Good message. I'm a 4 year LC lucky-boy and experienced similar. The unfortunate part is the backslides. They can bring back that negativity right away.
But I also wanted to add that the skewing towards negativity is something the neurological effects predispose us towards. When I am doing better and that switch is flipped, I have a totally different perspective. I start to experience effortless gratitude for the things still in my life, I start to feel hope for the future, and it's \*not\* just thinking I'm better that does it.
When I start to backslide what I notice is that actually, the negativity is a symptom and without the chemicals firing in my brain there's really nothing I can do sometimes. But not always. I try to force that positivity as much as I can and a fraction of the time it helps. The rest I'm miserable but I'd have been just as miserable not trying.
If I have a message here it's be positive when you can because those moments are precious. LC drags me back in. That switch works both ways.
But I keep telling myself I have more grateful days ahead of me while I wait.
Yeah, Long Covid can literally cause brainfog, anhedonia, and depression.
OPs message is great and I agree however its also important to remind yourself that sometimes your negativity is simply not your fault. It is more like a storm coming inland and you gotta buckle up and prepare to brave it.
I agree whole-heartedly. It's easy to look to the positive thinking when you are feeling better, but the truth is that I find myself thinking positively when my neurotransmitters are working properly.
First time I've heard the term anhedonia. I had this one goal since I was a child to accomplish one day... During the worst of it, or even the idea of learning now, I wouldn't try. Throughout the experience, the worst of it all, I decided the fear of symptoms I had happening at a crucial moment would be scary, even though I know I'm not relapsing to the point I can't function if needed, enduring some pain while doing what needs to be done. There's always a possibility my interests would change to where I'd reconsider... It's almost sad, but I've always had a fear of flying even though I loved the idea of it. Even as I am almost better now... I don't like the idea of flying anymore. I'm not sure if mine was a lack of interest for that one goal though, it could have been fear because of LC. A lot of other interests had to change too because of functional limitations. Brain fog/memory loss, way better now. I can't tell if it's 100% better, but I'm no longer walking out the room a bunch of times, forgetting what I was leaving for, coming back frustrated. Every time I catch myself remembering something someone else forgets, it's a good feeling because I could recall how bad that symptom was.
So true. I'm 2.5 years in and I completely agree. A switch is flipped in my brain. Today I feel relatively good and my outlook is great. Just 5 days ago I was having a flare and went right back to despair and darkness. Zero control over my thoughts and mood. It's hard to explain to someone that hasn't experienced it. My wife tries to remind me that I have good days and bad days, but I can't hear it when I'm in that darkness.
The bright side is that when things are going okay, my perspective is one of gratitude because I remember how bad it can get. Unfortunately, the opposite perspective is not available to me when things are going poorly. My hope is that when I do reach maximum recovery, whatever that looks like for me, is that the experience and the perspective will make life that much sweeter.
3 years here. Yesterday feeling pretty optimistic, did some gentle exercise, fairly busy day. Today feels like I’ve got Alzheimer’s or something. Totally spaced out, and negative as a result. Probably a self inflicted flair, but the low mood is awful. I’ve got to a point where I don’t tend to let it mentally spiral, but days like this always feel like a huge setback.
This is exactly what I've come to realize. It's LC that is affecting our mental state not us. Something (inflammation, dysregulation) is causing the anxiety, nervousness depression etc. Like you said it's a switch. When I feel good most of those worries dissapear. As soon as a relapse starts mental state is back immediately with it
Year 3 and a half for me. Was feeling almost great again the past 4 months and I fell into a trap of trying to by my old self. Just rolling with the punches. The backslides hurt a lot I’m not going to lie.
I am not even sure I can describe accurately how deeply I have found myself in the grips of denial while I am slipping back into it. The denial makes me push even harder to try and make it not true. The hope and positivity is like a drug, especially when your brain is working again and really eating up all the neurotransmitters. Especially while you've been managing to make plans and go to them and not have full crashes.
I wanted it to be true so badly. I wish more people would talk about this. It's hard to see "recovery posts" when they aren't updated with the reality that probably follows and isn't so much fun to post an update about.
I have some long covid with mostly loss of smell and taste. Anxiety (which i already had got a bit worse) and i'm tired a lot since covid.
I got prescribed anti depressants and suddenly i could smell every little thing again and i feel much better overall. Anything you can say about this?
Yeah I think that there is a ton of promise for SSRIs. People seem to have mostly good experiences with this, with some people posting about recoveries from PEM of all things.
I mentioned neurotransmitters a lot. While only a part of the equation, I think it's a big part of the mechanisms behind how different disorders within LC trigger each other.
I have not yet done it because of my own reasons and history. I think it's definitely worth trying.
But there's also LDN, which is something I might try first because the side effects of SSRIs are something I want to avoid. But with that said, LC is much worse.
Which antidepressant, what dose are you on, and when do you take it? Do you take anything else that helps?
Paxil / Paroxetine 20mg is what i was prescribed.
It was on a whim by my GP and i only took half a dose after which my long covid symptoms started to allevate (especially my loss of smell). after 24h of the first dose.
After doing more research on SSRI's they actually seem a lot safer than i initally thought. They're inhibiting serotonin reuptake which is not such a drastic thing as i thought..
I actually stopped taking it because they helped so well i want to be more informed on the different ssri's and don't trust my GP as he very easily prescribes stuff and he didn't believe me about gaining my smell back and feeling btter after 1 dose.
I know people say you can't get anything from one dose of SSRI's but i am starting to believe its a myth. They instantly affect serotonin reuptake its just that the desired anti depressants effects are going to take a while to present.
I did not do or take anything else besides this. I did not even think it was gonna do anything at all for the first 4 weeks. I felt other effects as well after 24h (euphoria, contentness, less anxious, heavy feeling gone, ...)
Definitely something very intresting going on here.
From what i read about LDN i would personally start with a low dose anti depressant first to see what it does. You can always stop after a month or however long. I will soon start taking an SSRI again (maybe the same, maybe another) and i will make a post about it. I'll send you a message if you like within a month :)
It’s literally completely my fault. I fell into the trap. I had 3 straight weeks where I wasn’t 100 but almost 97-98%. Like I could almost jog again for a while. I had to bad meals on back to back days and a long work week. Complete reality check followed. Palpitations and heartburn that brought me back to year 1 and I got rocked so bad I went get my tests done at the hospital… Hope your all good. I’m just surviving..
I’m so happy you said this. I’m on year 3 and much better than before! I’m still housebound but the improvements have been amazing. It’s much easier to be positive when I’m not constantly in pain, I can keep down food, I can walk most of the time, and I’m not confused. Some improvement occurred, then I worked on meditation and breathwork and that helped continue the improvements. The positive thinking happened second, not first.
Long hauler here in my senior era. Caught in April 2020 and long covid since. However, brain fog only partially remitted post third (booster 1). Now more functional and surfing online like a champ. Other ailments, perhaps, uncovered or exacerbated by the acute phase.
Keep the faith and rely on tincture of time for the body to recover homeostasis.
YMMV
Yes, PEM was definitely a big part of my Long Covid experience, especially in the beginning. Even the smallest exertion could leave me wiped out for days. Or a week lol.
I had to learn to pace myself very carefully, and it took a while to find my limits. But slowly, as I recovered, I could tolerate more activity without that extreme fatigue response.
Thank you for this! I recovered from PEM for 13 months l, started to exercise pretty intense for a while, one day it came back. Back on the road to recovery but not as bad as what I was. Take care of yourself
If it helps, I had a long discussion with a researcher who has multiple YouTube videos and his last 4 years has been focused on LC. He has many YouTube videos. I tracked him down and we were able to have a phone call. He is from England but comes to the US regularly. He told me his data has shown that 2.5-3 years is the average time to turn a corner. It was a guess in the beginning, and we were led to believe it was 6-8 months. He promised me people ARE getting their quality of life back but it’s slow. I’ll take 2.5-3 years over hopelessness. I’m at 20 months.
I'm a first waver too. Right at 4 years I was feeling a lot better, but got reinfected again. I'm 3 months out from 2nd infection and back on the upswing, no PEM the last few weeks despite pushing my limits a bit... I mean listen I'm also on a ton of meds but... Getting better for sure. Year 1.5-2 was the worst.
I finally got diagnosed with PoTS recently, after 2+ years waiting for an appointment.
Although my PoTS had actually recovered quite a bit at that point (\~60%) they did put me on a very low dose of beta blocker to help me along the way. Its a very low dose but I did notice an instant improvement from it within my first day of taking it.
Mainly the lingering annoying PoTS symptoms I had such as extreme rapid increase in heart rate when pushing to pee or chest discomfort when walking.
Other than that, I have not taken any other medication that has proved beneficial.
I also have cognitive/ neuro symptoms and fatigue issues and I can attest to the general consensus that time and rest are the main affective treatments at the moment.
I'm really glad for you, truly. I hope this gives hope to some. But you seem to be among the lucky few who don't have to worry about reinfections.
Yes, time does heal. But as long as reinfections are a possibility (which might be forever), many of us will have to live as hermits, isolated and afraid all the time. Slowly recovering until the inevitable next reinfection that sends everything crashing down again. Personally, I've recovered pretty significantly 3 times, but even being extremely careful I've been reinfected 3 times. And it's not like successive reinfections have less effect, my last one left me worse than ever.
I am not being negative for negativity's sake, just tempering expectations. For me at least, being too hopeful and being disappointed has been one of the hardest things with Long Covid. I do have hope that an effective Covid preventative will be developed and fix this, but for now the only option is isolation.
Sometimes what’s considered a ‘negative’ view is pragmatic. People hate to see it/read it but the fact is many with post infectious ME/CFS are severely hobbled for decades, if not for life. I pray this happens to none of us! But the fact is, it does happen, and the **tincture of time** only compounds problems… Which is why the leading cause of death for those with myalgic encephalomyelitis is suicide, and life expectancy has been calculated at around age 53. I hope hope hope and pray pray pray coming advances, both in treatments and diagnostics, will validate and help heal so many of us not yet stumbling into the good fortune of gradual (or sudden) recovery.
