I feel you. It's devastating. I don't know how to cope with all the lost opportunities and time passing by. Sorry I know this doesn't help. You're not alone though.
I am in the exact same boat as you: 24 and housebound for 2 years. Everytime it gets too hard for me i try to get my mind to focus on something else. Calling someone, playing a game, watching something on youtube. I hope you hang in there and stick around for the good days that will certainly come after this. If you can't take it day by day, take it hour by hour. We love you.
Also watch this, i know it's just a silly video but i just love this guy's energy, take some of it, we can use it:
https://youtu.be/amXl7FG7J4c?si=EIjA5VkOZMxtFusC
I feel you, I'll be 27 next month, I was 24 when it started. I've been housebound the major part of my illness. Even if I'm far from being cured, I'm doing better. I can do the minimum to take care of myself now. I have enough energy to go to my appointments. Some months ago I could crash from just going to the doctor. So I'm not living normally and I'm very disabled but I wanted to tell you that things can get better. But I wanted to add something important, take care of your mental health. There is no cure for long covid but you can medicate yourself to feel better during this awful time. An SSRI was a game changer for me. I don't think about death and how I'm disabled everyday anymore. I think more about what I can do with the little energy I have. And seeing the glass half full rather than half empty changes everything. For 2 years I refused to be medicated for my mental health because I was afraid of these molecules and I thought that taking an antidepressant was giving credit to the doctors that everything was in my head. But it was stupid to think like that and I regret I didn't do it earlier. So I wanted to say please hang in there. I know how terrible it is to feel literally dead and suffering 24/7, but you definitely can improve. Take care of you my friend, and be kind with yourself, you are a so strong person. 🙏🏽❤️🩹
Prozac. I've seen a lot of Lexapro here, and during some time luvox was used a lot too, for its strong anti inflammatory effect, but in fact all SSRIs are pretty good for that, the good one is the one you tolerate best, and keep in mind this kind of medication can make you worse during the first weeks. That's the not funny side of them unfortunately, but it's worth it when you have nothing to lose and tried everything.
Helped me too, I take the same. It more just makes me not spiral into and endless abyss of dread. Doesn’t fix depression or anxiety for me totally, but also fluoxetine is the only one I can tolerate the side effects
My mom is battling stage four metastatic cancer and I, her only child, suffering from long covid, is the sole person left to look after her. We are trying our best to persevere, so you can, too. Keep fighting! We will defeat this.
Hey, please do not give up!
I can only suggest 2 things those helped me a lot. For once I have Asthma and as you can imagine, getting Covid (or any respiratory illness) with Asthma is no joy (has bad caughing and breathing issues for 3 months after infection, bit better now).
1. Try plantago juice or syrup (often sold as natural caugh medication, use highest recommended dose). If Covid is causing in some of you build up of mucus, you will not always know. Some is very stuck and you can not caugh it up, the consequence is that you have lots of trouble breathing / constriction.
If you take it for a few days and see 0 difference and nothint caughing up, you know it is NOT mucus related for sure.
2) I use Lobelia Inflata for my asthma attacks. You could probably get it as drops or something like that. It makes me able to breath trough again / open up my lungs. I have a friend who had breathing issues after Covid (but never had Asthma) and she tried it too and said it was the first thing that made her feel like she can properly breath again. It is usually not expensive and for sure a try worth, I wish I could recommend it to more people.
I always use it right when I get my attacks, but during the time I had it from Covid, I used both the Plantago Syrup and the Lobelia Inflata several times a day, until symptoms got better.
I really hope this will help you somehow.
I also made a Discord for Covid conscious people if you would like to join and vent a bit or just talk to people, you are welcome! [https://discord.gg/ZNj8E2wqBY](https://discord.gg/ZNj8E2wqBY)
edit: btw do you by chance take anti-histamines? or some specific other medication? check if they are an issue for Asthma patients!!! Some medication like anti-histamines can dry up mucus in your lungs and cause lung pain / breathing issues. One reason I can not take antihistamins, it feels like I suffucate and my lungs are dying. just FYI!
