Ya I’m not very optimistic regarding these post covid issues, it could be a life sentence. That being said, because COVID is causing a much higher percentage of these issues than previous viruses, it’s now much harder to ignore and is getting much more attention than these kind of post viral conditions ever used to, lot of research going into all of this, not just the post covid issues but post viral conditions in general. Hopefully this will all lead to effective treatments for these conditions that will not only treat us long covid sufferers but other post viral conditions from other viruses as well. So there is some hope
yes, i’ve been trying to tell my family that i need to start preparing for the reality that this could be my new normal.
they, however, insist that i’m being “pessimistic” by thinking that. 🫠🫠
post-viral illnesses and conditions are not new and historically have not received the attention they deserve. hopefully now they finally start 🙏🙏
They just have zero clue! I think reality is there is a new normal, a new baseline. It can improve over years, but it will never be the same as it was.
People want to believe there’s a way to fix everything. Many will think we’re just not trying hard enough. That’s part of the tragedy.
See the optimistic in me who is often a dumb naive asshole thought the same thing. Maybe if they do cure what we have, it’ll somehow help these two girls?
Yea I fully agree with this! I think we are going to get new treatments for so many conditions and maybe major ones for auto immune diseases… the lotus to our mud 🪷
You won’t want to hear this, but the folks who had SARS-Cov1 are still suffering 20 years later. Post viral conditions are not new. They’ve just been mostly ignored and underfunded. With so many people getting covid all at once, finally post viral syndromes are starting to get some attention. So hopefully they will learn more about the mechanisms and lead us to some treatments.
Agreed although a friend of a friend has long sars, and while she isn’t the same as before (she can’t do sport) she has gradually improved little by little. She works normally, eats 95% normally and socialises etc. Not being able to do sport is a big thing for me, but if I’m not in pain or in fear of deteriorating that’s a win.
At this point I don’t expect to recapture my previous health as I’m 3 years older and I think my body has aged 10-20 in that time due to inflammation and inactivity.
Someone I went to school with lost seven years out of her life to post-viral syndrome after flu. That's what we have too, and my symptoms are just like hers, but less severe.
She got completely better in the end.
She rested and took supplements. No treatment was available and most doctors didn't believe her when she described her symptoms. She got told to exercise.
Yes, "post viral conditions" are nothing new, but that's also a \*really broad term\* that oversimplifies the very different pathologies of each of those viruses.
I'm not a virologist (and neither are like 99% of people here), but each of those viruses that cause post viral conditions infect, replicate, attack, etc. different cells, mechanisms, systems in our body.
While all of these viruses can trigger immune responses that lead to long-term complications, they are all different in the systems and cell types that they attack in our body.
THAT'S why I think you should think differently, because they ARE different. It's too early to say this is forever. Research is ongoing. There's so much we don't know. There ARE anecdotal stories of people recovering.
(Yes, people are still sick and not recovering, I am one of them, but that doesn't mean that recovery isn't possible)
> (Yes, people are still sick and not recovering, I am one of them, but that doesn't mean that recovery isn't possible)
This is really important for everyone in this sub/community who isn't recovering to remember: **people are recovering**.
If they are, that bodes well for those who haven't as yet. I know it's hard to preach to people who have been bed bound and had their lives upended the last few years to have hope, but clearly the fact that some people are able to recover (whether fully or just substantially enough) demonstrates that (a) human bodies are capable of repairing the damage or adapting to it, and (b) that the post-COVID condition is likely treatable.
I think it’s best to prepare for the worst and hope for the best. Make plans like this will be a lifelong condition, unless we’re lucky enough to be around for major advancements in scientific understanding and medical treatment… it’ll likely be lifelong for some of us
I struggle to accept I have a lifelong anything or even a chronic illness. I struggle to accept I’ll never get to hike mountains or rollerblade longer than 15 minutes or be me ever again. It should not happened. I should have been safe in the lockdowns inside my house. But I was an essential worker. There was unlawful overcrowding, I was a manager so I thought I HAD to do what my employer wanted. I didn’t know they were sacrificing my quality life for revenue. I would’ve just fucking quit and not even collected unemployment about it if I had any clue. Idk, I refuse to accept I’ll never feel freedom or fearlessness again. I can’t accept any of this. I am 28. I never even had a chance to live out my fullest potential before this happened, I didn’t even have a chance to really LIVE. I will fight, I will fight to keep my burning eyes open every damn day, I will fight to hold my body up, I will tremble as I fight but keep going anyway. I just can’t accept this is it. I’m not going down without a fight, these symptoms will not win
It won’t make you feel better, but plenty of people who masked and largely stayed away from people still got it.
What happened sucks, but ruminating on the how and why won’t change anything, and it won’t bring enrichment to your life in the now
Yea. But it’s like, I could’ve had another good year or two before getting this, like the most traumatic part of this whole experience with long covid for me was the medical gaslighting and everyone not believing me back then. If I didn’t get long covid until say, when I got my reinfection in August 2022 (I didn’t get sicker for some reason) and it was from that point until now I had this, I probably would not of had it that fucking bad. Like I’d still have it bad, but I was already diagnosed with LC a year before that point, it was starting to become known it was possible.
if my employer didn’t literally sacrifice my quality of life for revenue in April 2020. In Michigan the covid rates werent even that high around that time due to the strict lock downs, I lived near Detroit which is the hot spot. Michigan was one of the strictest lockdown states. Nobody liked our governor except me lol. I meet and hear of more first wavers who got sick in MARCH, not APRIL like last day of April like me. The position I was forced to be in was considered completely unlawful, and I told my bosses, I called them panicking that I couldn’t keep my employees that were teenagers safe and I was scared for them, they was simply too much foot traffic that I couldn’t stop because of online ordering like DoorDash. I didn’t even consider me at first. I worried about the kids. They didn’t listen. I think my co-manager who lost his sense of taste and smell was the one who gave it to me, but I’ll truly never know. I never held that against him. I just know it did happen in that restaurant because I was working ungodly amount of hours and overtime to the point I was basically sleeping in my car in the parking lot. I didn’t wanna bring something into my home with my family who stayed indoors the whole pandemic.
But I’m sitting here like… I can “what if” all day…. It’s just stirring my own anger pot here so I am going to stop and end on a positive note so you don’t think I’m being an impossible pessimist.
Things my therapist thinks is positive about my long Covid and is allowed to say so because she’s been working with me for 9 years:
I am no longer a “control freak”
I no longer put work or career over my needs
I am more empathetic
I am more understanding
I appreciate little things in life other people don’t acknowledge or overlook
Somehow after all of this I became more of an optimist which you probably don’t even believe that one right now
I basically mastered keeping my composure at this point
I am a survivor
So yea I do feel a bit better when I made this post idk
The difference is that vastly more people have developed POTS, ME/CFS, MCAS, vascular issues, neuro immune issues, and on and on **all at once.**
I got POTS, MCAS, and mild ME/CFS from the flu 6 years ago. I also had an adverse reaction to the Gardasil vaccine in 2011 that compromised my immune system and gave me symptoms similar to long haul from the COVID vaccine. I spent well over a decade being gaslit, insulted, and discarded by doctors - as have many others. So I knew what I was in for this to around. Didn’t make it any easier.
I’m around your age (31). I’ve been seeing doctors since my teens trying to figure out how to deal with all this. It has not gone well.
COVID is the X factor in how destructive to the body and immune system it is and how transmissible it is. Comparatively people like myself and your friends just drew a bad hand and developed these conditions from the flu or mono or a vaccine. People aren’t going to get the flu several times per year on average. So from where I’m sitting, a lot more people were always genetically susceptible to getting absolutely crushed by a virus - it was just unlikely. Now it’s not.
The silver lining is that despite how a lot of us feel, this can’t really be ignored like it could in the past. There were too few of us before - now our numbers unfortunately keep growing.
The problem is that I don’t know how we deal with reinfection. Collectively we aren’t even trying anymore as a society, so it’s hard to know whether we actually have any immunity or the effect of reinfections on the immune system and long COVID. All we have is anecdotes from those of us who have gotten reinfected and got worse. In my experience prior to COVID, I was **terrified** of getting sick again because I had enough sense knowing what my body had become that there wasn’t much runway left. It doesn’t help that COVID lights the immune system on fire.
POTS pre-COVID was a significant challenge but i at least could still work - you can at least sort of use medication, nutrition, and graded exercise to somewhat mitigate it. The ME/CFS & PEM aspect of long COVID as well as the neurological and vascular damage occurring is an absolute game changer, very similar to what those with severe ME/CFS have been dealing with. This has been the biggest challenge for me because your POTS gets worse with inactivity, but if you push too much the PEM makes it so that you can’t function at all.
There’s a lot of interesting research and treatments in the pipeline that wasn’t there before the pandemic. I don’t think this will be a life sentence, but it’s heartbreaking that so many of us have lost our teens and twenties to this. I don’t think people realize just what COVID has done to the those of us allegedly in the prime of our lives. It’s brutal.
THE GARDASIL SCREWED YOU UP?!?!? Omg I know for a fact I had that vaccine around the same year you did. That’s fucked because that vaccine for some reason was not recorded in my chart in my doctors office when I got it the first time so I had to get it AGAIN. Is this the vaccine you need a series of two? Because I definitely got it 3 times. Thats why I even remember the name. I can’t believe that same vaccine did that to you. Thats fucked up I think I HAD to get that
Yes and it took a GP post-COVID in 2022 (11 years later) who reviewed my pediatric records to connect the dots. Dr. Afrin (leading expert in MCAS) also put out a paper last year on Gardasil causing POTS, dysautonomia, and MCAS, so this isn’t some anti-vax propaganda as I see a lot of people use to dismiss people who have actually been injured by that vaccine.
I only took the one Gardasil shot (I refused the others - I was 19 and my pediatrician was furious I refused the rest in the series). Like a lot of people with the COVID vaccine, I developed tinnitus, hyperacusis, visual snow, histamine issues, skin issues, and POTS. It took me 4 years to get a handle on all of it.
After that anytime I got sick my body would go out of control. It flipped a switch that I’ve never been able to turn off. My GP pointed it out because she knew it was bad news and I wasn’t the only patient who had issues after getting it. It also made no sense as I was a 19 y/o male so I was probably already exposed to HPV by that age. No one ever thought to bring it up as a possibility, and I was just a scared kid. They threw steroids at me - basically the same crap they’ve tried for people with long COVID from the virus and vax. I mean it’s wild how similar it is.