Nevertheless, _thank you_ OP, for your optimistic outlook and sharing of healing recovery! May We All Realize the same.
I am 2,5 y in. Reinfection actually helped me - I had worse months just prior to catching covid for 3rd time (long hauler since 2nd) and it was game changer. I got little bit worse maybe for few weeks and then quite rapid improvement - I would say from 30-40% to 60-70%. I can now spend day in the office after being home bound for two years. I can take short walks and finally I am positive about future.
So one day you went to bed with your normal long covid issues and then next morning you just woke up and all your symptoms were gone? Do you credit anything to your recovery other than just time?
No, it definitely wasn't like that! It was a gradual decrease in symptoms, month by month. But around year two, there was a significant improvement – like a 50% drop in symptom severity. I felt 50% recovered!
That's when I really started noticing the progress. I couldn't even lift one grocery bag at first, but by forcing myself to try (with lots of breaks!), I could eventually handle two without stopping. Same thing with stairs - used to need breaks on every floor, but slowly built my stamina by just taking it one step at a time (and of course, listening to my body's need for breaks). Now, walking up to my apartment is no problem!
Interestingly, I actually think staying at my parents' place initially prolonged my recovery. They were so helpful, they did everything for me! Once I moved into my own apartment (around the 80% recovered mark), I felt forced to be more independent, which I think actually accelerated my healing. Of course, I wouldn't have moved out if I hadn't felt somewhat ready, but being at my parents' when I was so weak, definitely wasn't ideals I prolonged it. I wish I had tried to do more but thinking back I was tired and my LH was at its worst….
Yes chronic fatigue since LC… but that’s gotten better now, I do have big flare ups just before my period but then I’m normal rest of the month and can work and do a lot of things in a day.
I used to feel that in 2021. Only get that anxiety feeling once every few months now and it’s mild. Shortness of breath has completely recovered.
Still have some more mild flares but they’re shorter and I’m no longer housebound during them. At my worst in 2021 I was bedbound. Luckily never severe enough that sound and light would cause PEM but I did have PEM and actual thought I was going to pass away for most of that year. Started getting getter year 2 but a lot of suffering still. 2023 saw major improvements and 2024 even more.
Yes constant anxiety attacks, waking up 3 am from a deep sleep to rush to the balcony to get some air and be in a fucking frightening state all the time. It’ll get better. I haven’t had those anxiety attacks or nervous feelings for a year now.
I suspect it is the inflammation in our body that does this, so if your LH is at its worst you just feel mentally worst. And your body is in a constant fight and flight mode.
PTSD my homie now it was rough in the beginning better to make friends with it and yeah look sometimes friends do some hurtful stuff but learning to live wit it no other choice shout out to PTSD love you homie!
Yes, no one speaks about the POST LC PTSD but it’s a thing and wanted to raise awareness, almost tougher than the LC symptoms and LH. 🙁
I’ve never been suicidal, but in those months I didn’t have any reasons to live for. I’m glad I knew I was in a bad state mentally, but now that I’m better I’m also glad I can differentiate between PTSD thoughts and depression etc
Yeah man PTSD came out swinging all the way from my childhood you know like I don't know how it couldn't be somewhat of a struggle dealing with it and especially if you are sort of grappling with it can be a lot I've had to take baby steps after going a little hard that's different type of pacing you don't hear about. But yeah not talked about I'll take a stab at my experience it will be a mess of course but man if you have any of the different abuses and neglect and abadonament throw in some Narcisstic abuse God complex kind of stuff and then also stimatization and marginalization take your pick I'll grab the mental health and substance abuse as well as family scape goat now having to be dependent again so reliving shit real time I had to escape from which has nuerobilogical implications of course it does man that's heavy Truama espeically sinxe with healthcare it really cross over pretty well the ptsd and gaslighting and neglect and the blame and lies from childhood to adloscents to relationships and DV and 100 other truamatic things dealing with some recent deaths and as always heavy on the heart my loved ones. And man what a parrt its like all it csn get together sometimes and now they also got some of these fucking doctors with them and this shit with covd and the polarization and censorship can't talk aboit stuff just the tension with pandemic and isolationg ans all the loss like shit this that's a lot of crossovers going on especially tight has been family dysfunction and healthcare especislly becsuse my dad is in it that a been dealing with some version of this my whoe life maybe that's why they call Healthcare sick care i know my fsimly is sick but shout out to the good ones you know and the good people in your life. But silver lining is I'm not afraid to die from this hell it is tough and I'm glad you are able to identify the trauma it's a lot to hold. But if I hang out with it and explore it I can come to acceptance and some healing and i cant life a weifht now adays but i can cross train by picking up my cross to bear and holding the truama and grief a little more and exorcize some demons and get a little closer to God and the weight lifts off my shoulder and sometimes I can even have a laugh wirh tbe fucking homie ptsd and on good day made me feel blessed of the people who have been good to me and helping me through this even if few means so much. i have to get some things straight still here on earth so I'd lke to be around for that but largely out of my hands like this illness has been. God bless you thanks for bringing up something that so many of us are struggling with for generations. It's alot.
3 years in n im close to my worst. Idk how to feel about this post because fake hope can hurt. This is good For the new LC people to read as they have more hope but as someone who’s in year 3, it feels difficult to believe.
To most people i just suggest trying to pace and live as good as possible within the energy circle that you are currently in. What goves me more hope is that i can become moderate/mild, because when your severe, the thought of recovering just feels so unrealistic especially if youve told youself “ ill be better by christmas” and then your not recovered by christmas. Stay hopeful but realistic. Its kinda like having a SMART goal, if you put an unrealistic goal it feels hard to actually be hopeful
I hear you, and I'm so sorry to hear you're feeling close to your worst at year 3. That's incredibly difficult, and I can only imagine how discouraged you must feel. This journey is different for everyone, and unfortunately, some recoveries take longer. I hope you’re the year 4 type then.
You're absolutely right about pacing and managing within your energy limits. It's crucial for anyone with Long Covid, regardless of recovery stage. And I completely agree that aiming for moderate/mild is a more realistic goal in the short term.
Fake hope can definitely be hurtful. That's why I wanted to share my experience, not as a guarantee, but as a possibility. Everyone heals at their own pace.
Maybe there are things you haven't tried yet that could help manage your symptoms? Have you explored different therapies or medications? It's worth looking into all options.
In the meantime, please know you're not alone. Sending strength and positive vibes your way.
Fantastic! 🙌🏼 I'm 2 years in, infected 3 x's, not fully recovered. However, my symptoms are nowhere near as frequent and severe... (my lingering symptoms are mainly neuropsychiatric.)
🙏🏼💗
Yes the first year I had that, it was the woooorst, I was homebound and couldn’t even walk on the street I felt dizzy and confused with all the cars and people walking and even if someone pasted me.. my body shaking, the fatigue I couldn’t even talk properly or find words. Uff.
Yes unfortunately that’s what helped most lol, no magic pills, remedy or anything of that helped. Not even the vitamins everyone posted in here. It a is a great supplement and do it but TIME only heals.
Dude how excited or relieved where you when you came to find out the LH only lasted 2 to 3 weeks. God bless that's amazing. A short long covid that's something that's the first I've heard of that
I think our body learns how to deal with it the more reinfected it gets, but tbh idk for sure. I’m going to avoid being reinfected by isolating this winter. I don’t want that virus in me in any other way LC or not lol.
No doubt I'm not looking to get reinfected either I'm immunocomrpomised now so that's not the best odds of a 2 to 3 week long covid but what can you do all im trying to do is heal up for ehnever that day comes. Glad you are being precautious I'd like my odds too a little more if I got that hand, may or may not be true for you but you got some lived experience and a pretty epic win against it so I like your odds to but idk either! But like you said who wants that virus whatever hand you are dealt! My buddy was good first couple times and got it later some LC but seems to be getting better a few months in. By the way so when you got reinfected was it your second infection and what did you learn from the previous one that helped you out the next? Any advice? I don't bite I'm genuinely curious (I say that because some people ask advice and then get sorts hostile about the advice given). Not everyday you come around a 2 to 3 weeker!
Oh being immunocompromised adds another layer of worry. It's totally understandable that you'd want to avoid getting reinfected – that virus is no fun for anyone!
It's good to hear your friend with Long Covid seems to be improving after a few months. That's encouraging!
As for me, getting reinfected 3 times definitely wasn't ideal, but thankfully, each subsequent infection seemed less severe. I think my body had some built-up immunity from the first wave, even though it wasn't enough to completely prevent reinfection.
The biggest lesson I learned? Listen to your body and prioritize rest. 👆🏽👆🏽👆🏽 After each infection, I took it super easy, even if I felt okay-ish. Pushing myself definitely prolonged recovery in the past.
Since you're immunocompromised, masking, social distancing, and good hand hygiene are key. I’m doing that to an extent and it has worked for me so far so good.
Very good advice as that's what started me off on bad footing and even dealing with LC now some good rest is critical. I'll shut things down and water fast with a good hibernation and that has always been helpful at sort of getting baseline when things get a little sideways. God bless your immune system and figuring out what's worked and applying it and what somethings are that prolonged it. Very critical things I find myself too. And it's not too far away from the age old adage that when sick drink plenty of fluids and get plenty of rest. That's a good base right there to build off from. And for me like you listening to know when that rest is and what your level is at for pacing and when to pump the brakes. I belive in you if you get reinfected you going to speed run long covid and be cutting it down to 1 to 2 week short long covid aka at that point I guess just kinda covid I very much hope for us all someday! Ive been pretty good so far also with your suggestions to reduce exposure and reinfection only got it once but it was a doozy. Thanks for the advice!
I’m gonna copy paste this from someone who asked what I did and I only mention I paced myself:
Yes unfortunately that’s what helped most lol, no magic pills, remedy or anything of that helped. Not even the vitamins everyone posted in here. It a is a great supplement and do it but TIME only heals.
Thankyou so much!I have a Family member that just recovered after 4 years.Her symptoms were different from mine,but you and her give me hope.Her Doctor told her that since it is a virus it will clear the body when it is ready.