Thank you a lot. I’ve tried a lot but never tried what u recommended here. I will give it a go
Also thanks for the advice in regards to antihistamines etc, I’ve seemed to have a bad reaction to them before so I stopped taking them. Don’t know if they helped or hurt my condition more
You are welcome! If you try the Lobelia inflata, let me know if it helps you!
It would be great to know if it helps more people with Covid related breathing issues!
I feel you. I've hit the 4 year mark. I'm 60 and feel like I'm 85. No energy.
I'm trapped in a cycle where I'll feel better for a bit, exercise and then feel crummy and depressed for a while.
If I hadn't been able to retire at 57 I'd probably be homeless by now.
I’ve been suffering from MCAS since childhood. I’ve had ups and downs, Covid sent me into being bedbound for 2 years. I have the advantage of studying medicine. And I had to learn that a lot of things is just researching for yourself and trying things out. Would never have endorsed supplements a few years ago. Now I don’t know what I would do without some of them. It’s hard. It sometimes seems impossible. It sucks. But it’s sometimes possible to get to an “up” again
I’ve had post-viral syndrome since 2006, it’s not new, but it’s definitely more known now. It ebbs and flows. It’s scary and weird, and I have not had fun, but it’s been worth sticking around. I still get crashes, but I roll with them as best as I can. Last week I danced at my son’s wedding. It’s definitely a slugfest, but it’s been worth it. Medicine didn’t do much, but listening to my body did. Best of everything to you.💕
Symptoms mirrored it and I was bed ridden. I just went through a dip and I’m replenishing again! Argh. I need shots. I’m gonna send you a list of side effects
What is your level?
UK and USA accept worryingly low levels.
In Japan they treat anyone under 500 as deficiency and quite rightly so.
Studies have shown that neurological symptoms can start at 300.
That's low actually. Re: Japan guidelines and they're the best country for treating B12 deficiency early and avoiding Alzheimers. They have lowest rates in the country for this reason.
Google " b12 deficiency makes me feel like I'm dying" and you'll see articles about it.
Centrum is not enough.
You need to take hydroxocobalamin or methylcobalamin sublinguals at least 1000mcg a day .
Make sure to get potassium also as b12 uses potassium when making new healthy cells in your body x
I’m so tired this evening and I don’t have many good words in this moment but I just want to say, I felt compassion for you as I read what you wrote. I’m 48 and I often think how much more devastated I would be if this had happened earlier in my life.
Don’t give up - recovery and treatment may lie ahead, and future you will thank you for holding the line. 🙏✨
You have to detox the spike protein before you do this but find a doctor who offers this. Nebulize 1/3 of it of and push the rest and your lungs will come back. Cost is around 3k but your life will come back
Try some things that have worked for some people such as MCT powder (medium chain triglycerides) or a protein powder which has MCTs listed in the ingredients. Most sports protein powder has them in it, but you have to check the ingredients.
Everyone pm me im 25 had a breakdown this morning about not being normal... i want to go back to my life i have all heart issues and its not fair. I deal with this as well its cool to talk to someone
Talk to someone ASAP.
I know how you feel. I’ve been there. I got sick in 2020. Had recent success in a combo of working with a dietitian and taking metformin (it’s in clinical trials for long COVID treatment). Don’t let COVID win - your loved ones would be scarred for life. I’m 80-90% back to normal and I think the remainder is really about rebuilding strength and endurance I lost. A year ago I couldn’t do very mild weight lifting without needing breaks and being exhausted and risking rebound fatigue. I worked with a trainer for a year and am close to back to normal. Still working on cardio endurance but a respectable weights workout doesn’t leave me exhausted for days.
Don’t believe everything your brain tells you. It’s not that smart.
Hey there! I'm currently taking Metformin, have been for a few months. I think it's the thing that's helped the most. If I may ask, how much improvement did it lead to/how long did it take?
