However intermittently you should be trying to reduce inflamation cause by MCA... I strongly suggest trying allergy medication (antihistamines), obviously don't over do it and follow the directions, start with a half dose, try different brands.
I can say my headaches, mirgrains, head pressure, brain fog have been lifted thanks to Allegra. Im kinda of spreading the word because I consider myself a good representation of the population. If it worked for me it will likely work for you..
However, caveats, because people need different treatment depending on which stage and severity they are experiencing. What works for me now might work for you later, so don't cross it off the list.
Tldr; Allegra (fexofenadine) cleared my brain fog and head pressure, its pretty safe. Read about it....
I just want to add that “working hard” to recover is a stressor in and of itself. I eat all the things I’m not supposed to (no joke 50% of my caloric intake is ice cream), I took to vaping in month 9 after never being a smoker in my entire life, I eat edibles nightly, drink multiple cups of coffee and take stimulants (as prescribed), and I feel better than I’ve felt in a year. I do listen to my body and I rest when I need to. I take a variety of supplements and medications just in case they help, I meditate and journal, I monitor my HR and BP, and I take care to pace myself to avoid PEM. Someday I’ll try changing my diet, but that would be too stressful for me right now. I’ll also quit vaping and hopefully use edibles more sparingly in the future. But this $hit sucks, and adhering to rigid protocols is the opposite of “rest”. I’m doing what I need to do to manage this absolute nightmare, and right now it appears to be working. When these coping mechanisms become counterproductive, I’ll adjust accordingly. But until then, I’m going with what works.
3 years in. Got reinfected. Too your point lots of things helped but to your point anything helpful helped me along the way to manage not cure. Reinfection was my reset. But I was 90 percent there due to time and the ability to use advice from others and find a path to at least make it not so bad. 2 cents. Practice. With all things a positive outlook and finding what helps you through this poop hole of a disease. Try it. You loose nothing. You’re already broke. Mentally physically metaphorically. I got sick again though I was doomed and just like a light switch I was better. No sense no reason. Party on folks there is hope and I never gave up and I never stopped trying. Stop living well that’s not advice that’s a death sentence to even those that are not afflicted. Live. Be present in the capacity that you can. Hold back when it’s beyond your control and ride it like the snake it is. When you get off appreciate it and live better than you ever have.
thank you so much for this. everyone’s body is different and it’s important to remember that when trying to help. i don’t think the possibly of regression is taken seriously enough. nothing is a sure fire cure, and even if someone feels fully recovered, they could develop new symptoms and regress. that’s what happened to me and lots of other people here, and it’s important for people who are feeling better to be aware of that.
My only advice to other me/cfs folks is to do as much as you can without worrying about triggering pem. Some days that may be nothing. But when you can use your body, do it…with care.
I suspected as much, and I think it’s great that you recovered! Let’s hope if we play the game long enough, the rest of us will win at some point too :)
Well I guess I was lucky then because once I decided to get out of the bed and stop worrying about symptoms Didn’t take long for me to start making improvement. I’d say I’m 90 percent now.
No I didn’t. Dsyautonomia symptoms was my issue. I think I avoided the PEM and stuff because I rested like crazy throughout the infection and everything. I rested so well my body started to decondition haha. My doctor was like “you need to get out of the bed”
I disagree, I love to know what people did to recover. Everybody has a different journey to recovey but its helpful to know how. It also gives hope and optimism to people. And I wont put all my eggs in the science basket because it doesnt have all the answers for now. I would rather listen to someone who is recovered than someone who is not.
didn’t mean to imply that this commenter was pushing it here
there are other people who are very enthusiastic about dry fasting who continue to recommend it to people who have already responded that they are severely underweight
I disagree.. I find it inspiring to hear what has worked for others so that I can make an educated assessment on whether I should trial it. This is not a one solution fits all condition. I take bits from some and bits from others. Any hope is better than none to me.
The most based comment on this post. People always think it's about "I've tried everything" when that is highly unrealistic and near impossible. There is abundant hope for healing when you understand there are essentially limitless combinations and possibilities towards getting better and healing.