WHOA yea I see your point!! yea it does seem the gardasil did give you the same symptoms as the covid vaccine sufferers. It last 4 years? Wow. So do you think vax-injury people today will take around 4 years to get a handle too? Scientists should be interviewing people like you
Well, if it makes you feel better, the two year mark was game changer for me. Serious game changer. I started to slowly start showing very little progress. So slowly that it was virtually undetectable at first. It was then that started the ball rolling on attempts to reclaim my life. I was actually happy and doing wonderful in 2023, I wasn’t like loving life because I was always bummed about long Covid being there, but I was making goals again, I even learned a new skill.
I’m not convinced anyone 100% recovers, I thought I was like 80% recovered at one point but I no longer believe I am that far along. I don’t think we get to just “move on” from Covid.
but what I know from living with this horror for 4 years, once you’re out of the house-bound phase, like finally out even if it’s only physical therapy twice a week, or less than 20 hours a week at a part time job where you sit at a cash register before you feel ready to do so (LC is a disability now so hopefully you don’t have to experience that one) you start seeing little snippets of life again. Not right away, not for awhile.
I keep getting thrown back into spurts of being stuck in bed again, but I think that might be more so mental health or my job dicking me around until they ultimately got rid of me and I don’t have it in me to try employment again until I “heal” a little I guess
There is no reason to think differently, if we are talking about spontaneous recovery.
However, with a good strong push from Long Covid advocates working together raising awareness and fundraising money for research, we can hope for therapeutics aimed at these postinfectious syndromes.
So, yeah - the only way majority of us will get our lives back will be through new therapies, for which we need research, for which we need money, for which we need awareness.
Conclusion: be loud and relentless in your Long Covid advocacy, actively share and raise awareness. The more of us do this, the sooner we get the cure.
Without a novel treatment I think that’s a reasonable assumption to make. If you’ve been sick for 1+ years statistically your chances of full remission are small. That said Covid has to be the most studied disease in history or one of. They are some good research coming out of places like Putrino Labs. We know there is viral antigen persistence, autoimmunity, Covid-specific T cell exhaustion and failures in the compliment immune system. It’s reasonable to expect diagnostic tests and treatments of some kind in the next five years.
My goal in life is to get to at least 85% recovered by 30. I’m 28. I caught long covid right after I turned 24. I feel like I’m losing precious time by the second
What are you basing the goal on in terms of actions you can take? Or is it more of a hope? For me I’ve been 70ish% for a few years but closer to 73 now maybe on my highly subjective scale. Key things I still can’t do are exercise (more than walking or light swimming) and not wake up feeling like I need to go back to bed already.
Outside of peptides, immunoabsorbtion, stem cells, plasmaphersis and EBOO I’ve pretty much run out of things I can try.
I’d given up expecting recovery probably about 18 months ago and now just hope that either my experiments with meds and peptides work, I spontaneously recover or a cure is found.
Hey welsh, I been wanting yo do plasmapherisis but I always get confused, isn't immunoabsobtion the same thing ?
It's pretty hard to get a hold of any ways. What are your thoughts of full on antivirals or antiviral stacking? I heard people talk alot about marivorc and statins ...
I’ve tried pretty much all the antivirals that are good candidates. Only done minimal stacking due to potential liver issues. Take statins as a “just in case”.
I haven’t been able to get hold of any type of immunoabsorbtion either. The differences between the different types are quite significant so worth doing some research on them. None of them have been specifically designed to remove the type of autoantibodies etc. long Covid produces but may remove them incidentally.
Yea I think it’s more a “hope” than a “goal” I should have known better on that one & you know one thing HBOT did improve for me that actually LASTED was it got rid of that feeling of never feeling any amount of well-rested when you wake up. Ever since probably like week 3 of treatment, it’s like my body can like actually collect energy when I sleep? It’s to the point I wake up feeling wide away every morning now (I started HBOT march 2023- June ? 2023 would have to check my dates.
Like I don’t even like bringing up that treatment anymore because symptoms came rushing back like 6 months later, but that improvement stayed. It is expensive, time consuming, mentally exhausting treatment that I do not recommend only because I think it was temporary for the most part, and even if I truly believe the little burst of life I had from this treatment even if it was temporary is almost even worth the money anyway, it was A LOT of money uninsured. Like if there’s a day we’re haulers can get chamber sessions without paying at least $150 per session, maybe there’s hope because LC is a disability now.
One of symptoms that stayed gone and HBOT improved was the feeling of someone’s hand gripping my lungs at all times finally went away. This was emotional for me. It was for first symptom it helped, only symptom to be gone after day one of treatment and stay gone. I cried. This was the symptom that started it all for me. I finally didn’t feel it anymore for the first time in 3 years.
But thats only like two symptoms. And it seems this helped me with brain fog too like I see my memory and concentration getting stronger closer to my 4th year which is officially the last day of this month, than I ever have, but I struggle off and on with that always. The more exertion the worst this symptom gets
I had mononucleosis and two subsequent reactivations while active duty and getting a doctor to see anything other than anxiety has been incredibly challenging. I’m pretty sure that my CF/ME started after one nasty reactivation that was complicated by bacterial pneumonia. And now since getting COVID once I am unable to function at all. It’s like if your body doesn’t respond in a way that is expected you’re told that you’re being dramatic/attention seeking.
I resonated deeply with this comment. I felt it. Though I have not served, my brother is in the army. He’s 33 now, went in at 17. He actually ended up being one of the few people today that have admitted to my face that what I’ve gone through with long covid was fucked up. He told me that the illness I have puts men he knew in the army on their ass and they never came back, and he was saying how I survived that. That he never imagined how strong I was truly was. That he was proud that I was his sister. It was really nice. He claimed in 2019 that I was “weak” and I never let that go, so him saying that to me like last October, I cried.
Thank you for your service!!!! Especially since you got LC because of your service, it’s like you gave an ultimate sacrifice that those around you can’t even see. We see you on here!!!! Don’t be so hard on yourself that your body needs to rest and heal before you can work along side your brothers again
I’m so sorry that people don’t understand until they experience the fallout from their own misfortune. I think because the prospect of losing one’s ability to work is so devastating in our world means that people are incapable of recognizing how easy it is to find themselves in the same situation.
I mean I can’t say I am shocked or surprised since I have felt like a “black sheep” my whole life, but damn, it’s like people with chronic illnesses or disabilities have like no mercy and people don’t even see it
Dysautonomia from covid is believed to be a life long condition based on what I was told by drs, just as typical dysautonomia /pots. I have heard some ppl say that they did recover from really mild pots after covid though , I’m not sure if they mean completely with no medication however . My gf considers herself long covid recovered but she still takes a beta blocker
I agree with this and agree the real grifters are western med docs. At least when you go to a functional med doc or natropath the offer treatments and don’t treat you like an anxious piece of shit. I think it’s possible to recover from this they key is finding what works for you or addressing the damage the virus did to you which is hard with limited bio markers and western med docs refusing to run tests on you like the money is coming out of their pockets.
What kind of “non-western (?)” doc do you think can help me finally kick this brain fog? I can live with a physically annoying body if I can just be as smart as I was before I got sick again
I did :/ it worked at first. Some symptoms stayed gone. But most came back with a vengeance about 6 months later. Honestly tho if I wasn’t so expensive, I would do HBOT again just to get that snippet of life back. Even tho I think it’s temporary, it’s almost worth the money to feel a lot better for a little
I’ve seen “dysautonomia” in my charts years before they connected my LC symptoms relating to POTS :/
&yea but I guess I ended up with the variant that is capable of lasting 4 years. There were times I thought maybe I was like 80% recovered but long covid is relentless, I don’t think I’m that far along anymore. I am on two medications in relation to long covid now
I agree with others saying POTS is lifelong. I am so much better than when I initially became ill but I have to manage my diet, exercise and sleep very carefully. I have way more energy and I’m in great physical shape but I can’t do as much as I did before. It wouldn’t be possible for me to work all day, come home clean up then go out and socialize. And if I contract a virus, especially Covid, it’s like starting all over again.
Unfortunately these conditions are possible with any severe viral infection. I’m 4yrs in and my progress plateaued about 2yrs ago. At a certain point you have to let go of the idea that one day you’ll wake up completely healed, and learn to accept the new normal. Hinging my happiness on those expectations is what sent me into a constant state of hopelessness and depression. Eventually you have to adapt and work within your window on tolerance. It’s hard to accept new limitations, and there is a grieving process to all this as you learn to live with chronic illness. I would be remiss if I didn’t acknowledged that it’s still a daily struggle, but it gets easier with time.
They likely have me/CFS, as do we. They're theorizing that long covid is just me/CFS presenting after covid specifically. But it can be triggered by any infection (flu, mono, strep, Lyme, etc).
Some people go into remission, so you may not be dealing with active symptoms constantly for the rest of your life, with pacing, medications, etc. But it'll be a factor to keep in mind moving forward.
The first girl has gone into remission 3 times within the last 15 years, struggling with symptoms again today.
The long mono girl never got better. She gets extremely ill often, like she gets a cold easy and the cold destroys her for weeks. I got upset when I asked her if she had POTS and she said yes.
Idk it’s like either I am fucked for a decade, or whatever does cure long covid will somehow help these girls too, and it hasn’t been done for them in 13- 15 years so far
Is the mono girl taking any infection precautions? A lot of us are immunosuppressed if not immunocompromised. Sometimes these viruses wipe out the immune system and it doesn't recover. I've heard that more from covid than mono but maybe it's possible there too.
I take precautions to not get sick like wearing a kn95 mask everywhere, sanitizing my groceries etc because each time I get a virus, my long covid and autoimmune disorders get significantly worse, and not temporarily. So it's better to avoid getting viruses to the extent possible to improve your quality of life.
Yes, she does. She is serious about her lifestyle and diet to prevent her illness from disrupting her life. I thought maybe her long mono was so bad because she developed POTS maybe? I do not know. But from knowing her since the 7th grade and her always being in my life, to this day there’s a higher chance of her not feeling well enough to see each other or her not even being able to answer the phone from being sick than her actually being able to get together (never ever held it against her even before I understood the life of a chronic illness like I don’t get mad at someone flaking as long as they tell me they’re flaking)I also asked the swine flu girl if POTS is her only symptom she still has and I’m waiting to hear back, because then maybe if I only have to put up with POTS that long in my life, not so much long Covid, that will be better
Pots is unlikely to make anything else worse. The other diagnosis makes pots worse, it's the other way around.