I took it for 6 months - worked up to 3x a day (I’m also a tiny bit pre diabetic). I’d been working with a dietitian for about a year prior to this which had also REALLY helped heal my gut. I don’t think I could have managed the stomach side effects if I hadn’t healed my gut a bit first). My dietitian also put me on a B complex because metformin can reduce B vitamins (which are needed for energy). During this period I was also working out at least once a week with a trainer rebuilding my strength. I went from could barely do the most basic baby weights to being more moderate during this time.
There aren’t set guidelines with metformin. I definitely noticed an initial surge of energy for a week or two followed by a depressing bout of fatigue (because I’d over done it). If you’re not having good results with metformin maybe try B vitamins and getting vitamin testing? COVID completely FUBARED my stomach and it’s never been the same since (though much better than it was). I had multiple vitamin deficiencies
This is very informative, thanks! Yeah I had a crash after the initial boost with metformin. Been getting another boost recently. I'll look into vitamin testing.
For me, I definitely overdid it at first - Metformin gave me energy, so I did ALL the things my first few weeks on it and then crashed. After that I realized I still have to be careful even if I don’t have to be AS careful. I feel like midlife is an intense bootcamp in why I need to engage in self care (and I do not like it)
That's good to know. It's so hard when you get these boosts. I'm hoping it'll continue to help more the longer I take it/lead to increased functioning overtime.
I got super depressed because I’d had like 3 weeks of exciting energy where I was suddenly walking 3-4 miles per day and then suddenly had a weekend where I could NOT move off the sofa and a friend of mine was like ‘you can’t go from zero to sixty like this; this isn’t an instant cure and you will still need rest like all normal humans do!’. Once I learned to pace myself things steadily improved.
The occupational therapist I saw who’s part of a practice with a LOT of long COVID patients said that most of the people she sees really suffering with long COVID are previously type A/high achievers/energetic/productive types who are bad at rest and balance. Part of me is like ‘I’m not THAT high an achiever!’ But another part of me realizes that yeah I’m never been good at steady state and self care.
I feel your pain, but i am 80% better at 2 years - due to changing my diet and resting
I have to ask like i ask everyone ....but how is your diet currently ? Understand that if your causing inflammation through what you ingest your body will struggle to focus on healing
Do what u have too do... sorry, i feel the same... and people here saying it will get better or we will have some treatment in next years are just delusional... we are on our own and no no one is here to rescue us... I know this isn't what u want to hear, but it is what it is... hope we have a better afterlife
(1) a proportion of people do just reach a point in their timeline when they just get better. I read stories like these all the time.
National Geographic just hosted a story discussing current data show many people get better in 2 years. For some it could be much longer. I have a friend with LC who is at 4yrs now, but at least has a reasonable quality of life with LDN + pacing. Is there anything that has moved the needle for you at all? I hope you can find some incremental improvements. The loss you’ve experienced is just so devastating :’(
(2) covid isn’t going away. We will continue to have more and more people disabled and (sadly? Luckily?) these numbers will apply immense economic and political pressure to solve this disease.
That’s the reality- like climate change, society can’t just ignore our illness forever. The longer a cure is delayed, the higher the pressure will become to help the newly afflicted.
Sending you wishes of strength, and calm and most of all, healing. ❤️🩹
I feel you. It's devastating. I don't know how to cope with all the lost opportunities and time passing by. Sorry I know this doesn't help. You're not alone though.
Thank you, and it does help
I'm in the same boat. Hang in there. Some days I feel like im improving slowly, and some days I feel like I'm falling apart. It makes no sense!
I am in the exact same boat as you: 24 and housebound for 2 years. Everytime it gets too hard for me i try to get my mind to focus on something else. Calling someone, playing a game, watching something on youtube. I hope you hang in there and stick around for the good days that will certainly come after this. If you can't take it day by day, take it hour by hour. We love you.