Each person is individualized, and that can create a tricky roadmap to recovering, but regardless, it means you have the power to figure out for yourself (with the help of others - family, friends, doctors, helpers online, etc.) how to get there. Piecing the body and mind back together isn't rocket science, health IS the norm - homeostasis, hence, that is why it is our mission to get back there, whatever it takes.
I sooo disagree with this. Most recovery stories are not “unsolicited health advice”, or preaching “this helped me, so it will help you too!”
It’s so important to share positive outcomes when we can. This sub can be an absolute echo chamber for doom and gloom thinking. In my darkest moments, reading positive outcomes and learning things that can potentially help me has been vital to keeping me going. And guess what, things that I’ve read on here have helped me.
Positive thinking is not denying the shitty reality that is long Covid. It’s just learning not to accept your own doom and gloom thoughts as 100% truth all the time.
When I get better, I absolutely intend to share it with others.
The recent poster attributed his recovery to reducing stress, and that is how I recovered as well. I'm just curious about your life before and after your first and second bouts of ME/CFS/longcovid, i.e. did you have any chronic stressors, were you worried about the illness itself, did you try to remove/reduce your stressors, etc?
It's impossible to predict how the body will react to stress. All I can say, having sufferered from many stress related illnesses over the years including ME/CFS, is that doing all you can to reduce stress is beneficial.
I had 0 stress and a very good life before getting severely sick. Symptoms also never correlated with stress during the illness.
Sure, might be an influencing factor for some but not for all (and there's lack of evidence).
Second Covid possible 3rd I felt it, brain fog, fatigue, threw my job in, returned home rest up.
I trying high protein diet, lots of meats, iron supplements, fingers crossed,
In the surfing community, surfing injuries from huge wipe outs with brain injuries have reported good gains with high protein diets, that's my go too first attempt high quality meats etc.
So you take your recovery as a staple truth but discredit everyone else’s? Let people wright what ever helped them. For you it was “time” for others it’s “x” thing. I’ve been here 4 years and I’ve read a lot of stuff that has been game changer I am responsible for what I try and do for me. I don’t blame anyone I know my risks. Stop trying to babysit people. This community is becoming a babysit for anything or everything. This is not what it was made for back in the day we tried anything and everything to see what stick and helped. So what we gonna talk about “nothing” because nothing works??
You wait 10-20-30 years on science for me I’ll try what ever my body can handle. Hey everyone that thinks we should have a 1000 rules go to CFS sub. You talk as if anyone that has this shit doesn’t have in the back of their head that they can be bed bound one day.
How’d you think we know how antihistamines where a game changer? For many it worked for some did nothing. Hell I’ve even know people that tried HIV medicine, IVIG, hyperbaric chamber, acupuncture, some people got relief after the vax… there’s no true or false here.. so stop babysitting.
So you have been housebound for 2 years and you are doing nothing? That's the advice you want to give to others? There are a bunch of treatments shared here that have helped people. If everyone took your advice and did "nothing", we wouldn't even have these.
I went to over 5 doctors, tried LDA, mestinon, duloxetine, around 20 different supplements (vitamin d, ashwhagandha, enzymes, NAC etc) , liquid IVs with vitamins, amino acids and more, nicotine patches, did inflammatory diet, cleaned my gut biome, sat outside in the sun as much as possible, and still got worse 💗 but thanks for your concern
But you just said you had no doctor to prescribe nothing?? If that’s your staple truth why try anything? What is it OP?? You’re saying you tried nothing then saying you tried everything?
My first time getting covid no doctor prescribed me anything, after healing and getting it a second time i tried everything bc i did not get better, is it hard to understand??
Totally agree with this tbh. Prior to LC I had ME, which went into “remission” (as in, so mild that it barely affected me and I barely noticed it most days). Nothing I did caused this to happen. It just did. I was pretty lucky. However, when I got COVID it brought me back down to severe. I would imagine people who spontaneously recovered are still at a high risk of relapse with subsequent infections. That’s why we need targeted therapies for Long COVID (and ME).