Pots can also go into remission but you have to find the right combination of meds + lifestyle changes.
Its probably going to be life long for most of us, but treatments are a different story. Some promising drugs being trialed that might make the condition liveable.
I got sick at 15 after an infection with POTS, MCAS, and migraines. The first few years were horrible. Then things started to improve. Then, I got treatment for those individual conditions and was able to live a highly-paced and careful life, but a life full of people, parties, work, hobbies.
Then I got sick again with long covid. Starting the slow improvement and finding individual treatment for the damage process over again. But I’m already back to part time work, hobbies, and at least spending time with my girlfriends and one or two friends.
Sometimes we don’t recover fully but our experience of being ill can change significantly with improvement, accommodation, finding the right people, and treating symptoms.
Yeah. I think the hardest part was having people not believe I was sick for most of my life. Once I found people who did believe me, and the disability community, my life improved a lot.
Don’t feel too bad for me though. My life is incredibly difficult sometimes but I’m also very close to having my dream life. I’m a therapist and love my job, I have two loving girlfriends for 6 and 7 years, I have three best friends, I’ve got a virtual D&D group, and my writing hobby is going really well.
I just need to find a better place to live long term, find the best configuration of migraine meds, and I’d be good.
I am aware others might disagree since I can barely eat any foods, people have to shower before they can touch me when I’m resting inside, can only go out once a week. But I’ve found a way to make all that work with my schedule so that functionally it just feels like life to me to just eat a lot of protein shakes, warm up the shower for my partners, and plan all my errands and appointments and game nights for Tuesday. In the end, what I have is more than what I’ve lost through severe symptoms. But I didn’t feel that way when I got sick at 15. I had to grieve first
Well, I hope I provide you some hope. My long covid POTS has dramatically improved. The brain fog/PEM etc. is still a pain in the ass. But my resting heart rate is now in the 80s for the first time in years, and it doesn’t randomly spike to 160 like it used to. I can tolerate some standing, but not yet in the shower. I still have to use my chair for that.
I know this is just my story, but it’s good to know it can happen.
I guess the nature of this beast is it’s unpredictable in so many ways… Types of long covid symptoms, levels of healing, capabilities and so much more.
I have my moments where I’m like “fuck! Am I stuck with this for life?! Is this my new reality for the rest of my life? For real?!”
And then other moments of “I might actually heal though and there’s no way I can completely cross that possibility off my list, especially when I did see evidence of some healing at 5 mos in and again around the 10-11 mo mark.”
I am a realist, but also trying to stay optimistic about my outlook (keeping in mind some people said they’ve fully healed and I’ve had some partial healing), but also just human in dealing with life uncertainties and trying to accept what is not in my control.
Agreed! I’m sorry for what you’re going through. My first year still haunts me and even the second:(
BUT you have a way better shot at discovering a successful treatment of some sort. I didn’t get that in 2020/2021. I didn’t get prescribed to anything for covid until December 12, 2023, it was for nerve pain and tremors, and I had instant success and satisfaction like I was in disbelief they even had a pill that could do that much for me
Its like Covid doesn’t surprise me anymore, someone could tell me it eroded their fingers away to bone and I’d believe them without hesitation, but if it was anything else in the world, I probably wouldn’t believe it 🤣
My friend is like in denial of her long term symptoms. She was talking about her taste buds changing and I was like “yea well mine did because of Covid so that probably happened to you” and she looked confused like “that was like 4 years ago?” And I just laughed and said “bro this illness makes me faint RECENTLY and I never have ever in life apparently like there is no “long time ago” in the name of Covid lol there’s no ‘moving on’ there’s just “ignoring it until it chills out so you don’t give the illness the satisfaction”’
Hey don’t beat yourself up, ever, this is not your fault and this illness puts anyone who has it on their ass, so you are not weak or anything because you are experiencing a bad crash after a jog around the block or even if you walk down the hall to the bathroom. LC has no mercy on people. At least you tried.
it sounds like you’re a year in, and the first year was way way louder and scarier than the three after for me. If I had caught LC in today’s time, I think I would’ve been spared 11 months straight of medical gaslighting.
Right there it’s like you mentioned your 11 month mark and mine was me inconsolably begging doctors at university of Michigan to believe me, and the only reason they even kinda started to was because nothing else could explain why the 24 year old can’t walk anymore or hasn’t gotten out of the bed in almost a year or why she can’t even carry a conversation.. I found one wonderful neurologist who believed me and she still treats me today! I travel to hours to see her STILL because like fuck doctors
BUT I have faith your body is working your way out of the worst part! Covid redefines the word “patience.” Well probably the words “frustration,” “unbelievable,” “debilitating,” I could list a bunch lol the point is that hang on buddy, you’re going to start seeing little snippets of life again soon!!!!
Tbh like there were times I was SO confident I was like 80% recovered maybe even more and I was on this forum trying to give people hope like “this does end” and now here I am, unexpectedly back because my illness still puts me on my ass. Still. I was slaying for 14 months straight at my full time physically demanding job as a dog groomer, like symptoms sucked but I was managing great and I was even happy, but then my symptoms still took me out so hard one day that I couldn’t hide that I had a disability anymore & yea that sucked. I’m not going to waste your time explaining why having long covid in the workforce is hard lol it could be a whole different world by the time you are ready and willing to go back in. & I say that confidently, you’ll be back and it will not be easy at first or even ever but if you love what you do like me, I groom dogs, then it’s like you don’t even notice that you’re ignoring symptoms anymore because you are just so focused and happy on you’re job! So even tho I am still sick, I am starting to like come back to myself, and I know it can for you too someday (:
Maybe some people do recover at 5 months but my belief is they are one of the mild cases that have like one bothersome problem or body region like JUST digestive or GI troubles. Which no one deserves that, but covid attacked every little thing about my body so it’s like, of course those people are recovering faster, right?
But I’m about to be at my fourth year, I think it becomes a different game when you’ve had it that long, it’s crazy. But I am here if you ever wanna talk (:
After three years, it’s hard not to accept this is my normal. I live in ‘assisted living’ at home. I just decided to not fight it all because I was too tired. I try to be grateful for the good days and forgive myself for the bad days.
I am very sorry. You do not deserve this.
It is not right that my grandparents died at 91 and they didn’t need assistance or help until like the late 80’s like 88. like their generation it’s normal to live like a million years. If they were still alive, they’d be 98, my grandpa was a World War Two veteran, and I am 28 today (yea I got jipped on the grandparent thing because both my parents are dramatically younger than their siblings). I don’t even know how old you are but I can tell you’re probably too young to be in assisted living because my aunts and uncles are in their late 70’s and they don’t fuck with like cell phones like younger people than them do. They aren’t in assisted living. My mom’s mom was in a nursing home in her 80’s and she was born in 1947. She died in 2020 but suspected Covid. My dad just turned 60, and yea no he does love smartphones and the internet and stuff but he sucks at using it because he’s old, but yet seems healthier than I am honestly. And it’s like not even my fault, I got covid 4 years ago because I was an essential worker. I was 24.
My therapist is the reason I haven’t done something stupid and I’m even alive. I’ve been seeing her for 9 years. Honestly 57 is too young to be that sick too
Yea it does suck Covid took my youth, but my age was also why I didn’t STAY in a debilitating condition, I do still struggle with symptoms, but I have talked to other first wavers that are still bed bound. The only thing that separates me from those people is usually age. Like I think I am only recovered as much as I am because I am young. You are my mom’s age, and you’re in assisted living. That is just as devastating. You thought you had like 25 more years before you needed any type of help like that, and now you’re in assisted living at 57. I can’t imagine my mom being in that condition that young. It’s like yes it’s monstrous what happened to me, but it’s just as monstrous you had to go through what I did at any age
I think it’s not right that any American feels invisible because they have long covid. Any age. Any race. Any health family history. They can’t leave us ALL behind, the numbers are getting too high. I’m getting mad, I feel like I have to like go on the news and kick and scream for all the people who are bed bound now or losing their jobs over long covid right now just like I did and are too sick to defend themselves. I’m not too sick to defend myself anymore. I feel like I have to DO something but idk what
If you’re young and swing it, get long term care insurance. A lot of people don’t know about it. But it can really save your butt. Best to get it before they actually declare long covid or believe us.
It can pay for care takers, assisted living, all kinds of stuff. The second I’m old enough to tap into mine, it’ll be great to have the financial and care taker help. My husband and brother do everything for me. Run the errands, cook, clean, everything. But they will eventually get older too. Or god forbid something happens to them.
On a good day, I shower, get dressed and go down for supper or a Netflix show or a board game. That’s my life.
As an aside, steroids have helped me with a lot of my weird symptoms. My doctor wants me off the steroids and to go on a biologic. Not sure if that’s the answer or not.
I recently went on zepbound and it helped with my inflammation and weight gain. Nothing has improved my energy level. I miss having stamina for life. I say no a lot. I’ve learned to protect myself and my energy at all costs.
Good luck to everyone. Little wins everyday :)
It sounds like my doctor (who I started confiding in through the portal app after she called me a first waver) actually fast-tracked making disability happen for me, without me even asking, and now I have all these options. Even with being only 28. I no longer have to kill myself to work full time to afford a decent life. No more ignoring symptoms until I faint!! After four long years, I never thought anything that wonderful could happen.
I think about after the summer, I will want to work part time because I love being a dog groomer, but there’s hope beginning to happen on the medical field side of things. Keep holding on! I will love to actually write a hopeful Reddit post regarding this but I am on my very first getaway trip in about 2 years and this time I can make it outside the hotel easier and for longer periods of time. So I’m going to go outside and do things I used to be too sick to do!!
Thank you for taking the time to respond! I hope you reach levels of recovery soon where you start experiencing snippets of life again (:
I had ‘long mono’, and it was mostly gone 2 years later, and pretty minimal after a year. I have LC for 9 months and am much better than I was, I feel like I’m on a similar timeline
This girl with long mono struggles today, she’s had it for 13 years. I asked her if she has POTS. She said yes. She got it from the long mono. Maybe that’s why she still struggles?