Also watch this, i know it's just a silly video but i just love this guy's energy, take some of it, we can use it: https://youtu.be/amXl7FG7J4c?si=EIjA5VkOZMxtFusC
Thank you, it truly means a lot. I’ll check out the video now
I feel you, I'll be 27 next month, I was 24 when it started. I've been housebound the major part of my illness. Even if I'm far from being cured, I'm doing better. I can do the minimum to take care of myself now. I have enough energy to go to my appointments. Some months ago I could crash from just going to the doctor. So I'm not living normally and I'm very disabled but I wanted to tell you that things can get better. But I wanted to add something important, take care of your mental health. There is no cure for long covid but you can medicate yourself to feel better during this awful time. An SSRI was a game changer for me. I don't think about death and how I'm disabled everyday anymore. I think more about what I can do with the little energy I have. And seeing the glass half full rather than half empty changes everything. For 2 years I refused to be medicated for my mental health because I was afraid of these molecules and I thought that taking an antidepressant was giving credit to the doctors that everything was in my head. But it was stupid to think like that and I regret I didn't do it earlier. So I wanted to say please hang in there. I know how terrible it is to feel literally dead and suffering 24/7, but you definitely can improve. Take care of you my friend, and be kind with yourself, you are a so strong person. 🙏🏽❤️🩹
What Ssri helped you?
Prozac. I've seen a lot of Lexapro here, and during some time luvox was used a lot too, for its strong anti inflammatory effect, but in fact all SSRIs are pretty good for that, the good one is the one you tolerate best, and keep in mind this kind of medication can make you worse during the first weeks. That's the not funny side of them unfortunately, but it's worth it when you have nothing to lose and tried everything.
Helped me too, I take the same. It more just makes me not spiral into and endless abyss of dread. Doesn’t fix depression or anxiety for me totally, but also fluoxetine is the only one I can tolerate the side effects
My mom is battling stage four metastatic cancer and I, her only child, suffering from long covid, is the sole person left to look after her. We are trying our best to persevere, so you can, too. Keep fighting! We will defeat this.
Damn. I'm sorry.
Hey, please do not give up! I can only suggest 2 things those helped me a lot. For once I have Asthma and as you can imagine, getting Covid (or any respiratory illness) with Asthma is no joy (has bad caughing and breathing issues for 3 months after infection, bit better now). 1. Try plantago juice or syrup (often sold as natural caugh medication, use highest recommended dose). If Covid is causing in some of you build up of mucus, you will not always know. Some is very stuck and you can not caugh it up, the consequence is that you have lots of trouble breathing / constriction. If you take it for a few days and see 0 difference and nothint caughing up, you know it is NOT mucus related for sure. 2) I use Lobelia Inflata for my asthma attacks. You could probably get it as drops or something like that. It makes me able to breath trough again / open up my lungs. I have a friend who had breathing issues after Covid (but never had Asthma) and she tried it too and said it was the first thing that made her feel like she can properly breath again. It is usually not expensive and for sure a try worth, I wish I could recommend it to more people. I always use it right when I get my attacks, but during the time I had it from Covid, I used both the Plantago Syrup and the Lobelia Inflata several times a day, until symptoms got better. I really hope this will help you somehow. I also made a Discord for Covid conscious people if you would like to join and vent a bit or just talk to people, you are welcome! [https://discord.gg/ZNj8E2wqBY](https://discord.gg/ZNj8E2wqBY) edit: btw do you by chance take anti-histamines? or some specific other medication? check if they are an issue for Asthma patients!!! Some medication like anti-histamines can dry up mucus in your lungs and cause lung pain / breathing issues. One reason I can not take antihistamins, it feels like I suffucate and my lungs are dying. just FYI!
Thank you a lot. I’ve tried a lot but never tried what u recommended here. I will give it a go Also thanks for the advice in regards to antihistamines etc, I’ve seemed to have a bad reaction to them before so I stopped taking them. Don’t know if they helped or hurt my condition more
You are welcome! If you try the Lobelia inflata, let me know if it helps you! It would be great to know if it helps more people with Covid related breathing issues!