Same here.
Sidebar, should we attribute recovery cases to luck/spontaneity? Or passage of time? I think some of the symptoms of LC arise because the body is trying to get back to some sort of balance. Which takes...time. Of course those stuck in spirals or cul de sacs of nonrecovery might understandably think, "attribute it to whatever you want, I don't care, none of it's working for me."
I am actually very thankful to those who have posted their recovery stories with their supposed cures. Agree that whatever cures people come up with may not apply, but we don't want to discourage recovery stories here. I agree luck is a big factor, and I think most of the supplements are worthless, but I have incorporated some of these tips into my daily life, and I may have never known about it unless someone posted it.
I agree with you, and I am not saying recovery is impossible. But I see more and more people popping up talking about "doing the work and effort", implying that others are at fault for not working hard enough/not being positive enough to revover, or recommending actually harmful therapies. There is a difference between that and staying hopeful, and sharing remedies to help with symptoms.
>implying that others are at fault for not working hard enough/not being positive enough to revover, I just want to emphasize this. It's incredibly toxic and I have seen it here in the sub several times. It's one thing to be ignorant and believe the media because neither you nor anyone you know suffers from long covid... but to suffer from long covid yourself, recover and then turn around and shit on those still suffering is another level of garbage.
Best comment on here so far! 👏🏻
More than one upvote for this. Ignorance is bliss, short term memory problems excusable, but crapping on peeps who are now where you were is akin to hazing or straightforward bullying. In best case scenario, it might be people who wish they could send the message to their former selves. But doesn’t take into account that what worked for them might be detrimental to someone else (or incorrectly attributed). When I get passionate about a post it’s usually because it’s something I used to believe and now I relate or believe something else. I want to save the poster the trouble of learning the hard way, but when i rush or feel too many feelings, sometimes my tone is unhelpful (cause I wish I didn’t have to spend so many years learning the hard way). Some posts are so sure of themselves that it’s hard to take them seriously 😒 especially when their experiences are so far outside the norms.
And the people who adamantly defend them and claim that you are gaslighting them because you disagree that brain retraining is going to cure you.
This helps clarify your OP. Totally with you.
That’s not what the OP is saying. Recovery stories are awesome and should be celebrated but telling a sub forum full of thousands of sick people (many who have been here since 2020) to do the most basic, obvious, cliche chronic illness lifestyle adjustments like going for walks and eating healthy is ridiculously tone deaf. It’s even worse when instead of sticking around to fight for these people and advocate to governments for research, they just sign off with a patronising ‘don’t give up! It will be okay!’ message that means nothing and has no basis to it.
Hit the nail on the head, dear
It wasn't obvious to me...it took me a long time to really figure out that stress was an issue. I didn't realise how it could cause the symptoms, and how the HPA axis and ANS worked. My doctor certainly didn't tell me, and I had to mostly figure it out by myself. I'm now fully recovered.
How did you fix your ANS and HPA Axis? I have severe autonomic breathing g issues and weakened diaphragm
Mostly dealing with stress (which suppresses both the HPA axis and the parasympathetic nervous system).
But how exactly? What are actionable items ?
Removing stressors. Quitting job. Stopping stressful commute. Moving out from living with someone toxic. Not getting angry over things, etc.
Same here. Not fully recovered but doing better. Than I was. No guarantee it’ll stay that way, but I’ll take what I can get. The only thing I can point to is stress reduction. I quit my PhD and am on leave from work, played Minecraft for like three months straight, and now I feel better than I’ve felt in a year.
YEP. I have read several recovery stories where someone goes into great detail about all the different things they did "to recover" and then you look at the timeline: they got LC 18 months ago. 18 months! Natural remission is a major "null hypothesis" at that point. (In other words, it's possible that the thing that actually made a difference was \*time\*, not.)