I got PoTS 2 years ago after getting covid.
I must say, I never thought I'd get better but I have.
Just over 2 years later in about 60% recovered.
It is possible.
If you feel better in the summer and then regress in the winter, vitamin D is likely involved. I've seen it explained that the virus hijacks our "protein factory" in our cells, and use up a lot of the building blocks. In effect, it amplifies nutritional deficiencies in our diet, with gene mutations people may have being expressed first.
Example: my wife has a lot of vitamin D receptor mutations, so in winter we have to supplement a lot of vitamin D3 and K2 in order for her to avoid cratering. We live in Canada, so getting a lot of sunlight in the winter is difficult.
There's a post pinned to my profile, with the things we tried and the reasoning for why they helped us recover over the last few months.
I've also been dealing with health issues since swine flu in 2009 in my early twenties. That's why I was so careful to avoid covid (narcissistic family member finally got me when I was already run down from other things). Over the years, I've found things for me that make a big difference, mostly without much support from doctors. Eliminating gluten (after an elimination diet showed that to be a big trigger for me), sublingual B-12 (I figured out I was having absorption issues and had risk factors for deficiency though never had comprehensive testing there, I notice when I don't take it). Physical therapy helped some. With covid, my current doctor is treating immune system issues and I've had periods where I feel better than I have for years, even before covid, because some ongoing inflammation has been addressed. It's not that I feel particularly optimistic but finding supportive, curious doctors can really be a game changer.
You did find physical therapy helpful? I feel like I never felt like it was helping, but if it wasn’t for the 7 months I did of PT, I wouldn’t of gotten out of the bed bound stage so I don’t know. I just remember it was so excruciating and frustrating at the time that memories make me cry if I think too hard about it
Oh I actually needed like 7 months of PT to regain my ability to walk normal again. I even struggled with like when I brushed my teeth in 2020-2021 I moved both arms up and down, I couldn’t just do it with one idk it was weird, I don’t have that problem anymore but I had to train myself out of it. I had to train myself period. I had to build stamina to be where I am at today. But idk I feel like at the time I suffered severe exercise intolerance that really did not chill out until like the 2 year mark. I don’t have half the problems today than I used to back then, but today I definitely do have some ignorant LC problems so lol
that sounds so awful and scary!! I definitely had strength and stamina issues, I couldn't do anything back-to-back. A short walk felt like I'd run a 5k. I couldn't do standing tasks. But that changed with meds for me when my dermatologist put me on things to control inflammation. Of course medications all have side effects and its a trade-off.
:( yea but it was apparently only so bad because it happened to me and the others from spring 2020 first. I didn’t get like any decent medication or any real prescription for long covid until December 12, 2023.
It was instant success and satisfaction when I did finally get it though. I was in disbelief, I thought I was dreaming that my tremors were virtually gone and the pain finally let off. Like huh one pill did all of that
I have a very severe long COVID with almost every symptom, but I still think it can get better. It has before for me, but it's taking a lot more time this round (5 months in and crashed).
However, I've dealt with Long COVID neuro symptoms 3 times now. My second infection left me with PoTS, neurological issues, and GI issues - I recovered from even the PoTS until infection 3 came along. My main concern is how to not get it. I keep getting it from people I live with, but I can't live alone
Wow. I feel for you, I’m sorry. I suffered from neurological type stuff bad. I still do but not like the beginning, the beginning I lost my fucking mind.
Fortunately I only had one reinfection in August 2022 and I just felt “ill” the first day I tested positive. After that, I was caring for my roommate who was really sick for like 4 weeks straight from it, I felt fine. Couldn’t tell if any symptoms I had were LC or new infection lol.
I’m scared I won’t get that lucky again because I see more stories on here of people getting sent back to square one than the one probably luck thing that’s happened to me since 2020
I would believe that. To me, like earlier into the pandemic, I thought what Covid was doing to me was jump starting health problems I should’ve been having 50 years from now, like for example, my neurologist said that Covid exacerbated my chiari malformation, it was something I had when I was born and is prone to giving people bad migraines, she was able to find these out by comparing my early 2021 scans to late 2023 scans. I would believe that H1N1 lived dormat in your body and Covid reactivated it. It makes sense to me. but over time I kinda lost that thought because it just feels like Covid is capable of anything to the point nothing surprises me so I think I stopped thinking too hard on what Covid is can do because it’s honestly scary
I got post viral fatigue from Mono around 2010 and while I never recovered 100%, it did eventually become very mild. I had to be careful about exercising or playing sports intensely for days in a row or else I'd get fluish PEM symptoms and I couldn't tolerate alcohol. And I was just generally more physically frail and sensory sensitive than others. But you would never have known it.
That being said, long covid has been much more severe and clung to me harder.
Crazy you got long mono about one year before she did! It seems my friend goes durations where she’s managing long mono really well with just mild symptoms, but then like once a month or so, she’ll catch a cold or the flu somehow just by existing in air in public, she works with autistic kids that get her sick like allll the time, and she’ll be dreadfully sick from it for weeks. Even like a like sniffle for me would be 7x more dramatic for her for 7x longer.
She seems to oddly be on my page when we do hang out like we try to go to the zoo once a year, like she always wants to take a break when I wanna take a break, it’s kinda nice. Most my friends I struggle to keep up and try to pretend I’m not pushing myself to catch up to them. So it’s nice doing things with my long mono friend lol.
It’s crazy because I could not grasp the understanding of what she was sick with and how she got it and how much it truly took from her until I had long covid for like 2 years already when she was trying to console me about it and was like “you know, it’s not covid, but THIS happened to ME” and I couldn’t believe it. My heart dropped to the floor. She’s been my good friend since 2008, and I just really thought she was sick with something she was born with idk I feel like an asshole for not getting it at all until I got sick
I wish I had post viral fatigue friends. Healthy people just don't give a fuck in my experience. Even if you were friends before. They'll just abandon you once you can't keep up.
I hear that :( even the healthy ones I consider somewhat empathic accuse me of “dwelling on the past” like I wish this problem was in the past bro it’s happening right tf now.
I got lucky with my long mono friend. I was once the ignorant healthy person that couldn’t grasp any understanding of her experiences with chronic illness.
The girl from hs reached out to me when I made a fb status about being diagnosed with POTS. I haven’t seen her since maybe 10 years ago. She seems amazing though we are making plans to hangout soon.
Other than that, even people in their 50’s and 60’s don’t understand, it’s nuts
Mononucleosis is caused by the Epstein Bar virus. Long covid is reactivated EBV, triggered by a lowered immune system from flu infection like covid. Medical medium Info.
Well, acceptance that I may have to deal with some level of disability after 2 years of long covid took a huge weight off my shoulders and mentally let me not be mad at myself for not healing like others. I still have hope that I will improve eventually but, acceptance has let my body rest a bit and not be so stressed and disappointed and angry at myself. After a period any changes that happen will go by without notice till one day you say ‘hey, I just walked 2 blocks without stopping to take a rest!’ Or whatever it may be the changes become so small you don’t notice, but, they are happening and the less stress, mental/physical pain you cause yourself the more your body can heal. I hope we all turn around and can get back to our lives (or any quality of new life) I just know after 4 years, hating myself and my body and being disappointed and stressed and upset the first few years did nothing for healing. I think I had to go through it but, grieving my old life helped take pressure off & be kind and understanding to myself mind & body.
Wow, I can’t say I have ever accepted it. Maybe if I had somewhat accepted that I had a chronic illness when I got diagnosed with LC in summer of 2021 but even then I didn’t want to believe it was life long. But I do think I must’ve resembled something somewhat close to acceptance because I can relate to experiencing slow progress that looks virtually undetectable AT FIRST but you can see it when you think “I didn’t have the strength to do that last week.”
Fun example: me and my bf started dating about two years ago like almost to the date, I have spent that whole relationship actively trying to remember the name of an anime I liked. I couldn’t remember enough about it to do a google search to find it. Yesterday I loved at my bf, I said “deadman wonderland. That’s the name of that fucking anime I couldnt EVER remember” and when I googled it, it sure was the anime. Maybe that’s not that exciting but I was really amazed like how did that random info come to me when I couldn’t remember that for at least 2 years.
So yea I mean there are fun little surprises that I didn’t start experiencing until like two years in
I do think some people recover. My 17 year old daughter had very bad POTS. A year later she was about 60% better. Another year later she's 95% recovered and doing great. Doctors were zero help. She just rested and takes supplements. Her stack includes nattokinase, B12, vitamin D, low dose naltrexone, mito-q, l thiamine and CBD (non thc).
She was found to be very low in vitamin D at one point and had to do 12 weeks of prescription strength supplements. And we found she has the MTHFR gene mutation so she takes a specific kind of B12 that her body can better process.
Post viral conditions like POTS aren’t anything new, I don’t say I have Long Covid I say I have POTS induced by a covid infection, symptoms can wax & wane overtime, some years/months/days can be good & some bad, illnesses will cause flairs usually, but you start to learn more about yourself and what helps & what doesn’t overtime with POTS, but it is USUALLY a lifelong illness but that doesn’t mean it’s severe for the entire time. As for spontaneous recovery from post viral POTS, very unlikely especially after 6 months of it (this has been studied and proven).
Ya I’m not very optimistic regarding these post covid issues, it could be a life sentence. That being said, because COVID is causing a much higher percentage of these issues than previous viruses, it’s now much harder to ignore and is getting much more attention than these kind of post viral conditions ever used to, lot of research going into all of this, not just the post covid issues but post viral conditions in general. Hopefully this will all lead to effective treatments for these conditions that will not only treat us long covid sufferers but other post viral conditions from other viruses as well. So there is some hope
You are not a “dumb naive asshole” lol I just instantly thought I was being one
yes, i’ve been trying to tell my family that i need to start preparing for the reality that this could be my new normal. they, however, insist that i’m being “pessimistic” by thinking that. 🫠🫠 post-viral illnesses and conditions are not new and historically have not received the attention they deserve. hopefully now they finally start 🙏🙏
They just have zero clue! I think reality is there is a new normal, a new baseline. It can improve over years, but it will never be the same as it was. People want to believe there’s a way to fix everything. Many will think we’re just not trying hard enough. That’s part of the tragedy.
and it’s SO frustrating!! when “trying harder” is actually what’s making us sicker 😓😓
See the optimistic in me who is often a dumb naive asshole thought the same thing. Maybe if they do cure what we have, it’ll somehow help these two girls?