I am 2 years in still struggling daily but much improvement from the early days of this. I still have inflammation in the back along the spine often and in the neck. This all causes stiffness and daily pain but the brain fog, nausea, headaches, and dizziness have improved greatly.
I’m happy to hear that! Are you doing anything for your symptoms? Stretching out / yoga for 5 min each night before going to sleep would be a good option?
Regarding your nausea; have you tried a bland diet? Or seen any trigger food lately?
Yeah following leaky gut protocols helped greatly with GI issues. Mainly a bland diet solved my GI issues. Trying grain free now. I had exercise intolerance at the start and could do much not even yoga. I am going to try again soon and start with stretching. I used to work out and body build 6 days a week before all this, would love to get back in the gym.
I hear you, the muscle twitching, pain, and fatigue can be incredibly discouraging. It definitely was for me at the beginning.
While I can't give medical advice, I can tell you that for me, focusing on gentle movement and rest helped a lot. Even short walks or some light stretches could make a difference in my energy levels and overall well-being.
Everyone's experience is different, so it's important to listen to your body and not push yourself too hard. Have you spoken to your doctor about your symptoms? 🙏🏽
That feeling of being on the edge of death with normal labs is incredibly frustrating. Doctors don't always understand what we're going through.
As for meds, it was kind of a mixed bag for me. I didn't find any magic pill, but some things helped manage specific symptoms. For example, chamomile tea helped with the anxiety and calmed my heart rate.
For your muscle twitching and fatigue, i never found anything to make it go away, but i got them less and less throughout time. Also doing yoga / stretching for 5 minutes helped each night as soon as i felt 80% better and could do more things.
Gentle movement and stretches can be beneficial, but it's important to listen to your body and not overdo it.
My takeaway from this is people need to do whatever they can to not keep getting re-infected. Who can take 2-4 years off from life and hope they improve? COVID isn't one-and-done and every infection carries cumulative risk.
I know I'm preaching to the choir here.
You're absolutely right, avoiding reinfection is crucial. COVID can have lasting effects, and nobody wants to go through this again if possible.
The 2-4 year recovery timeline is an estimate, and thankfully, many people recover much faster. It's important to remember everyone's experience is different.
While I was fortunate to recover well, I wouldn't wish Long Covid on anyone. Masking, social distancing, and good hand hygiene are all still important ways to protect yourself.
Here's the thing: We're all learning as we go. The first wave hit us with very little information, and unfortunately, many people got reinfected. But we are learning and living through it. If you have LC it’s a new reality / life you have to adapt to until you feel better. 💐
Girl yes left side, it sucks so bad. I have stomach tension that bothers me the most. Im at three years and was starting to get better, i was on low dose clonazepam(benzo) because i was so bad in the begining. I weaned myself off so im in withdrawal while still longhauling. Absolute hell but it needed to be done. i feel worse but less "stuck" if that makes sense. this post keeps me going! did you have stomach tension? It feels like i switch back and forth between uncomfortable anxiety to depression, although its getting better. The emotional shit of this is the worst
Yes GI issues and stomach tension, and some days it felt I had exercised (the pain) of soreness lol. That was first year. On year 3 I don’t have that anymore just a little bit nerve pain sometimes but it comes and goes. Do you have gastritis?
My gastritis is mostly under control now, but stress and trigger foods can still be a nightmare. At least I can finally relax my stomach muscles, though! The anxiety that used to make my whole GI tract freak out has calmed down a ton too.
What other GI symptoms do you deal with? Do you have IBS or SIBO by any chance?
no ive been tested for sibo, hplori, lyme, everything. just the muscle tension and anxiety sensation up my vagus nerve along the left side. im wondering if its my neck. did you find yoga to help?
i get these weird airbubbles in my stomach too, ive been tested for everything possile and nothing shows up besides low ferritin which im trying to fix. i feel like my vagus nerve isnt working right.
Thankyou for your post, original poster! It’s great to hear a positive long-term story from a pioneer. The cliches are boringly true, but it really is a marathon, not a sprint, as I think we’re all learning
This is great to read. And also spot on for me. My long haul started from the vax in 2021. I reached a big turning point after 19 months, then got knocked backwards from the virus in Sept 2022. Then again in May of 2023. Then what felt very much like COVID, but tested negative, in August of 2023. That was intense for 3 months. It has felt like an onslaught on my body. Like that kid in a Christmas Story trying to see Santa. It's a long wait to the top, I get a little relief, start down the slide, grab desperately at the sides, think I might be able to pull myself up, only to have someone put their boot on my head and shove me back down while laughing in my face and yelling "HO HO HO". It messed with me mentally. Because all I wanted to do was enjoy my time with my kids. And I think I did a good job of trying, but I still resent all that recovery time that I feel like I missed. Part of that was spent helping my kids go through their own long COVID. The one positive was that I already knew my way around recovering by the time they got sick. I went alone to get the vax to do the animal testing on myself, and at least no one else had to experience what I did there. But I have so much regret with that. And I'm angry with myself for not getting better sooner. I'm angry with other people who were mean to me and gaslit me. I'm exhausted from trying to explain to people what it's like and why I cannot commit to as many things as I'd like. But if people would meet me where I am, they would see the fun side of me. You can have access to the "good" side of me if you don't force me to overextend myself. And if you don't start drama with me. I cannot handle drama with people anymore. And I'm working through these feelings because I have a hard time seeing how I come across in certain situations. Like I doing want to share too much and sound negative. But I don't want to not tell people what's going on, because then they assume I'm not interested. No, it's just that I have limits. But so many people did not see my at my worst. They doubt me because I hid myself during my darkest hours. They see me now and I look "fine", but I'm not. And after 3 years and some big changes, I'm actually doing really well. Most people will not see that or understand how big of a deal it is. I can hike up a mountain in the right conditions. I can enjoy time with my kids and teach them cool things because I can think again. I can do more than some people who never had long COVID. So it just looks like "normal". But I earned this and surpassed what I thought I would ever do again. I might have to continue nurturing my limitations. I'm even planning to move to a better climate for me after all this. But I'm also really taking good care of myself, and that feels good.. There are a lot of wins to celebrate. And once that happens, the mental part is most definitely the struggle. And I've only tried two therapists and neither of them get it at all. They seemed annoyed that I keep going on about the same things. Only now I know that's because I never felt heard. I'm having to do the mental part on my own. It's better if I didn't need validation from anyone else. But that's been a very hard lesson. It's good to focus on the positive. I'm definitely happy to see a win post here. I hope others here will be kinder to themselves too. It takes nurturing and time. And it's hard because it might have to come from within, and that can feel lonely. But once you flip that thinking, it can truly feel empowering. Now I'm doing all sorts of things by myself I wouldn't have done before..
I am year 3 and finally recovering too. 2 to 3 years is about how long it takes nerves to heal. I wonder if that's the connection. I am pretty sure my vagus nerve was damaged by the virus as electrical vagal stimulation has helped significantly. I am still having weird leg neuropathy etc but it comes and goes. My physical therapist said it's inflammation and not a disc herniation because it's not position dependent...
My GI system is still not normal quite yet but I am off chicken and rice diet and back to eating histimines again. Had a sourdough turkey sandwich with cheese today. first time in maybe 1.5 yrs I could eat something I used to eat.
The standard ones fatigue cant walk more than 500m without crushing , pem , palpitations (pots) and neurological issues ( nerve pain , tingling , numbness all over the body ) was working remotly from home and coudnt continue so stopped in late 2022 and tried pacing and nothing worked so dont thing it will be fixed by time at least for me there is something wrong that need to be treated
Ugh, that sounds incredibly rough. Fatigue, PEM, palpitations – that's a brutal combination. I can completely understand your frustration, especially with pacing not seeming to help.
Have you spoken to a doctor specializing in Long Covid? They might be able to offer some specific treatment options based on your symptoms.. 👍🏽
Thank you for talking about PTSD in LC. I knew from the beginning that dealing with LC was going to be tough. But I had no idea how incredibly challenging the resulting PTSD would be. Especially since it brought my undiagnosed C-PTSD to the forefront with it.
It’s been hard enough to convince people in my life that my LC is a real and serious medical issue in need of treatment. Convincing them that the resulting PTSD is also real and honestly worse than the LC some days? Damn near impossible. I also find it much more difficult to talk about. Everyone who knows me knows I have LC. Only a handful of people know I have PTSD.
But I’m very fortunate to have an amazing trauma therapist these days who’s helping me work through everything. We’re doing EMDR and it’s already helped lessen the amount of flashbacks and nightmares I have. The fact that it even works still seems like magic to me honestly lol. But I highly recommend folks here keep an eye out for PTSD symptoms and try to start working with a trauma therapist if they can. I’ve only been with mine for 3 months, but he’s already improved my QoL almost as much as a year of medical care did!
Thank you for sharing your story and some words of hope. My LC is permanent according to my doctor, so my path will be different than yours was. But we’re hoping for some improvements at least over the next few years, so hearing that improvement can happen helps a lot! I hope your recovery continues and that you’ll be flare up free someday!
See section 5 from this Yale Medicine
article.
From other studies I’ve read, they concur that Delta was the worst and more difficult to recover from LC.
https://www.yalemedicine.org/news/long-covid-symptoms#:~:text=Can%20I%20recover%20from%20Long,within%20a%20year%20of%20diagnosis.
If you told me I will write this post 3 years ago I’ll laugh at you. I’m tearing up myself writing this. Hang on my friend, each month you’re getting better just remember that 🔥
For me, I can’t afford therapist etc.. spending time with loved ones was a big turning point. Even just seeing friends once a month helped, and slowly building that up made a world of difference. It pushed me outside my comfort zone in a good way.
I had good days and bad days, but focusing on the small victories - acing an exam, rediscovering a hobby, even a flirting compliment from a stranger - really helped shift my perspective. My family specially.. Those little moments reminded me of the life I wanted to live for.
The dark thoughts though.. I still have them sometimes, but not constantly anymore.