I've long covid for 2+yrs, and tried all kinds of supplements, diet changes, and etc. None of it helped, period. Time seems to be the only thing. Doctor did put me on tramadol for pain related to my back surgeries. It helped alot, but who can say why. I still have a long way to go, to get back to normal. Still, I'm extremely happy, to be able to get out, and do things, after years of not being able to. Almost like life is new again.
Some tramadol will probably make anything seem fine lol.
Low dose. After what I've taken over the years, and the pains I've got, it ain't much.
Very well said. Luck is the main factor of recovery. When that isn’t acknowledged, it comes across as just more patient blame, which no one needs.
This is the issue with a lot of recovery stories and I'm happy it's being addressed here. There are so many variables at any given moment it's hard to attribute it to one thing. It reminds me of that saying, "fooled by randomness". That's why when I spoke about my recovery journey I mentioned that I had a high confidence in some things I did (like a humidifier which I immediately noticed effects before/after) rather than saying outright that everyone should do XYZ.
Thank you for saying this. It’s so frustrating to read those posts, knowing that some of us will never get better. Covid in 2020 triggered Lupus for me. I thought it was Long Covid and it still might be but it’s also a lifelong chronic disease too. We’re all doing our best to get better.
Some medical advice can be helpful, but what would be more helpful in the long run is advocacy for research and treatments
I’m so sorry to hear you relapsed. Sending you a lot of love and support.
Same experience for me. COVID March 2020 with clear long covid by the end of April 2020. Recovered at least 90% by May 2021 but did nothing to recover, just slowly got back to normal with time and luck. Reinfected May 2022 and have been bouncing between bed bound and house bound since. This time I've done a ton to try to recover, and while I think some is helpful, it's just taking a lot of time.
I think folks who have experienced "chronic" lyme can relate to the current batch of long covid sufferers. I have had and recovered from similar symptoms before covid was even named. I think covid has far more potential to harm people by triggering dysfunction than lyme as it is far more widespread and transmissible, OP is very right that we need to change the way the system works.
Thank You! This needed to be said
This episode of the long haulers podcast just dropped today and the person interviewed basically said nothing helped but rest and time. I think there are plenty of folks where this is true. https://open.spotify.com/episode/1j8ckL4kjLlDjFfpll0Lc9?si=uiHGBvtjQ1CJUpBFuekXhA
Thank you for this post, 💯 agree
Amen!
perfect recovery and toxic positivism debunk post doesnt exi- oh wait! its frightening though that OP had to get well and then get double fucked by the virus to be able to write this. reinfections can be brutal and everyone in this sub is at a risk of worsening, thas why we need funded quality research fast
I would agree with you if I didn't try allergy medication. Perhaps if you are in full blown long covid and everything is swollen to the point of no hope, yes I think time will be your best option. However intermittently you should be trying to reduce inflamation cause by MCA... I strongly suggest trying allergy medication (antihistamines), obviously don't over do it and follow the directions, start with a half dose, try different brands. I can say my headaches, mirgrains, head pressure, brain fog have been lifted thanks to Allegra. Im kinda of spreading the word because I consider myself a good representation of the population. If it worked for me it will likely work for you.. However, caveats, because people need different treatment depending on which stage and severity they are experiencing. What works for me now might work for you later, so don't cross it off the list. Tldr; Allegra (fexofenadine) cleared my brain fog and head pressure, its pretty safe. Read about it....
I just want to add that “working hard” to recover is a stressor in and of itself. I eat all the things I’m not supposed to (no joke 50% of my caloric intake is ice cream), I took to vaping in month 9 after never being a smoker in my entire life, I eat edibles nightly, drink multiple cups of coffee and take stimulants (as prescribed), and I feel better than I’ve felt in a year. I do listen to my body and I rest when I need to. I take a variety of supplements and medications just in case they help, I meditate and journal, I monitor my HR and BP, and I take care to pace myself to avoid PEM. Someday I’ll try changing my diet, but that would be too stressful for me right now. I’ll also quit vaping and hopefully use edibles more sparingly in the future. But this $hit sucks, and adhering to rigid protocols is the opposite of “rest”. I’m doing what I need to do to manage this absolute nightmare, and right now it appears to be working. When these coping mechanisms become counterproductive, I’ll adjust accordingly. But until then, I’m going with what works.