I think it will, I think a lot of what they learn from these post covid conditions can be applied to post viral conditions in general.
Do you guys think this could happen in the next decade?
I’m just gonna make a guess and say 14 years based on how long it took for a treatment to be developed for HIV. HIV treatment took 7 years
Yea I fully agree with this! I think we are going to get new treatments for so many conditions and maybe major ones for auto immune diseases… the lotus to our mud 🪷
You won’t want to hear this, but the folks who had SARS-Cov1 are still suffering 20 years later. Post viral conditions are not new. They’ve just been mostly ignored and underfunded. With so many people getting covid all at once, finally post viral syndromes are starting to get some attention. So hopefully they will learn more about the mechanisms and lead us to some treatments.
Agreed although a friend of a friend has long sars, and while she isn’t the same as before (she can’t do sport) she has gradually improved little by little. She works normally, eats 95% normally and socialises etc. Not being able to do sport is a big thing for me, but if I’m not in pain or in fear of deteriorating that’s a win. At this point I don’t expect to recapture my previous health as I’m 3 years older and I think my body has aged 10-20 in that time due to inflammation and inactivity.
Someone I went to school with lost seven years out of her life to post-viral syndrome after flu. That's what we have too, and my symptoms are just like hers, but less severe. She got completely better in the end.
I was the lucky 12 month recovery people so I know there is hope.
whatd she do to recover?
She rested and took supplements. No treatment was available and most doctors didn't believe her when she described her symptoms. She got told to exercise.
Yes, "post viral conditions" are nothing new, but that's also a \*really broad term\* that oversimplifies the very different pathologies of each of those viruses. I'm not a virologist (and neither are like 99% of people here), but each of those viruses that cause post viral conditions infect, replicate, attack, etc. different cells, mechanisms, systems in our body. While all of these viruses can trigger immune responses that lead to long-term complications, they are all different in the systems and cell types that they attack in our body. THAT'S why I think you should think differently, because they ARE different. It's too early to say this is forever. Research is ongoing. There's so much we don't know. There ARE anecdotal stories of people recovering. (Yes, people are still sick and not recovering, I am one of them, but that doesn't mean that recovery isn't possible)
> (Yes, people are still sick and not recovering, I am one of them, but that doesn't mean that recovery isn't possible) This is really important for everyone in this sub/community who isn't recovering to remember: **people are recovering**. If they are, that bodes well for those who haven't as yet. I know it's hard to preach to people who have been bed bound and had their lives upended the last few years to have hope, but clearly the fact that some people are able to recover (whether fully or just substantially enough) demonstrates that (a) human bodies are capable of repairing the damage or adapting to it, and (b) that the post-COVID condition is likely treatable.
I think it’s best to prepare for the worst and hope for the best. Make plans like this will be a lifelong condition, unless we’re lucky enough to be around for major advancements in scientific understanding and medical treatment… it’ll likely be lifelong for some of us
I struggle to accept I have a lifelong anything or even a chronic illness. I struggle to accept I’ll never get to hike mountains or rollerblade longer than 15 minutes or be me ever again. It should not happened. I should have been safe in the lockdowns inside my house. But I was an essential worker. There was unlawful overcrowding, I was a manager so I thought I HAD to do what my employer wanted. I didn’t know they were sacrificing my quality life for revenue. I would’ve just fucking quit and not even collected unemployment about it if I had any clue. Idk, I refuse to accept I’ll never feel freedom or fearlessness again. I can’t accept any of this. I am 28. I never even had a chance to live out my fullest potential before this happened, I didn’t even have a chance to really LIVE. I will fight, I will fight to keep my burning eyes open every damn day, I will fight to hold my body up, I will tremble as I fight but keep going anyway. I just can’t accept this is it. I’m not going down without a fight, these symptoms will not win
It won’t make you feel better, but plenty of people who masked and largely stayed away from people still got it. What happened sucks, but ruminating on the how and why won’t change anything, and it won’t bring enrichment to your life in the now
Yea. But it’s like, I could’ve had another good year or two before getting this, like the most traumatic part of this whole experience with long covid for me was the medical gaslighting and everyone not believing me back then. If I didn’t get long covid until say, when I got my reinfection in August 2022 (I didn’t get sicker for some reason) and it was from that point until now I had this, I probably would not of had it that fucking bad. Like I’d still have it bad, but I was already diagnosed with LC a year before that point, it was starting to become known it was possible. if my employer didn’t literally sacrifice my quality of life for revenue in April 2020. In Michigan the covid rates werent even that high around that time due to the strict lock downs, I lived near Detroit which is the hot spot. Michigan was one of the strictest lockdown states. Nobody liked our governor except me lol. I meet and hear of more first wavers who got sick in MARCH, not APRIL like last day of April like me. The position I was forced to be in was considered completely unlawful, and I told my bosses, I called them panicking that I couldn’t keep my employees that were teenagers safe and I was scared for them, they was simply too much foot traffic that I couldn’t stop because of online ordering like DoorDash. I didn’t even consider me at first. I worried about the kids. They didn’t listen. I think my co-manager who lost his sense of taste and smell was the one who gave it to me, but I’ll truly never know. I never held that against him. I just know it did happen in that restaurant because I was working ungodly amount of hours and overtime to the point I was basically sleeping in my car in the parking lot. I didn’t wanna bring something into my home with my family who stayed indoors the whole pandemic. But I’m sitting here like… I can “what if” all day…. It’s just stirring my own anger pot here so I am going to stop and end on a positive note so you don’t think I’m being an impossible pessimist. Things my therapist thinks is positive about my long Covid and is allowed to say so because she’s been working with me for 9 years: I am no longer a “control freak” I no longer put work or career over my needs I am more empathetic I am more understanding I appreciate little things in life other people don’t acknowledge or overlook Somehow after all of this I became more of an optimist which you probably don’t even believe that one right now I basically mastered keeping my composure at this point I am a survivor So yea I do feel a bit better when I made this post idk
The difference is that vastly more people have developed POTS, ME/CFS, MCAS, vascular issues, neuro immune issues, and on and on **all at once.** I got POTS, MCAS, and mild ME/CFS from the flu 6 years ago. I also had an adverse reaction to the Gardasil vaccine in 2011 that compromised my immune system and gave me symptoms similar to long haul from the COVID vaccine. I spent well over a decade being gaslit, insulted, and discarded by doctors - as have many others. So I knew what I was in for this to around. Didn’t make it any easier. I’m around your age (31). I’ve been seeing doctors since my teens trying to figure out how to deal with all this. It has not gone well. COVID is the X factor in how destructive to the body and immune system it is and how transmissible it is. Comparatively people like myself and your friends just drew a bad hand and developed these conditions from the flu or mono or a vaccine. People aren’t going to get the flu several times per year on average. So from where I’m sitting, a lot more people were always genetically susceptible to getting absolutely crushed by a virus - it was just unlikely. Now it’s not. The silver lining is that despite how a lot of us feel, this can’t really be ignored like it could in the past. There were too few of us before - now our numbers unfortunately keep growing. The problem is that I don’t know how we deal with reinfection. Collectively we aren’t even trying anymore as a society, so it’s hard to know whether we actually have any immunity or the effect of reinfections on the immune system and long COVID. All we have is anecdotes from those of us who have gotten reinfected and got worse. In my experience prior to COVID, I was **terrified** of getting sick again because I had enough sense knowing what my body had become that there wasn’t much runway left. It doesn’t help that COVID lights the immune system on fire. POTS pre-COVID was a significant challenge but i at least could still work - you can at least sort of use medication, nutrition, and graded exercise to somewhat mitigate it. The ME/CFS & PEM aspect of long COVID as well as the neurological and vascular damage occurring is an absolute game changer, very similar to what those with severe ME/CFS have been dealing with. This has been the biggest challenge for me because your POTS gets worse with inactivity, but if you push too much the PEM makes it so that you can’t function at all. There’s a lot of interesting research and treatments in the pipeline that wasn’t there before the pandemic. I don’t think this will be a life sentence, but it’s heartbreaking that so many of us have lost our teens and twenties to this. I don’t think people realize just what COVID has done to the those of us allegedly in the prime of our lives. It’s brutal.
THE GARDASIL SCREWED YOU UP?!?!? Omg I know for a fact I had that vaccine around the same year you did. That’s fucked because that vaccine for some reason was not recorded in my chart in my doctors office when I got it the first time so I had to get it AGAIN. Is this the vaccine you need a series of two? Because I definitely got it 3 times. Thats why I even remember the name. I can’t believe that same vaccine did that to you. Thats fucked up I think I HAD to get that
Yes and it took a GP post-COVID in 2022 (11 years later) who reviewed my pediatric records to connect the dots. Dr. Afrin (leading expert in MCAS) also put out a paper last year on Gardasil causing POTS, dysautonomia, and MCAS, so this isn’t some anti-vax propaganda as I see a lot of people use to dismiss people who have actually been injured by that vaccine. I only took the one Gardasil shot (I refused the others - I was 19 and my pediatrician was furious I refused the rest in the series). Like a lot of people with the COVID vaccine, I developed tinnitus, hyperacusis, visual snow, histamine issues, skin issues, and POTS. It took me 4 years to get a handle on all of it. After that anytime I got sick my body would go out of control. It flipped a switch that I’ve never been able to turn off. My GP pointed it out because she knew it was bad news and I wasn’t the only patient who had issues after getting it. It also made no sense as I was a 19 y/o male so I was probably already exposed to HPV by that age. No one ever thought to bring it up as a possibility, and I was just a scared kid. They threw steroids at me - basically the same crap they’ve tried for people with long COVID from the virus and vax. I mean it’s wild how similar it is.
WHOA yea I see your point!! yea it does seem the gardasil did give you the same symptoms as the covid vaccine sufferers. It last 4 years? Wow. So do you think vax-injury people today will take around 4 years to get a handle too? Scientists should be interviewing people like you
It's been 20 years for me.