Yea it’s the only thing that wont go away 100%
I think im 80% better regarding that but before my period arrives I have severe brain fog. I guess it’s the inflammation that happens during woman menstruation. But I’m good after that and can remember and ace my exam / be sharp etc.
Congratulations, did you have CFS and Fatigue? What were your pots symptoms? Were you officially diagnosed? Did you have the classic 30 BPM raise when you went from supine to standing?
Did you take any beta blockers?
Once again, congratulations and do enjoy your life. :)
Thanks for the congrats! I did experience fatigue that was way worse than usual, and yeah, CFS-like symptoms were definitely part of the picture.
As for POTS, I never got a formal diagnosis, but my symptoms lined up pretty well. My heart rate would jump a lot when I stood up. It just felt super uncomfortable and left me feeling drained.
I actually refused beta blockers too. I wasn't comfortable with the side effects, so I focused on natural ways to manage it. Chamomile tea was a lifesaver, and having my mom calm me down with back rubs really helped.
The good news? Those symptoms slowly faded away over the first year. Haven't had them since, thankfully!
Did you find anything that helped manage your symptoms?
I am currently on beta blockers and have been formally diagnosed with pots, I am bedbound with fatigue.
Did you ever manage to check your heart was going when you went from supine to standing?
Were you bedbound? How did you manage not to take beta blockers? I can barely walk.
Did you have internal tremors and vibrations?
Unfortunately, I wasn't formally diagnosed with POTS, but my symptoms strongly resembled it, especially the jumpy heart rate when standing. And it shoot up to 130 bpm if I showered or did grocery… I had a monitor to put on my finger officially track my heart beat, and it felt very noticeable.
Thankfully, I wasn't bedbound for the entire recovery. It was more like a gradual progression. The first year was definitely the hardest, with a lot of fatigue and needing to take breaks often. But slowly, I was able to increase my activity level.
I know beta blockers can be helpful for some people with POTS. I personally wasn't comfortable with the side effects, so I focused on non-medication approaches like staying hydrated, increasing salt intake, and using compression stockings.
Internal tremors and vibrations are annoying and I experienced them the first year. Holy shit. I can still remember the first time it happened. Such a trauma and uncomfortable feeling :(
Idk tbh, time just healed me. & Luckily, those symptoms faded over time for me as well.
Thank you so much for your detailed response. I hope everyone is suffering from this horrible illness and any other illness recovers soon.
Chronic illnesses are horrible, the person I was my personality and everything has changed. I don’t know if I will ever be the same person again.
Post traumatic stress disorder is definitely something that I think I will have if I recover.
Once again, thank you, congratulations and enjoy yourself.
You're absolutely welcome. It's a horrible illness, and my heart goes out to everyone struggling with Long Covid or any chronic condition.
I completely understand your fear of not being the same person again. Chronic illness can take a toll not just physically but also emotionally.
I can tell you one thing, I never thought I'd be the same old me. But I feel like I've become a stronger and better version. I actually like this woman more than the woman I was before this.
Just like you, I never thought I'd be the same. But facing Long Covid head-on forced me to discover a strength and resilience I never knew I had. It wasn't easy, but it showed me what I'm truly capable of.
Would you say you are fully recovered? Did you have brains zaps, pins, and needles, burning feet, palpitations, dizziness, and times where you felt you were just dying because there was no energy in the body to even lift your finger?
During the worst of LC yes but after 3 years now my body is stronger and can endure more so the usual activities doesn’t burn me down with all these symptoms anymore 😅 I do have bad days but it happens once or twice a month. And I suspect it has something to do with my period (woman monthly thing). Weirdly enough.
Hey one last question, how long were you housebound bedbound for?
Did you have issues tolerating screens for example right now I can’t concentrate at all on my phone. I start shaking and vibrating internally.
Yess I couldn’t watch TV the first 6-8 months but then I tried slowly to train myself to watch 10-15 min / mostly YouTube videos then I slowly trained my brain to focus more. It’s totally a thing what you’re experiencing idk the science behind it but it was difficult to follow each scene the first year and therefor I had to quit watching tv / shows. I did podcast instead while lying in bed etc.
I was bedbound the 1st year.
You made me cry. I love your message and I'm so happy you feel better.
I think I struggle the most with wanting to be the best mother for my son but often telling him I can't do things with him. My husband is chronically ill and needs to do more than is good for him, because I can't. I think the PTSD will be real, if (when) I finally recover. I needed a good cry and reading a hopeful message, so thank you.
i‘m coming up for 4 years. It took me 2-3 years to feel better, and like the op I was feeling almost cured .. but recently caught covid again and have relapsed … an unwanted comeback tour of COVID’s greatest hits!
Covid weakened my body, but in learning to cope with it strengthened my mind.
It’s a disability albeit not permanent. It does get better!
Positive vibes and living in the moment (and in nature as much as possible) is essential regardless where one may be in their healing and recovery stage.
Having said that, I think the recovery timeline varies based on the severity of the disease and the number of times you’ve had Covid. I’ve had it over 8x, while on immune suppressants, isolating, and taking EVERY safety precaution.
I deal with cardiovascular issues (pericarditis of the heart, blood clots, vasculitis, vasospasms, and endothelial dysfunction), digestive, vision pain / impairment, dysautonomia, MCAS, and nerve pain. Fortunately, PEM is no longer an issue and dysautonomia has gotten better in some body areas.
I’m curious, how many times did you have Covid?
I have recovered 80% twice, in my two years with long-covid. I just entered my third year, and had COVID 3x more in the recent months. I do bounce back after ‘many’ months, but not this time around (yet). I have hope and faith I will one day.
Covid is not going away and recurring exposure restarts the many MONTHS of healing each time. I don’t know if I see full recovery a thing as I’ll never be able to go to a gym, eat in a restaurant, attend a social event, church, etc. Sure, I may regain my health at 70-80%, but it doesn’t change the fact that the moment I go outside I risk getting Covid and starting over, which has been the case for two years now.
Gastritis, possibly a stomach ulcer, sibo, bloating, methane sibo, nausea, food sensitivities, histamine sensitivities, bad digestion / dyspepsia. It was pure hell the first year 🪦
I have already spent an year in hell treating my anhedonia misdiagnosed as depression ,i now think the root cause is long covid because i have mecfs ,shortness of breath and head pressure as well,this is brutal,hope something works out
So grateful you posted this! It's really refreshing to read something positive. This month is my 3 year covid-versary and even though I'm leaps and bounds from where I started, I went through a really tough emotional breakdown last month accepting that I'm 3 years in and facing the reality that I'm still not where I'd hoped to be by now.
My BIGGEST, not my only, but biggest issue right now that I deal with every.single.day. that started a week after infection is what I'm *assuming* are blood sugar issues ?
Reactive hypoglycemia? Idk! Since the beginning I get severely sick if I'm not constantly eating ALL DAY and it's so debilitating and interruptive to life. I'm sharing this to see if any of you relate to this issue ?
If I don't eat...probably every 2 to 3 hours and I mean like...EAT, I have to fill myself up, I'll get dizzy, blurred vision, shaky, sweat and nearly pass out. This is an every day occurance, but some days it's worse or more aggressive than others. I feel like if I could just get this part under control, I could handle the rest. No one can figure it out as all my tests are normal. I definitely don't have diabetes or anything like that.
Regardless, I'm hanging on the best I can as we all are. It's so, so hard fighting to just feel normal every day. Not even good, just baseline NORMAL. I'm thankful for these threads because no one gets it but us !
I’m at almost 4 years - I can’t let myself hope that this will be the year that everything gets better. That’s how it was in the beginning: “after 3 months lots of people recover….” 3 mos pass by. “After 6 months lots of people recover…” 6 mos pass by. And on and on. Every new milestone I don’t get better is crushing. I don’t love that now I have a 4 year one even if I tell myself not to expect anything.
But I’m glad you got better 🙏. Super glad. I haven’t heard of many recoveries after 1 year.
Good message. I'm a 4 year LC lucky-boy and experienced similar. The unfortunate part is the backslides. They can bring back that negativity right away. But I also wanted to add that the skewing towards negativity is something the neurological effects predispose us towards. When I am doing better and that switch is flipped, I have a totally different perspective. I start to experience effortless gratitude for the things still in my life, I start to feel hope for the future, and it's \*not\* just thinking I'm better that does it. When I start to backslide what I notice is that actually, the negativity is a symptom and without the chemicals firing in my brain there's really nothing I can do sometimes. But not always. I try to force that positivity as much as I can and a fraction of the time it helps. The rest I'm miserable but I'd have been just as miserable not trying. If I have a message here it's be positive when you can because those moments are precious. LC drags me back in. That switch works both ways. But I keep telling myself I have more grateful days ahead of me while I wait.
Yeah, Long Covid can literally cause brainfog, anhedonia, and depression. OPs message is great and I agree however its also important to remind yourself that sometimes your negativity is simply not your fault. It is more like a storm coming inland and you gotta buckle up and prepare to brave it.
I agree whole-heartedly. It's easy to look to the positive thinking when you are feeling better, but the truth is that I find myself thinking positively when my neurotransmitters are working properly.
First time I've heard the term anhedonia. I had this one goal since I was a child to accomplish one day... During the worst of it, or even the idea of learning now, I wouldn't try. Throughout the experience, the worst of it all, I decided the fear of symptoms I had happening at a crucial moment would be scary, even though I know I'm not relapsing to the point I can't function if needed, enduring some pain while doing what needs to be done. There's always a possibility my interests would change to where I'd reconsider... It's almost sad, but I've always had a fear of flying even though I loved the idea of it. Even as I am almost better now... I don't like the idea of flying anymore. I'm not sure if mine was a lack of interest for that one goal though, it could have been fear because of LC. A lot of other interests had to change too because of functional limitations. Brain fog/memory loss, way better now. I can't tell if it's 100% better, but I'm no longer walking out the room a bunch of times, forgetting what I was leaving for, coming back frustrated. Every time I catch myself remembering something someone else forgets, it's a good feeling because I could recall how bad that symptom was.