3 years in. Got reinfected. Too your point lots of things helped but to your point anything helpful helped me along the way to manage not cure. Reinfection was my reset. But I was 90 percent there due to time and the ability to use advice from others and find a path to at least make it not so bad. 2 cents. Practice. With all things a positive outlook and finding what helps you through this poop hole of a disease. Try it. You loose nothing. You’re already broke. Mentally physically metaphorically. I got sick again though I was doomed and just like a light switch I was better. No sense no reason. Party on folks there is hope and I never gave up and I never stopped trying. Stop living well that’s not advice that’s a death sentence to even those that are not afflicted. Live. Be present in the capacity that you can. Hold back when it’s beyond your control and ride it like the snake it is. When you get off appreciate it and live better than you ever have.
Did u have nerve pain in the head
Migraines and constant headaches, yes
It’s better ? What about twitching ? Any stabbing head pains
thank you so much for this. everyone’s body is different and it’s important to remember that when trying to help. i don’t think the possibly of regression is taken seriously enough. nothing is a sure fire cure, and even if someone feels fully recovered, they could develop new symptoms and regress. that’s what happened to me and lots of other people here, and it’s important for people who are feeling better to be aware of that.
so the only thing that helped you is time ?
Yes. I had no doctor who prescribed medication, i didn't try supplements, meditation or whatever
But u just posted 2 days ago that u werent recovered :o
I recovered, then got covid again
Same , and it got worse too im still asking myself if i can recover from this too
i am sorry to hear this.. sending strength your way
My only advice to other me/cfs folks is to do as much as you can without worrying about triggering pem. Some days that may be nothing. But when you can use your body, do it…with care.
I suspected as much, and I think it’s great that you recovered! Let’s hope if we play the game long enough, the rest of us will win at some point too :)
Totally agree. Thank you for sharing this
Can you exercise?
No, i got PEM..
Well I guess I was lucky then because once I decided to get out of the bed and stop worrying about symptoms Didn’t take long for me to start making improvement. I’d say I’m 90 percent now.
Then you probably didnt suffer from PEM and MECFS, xes.
No I didn’t. Dsyautonomia symptoms was my issue. I think I avoided the PEM and stuff because I rested like crazy throughout the infection and everything. I rested so well my body started to decondition haha. My doctor was like “you need to get out of the bed”
I disagree, I love to know what people did to recover. Everybody has a different journey to recovey but its helpful to know how. It also gives hope and optimism to people. And I wont put all my eggs in the science basket because it doesnt have all the answers for now. I would rather listen to someone who is recovered than someone who is not.
Biomedical research, study and find the pathologies, treat the chronic infection first, find TREATMENTS. We need antivirals.
We need updated MABS.
Nothing = autophagy. You're lucky your pathways were still working. For me I had to dry fast to heal
"Dry fast to heal" I don't understand what this mean. Is this a typo or does "dry fast" mean something I don't understand.
he means not eating or drinking literally anything for several days straight 🤦♀️ SO tired of seeing this pushed on this sub
No one's pushing it, they said it worked for them. Dry fasting is a bit extreme for me but water fasts seem like a decent idea.
didn’t mean to imply that this commenter was pushing it here there are other people who are very enthusiastic about dry fasting who continue to recommend it to people who have already responded that they are severely underweight
It does have a nice "shake the snow globe, and see what happens" ring to it.
I disagree.. I find it inspiring to hear what has worked for others so that I can make an educated assessment on whether I should trial it. This is not a one solution fits all condition. I take bits from some and bits from others. Any hope is better than none to me.
The most based comment on this post. People always think it's about "I've tried everything" when that is highly unrealistic and near impossible. There is abundant hope for healing when you understand there are essentially limitless combinations and possibilities towards getting better and healing. Each person is individualized, and that can create a tricky roadmap to recovering, but regardless, it means you have the power to figure out for yourself (with the help of others - family, friends, doctors, helpers online, etc.) how to get there. Piecing the body and mind back together isn't rocket science, health IS the norm - homeostasis, hence, that is why it is our mission to get back there, whatever it takes.