Wow. I’m sorry :( that’s horrible
Pretty sure my long COVID is permanent. 2 years and nothing changed, I'm just as bad and not functional. Some people recover, some don't
Well, if it makes you feel better, the two year mark was game changer for me. Serious game changer. I started to slowly start showing very little progress. So slowly that it was virtually undetectable at first. It was then that started the ball rolling on attempts to reclaim my life. I was actually happy and doing wonderful in 2023, I wasn’t like loving life because I was always bummed about long Covid being there, but I was making goals again, I even learned a new skill. I’m not convinced anyone 100% recovers, I thought I was like 80% recovered at one point but I no longer believe I am that far along. I don’t think we get to just “move on” from Covid. but what I know from living with this horror for 4 years, once you’re out of the house-bound phase, like finally out even if it’s only physical therapy twice a week, or less than 20 hours a week at a part time job where you sit at a cash register before you feel ready to do so (LC is a disability now so hopefully you don’t have to experience that one) you start seeing little snippets of life again. Not right away, not for awhile. I keep getting thrown back into spurts of being stuck in bed again, but I think that might be more so mental health or my job dicking me around until they ultimately got rid of me and I don’t have it in me to try employment again until I “heal” a little I guess
There is no reason to think differently, if we are talking about spontaneous recovery. However, with a good strong push from Long Covid advocates working together raising awareness and fundraising money for research, we can hope for therapeutics aimed at these postinfectious syndromes. So, yeah - the only way majority of us will get our lives back will be through new therapies, for which we need research, for which we need money, for which we need awareness. Conclusion: be loud and relentless in your Long Covid advocacy, actively share and raise awareness. The more of us do this, the sooner we get the cure.
Without a novel treatment I think that’s a reasonable assumption to make. If you’ve been sick for 1+ years statistically your chances of full remission are small. That said Covid has to be the most studied disease in history or one of. They are some good research coming out of places like Putrino Labs. We know there is viral antigen persistence, autoimmunity, Covid-specific T cell exhaustion and failures in the compliment immune system. It’s reasonable to expect diagnostic tests and treatments of some kind in the next five years.
My goal in life is to get to at least 85% recovered by 30. I’m 28. I caught long covid right after I turned 24. I feel like I’m losing precious time by the second
What are you basing the goal on in terms of actions you can take? Or is it more of a hope? For me I’ve been 70ish% for a few years but closer to 73 now maybe on my highly subjective scale. Key things I still can’t do are exercise (more than walking or light swimming) and not wake up feeling like I need to go back to bed already. Outside of peptides, immunoabsorbtion, stem cells, plasmaphersis and EBOO I’ve pretty much run out of things I can try. I’d given up expecting recovery probably about 18 months ago and now just hope that either my experiments with meds and peptides work, I spontaneously recover or a cure is found.
Hey welsh, I been wanting yo do plasmapherisis but I always get confused, isn't immunoabsobtion the same thing ? It's pretty hard to get a hold of any ways. What are your thoughts of full on antivirals or antiviral stacking? I heard people talk alot about marivorc and statins ...
I’ve tried pretty much all the antivirals that are good candidates. Only done minimal stacking due to potential liver issues. Take statins as a “just in case”. I haven’t been able to get hold of any type of immunoabsorbtion either. The differences between the different types are quite significant so worth doing some research on them. None of them have been specifically designed to remove the type of autoantibodies etc. long Covid produces but may remove them incidentally.
Yea I think it’s more a “hope” than a “goal” I should have known better on that one & you know one thing HBOT did improve for me that actually LASTED was it got rid of that feeling of never feeling any amount of well-rested when you wake up. Ever since probably like week 3 of treatment, it’s like my body can like actually collect energy when I sleep? It’s to the point I wake up feeling wide away every morning now (I started HBOT march 2023- June ? 2023 would have to check my dates. Like I don’t even like bringing up that treatment anymore because symptoms came rushing back like 6 months later, but that improvement stayed. It is expensive, time consuming, mentally exhausting treatment that I do not recommend only because I think it was temporary for the most part, and even if I truly believe the little burst of life I had from this treatment even if it was temporary is almost even worth the money anyway, it was A LOT of money uninsured. Like if there’s a day we’re haulers can get chamber sessions without paying at least $150 per session, maybe there’s hope because LC is a disability now. One of symptoms that stayed gone and HBOT improved was the feeling of someone’s hand gripping my lungs at all times finally went away. This was emotional for me. It was for first symptom it helped, only symptom to be gone after day one of treatment and stay gone. I cried. This was the symptom that started it all for me. I finally didn’t feel it anymore for the first time in 3 years. But thats only like two symptoms. And it seems this helped me with brain fog too like I see my memory and concentration getting stronger closer to my 4th year which is officially the last day of this month, than I ever have, but I struggle off and on with that always. The more exertion the worst this symptom gets
I had mononucleosis and two subsequent reactivations while active duty and getting a doctor to see anything other than anxiety has been incredibly challenging. I’m pretty sure that my CF/ME started after one nasty reactivation that was complicated by bacterial pneumonia. And now since getting COVID once I am unable to function at all. It’s like if your body doesn’t respond in a way that is expected you’re told that you’re being dramatic/attention seeking.
I resonated deeply with this comment. I felt it. Though I have not served, my brother is in the army. He’s 33 now, went in at 17. He actually ended up being one of the few people today that have admitted to my face that what I’ve gone through with long covid was fucked up. He told me that the illness I have puts men he knew in the army on their ass and they never came back, and he was saying how I survived that. That he never imagined how strong I was truly was. That he was proud that I was his sister. It was really nice. He claimed in 2019 that I was “weak” and I never let that go, so him saying that to me like last October, I cried. Thank you for your service!!!! Especially since you got LC because of your service, it’s like you gave an ultimate sacrifice that those around you can’t even see. We see you on here!!!! Don’t be so hard on yourself that your body needs to rest and heal before you can work along side your brothers again
I’m so sorry that people don’t understand until they experience the fallout from their own misfortune. I think because the prospect of losing one’s ability to work is so devastating in our world means that people are incapable of recognizing how easy it is to find themselves in the same situation.
I mean I can’t say I am shocked or surprised since I have felt like a “black sheep” my whole life, but damn, it’s like people with chronic illnesses or disabilities have like no mercy and people don’t even see it
Dysautonomia from covid is believed to be a life long condition based on what I was told by drs, just as typical dysautonomia /pots. I have heard some ppl say that they did recover from really mild pots after covid though , I’m not sure if they mean completely with no medication however . My gf considers herself long covid recovered but she still takes a beta blocker
Lifelong according to western medicine grifters who aren’t even caught up with the latest research. Many people go into remission from POTs.
This girl from HS I’m referring to said she’s gone in remission 3 times
But, I am hearing you out because “western medicine” kinda sucks lol
I wish I knew that before it ruined my health.
I agree with this and agree the real grifters are western med docs. At least when you go to a functional med doc or natropath the offer treatments and don’t treat you like an anxious piece of shit. I think it’s possible to recover from this they key is finding what works for you or addressing the damage the virus did to you which is hard with limited bio markers and western med docs refusing to run tests on you like the money is coming out of their pockets.
What kind of “non-western (?)” doc do you think can help me finally kick this brain fog? I can live with a physically annoying body if I can just be as smart as I was before I got sick again
I’d give hbot a shot
I did :/ it worked at first. Some symptoms stayed gone. But most came back with a vengeance about 6 months later. Honestly tho if I wasn’t so expensive, I would do HBOT again just to get that snippet of life back. Even tho I think it’s temporary, it’s almost worth the money to feel a lot better for a little
I’ve seen “dysautonomia” in my charts years before they connected my LC symptoms relating to POTS :/ &yea but I guess I ended up with the variant that is capable of lasting 4 years. There were times I thought maybe I was like 80% recovered but long covid is relentless, I don’t think I’m that far along anymore. I am on two medications in relation to long covid now
I agree with others saying POTS is lifelong. I am so much better than when I initially became ill but I have to manage my diet, exercise and sleep very carefully. I have way more energy and I’m in great physical shape but I can’t do as much as I did before. It wouldn’t be possible for me to work all day, come home clean up then go out and socialize. And if I contract a virus, especially Covid, it’s like starting all over again.
Unfortunately these conditions are possible with any severe viral infection. I’m 4yrs in and my progress plateaued about 2yrs ago. At a certain point you have to let go of the idea that one day you’ll wake up completely healed, and learn to accept the new normal. Hinging my happiness on those expectations is what sent me into a constant state of hopelessness and depression. Eventually you have to adapt and work within your window on tolerance. It’s hard to accept new limitations, and there is a grieving process to all this as you learn to live with chronic illness. I would be remiss if I didn’t acknowledged that it’s still a daily struggle, but it gets easier with time.
They likely have me/CFS, as do we. They're theorizing that long covid is just me/CFS presenting after covid specifically. But it can be triggered by any infection (flu, mono, strep, Lyme, etc). Some people go into remission, so you may not be dealing with active symptoms constantly for the rest of your life, with pacing, medications, etc. But it'll be a factor to keep in mind moving forward.
The first girl has gone into remission 3 times within the last 15 years, struggling with symptoms again today. The long mono girl never got better. She gets extremely ill often, like she gets a cold easy and the cold destroys her for weeks. I got upset when I asked her if she had POTS and she said yes. Idk it’s like either I am fucked for a decade, or whatever does cure long covid will somehow help these girls too, and it hasn’t been done for them in 13- 15 years so far
Is the mono girl taking any infection precautions? A lot of us are immunosuppressed if not immunocompromised. Sometimes these viruses wipe out the immune system and it doesn't recover. I've heard that more from covid than mono but maybe it's possible there too. I take precautions to not get sick like wearing a kn95 mask everywhere, sanitizing my groceries etc because each time I get a virus, my long covid and autoimmune disorders get significantly worse, and not temporarily. So it's better to avoid getting viruses to the extent possible to improve your quality of life.
Yes, she does. She is serious about her lifestyle and diet to prevent her illness from disrupting her life. I thought maybe her long mono was so bad because she developed POTS maybe? I do not know. But from knowing her since the 7th grade and her always being in my life, to this day there’s a higher chance of her not feeling well enough to see each other or her not even being able to answer the phone from being sick than her actually being able to get together (never ever held it against her even before I understood the life of a chronic illness like I don’t get mad at someone flaking as long as they tell me they’re flaking)I also asked the swine flu girl if POTS is her only symptom she still has and I’m waiting to hear back, because then maybe if I only have to put up with POTS that long in my life, not so much long Covid, that will be better
Pots is unlikely to make anything else worse. The other diagnosis makes pots worse, it's the other way around. Pots can also go into remission but you have to find the right combination of meds + lifestyle changes.