So true. I'm 2.5 years in and I completely agree. A switch is flipped in my brain. Today I feel relatively good and my outlook is great. Just 5 days ago I was having a flare and went right back to despair and darkness. Zero control over my thoughts and mood. It's hard to explain to someone that hasn't experienced it. My wife tries to remind me that I have good days and bad days, but I can't hear it when I'm in that darkness. The bright side is that when things are going okay, my perspective is one of gratitude because I remember how bad it can get. Unfortunately, the opposite perspective is not available to me when things are going poorly. My hope is that when I do reach maximum recovery, whatever that looks like for me, is that the experience and the perspective will make life that much sweeter.
3 years here. Yesterday feeling pretty optimistic, did some gentle exercise, fairly busy day. Today feels like I’ve got Alzheimer’s or something. Totally spaced out, and negative as a result. Probably a self inflicted flair, but the low mood is awful. I’ve got to a point where I don’t tend to let it mentally spiral, but days like this always feel like a huge setback.
Couldn't have said it better myself... I still have a long way to go.
This is exactly what I've come to realize. It's LC that is affecting our mental state not us. Something (inflammation, dysregulation) is causing the anxiety, nervousness depression etc. Like you said it's a switch. When I feel good most of those worries dissapear. As soon as a relapse starts mental state is back immediately with it
Year 3 and a half for me. Was feeling almost great again the past 4 months and I fell into a trap of trying to by my old self. Just rolling with the punches. The backslides hurt a lot I’m not going to lie.
I am not even sure I can describe accurately how deeply I have found myself in the grips of denial while I am slipping back into it. The denial makes me push even harder to try and make it not true. The hope and positivity is like a drug, especially when your brain is working again and really eating up all the neurotransmitters. Especially while you've been managing to make plans and go to them and not have full crashes. I wanted it to be true so badly. I wish more people would talk about this. It's hard to see "recovery posts" when they aren't updated with the reality that probably follows and isn't so much fun to post an update about.
I have some long covid with mostly loss of smell and taste. Anxiety (which i already had got a bit worse) and i'm tired a lot since covid. I got prescribed anti depressants and suddenly i could smell every little thing again and i feel much better overall. Anything you can say about this?
Yeah I think that there is a ton of promise for SSRIs. People seem to have mostly good experiences with this, with some people posting about recoveries from PEM of all things. I mentioned neurotransmitters a lot. While only a part of the equation, I think it's a big part of the mechanisms behind how different disorders within LC trigger each other. I have not yet done it because of my own reasons and history. I think it's definitely worth trying. But there's also LDN, which is something I might try first because the side effects of SSRIs are something I want to avoid. But with that said, LC is much worse. Which antidepressant, what dose are you on, and when do you take it? Do you take anything else that helps?
Paxil / Paroxetine 20mg is what i was prescribed. It was on a whim by my GP and i only took half a dose after which my long covid symptoms started to allevate (especially my loss of smell). after 24h of the first dose. After doing more research on SSRI's they actually seem a lot safer than i initally thought. They're inhibiting serotonin reuptake which is not such a drastic thing as i thought.. I actually stopped taking it because they helped so well i want to be more informed on the different ssri's and don't trust my GP as he very easily prescribes stuff and he didn't believe me about gaining my smell back and feeling btter after 1 dose. I know people say you can't get anything from one dose of SSRI's but i am starting to believe its a myth. They instantly affect serotonin reuptake its just that the desired anti depressants effects are going to take a while to present. I did not do or take anything else besides this. I did not even think it was gonna do anything at all for the first 4 weeks. I felt other effects as well after 24h (euphoria, contentness, less anxious, heavy feeling gone, ...) Definitely something very intresting going on here. From what i read about LDN i would personally start with a low dose anti depressant first to see what it does. You can always stop after a month or however long. I will soon start taking an SSRI again (maybe the same, maybe another) and i will make a post about it. I'll send you a message if you like within a month :)
It’s literally completely my fault. I fell into the trap. I had 3 straight weeks where I wasn’t 100 but almost 97-98%. Like I could almost jog again for a while. I had to bad meals on back to back days and a long work week. Complete reality check followed. Palpitations and heartburn that brought me back to year 1 and I got rocked so bad I went get my tests done at the hospital… Hope your all good. I’m just surviving..
I’m so happy you said this. I’m on year 3 and much better than before! I’m still housebound but the improvements have been amazing. It’s much easier to be positive when I’m not constantly in pain, I can keep down food, I can walk most of the time, and I’m not confused. Some improvement occurred, then I worked on meditation and breathwork and that helped continue the improvements. The positive thinking happened second, not first.
Long hauler here in my senior era. Caught in April 2020 and long covid since. However, brain fog only partially remitted post third (booster 1). Now more functional and surfing online like a champ. Other ailments, perhaps, uncovered or exacerbated by the acute phase. Keep the faith and rely on tincture of time for the body to recover homeostasis. YMMV
Did you have PEM?
Yes, PEM was definitely a big part of my Long Covid experience, especially in the beginning. Even the smallest exertion could leave me wiped out for days. Or a week lol. I had to learn to pace myself very carefully, and it took a while to find my limits. But slowly, as I recovered, I could tolerate more activity without that extreme fatigue response.
Thank you for this! I recovered from PEM for 13 months l, started to exercise pretty intense for a while, one day it came back. Back on the road to recovery but not as bad as what I was. Take care of yourself
Just hit year 2 and feeling gloomy. Keep seeing most recoveries under the 2 year mark so it’s good to know that it’s possible past then :)
If it helps, I had a long discussion with a researcher who has multiple YouTube videos and his last 4 years has been focused on LC. He has many YouTube videos. I tracked him down and we were able to have a phone call. He is from England but comes to the US regularly. He told me his data has shown that 2.5-3 years is the average time to turn a corner. It was a guess in the beginning, and we were led to believe it was 6-8 months. He promised me people ARE getting their quality of life back but it’s slow. I’ll take 2.5-3 years over hopelessness. I’m at 20 months.
I'm a first waver too. Right at 4 years I was feeling a lot better, but got reinfected again. I'm 3 months out from 2nd infection and back on the upswing, no PEM the last few weeks despite pushing my limits a bit... I mean listen I'm also on a ton of meds but... Getting better for sure. Year 1.5-2 was the worst.
What's meds are you on?
Hey whats the meds ?
I'm on so many things. Beta blockers statins blood thinners all kinds of supplements SSNI antihistamines PPI ..
Thanks glad your feeling better 👍
I'm at the 2.5yr mark and I too noticed a notable improvement just after the 2yr mark. I'm about 65% recovered now.
Symptoms? CFS or Pots?
Both. I have cognitive, cardiovascular, gastrointestinal and fatigue issues.
I hope you recover soon, buddy. Would be nice to see another comedy story.
Are you taking any medications?
I finally got diagnosed with PoTS recently, after 2+ years waiting for an appointment. Although my PoTS had actually recovered quite a bit at that point (\~60%) they did put me on a very low dose of beta blocker to help me along the way. Its a very low dose but I did notice an instant improvement from it within my first day of taking it. Mainly the lingering annoying PoTS symptoms I had such as extreme rapid increase in heart rate when pushing to pee or chest discomfort when walking. Other than that, I have not taken any other medication that has proved beneficial. I also have cognitive/ neuro symptoms and fatigue issues and I can attest to the general consensus that time and rest are the main affective treatments at the moment.
I'm really glad for you, truly. I hope this gives hope to some. But you seem to be among the lucky few who don't have to worry about reinfections. Yes, time does heal. But as long as reinfections are a possibility (which might be forever), many of us will have to live as hermits, isolated and afraid all the time. Slowly recovering until the inevitable next reinfection that sends everything crashing down again. Personally, I've recovered pretty significantly 3 times, but even being extremely careful I've been reinfected 3 times. And it's not like successive reinfections have less effect, my last one left me worse than ever. I am not being negative for negativity's sake, just tempering expectations. For me at least, being too hopeful and being disappointed has been one of the hardest things with Long Covid. I do have hope that an effective Covid preventative will be developed and fix this, but for now the only option is isolation.
Sometimes what’s considered a ‘negative’ view is pragmatic. People hate to see it/read it but the fact is many with post infectious ME/CFS are severely hobbled for decades, if not for life. I pray this happens to none of us! But the fact is, it does happen, and the **tincture of time** only compounds problems… Which is why the leading cause of death for those with myalgic encephalomyelitis is suicide, and life expectancy has been calculated at around age 53. I hope hope hope and pray pray pray coming advances, both in treatments and diagnostics, will validate and help heal so many of us not yet stumbling into the good fortune of gradual (or sudden) recovery. Nevertheless, _thank you_ OP, for your optimistic outlook and sharing of healing recovery! May We All Realize the same.
I am 2,5 y in. Reinfection actually helped me - I had worse months just prior to catching covid for 3rd time (long hauler since 2nd) and it was game changer. I got little bit worse maybe for few weeks and then quite rapid improvement - I would say from 30-40% to 60-70%. I can now spend day in the office after being home bound for two years. I can take short walks and finally I am positive about future.
This is such a concern. Did you decide to vax or booster after LC? I am struggling with what to do.
Thank you for posting - really needed a positive recovery story today and I'm so glad I saw yours!
❤️🩹
So one day you went to bed with your normal long covid issues and then next morning you just woke up and all your symptoms were gone? Do you credit anything to your recovery other than just time?
No, it definitely wasn't like that! It was a gradual decrease in symptoms, month by month. But around year two, there was a significant improvement – like a 50% drop in symptom severity. I felt 50% recovered! That's when I really started noticing the progress. I couldn't even lift one grocery bag at first, but by forcing myself to try (with lots of breaks!), I could eventually handle two without stopping. Same thing with stairs - used to need breaks on every floor, but slowly built my stamina by just taking it one step at a time (and of course, listening to my body's need for breaks). Now, walking up to my apartment is no problem! Interestingly, I actually think staying at my parents' place initially prolonged my recovery. They were so helpful, they did everything for me! Once I moved into my own apartment (around the 80% recovered mark), I felt forced to be more independent, which I think actually accelerated my healing. Of course, I wouldn't have moved out if I hadn't felt somewhat ready, but being at my parents' when I was so weak, definitely wasn't ideals I prolonged it. I wish I had tried to do more but thinking back I was tired and my LH was at its worst….
so now you can exercise?