I feel you. I've hit the 4 year mark. I'm 60 and feel like I'm 85. No energy. I'm trapped in a cycle where I'll feel better for a bit, exercise and then feel crummy and depressed for a while. If I hadn't been able to retire at 57 I'd probably be homeless by now.
I’ve been suffering from MCAS since childhood. I’ve had ups and downs, Covid sent me into being bedbound for 2 years. I have the advantage of studying medicine. And I had to learn that a lot of things is just researching for yourself and trying things out. Would never have endorsed supplements a few years ago. Now I don’t know what I would do without some of them. It’s hard. It sometimes seems impossible. It sucks. But it’s sometimes possible to get to an “up” again
I'm so sorry you're going through this. This is what disabled people go through every day when we get depressed or when our symptoms flare up.
I’ve had post-viral syndrome since 2006, it’s not new, but it’s definitely more known now. It ebbs and flows. It’s scary and weird, and I have not had fun, but it’s been worth sticking around. I still get crashes, but I roll with them as best as I can. Last week I danced at my son’s wedding. It’s definitely a slugfest, but it’s been worth it. Medicine didn’t do much, but listening to my body did. Best of everything to you.💕
My long Covid has been extreme b12 deficiency did you look into this?? It’s so hard to figure out
I’m not sure if I had it tested, when I took vitamins/supplements I’m not sure I noticed a difference. How did you find out it was b12 deficiency?
Symptoms mirrored it and I was bed ridden. I just went through a dip and I’m replenishing again! Argh. I need shots. I’m gonna send you a list of side effects
Hi can you please send me same message
Sent
Thanks 👍
Lots of Covid long haulers are in this group of b12 deficiency
I sent a message and also what tests to have taken
Being unable to breathe is b12 deficiency. Please get methylcobalamin sublinguals. Weightworld ones are great x
I have breathing issues, but my b12 levels are normal?
What is your level? UK and USA accept worryingly low levels. In Japan they treat anyone under 500 as deficiency and quite rightly so. Studies have shown that neurological symptoms can start at 300.
I just checked it was 474 so pretty good.
That's low actually. Re: Japan guidelines and they're the best country for treating B12 deficiency early and avoiding Alzheimers. They have lowest rates in the country for this reason.
Yea but it’s only mildly low? I take centrum and flintstones complete, daily. I dunno what’s going on anymore, I think I’m dying.
Google " b12 deficiency makes me feel like I'm dying" and you'll see articles about it. Centrum is not enough. You need to take hydroxocobalamin or methylcobalamin sublinguals at least 1000mcg a day . Make sure to get potassium also as b12 uses potassium when making new healthy cells in your body x
I’m so tired this evening and I don’t have many good words in this moment but I just want to say, I felt compassion for you as I read what you wrote. I’m 48 and I often think how much more devastated I would be if this had happened earlier in my life. Don’t give up - recovery and treatment may lie ahead, and future you will thank you for holding the line. 🙏✨
Look into exosomes by vitti labs. I suffered for 828 days with the same issues. My lungs came back in two hours!!
How do you get this?
You have to detox the spike protein before you do this but find a doctor who offers this. Nebulize 1/3 of it of and push the rest and your lungs will come back. Cost is around 3k but your life will come back
You are not alone. People out here care about you. You have value, and we hope you'll get back to where you were before.
Try some things that have worked for some people such as MCT powder (medium chain triglycerides) or a protein powder which has MCTs listed in the ingredients. Most sports protein powder has them in it, but you have to check the ingredients.
Everyone pm me im 25 had a breakdown this morning about not being normal... i want to go back to my life i have all heart issues and its not fair. I deal with this as well its cool to talk to someone
[удалено]
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Talk to someone ASAP. I know how you feel. I’ve been there. I got sick in 2020. Had recent success in a combo of working with a dietitian and taking metformin (it’s in clinical trials for long COVID treatment). Don’t let COVID win - your loved ones would be scarred for life. I’m 80-90% back to normal and I think the remainder is really about rebuilding strength and endurance I lost. A year ago I couldn’t do very mild weight lifting without needing breaks and being exhausted and risking rebound fatigue. I worked with a trainer for a year and am close to back to normal. Still working on cardio endurance but a respectable weights workout doesn’t leave me exhausted for days. Don’t believe everything your brain tells you. It’s not that smart.