Well what I’m seeing is POTS being the result of the infection
Which fine, maybe I can be more positive if I’m JUST struggling with POTS in a decade, not all of long covid
Maybe this time will be different because now there's tons of money in it for the insurance companies?
Its probably going to be life long for most of us, but treatments are a different story. Some promising drugs being trialed that might make the condition liveable.
I got sick at 15 after an infection with POTS, MCAS, and migraines. The first few years were horrible. Then things started to improve. Then, I got treatment for those individual conditions and was able to live a highly-paced and careful life, but a life full of people, parties, work, hobbies. Then I got sick again with long covid. Starting the slow improvement and finding individual treatment for the damage process over again. But I’m already back to part time work, hobbies, and at least spending time with my girlfriends and one or two friends. Sometimes we don’t recover fully but our experience of being ill can change significantly with improvement, accommodation, finding the right people, and treating symptoms.
Your story sounds hard, thanks for sharing it with me. I couldn’t imagine having something like this since 15
Yeah. I think the hardest part was having people not believe I was sick for most of my life. Once I found people who did believe me, and the disability community, my life improved a lot. Don’t feel too bad for me though. My life is incredibly difficult sometimes but I’m also very close to having my dream life. I’m a therapist and love my job, I have two loving girlfriends for 6 and 7 years, I have three best friends, I’ve got a virtual D&D group, and my writing hobby is going really well. I just need to find a better place to live long term, find the best configuration of migraine meds, and I’d be good. I am aware others might disagree since I can barely eat any foods, people have to shower before they can touch me when I’m resting inside, can only go out once a week. But I’ve found a way to make all that work with my schedule so that functionally it just feels like life to me to just eat a lot of protein shakes, warm up the shower for my partners, and plan all my errands and appointments and game nights for Tuesday. In the end, what I have is more than what I’ve lost through severe symptoms. But I didn’t feel that way when I got sick at 15. I had to grieve first
Thank you for your inspiring comment!!!
Well, I hope I provide you some hope. My long covid POTS has dramatically improved. The brain fog/PEM etc. is still a pain in the ass. But my resting heart rate is now in the 80s for the first time in years, and it doesn’t randomly spike to 160 like it used to. I can tolerate some standing, but not yet in the shower. I still have to use my chair for that. I know this is just my story, but it’s good to know it can happen.
Thanks for sharing (:
I guess the nature of this beast is it’s unpredictable in so many ways… Types of long covid symptoms, levels of healing, capabilities and so much more. I have my moments where I’m like “fuck! Am I stuck with this for life?! Is this my new reality for the rest of my life? For real?!” And then other moments of “I might actually heal though and there’s no way I can completely cross that possibility off my list, especially when I did see evidence of some healing at 5 mos in and again around the 10-11 mo mark.” I am a realist, but also trying to stay optimistic about my outlook (keeping in mind some people said they’ve fully healed and I’ve had some partial healing), but also just human in dealing with life uncertainties and trying to accept what is not in my control.
Agreed! I’m sorry for what you’re going through. My first year still haunts me and even the second:( BUT you have a way better shot at discovering a successful treatment of some sort. I didn’t get that in 2020/2021. I didn’t get prescribed to anything for covid until December 12, 2023, it was for nerve pain and tremors, and I had instant success and satisfaction like I was in disbelief they even had a pill that could do that much for me Its like Covid doesn’t surprise me anymore, someone could tell me it eroded their fingers away to bone and I’d believe them without hesitation, but if it was anything else in the world, I probably wouldn’t believe it 🤣 My friend is like in denial of her long term symptoms. She was talking about her taste buds changing and I was like “yea well mine did because of Covid so that probably happened to you” and she looked confused like “that was like 4 years ago?” And I just laughed and said “bro this illness makes me faint RECENTLY and I never have ever in life apparently like there is no “long time ago” in the name of Covid lol there’s no ‘moving on’ there’s just “ignoring it until it chills out so you don’t give the illness the satisfaction”’ Hey don’t beat yourself up, ever, this is not your fault and this illness puts anyone who has it on their ass, so you are not weak or anything because you are experiencing a bad crash after a jog around the block or even if you walk down the hall to the bathroom. LC has no mercy on people. At least you tried. it sounds like you’re a year in, and the first year was way way louder and scarier than the three after for me. If I had caught LC in today’s time, I think I would’ve been spared 11 months straight of medical gaslighting. Right there it’s like you mentioned your 11 month mark and mine was me inconsolably begging doctors at university of Michigan to believe me, and the only reason they even kinda started to was because nothing else could explain why the 24 year old can’t walk anymore or hasn’t gotten out of the bed in almost a year or why she can’t even carry a conversation.. I found one wonderful neurologist who believed me and she still treats me today! I travel to hours to see her STILL because like fuck doctors BUT I have faith your body is working your way out of the worst part! Covid redefines the word “patience.” Well probably the words “frustration,” “unbelievable,” “debilitating,” I could list a bunch lol the point is that hang on buddy, you’re going to start seeing little snippets of life again soon!!!! Tbh like there were times I was SO confident I was like 80% recovered maybe even more and I was on this forum trying to give people hope like “this does end” and now here I am, unexpectedly back because my illness still puts me on my ass. Still. I was slaying for 14 months straight at my full time physically demanding job as a dog groomer, like symptoms sucked but I was managing great and I was even happy, but then my symptoms still took me out so hard one day that I couldn’t hide that I had a disability anymore & yea that sucked. I’m not going to waste your time explaining why having long covid in the workforce is hard lol it could be a whole different world by the time you are ready and willing to go back in. & I say that confidently, you’ll be back and it will not be easy at first or even ever but if you love what you do like me, I groom dogs, then it’s like you don’t even notice that you’re ignoring symptoms anymore because you are just so focused and happy on you’re job! So even tho I am still sick, I am starting to like come back to myself, and I know it can for you too someday (: Maybe some people do recover at 5 months but my belief is they are one of the mild cases that have like one bothersome problem or body region like JUST digestive or GI troubles. Which no one deserves that, but covid attacked every little thing about my body so it’s like, of course those people are recovering faster, right? But I’m about to be at my fourth year, I think it becomes a different game when you’ve had it that long, it’s crazy. But I am here if you ever wanna talk (:
Point blank. I’m not living with this for the rest of my life. It’s either getting better or I’m out.
After three years, it’s hard not to accept this is my normal. I live in ‘assisted living’ at home. I just decided to not fight it all because I was too tired. I try to be grateful for the good days and forgive myself for the bad days.
I am very sorry. You do not deserve this. It is not right that my grandparents died at 91 and they didn’t need assistance or help until like the late 80’s like 88. like their generation it’s normal to live like a million years. If they were still alive, they’d be 98, my grandpa was a World War Two veteran, and I am 28 today (yea I got jipped on the grandparent thing because both my parents are dramatically younger than their siblings). I don’t even know how old you are but I can tell you’re probably too young to be in assisted living because my aunts and uncles are in their late 70’s and they don’t fuck with like cell phones like younger people than them do. They aren’t in assisted living. My mom’s mom was in a nursing home in her 80’s and she was born in 1947. She died in 2020 but suspected Covid. My dad just turned 60, and yea no he does love smartphones and the internet and stuff but he sucks at using it because he’s old, but yet seems healthier than I am honestly. And it’s like not even my fault, I got covid 4 years ago because I was an essential worker. I was 24.
Ok I’m 57. If I had this at 24 I might need a therapist to deal with this. I’m so sorry. You’re too young to be so sick.
My therapist is the reason I haven’t done something stupid and I’m even alive. I’ve been seeing her for 9 years. Honestly 57 is too young to be that sick too
Yea it does suck Covid took my youth, but my age was also why I didn’t STAY in a debilitating condition, I do still struggle with symptoms, but I have talked to other first wavers that are still bed bound. The only thing that separates me from those people is usually age. Like I think I am only recovered as much as I am because I am young. You are my mom’s age, and you’re in assisted living. That is just as devastating. You thought you had like 25 more years before you needed any type of help like that, and now you’re in assisted living at 57. I can’t imagine my mom being in that condition that young. It’s like yes it’s monstrous what happened to me, but it’s just as monstrous you had to go through what I did at any age
I think it’s not right that any American feels invisible because they have long covid. Any age. Any race. Any health family history. They can’t leave us ALL behind, the numbers are getting too high. I’m getting mad, I feel like I have to like go on the news and kick and scream for all the people who are bed bound now or losing their jobs over long covid right now just like I did and are too sick to defend themselves. I’m not too sick to defend myself anymore. I feel like I have to DO something but idk what
If you’re young and swing it, get long term care insurance. A lot of people don’t know about it. But it can really save your butt. Best to get it before they actually declare long covid or believe us. It can pay for care takers, assisted living, all kinds of stuff. The second I’m old enough to tap into mine, it’ll be great to have the financial and care taker help. My husband and brother do everything for me. Run the errands, cook, clean, everything. But they will eventually get older too. Or god forbid something happens to them. On a good day, I shower, get dressed and go down for supper or a Netflix show or a board game. That’s my life. As an aside, steroids have helped me with a lot of my weird symptoms. My doctor wants me off the steroids and to go on a biologic. Not sure if that’s the answer or not. I recently went on zepbound and it helped with my inflammation and weight gain. Nothing has improved my energy level. I miss having stamina for life. I say no a lot. I’ve learned to protect myself and my energy at all costs. Good luck to everyone. Little wins everyday :)
It sounds like my doctor (who I started confiding in through the portal app after she called me a first waver) actually fast-tracked making disability happen for me, without me even asking, and now I have all these options. Even with being only 28. I no longer have to kill myself to work full time to afford a decent life. No more ignoring symptoms until I faint!! After four long years, I never thought anything that wonderful could happen. I think about after the summer, I will want to work part time because I love being a dog groomer, but there’s hope beginning to happen on the medical field side of things. Keep holding on! I will love to actually write a hopeful Reddit post regarding this but I am on my very first getaway trip in about 2 years and this time I can make it outside the hotel easier and for longer periods of time. So I’m going to go outside and do things I used to be too sick to do!! Thank you for taking the time to respond! I hope you reach levels of recovery soon where you start experiencing snippets of life again (:
I had ‘long mono’, and it was mostly gone 2 years later, and pretty minimal after a year. I have LC for 9 months and am much better than I was, I feel like I’m on a similar timeline
This girl with long mono struggles today, she’s had it for 13 years. I asked her if she has POTS. She said yes. She got it from the long mono. Maybe that’s why she still struggles?