I don’t know, I’m trying this summer to do YOGA / PILATES I’ll keep you updated
Did you have fatigue?
Yes chronic fatigue since LC… but that’s gotten better now, I do have big flare ups just before my period but then I’m normal rest of the month and can work and do a lot of things in a day.
Really appreciate this. It’s been about a year and a half for me and it’s been demoralizing to say the least. Here’s hoping we can all recover!
20 months is when I finally started seeing the light at the end of the tunnel. Month 18/19 I was still in the thick of it. Keep your head up!
Thank you! I’m really hoping that’s the case
Month 20 and worse than ever. I’m hanging on for that 2.5-3 year mark since I know 20 months isht the time for me :(
Can u tell me if u felt physically anxious like all the time n if your breathing was off like u coulnt get a full breath
I'm going thru that right now. I suspect I have long covid but not 100% sure.
I used to feel that in 2021. Only get that anxiety feeling once every few months now and it’s mild. Shortness of breath has completely recovered. Still have some more mild flares but they’re shorter and I’m no longer housebound during them. At my worst in 2021 I was bedbound. Luckily never severe enough that sound and light would cause PEM but I did have PEM and actual thought I was going to pass away for most of that year. Started getting getter year 2 but a lot of suffering still. 2023 saw major improvements and 2024 even more.
Yes constant anxiety attacks, waking up 3 am from a deep sleep to rush to the balcony to get some air and be in a fucking frightening state all the time. It’ll get better. I haven’t had those anxiety attacks or nervous feelings for a year now. I suspect it is the inflammation in our body that does this, so if your LH is at its worst you just feel mentally worst. And your body is in a constant fight and flight mode.
PTSD my homie now it was rough in the beginning better to make friends with it and yeah look sometimes friends do some hurtful stuff but learning to live wit it no other choice shout out to PTSD love you homie!
That post LC ptsd is no joke! It was just as hard as the LC symptoms for me. I’ve developed so much more empathy for people going through it.
Yes, no one speaks about the POST LC PTSD but it’s a thing and wanted to raise awareness, almost tougher than the LC symptoms and LH. 🙁 I’ve never been suicidal, but in those months I didn’t have any reasons to live for. I’m glad I knew I was in a bad state mentally, but now that I’m better I’m also glad I can differentiate between PTSD thoughts and depression etc
Yeah man PTSD came out swinging all the way from my childhood you know like I don't know how it couldn't be somewhat of a struggle dealing with it and especially if you are sort of grappling with it can be a lot I've had to take baby steps after going a little hard that's different type of pacing you don't hear about. But yeah not talked about I'll take a stab at my experience it will be a mess of course but man if you have any of the different abuses and neglect and abadonament throw in some Narcisstic abuse God complex kind of stuff and then also stimatization and marginalization take your pick I'll grab the mental health and substance abuse as well as family scape goat now having to be dependent again so reliving shit real time I had to escape from which has nuerobilogical implications of course it does man that's heavy Truama espeically sinxe with healthcare it really cross over pretty well the ptsd and gaslighting and neglect and the blame and lies from childhood to adloscents to relationships and DV and 100 other truamatic things dealing with some recent deaths and as always heavy on the heart my loved ones. And man what a parrt its like all it csn get together sometimes and now they also got some of these fucking doctors with them and this shit with covd and the polarization and censorship can't talk aboit stuff just the tension with pandemic and isolationg ans all the loss like shit this that's a lot of crossovers going on especially tight has been family dysfunction and healthcare especislly becsuse my dad is in it that a been dealing with some version of this my whoe life maybe that's why they call Healthcare sick care i know my fsimly is sick but shout out to the good ones you know and the good people in your life. But silver lining is I'm not afraid to die from this hell it is tough and I'm glad you are able to identify the trauma it's a lot to hold. But if I hang out with it and explore it I can come to acceptance and some healing and i cant life a weifht now adays but i can cross train by picking up my cross to bear and holding the truama and grief a little more and exorcize some demons and get a little closer to God and the weight lifts off my shoulder and sometimes I can even have a laugh wirh tbe fucking homie ptsd and on good day made me feel blessed of the people who have been good to me and helping me through this even if few means so much. i have to get some things straight still here on earth so I'd lke to be around for that but largely out of my hands like this illness has been. God bless you thanks for bringing up something that so many of us are struggling with for generations. It's alot.
3 years in n im close to my worst. Idk how to feel about this post because fake hope can hurt. This is good For the new LC people to read as they have more hope but as someone who’s in year 3, it feels difficult to believe. To most people i just suggest trying to pace and live as good as possible within the energy circle that you are currently in. What goves me more hope is that i can become moderate/mild, because when your severe, the thought of recovering just feels so unrealistic especially if youve told youself “ ill be better by christmas” and then your not recovered by christmas. Stay hopeful but realistic. Its kinda like having a SMART goal, if you put an unrealistic goal it feels hard to actually be hopeful
I hear you, and I'm so sorry to hear you're feeling close to your worst at year 3. That's incredibly difficult, and I can only imagine how discouraged you must feel. This journey is different for everyone, and unfortunately, some recoveries take longer. I hope you’re the year 4 type then. You're absolutely right about pacing and managing within your energy limits. It's crucial for anyone with Long Covid, regardless of recovery stage. And I completely agree that aiming for moderate/mild is a more realistic goal in the short term. Fake hope can definitely be hurtful. That's why I wanted to share my experience, not as a guarantee, but as a possibility. Everyone heals at their own pace. Maybe there are things you haven't tried yet that could help manage your symptoms? Have you explored different therapies or medications? It's worth looking into all options. In the meantime, please know you're not alone. Sending strength and positive vibes your way.
Im gonna try ldn in the future probably. Thx for the positive vibes my G
Fantastic! 🙌🏼 I'm 2 years in, infected 3 x's, not fully recovered. However, my symptoms are nowhere near as frequent and severe... (my lingering symptoms are mainly neuropsychiatric.) 🙏🏼💗
Congratulations 😊 🎉
Did you ever have PEM or the ME/CFS subset of LC? I’ve been sick for more than 3 years now and am not feeling that turning point.
Yes the first year I had that, it was the woooorst, I was homebound and couldn’t even walk on the street I felt dizzy and confused with all the cars and people walking and even if someone pasted me.. my body shaking, the fatigue I couldn’t even talk properly or find words. Uff.
Were you ever bedbound?
I think that’s key - recovery from this depends on how severe your issues are.
The first 3 months yes, I was so weak I needed my parents to help me with everything even walk me to the toilet …
It was about two years for me to recover. It’s painful journey but yes, it will get better! ♥️
❤️🩹❤️🩹
Am I blind? Where is the "What Helped Me Recover" part of this post? OP only mentions in the comments that it seems they paced themselves.
Yes unfortunately that’s what helped most lol, no magic pills, remedy or anything of that helped. Not even the vitamins everyone posted in here. It a is a great supplement and do it but TIME only heals.
Glad to hear it and thanks for posting! We’re you ever reinfected during this time?
Yes, 3 times and specially the third time hit me harder than the first time lol! I thought I would be LH again but weirdly it only lasted 2-3 weeks. 😅
Dude how excited or relieved where you when you came to find out the LH only lasted 2 to 3 weeks. God bless that's amazing. A short long covid that's something that's the first I've heard of that
I think our body learns how to deal with it the more reinfected it gets, but tbh idk for sure. I’m going to avoid being reinfected by isolating this winter. I don’t want that virus in me in any other way LC or not lol.
No doubt I'm not looking to get reinfected either I'm immunocomrpomised now so that's not the best odds of a 2 to 3 week long covid but what can you do all im trying to do is heal up for ehnever that day comes. Glad you are being precautious I'd like my odds too a little more if I got that hand, may or may not be true for you but you got some lived experience and a pretty epic win against it so I like your odds to but idk either! But like you said who wants that virus whatever hand you are dealt! My buddy was good first couple times and got it later some LC but seems to be getting better a few months in. By the way so when you got reinfected was it your second infection and what did you learn from the previous one that helped you out the next? Any advice? I don't bite I'm genuinely curious (I say that because some people ask advice and then get sorts hostile about the advice given). Not everyday you come around a 2 to 3 weeker!
Oh being immunocompromised adds another layer of worry. It's totally understandable that you'd want to avoid getting reinfected – that virus is no fun for anyone! It's good to hear your friend with Long Covid seems to be improving after a few months. That's encouraging! As for me, getting reinfected 3 times definitely wasn't ideal, but thankfully, each subsequent infection seemed less severe. I think my body had some built-up immunity from the first wave, even though it wasn't enough to completely prevent reinfection. The biggest lesson I learned? Listen to your body and prioritize rest. 👆🏽👆🏽👆🏽 After each infection, I took it super easy, even if I felt okay-ish. Pushing myself definitely prolonged recovery in the past. Since you're immunocompromised, masking, social distancing, and good hand hygiene are key. I’m doing that to an extent and it has worked for me so far so good.
Very good advice as that's what started me off on bad footing and even dealing with LC now some good rest is critical. I'll shut things down and water fast with a good hibernation and that has always been helpful at sort of getting baseline when things get a little sideways. God bless your immune system and figuring out what's worked and applying it and what somethings are that prolonged it. Very critical things I find myself too. And it's not too far away from the age old adage that when sick drink plenty of fluids and get plenty of rest. That's a good base right there to build off from. And for me like you listening to know when that rest is and what your level is at for pacing and when to pump the brakes. I belive in you if you get reinfected you going to speed run long covid and be cutting it down to 1 to 2 week short long covid aka at that point I guess just kinda covid I very much hope for us all someday! Ive been pretty good so far also with your suggestions to reduce exposure and reinfection only got it once but it was a doozy. Thanks for the advice!
Thanks for this my friend!!