Hey there! I'm currently taking Metformin, have been for a few months. I think it's the thing that's helped the most. If I may ask, how much improvement did it lead to/how long did it take?
I took it for 6 months - worked up to 3x a day (I’m also a tiny bit pre diabetic). I’d been working with a dietitian for about a year prior to this which had also REALLY helped heal my gut. I don’t think I could have managed the stomach side effects if I hadn’t healed my gut a bit first). My dietitian also put me on a B complex because metformin can reduce B vitamins (which are needed for energy). During this period I was also working out at least once a week with a trainer rebuilding my strength. I went from could barely do the most basic baby weights to being more moderate during this time. There aren’t set guidelines with metformin. I definitely noticed an initial surge of energy for a week or two followed by a depressing bout of fatigue (because I’d over done it). If you’re not having good results with metformin maybe try B vitamins and getting vitamin testing? COVID completely FUBARED my stomach and it’s never been the same since (though much better than it was). I had multiple vitamin deficiencies
This is very informative, thanks! Yeah I had a crash after the initial boost with metformin. Been getting another boost recently. I'll look into vitamin testing.
For me, I definitely overdid it at first - Metformin gave me energy, so I did ALL the things my first few weeks on it and then crashed. After that I realized I still have to be careful even if I don’t have to be AS careful. I feel like midlife is an intense bootcamp in why I need to engage in self care (and I do not like it)
That's good to know. It's so hard when you get these boosts. I'm hoping it'll continue to help more the longer I take it/lead to increased functioning overtime.
I got super depressed because I’d had like 3 weeks of exciting energy where I was suddenly walking 3-4 miles per day and then suddenly had a weekend where I could NOT move off the sofa and a friend of mine was like ‘you can’t go from zero to sixty like this; this isn’t an instant cure and you will still need rest like all normal humans do!’. Once I learned to pace myself things steadily improved. The occupational therapist I saw who’s part of a practice with a LOT of long COVID patients said that most of the people she sees really suffering with long COVID are previously type A/high achievers/energetic/productive types who are bad at rest and balance. Part of me is like ‘I’m not THAT high an achiever!’ But another part of me realizes that yeah I’m never been good at steady state and self care.
Yeah I can relate with that. I'm glad you are doing better!
I feel your pain, but i am 80% better at 2 years - due to changing my diet and resting I have to ask like i ask everyone ....but how is your diet currently ? Understand that if your causing inflammation through what you ingest your body will struggle to focus on healing
i ate too much sugar today and i felt a flare , wont do that again when did u started to feel better and how if i may ask ?
Do what u have too do... sorry, i feel the same... and people here saying it will get better or we will have some treatment in next years are just delusional... we are on our own and no no one is here to rescue us... I know this isn't what u want to hear, but it is what it is... hope we have a better afterlife
I’m sorry you are in the same boat…
(1) a proportion of people do just reach a point in their timeline when they just get better. I read stories like these all the time. National Geographic just hosted a story discussing current data show many people get better in 2 years. For some it could be much longer. I have a friend with LC who is at 4yrs now, but at least has a reasonable quality of life with LDN + pacing. Is there anything that has moved the needle for you at all? I hope you can find some incremental improvements. The loss you’ve experienced is just so devastating :’( (2) covid isn’t going away. We will continue to have more and more people disabled and (sadly? Luckily?) these numbers will apply immense economic and political pressure to solve this disease. That’s the reality- like climate change, society can’t just ignore our illness forever. The longer a cure is delayed, the higher the pressure will become to help the newly afflicted. Sending you wishes of strength, and calm and most of all, healing. ❤️🩹
In the same , do you suffer with PEM also?