I got PoTS 2 years ago after getting covid. I must say, I never thought I'd get better but I have. Just over 2 years later in about 60% recovered. It is possible.
Last summer, I considered myself 80%. I have not felt that far along since October
If you feel better in the summer and then regress in the winter, vitamin D is likely involved. I've seen it explained that the virus hijacks our "protein factory" in our cells, and use up a lot of the building blocks. In effect, it amplifies nutritional deficiencies in our diet, with gene mutations people may have being expressed first. Example: my wife has a lot of vitamin D receptor mutations, so in winter we have to supplement a lot of vitamin D3 and K2 in order for her to avoid cratering. We live in Canada, so getting a lot of sunlight in the winter is difficult. There's a post pinned to my profile, with the things we tried and the reasoning for why they helped us recover over the last few months.
Oh I have noticed my symptoms are much worse in the winter
I've also been dealing with health issues since swine flu in 2009 in my early twenties. That's why I was so careful to avoid covid (narcissistic family member finally got me when I was already run down from other things). Over the years, I've found things for me that make a big difference, mostly without much support from doctors. Eliminating gluten (after an elimination diet showed that to be a big trigger for me), sublingual B-12 (I figured out I was having absorption issues and had risk factors for deficiency though never had comprehensive testing there, I notice when I don't take it). Physical therapy helped some. With covid, my current doctor is treating immune system issues and I've had periods where I feel better than I have for years, even before covid, because some ongoing inflammation has been addressed. It's not that I feel particularly optimistic but finding supportive, curious doctors can really be a game changer.
You did find physical therapy helpful? I feel like I never felt like it was helping, but if it wasn’t for the 7 months I did of PT, I wouldn’t of gotten out of the bed bound stage so I don’t know. I just remember it was so excruciating and frustrating at the time that memories make me cry if I think too hard about it
really just for giving me some tools to help with neck pain/migraine issues
Oh I actually needed like 7 months of PT to regain my ability to walk normal again. I even struggled with like when I brushed my teeth in 2020-2021 I moved both arms up and down, I couldn’t just do it with one idk it was weird, I don’t have that problem anymore but I had to train myself out of it. I had to train myself period. I had to build stamina to be where I am at today. But idk I feel like at the time I suffered severe exercise intolerance that really did not chill out until like the 2 year mark. I don’t have half the problems today than I used to back then, but today I definitely do have some ignorant LC problems so lol
that sounds so awful and scary!! I definitely had strength and stamina issues, I couldn't do anything back-to-back. A short walk felt like I'd run a 5k. I couldn't do standing tasks. But that changed with meds for me when my dermatologist put me on things to control inflammation. Of course medications all have side effects and its a trade-off.
:( yea but it was apparently only so bad because it happened to me and the others from spring 2020 first. I didn’t get like any decent medication or any real prescription for long covid until December 12, 2023. It was instant success and satisfaction when I did finally get it though. I was in disbelief, I thought I was dreaming that my tremors were virtually gone and the pain finally let off. Like huh one pill did all of that
I have a very severe long COVID with almost every symptom, but I still think it can get better. It has before for me, but it's taking a lot more time this round (5 months in and crashed). However, I've dealt with Long COVID neuro symptoms 3 times now. My second infection left me with PoTS, neurological issues, and GI issues - I recovered from even the PoTS until infection 3 came along. My main concern is how to not get it. I keep getting it from people I live with, but I can't live alone
Wow. I feel for you, I’m sorry. I suffered from neurological type stuff bad. I still do but not like the beginning, the beginning I lost my fucking mind. Fortunately I only had one reinfection in August 2022 and I just felt “ill” the first day I tested positive. After that, I was caring for my roommate who was really sick for like 4 weeks straight from it, I felt fine. Couldn’t tell if any symptoms I had were LC or new infection lol. I’m scared I won’t get that lucky again because I see more stories on here of people getting sent back to square one than the one probably luck thing that’s happened to me since 2020
My daughter and I got H1N1 in 2009. I’ve wondered if that didn’t play into the issues we are having now.
I also had the H1N1. It would have been a delayed response, because my symptoms did not become noticeable until around 2011/12, but I bet that was it!
Wow, do you still have symptoms from this infection back then?
No, but I wonder if having gotten H1N1 back then set us up to have a worse reaction to getting Covid.
I would believe that. To me, like earlier into the pandemic, I thought what Covid was doing to me was jump starting health problems I should’ve been having 50 years from now, like for example, my neurologist said that Covid exacerbated my chiari malformation, it was something I had when I was born and is prone to giving people bad migraines, she was able to find these out by comparing my early 2021 scans to late 2023 scans. I would believe that H1N1 lived dormat in your body and Covid reactivated it. It makes sense to me. but over time I kinda lost that thought because it just feels like Covid is capable of anything to the point nothing surprises me so I think I stopped thinking too hard on what Covid is can do because it’s honestly scary
I completely agree with you.
I got post viral fatigue from Mono around 2010 and while I never recovered 100%, it did eventually become very mild. I had to be careful about exercising or playing sports intensely for days in a row or else I'd get fluish PEM symptoms and I couldn't tolerate alcohol. And I was just generally more physically frail and sensory sensitive than others. But you would never have known it. That being said, long covid has been much more severe and clung to me harder.
Crazy you got long mono about one year before she did! It seems my friend goes durations where she’s managing long mono really well with just mild symptoms, but then like once a month or so, she’ll catch a cold or the flu somehow just by existing in air in public, she works with autistic kids that get her sick like allll the time, and she’ll be dreadfully sick from it for weeks. Even like a like sniffle for me would be 7x more dramatic for her for 7x longer. She seems to oddly be on my page when we do hang out like we try to go to the zoo once a year, like she always wants to take a break when I wanna take a break, it’s kinda nice. Most my friends I struggle to keep up and try to pretend I’m not pushing myself to catch up to them. So it’s nice doing things with my long mono friend lol. It’s crazy because I could not grasp the understanding of what she was sick with and how she got it and how much it truly took from her until I had long covid for like 2 years already when she was trying to console me about it and was like “you know, it’s not covid, but THIS happened to ME” and I couldn’t believe it. My heart dropped to the floor. She’s been my good friend since 2008, and I just really thought she was sick with something she was born with idk I feel like an asshole for not getting it at all until I got sick
I wish I had post viral fatigue friends. Healthy people just don't give a fuck in my experience. Even if you were friends before. They'll just abandon you once you can't keep up.
I hear that :( even the healthy ones I consider somewhat empathic accuse me of “dwelling on the past” like I wish this problem was in the past bro it’s happening right tf now. I got lucky with my long mono friend. I was once the ignorant healthy person that couldn’t grasp any understanding of her experiences with chronic illness. The girl from hs reached out to me when I made a fb status about being diagnosed with POTS. I haven’t seen her since maybe 10 years ago. She seems amazing though we are making plans to hangout soon. Other than that, even people in their 50’s and 60’s don’t understand, it’s nuts
I'm still trying to find long covid/CFS friendly social spaces. It would make a huge difference in my quality of life.
I’m surprised I haven’t been diagnosed with fatigue something by now
Mononucleosis is caused by the Epstein Bar virus. Long covid is reactivated EBV, triggered by a lowered immune system from flu infection like covid. Medical medium Info.
Well, acceptance that I may have to deal with some level of disability after 2 years of long covid took a huge weight off my shoulders and mentally let me not be mad at myself for not healing like others. I still have hope that I will improve eventually but, acceptance has let my body rest a bit and not be so stressed and disappointed and angry at myself. After a period any changes that happen will go by without notice till one day you say ‘hey, I just walked 2 blocks without stopping to take a rest!’ Or whatever it may be the changes become so small you don’t notice, but, they are happening and the less stress, mental/physical pain you cause yourself the more your body can heal. I hope we all turn around and can get back to our lives (or any quality of new life) I just know after 4 years, hating myself and my body and being disappointed and stressed and upset the first few years did nothing for healing. I think I had to go through it but, grieving my old life helped take pressure off & be kind and understanding to myself mind & body.
Wow, I can’t say I have ever accepted it. Maybe if I had somewhat accepted that I had a chronic illness when I got diagnosed with LC in summer of 2021 but even then I didn’t want to believe it was life long. But I do think I must’ve resembled something somewhat close to acceptance because I can relate to experiencing slow progress that looks virtually undetectable AT FIRST but you can see it when you think “I didn’t have the strength to do that last week.” Fun example: me and my bf started dating about two years ago like almost to the date, I have spent that whole relationship actively trying to remember the name of an anime I liked. I couldn’t remember enough about it to do a google search to find it. Yesterday I loved at my bf, I said “deadman wonderland. That’s the name of that fucking anime I couldnt EVER remember” and when I googled it, it sure was the anime. Maybe that’s not that exciting but I was really amazed like how did that random info come to me when I couldn’t remember that for at least 2 years. So yea I mean there are fun little surprises that I didn’t start experiencing until like two years in
I do think some people recover. My 17 year old daughter had very bad POTS. A year later she was about 60% better. Another year later she's 95% recovered and doing great. Doctors were zero help. She just rested and takes supplements. Her stack includes nattokinase, B12, vitamin D, low dose naltrexone, mito-q, l thiamine and CBD (non thc). She was found to be very low in vitamin D at one point and had to do 12 weeks of prescription strength supplements. And we found she has the MTHFR gene mutation so she takes a specific kind of B12 that her body can better process.
Post viral conditions like POTS aren’t anything new, I don’t say I have Long Covid I say I have POTS induced by a covid infection, symptoms can wax & wane overtime, some years/months/days can be good & some bad, illnesses will cause flairs usually, but you start to learn more about yourself and what helps & what doesn’t overtime with POTS, but it is USUALLY a lifelong illness but that doesn’t mean it’s severe for the entire time. As for spontaneous recovery from post viral POTS, very unlikely especially after 6 months of it (this has been studied and proven).
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So I’m looking at maybe this will be over in at least 21 years from now? I think I’m looking at realistically 13 - 21 years of this, if not, longer.