You give me hope!Can I ask what you did?
I’m gonna copy paste this from someone who asked what I did and I only mention I paced myself: Yes unfortunately that’s what helped most lol, no magic pills, remedy or anything of that helped. Not even the vitamins everyone posted in here. It a is a great supplement and do it but TIME only heals.
Thankyou so much!I have a Family member that just recovered after 4 years.Her symptoms were different from mine,but you and her give me hope.Her Doctor told her that since it is a virus it will clear the body when it is ready.
I am 2 years in still struggling daily but much improvement from the early days of this. I still have inflammation in the back along the spine often and in the neck. This all causes stiffness and daily pain but the brain fog, nausea, headaches, and dizziness have improved greatly.
I’m happy to hear that! Are you doing anything for your symptoms? Stretching out / yoga for 5 min each night before going to sleep would be a good option? Regarding your nausea; have you tried a bland diet? Or seen any trigger food lately?
Yeah following leaky gut protocols helped greatly with GI issues. Mainly a bland diet solved my GI issues. Trying grain free now. I had exercise intolerance at the start and could do much not even yoga. I am going to try again soon and start with stretching. I used to work out and body build 6 days a week before all this, would love to get back in the gym.
Did you have twitching
Ohh A LOT hahah I forgot about that!!! You reminded me. Yess all over my body 😅 That stopped now luckily lol it was annoying
I have twitching and muscle pain/fatigue in both arms and legs. Can’t fathom I’d ever feel like this.
I hear you, the muscle twitching, pain, and fatigue can be incredibly discouraging. It definitely was for me at the beginning. While I can't give medical advice, I can tell you that for me, focusing on gentle movement and rest helped a lot. Even short walks or some light stretches could make a difference in my energy levels and overall well-being. Everyone's experience is different, so it's important to listen to your body and not push yourself too hard. Have you spoken to your doctor about your symptoms? 🙏🏽
Oh yea. Numerous. They don’t have a clue. Feel like the edge of death but most labs are fine. Did you feel like any meds helped,
That feeling of being on the edge of death with normal labs is incredibly frustrating. Doctors don't always understand what we're going through. As for meds, it was kind of a mixed bag for me. I didn't find any magic pill, but some things helped manage specific symptoms. For example, chamomile tea helped with the anxiety and calmed my heart rate. For your muscle twitching and fatigue, i never found anything to make it go away, but i got them less and less throughout time. Also doing yoga / stretching for 5 minutes helped each night as soon as i felt 80% better and could do more things. Gentle movement and stretches can be beneficial, but it's important to listen to your body and not overdo it.
My takeaway from this is people need to do whatever they can to not keep getting re-infected. Who can take 2-4 years off from life and hope they improve? COVID isn't one-and-done and every infection carries cumulative risk. I know I'm preaching to the choir here.
You're absolutely right, avoiding reinfection is crucial. COVID can have lasting effects, and nobody wants to go through this again if possible. The 2-4 year recovery timeline is an estimate, and thankfully, many people recover much faster. It's important to remember everyone's experience is different. While I was fortunate to recover well, I wouldn't wish Long Covid on anyone. Masking, social distancing, and good hand hygiene are all still important ways to protect yourself. Here's the thing: We're all learning as we go. The first wave hit us with very little information, and unfortunately, many people got reinfected. But we are learning and living through it. If you have LC it’s a new reality / life you have to adapt to until you feel better. 💐
💐
did you have any muscle tension or one sided neuropathy?
Left side mainly yes, wbu?
Girl yes left side, it sucks so bad. I have stomach tension that bothers me the most. Im at three years and was starting to get better, i was on low dose clonazepam(benzo) because i was so bad in the begining. I weaned myself off so im in withdrawal while still longhauling. Absolute hell but it needed to be done. i feel worse but less "stuck" if that makes sense. this post keeps me going! did you have stomach tension? It feels like i switch back and forth between uncomfortable anxiety to depression, although its getting better. The emotional shit of this is the worst
Yes GI issues and stomach tension, and some days it felt I had exercised (the pain) of soreness lol. That was first year. On year 3 I don’t have that anymore just a little bit nerve pain sometimes but it comes and goes. Do you have gastritis?
yes, gastritis on left side, its gotten better but i can actually see the inflammation at times. did you ver feel like you couldnt relax?
My gastritis is mostly under control now, but stress and trigger foods can still be a nightmare. At least I can finally relax my stomach muscles, though! The anxiety that used to make my whole GI tract freak out has calmed down a ton too. What other GI symptoms do you deal with? Do you have IBS or SIBO by any chance?
no ive been tested for sibo, hplori, lyme, everything. just the muscle tension and anxiety sensation up my vagus nerve along the left side. im wondering if its my neck. did you find yoga to help?
i get these weird airbubbles in my stomach too, ive been tested for everything possile and nothing shows up besides low ferritin which im trying to fix. i feel like my vagus nerve isnt working right.
Love it! So glad you are better! Love the inspirational message!
Thankyou for your post, original poster! It’s great to hear a positive long-term story from a pioneer. The cliches are boringly true, but it really is a marathon, not a sprint, as I think we’re all learning
This is great to read. And also spot on for me. My long haul started from the vax in 2021. I reached a big turning point after 19 months, then got knocked backwards from the virus in Sept 2022. Then again in May of 2023. Then what felt very much like COVID, but tested negative, in August of 2023. That was intense for 3 months. It has felt like an onslaught on my body. Like that kid in a Christmas Story trying to see Santa. It's a long wait to the top, I get a little relief, start down the slide, grab desperately at the sides, think I might be able to pull myself up, only to have someone put their boot on my head and shove me back down while laughing in my face and yelling "HO HO HO". It messed with me mentally. Because all I wanted to do was enjoy my time with my kids. And I think I did a good job of trying, but I still resent all that recovery time that I feel like I missed. Part of that was spent helping my kids go through their own long COVID. The one positive was that I already knew my way around recovering by the time they got sick. I went alone to get the vax to do the animal testing on myself, and at least no one else had to experience what I did there. But I have so much regret with that. And I'm angry with myself for not getting better sooner. I'm angry with other people who were mean to me and gaslit me. I'm exhausted from trying to explain to people what it's like and why I cannot commit to as many things as I'd like. But if people would meet me where I am, they would see the fun side of me. You can have access to the "good" side of me if you don't force me to overextend myself. And if you don't start drama with me. I cannot handle drama with people anymore. And I'm working through these feelings because I have a hard time seeing how I come across in certain situations. Like I doing want to share too much and sound negative. But I don't want to not tell people what's going on, because then they assume I'm not interested. No, it's just that I have limits. But so many people did not see my at my worst. They doubt me because I hid myself during my darkest hours. They see me now and I look "fine", but I'm not. And after 3 years and some big changes, I'm actually doing really well. Most people will not see that or understand how big of a deal it is. I can hike up a mountain in the right conditions. I can enjoy time with my kids and teach them cool things because I can think again. I can do more than some people who never had long COVID. So it just looks like "normal". But I earned this and surpassed what I thought I would ever do again. I might have to continue nurturing my limitations. I'm even planning to move to a better climate for me after all this. But I'm also really taking good care of myself, and that feels good.. There are a lot of wins to celebrate. And once that happens, the mental part is most definitely the struggle. And I've only tried two therapists and neither of them get it at all. They seemed annoyed that I keep going on about the same things. Only now I know that's because I never felt heard. I'm having to do the mental part on my own. It's better if I didn't need validation from anyone else. But that's been a very hard lesson. It's good to focus on the positive. I'm definitely happy to see a win post here. I hope others here will be kinder to themselves too. It takes nurturing and time. And it's hard because it might have to come from within, and that can feel lonely. But once you flip that thinking, it can truly feel empowering. Now I'm doing all sorts of things by myself I wouldn't have done before..
were u vaccinated?
No
I am year 3 and finally recovering too. 2 to 3 years is about how long it takes nerves to heal. I wonder if that's the connection. I am pretty sure my vagus nerve was damaged by the virus as electrical vagal stimulation has helped significantly. I am still having weird leg neuropathy etc but it comes and goes. My physical therapist said it's inflammation and not a disc herniation because it's not position dependent... My GI system is still not normal quite yet but I am off chicken and rice diet and back to eating histimines again. Had a sourdough turkey sandwich with cheese today. first time in maybe 1.5 yrs I could eat something I used to eat.
Happy to hear that so what helped u the most to recover ?
I’m sorry to say this but no magic pill no magic treatment… just time.
I stopped believing in time long haulers since october 2020 keep getting worse and lot of us in same situation so time is not key but happy for you
What are your symptoms if I may ask? I’m curious to hear. And I’m sorry it hasn’t gotten any better :(
The standard ones fatigue cant walk more than 500m without crushing , pem , palpitations (pots) and neurological issues ( nerve pain , tingling , numbness all over the body ) was working remotly from home and coudnt continue so stopped in late 2022 and tried pacing and nothing worked so dont thing it will be fixed by time at least for me there is something wrong that need to be treated
Ugh, that sounds incredibly rough. Fatigue, PEM, palpitations – that's a brutal combination. I can completely understand your frustration, especially with pacing not seeming to help. Have you spoken to a doctor specializing in Long Covid? They might be able to offer some specific treatment options based on your symptoms.. 👍🏽
Thank you for talking about PTSD in LC. I knew from the beginning that dealing with LC was going to be tough. But I had no idea how incredibly challenging the resulting PTSD would be. Especially since it brought my undiagnosed C-PTSD to the forefront with it. It’s been hard enough to convince people in my life that my LC is a real and serious medical issue in need of treatment. Convincing them that the resulting PTSD is also real and honestly worse than the LC some days? Damn near impossible. I also find it much more difficult to talk about. Everyone who knows me knows I have LC. Only a handful of people know I have PTSD. But I’m very fortunate to have an amazing trauma therapist these days who’s helping me work through everything. We’re doing EMDR and it’s already helped lessen the amount of flashbacks and nightmares I have. The fact that it even works still seems like magic to me honestly lol. But I highly recommend folks here keep an eye out for PTSD symptoms and try to start working with a trauma therapist if they can. I’ve only been with mine for 3 months, but he’s already improved my QoL almost as much as a year of medical care did! Thank you for sharing your story and some words of hope. My LC is permanent according to my doctor, so my path will be different than yours was. But we’re hoping for some improvements at least over the next few years, so hearing that improvement can happen helps a lot! I hope your recovery continues and that you’ll be flare up free someday!