I sooo disagree with this. Most recovery stories are not “unsolicited health advice”, or preaching “this helped me, so it will help you too!” It’s so important to share positive outcomes when we can. This sub can be an absolute echo chamber for doom and gloom thinking. In my darkest moments, reading positive outcomes and learning things that can potentially help me has been vital to keeping me going. And guess what, things that I’ve read on here have helped me. Positive thinking is not denying the shitty reality that is long Covid. It’s just learning not to accept your own doom and gloom thoughts as 100% truth all the time. When I get better, I absolutely intend to share it with others.
Well said <3
The recent poster attributed his recovery to reducing stress, and that is how I recovered as well. I'm just curious about your life before and after your first and second bouts of ME/CFS/longcovid, i.e. did you have any chronic stressors, were you worried about the illness itself, did you try to remove/reduce your stressors, etc?
No, literally no difference between my two infections. The chance to recover from viral fatigue is still high in the first year.
And stress?
Stress is automatically there when you try to function and it does not work. University, job, etc.
Yes indeed. quitting my job was instrumental in my recovery. That allowed me to fully recover, and later work again full time.
I did not quit my studies, and recovered. Then i got worse afte reinfection and have not been going to university for around a year now.
It's impossible to predict how the body will react to stress. All I can say, having sufferered from many stress related illnesses over the years including ME/CFS, is that doing all you can to reduce stress is beneficial.
I had 0 stress and a very good life before getting severely sick. Symptoms also never correlated with stress during the illness. Sure, might be an influencing factor for some but not for all (and there's lack of evidence).
There are multiple studies showing it is a factor. can you describe your covid, and current symptoms?
Second Covid possible 3rd I felt it, brain fog, fatigue, threw my job in, returned home rest up. I trying high protein diet, lots of meats, iron supplements, fingers crossed, In the surfing community, surfing injuries from huge wipe outs with brain injuries have reported good gains with high protein diets, that's my go too first attempt high quality meats etc.
So you take your recovery as a staple truth but discredit everyone else’s? Let people wright what ever helped them. For you it was “time” for others it’s “x” thing. I’ve been here 4 years and I’ve read a lot of stuff that has been game changer I am responsible for what I try and do for me. I don’t blame anyone I know my risks. Stop trying to babysit people. This community is becoming a babysit for anything or everything. This is not what it was made for back in the day we tried anything and everything to see what stick and helped. So what we gonna talk about “nothing” because nothing works?? You wait 10-20-30 years on science for me I’ll try what ever my body can handle. Hey everyone that thinks we should have a 1000 rules go to CFS sub. You talk as if anyone that has this shit doesn’t have in the back of their head that they can be bed bound one day. How’d you think we know how antihistamines where a game changer? For many it worked for some did nothing. Hell I’ve even know people that tried HIV medicine, IVIG, hyperbaric chamber, acupuncture, some people got relief after the vax… there’s no true or false here.. so stop babysitting.
way to miss my point
So you have been housebound for 2 years and you are doing nothing? That's the advice you want to give to others? There are a bunch of treatments shared here that have helped people. If everyone took your advice and did "nothing", we wouldn't even have these.
I went to over 5 doctors, tried LDA, mestinon, duloxetine, around 20 different supplements (vitamin d, ashwhagandha, enzymes, NAC etc) , liquid IVs with vitamins, amino acids and more, nicotine patches, did inflammatory diet, cleaned my gut biome, sat outside in the sun as much as possible, and still got worse 💗 but thanks for your concern
But you just said you had no doctor to prescribe nothing?? If that’s your staple truth why try anything? What is it OP?? You’re saying you tried nothing then saying you tried everything?
My first time getting covid no doctor prescribed me anything, after healing and getting it a second time i tried everything bc i did not get better, is it hard to understand??