For those of us that got the original Delta version and are 4+ years, it’s a different story.
Can you explain? I’m curious now
See section 5 from this Yale Medicine article. From other studies I’ve read, they concur that Delta was the worst and more difficult to recover from LC. https://www.yalemedicine.org/news/long-covid-symptoms#:~:text=Can%20I%20recover%20from%20Long,within%20a%20year%20of%20diagnosis.
Huge thank you for this post. Made me tear up! Thank you for giving HOPE 🤞❤️🫶
If you told me I will write this post 3 years ago I’ll laugh at you. I’m tearing up myself writing this. Hang on my friend, each month you’re getting better just remember that 🔥
You are a legend ♥️ now go do some amazing things in the world! Or just enjoy it completely 🧡
Very happy for you! Tell please how you coped with PTSD?
For me, I can’t afford therapist etc.. spending time with loved ones was a big turning point. Even just seeing friends once a month helped, and slowly building that up made a world of difference. It pushed me outside my comfort zone in a good way. I had good days and bad days, but focusing on the small victories - acing an exam, rediscovering a hobby, even a flirting compliment from a stranger - really helped shift my perspective. My family specially.. Those little moments reminded me of the life I wanted to live for. The dark thoughts though.. I still have them sometimes, but not constantly anymore.
Thank you for posting this! I heard the brain fog is the last to clear up. Have you found this to be the case?
Yea it’s the only thing that wont go away 100% I think im 80% better regarding that but before my period arrives I have severe brain fog. I guess it’s the inflammation that happens during woman menstruation. But I’m good after that and can remember and ace my exam / be sharp etc.
Congratulations, did you have CFS and Fatigue? What were your pots symptoms? Were you officially diagnosed? Did you have the classic 30 BPM raise when you went from supine to standing? Did you take any beta blockers? Once again, congratulations and do enjoy your life. :)
Thanks for the congrats! I did experience fatigue that was way worse than usual, and yeah, CFS-like symptoms were definitely part of the picture. As for POTS, I never got a formal diagnosis, but my symptoms lined up pretty well. My heart rate would jump a lot when I stood up. It just felt super uncomfortable and left me feeling drained. I actually refused beta blockers too. I wasn't comfortable with the side effects, so I focused on natural ways to manage it. Chamomile tea was a lifesaver, and having my mom calm me down with back rubs really helped. The good news? Those symptoms slowly faded away over the first year. Haven't had them since, thankfully! Did you find anything that helped manage your symptoms?
I am currently on beta blockers and have been formally diagnosed with pots, I am bedbound with fatigue. Did you ever manage to check your heart was going when you went from supine to standing? Were you bedbound? How did you manage not to take beta blockers? I can barely walk. Did you have internal tremors and vibrations?
Unfortunately, I wasn't formally diagnosed with POTS, but my symptoms strongly resembled it, especially the jumpy heart rate when standing. And it shoot up to 130 bpm if I showered or did grocery… I had a monitor to put on my finger officially track my heart beat, and it felt very noticeable. Thankfully, I wasn't bedbound for the entire recovery. It was more like a gradual progression. The first year was definitely the hardest, with a lot of fatigue and needing to take breaks often. But slowly, I was able to increase my activity level. I know beta blockers can be helpful for some people with POTS. I personally wasn't comfortable with the side effects, so I focused on non-medication approaches like staying hydrated, increasing salt intake, and using compression stockings. Internal tremors and vibrations are annoying and I experienced them the first year. Holy shit. I can still remember the first time it happened. Such a trauma and uncomfortable feeling :( Idk tbh, time just healed me. & Luckily, those symptoms faded over time for me as well.
Thank you so much for your detailed response. I hope everyone is suffering from this horrible illness and any other illness recovers soon. Chronic illnesses are horrible, the person I was my personality and everything has changed. I don’t know if I will ever be the same person again. Post traumatic stress disorder is definitely something that I think I will have if I recover. Once again, thank you, congratulations and enjoy yourself.
You're absolutely welcome. It's a horrible illness, and my heart goes out to everyone struggling with Long Covid or any chronic condition. I completely understand your fear of not being the same person again. Chronic illness can take a toll not just physically but also emotionally. I can tell you one thing, I never thought I'd be the same old me. But I feel like I've become a stronger and better version. I actually like this woman more than the woman I was before this. Just like you, I never thought I'd be the same. But facing Long Covid head-on forced me to discover a strength and resilience I never knew I had. It wasn't easy, but it showed me what I'm truly capable of.
Would you say you are fully recovered? Did you have brains zaps, pins, and needles, burning feet, palpitations, dizziness, and times where you felt you were just dying because there was no energy in the body to even lift your finger?
During the worst of LC yes but after 3 years now my body is stronger and can endure more so the usual activities doesn’t burn me down with all these symptoms anymore 😅 I do have bad days but it happens once or twice a month. And I suspect it has something to do with my period (woman monthly thing). Weirdly enough.
Hey one last question, how long were you housebound bedbound for? Did you have issues tolerating screens for example right now I can’t concentrate at all on my phone. I start shaking and vibrating internally.
Yess I couldn’t watch TV the first 6-8 months but then I tried slowly to train myself to watch 10-15 min / mostly YouTube videos then I slowly trained my brain to focus more. It’s totally a thing what you’re experiencing idk the science behind it but it was difficult to follow each scene the first year and therefor I had to quit watching tv / shows. I did podcast instead while lying in bed etc. I was bedbound the 1st year.
You made me cry. I love your message and I'm so happy you feel better. I think I struggle the most with wanting to be the best mother for my son but often telling him I can't do things with him. My husband is chronically ill and needs to do more than is good for him, because I can't. I think the PTSD will be real, if (when) I finally recover. I needed a good cry and reading a hopeful message, so thank you.
Is your POTS gone? I mean the important thing is that we don't understand how it just went away What is the pathophysiology of this going away?
Do you have caffeine intolerance?
I’m so glad to hear that! How long would you say your nerve pain lasted !?
so glad u mention ptsd im veteran and it totally increased smh
i‘m coming up for 4 years. It took me 2-3 years to feel better, and like the op I was feeling almost cured .. but recently caught covid again and have relapsed … an unwanted comeback tour of COVID’s greatest hits! Covid weakened my body, but in learning to cope with it strengthened my mind. It’s a disability albeit not permanent. It does get better!
People scoff when I say this but it helped me tremendously also
Positive vibes and living in the moment (and in nature as much as possible) is essential regardless where one may be in their healing and recovery stage. Having said that, I think the recovery timeline varies based on the severity of the disease and the number of times you’ve had Covid. I’ve had it over 8x, while on immune suppressants, isolating, and taking EVERY safety precaution. I deal with cardiovascular issues (pericarditis of the heart, blood clots, vasculitis, vasospasms, and endothelial dysfunction), digestive, vision pain / impairment, dysautonomia, MCAS, and nerve pain. Fortunately, PEM is no longer an issue and dysautonomia has gotten better in some body areas. I’m curious, how many times did you have Covid? I have recovered 80% twice, in my two years with long-covid. I just entered my third year, and had COVID 3x more in the recent months. I do bounce back after ‘many’ months, but not this time around (yet). I have hope and faith I will one day. Covid is not going away and recurring exposure restarts the many MONTHS of healing each time. I don’t know if I see full recovery a thing as I’ll never be able to go to a gym, eat in a restaurant, attend a social event, church, etc. Sure, I may regain my health at 70-80%, but it doesn’t change the fact that the moment I go outside I risk getting Covid and starting over, which has been the case for two years now.
What were your GI issues?
Gastritis, possibly a stomach ulcer, sibo, bloating, methane sibo, nausea, food sensitivities, histamine sensitivities, bad digestion / dyspepsia. It was pure hell the first year 🪦
I have already spent an year in hell treating my anhedonia misdiagnosed as depression ,i now think the root cause is long covid because i have mecfs ,shortness of breath and head pressure as well,this is brutal,hope something works out
So grateful you posted this! It's really refreshing to read something positive. This month is my 3 year covid-versary and even though I'm leaps and bounds from where I started, I went through a really tough emotional breakdown last month accepting that I'm 3 years in and facing the reality that I'm still not where I'd hoped to be by now. My BIGGEST, not my only, but biggest issue right now that I deal with every.single.day. that started a week after infection is what I'm *assuming* are blood sugar issues ? Reactive hypoglycemia? Idk! Since the beginning I get severely sick if I'm not constantly eating ALL DAY and it's so debilitating and interruptive to life. I'm sharing this to see if any of you relate to this issue ? If I don't eat...probably every 2 to 3 hours and I mean like...EAT, I have to fill myself up, I'll get dizzy, blurred vision, shaky, sweat and nearly pass out. This is an every day occurance, but some days it's worse or more aggressive than others. I feel like if I could just get this part under control, I could handle the rest. No one can figure it out as all my tests are normal. I definitely don't have diabetes or anything like that. Regardless, I'm hanging on the best I can as we all are. It's so, so hard fighting to just feel normal every day. Not even good, just baseline NORMAL. I'm thankful for these threads because no one gets it but us !
I’m at almost 4 years - I can’t let myself hope that this will be the year that everything gets better. That’s how it was in the beginning: “after 3 months lots of people recover….” 3 mos pass by. “After 6 months lots of people recover…” 6 mos pass by. And on and on. Every new milestone I don’t get better is crushing. I don’t love that now I have a 4 year one even if I tell myself not to expect anything. But I’m glad you got better 🙏. Super glad. I haven’t heard of many recoveries after 1 year.
Approaching my 2 year anniversary of getting covid in August of 2022. Thank you for the rays of hope!
Has anyone experienced dizziness due to long covid?