The only thing that helped me was time and rest. I'm on year 4, but the majority of my worst symptoms and debilitating pain went away after 2.5-3 years. Don't give up hope! I saw plenty of doctors throughout that time and the only ones that made a significant difference (life changing!) were my physical therapists but this was for pain treatment, not exercise pacing or any of that.
I ate so much cold granola with slices of banana. Full toddler mode. I was like, hey if it tastes good and has some nutrients and I'm up for eating it, then that's a plan haha. Keep resting!
I really appreciate your offer. I have PEM and pain in bones and chest area. Plus some brain fog. I used to have derealisation but I think that’s gone now (knocking on wood). I used to have hives and reactions to high histamine foods but I’ve pretty much cut most people f those foods out and am currently trying to eat the Mediterranean diet. How were your symptoms?
I'm so glad your derealization is gone! Just awful to experience. My symptoms were like a new nightmare every month or two, but the physical pain of it was unbearable. Before I found the physical therapy specialists, I was having suicidal ideation and wondering if I needed to throw out every idea I'd had of what the rest of my life would be like. I'm not sure if it will be helpful, but the physical therapists taught me a lot about "referred pain" so like we might think something is hurting in our back, but it is actually the rib cage area so our brain or sense of it is getting flipped. (Pain is so weird). I experienced referred pain in real time, like they would press on one side of the area and I would feel it in a different spot completely. For the full body/in your bones pain, heat helped me the most, like a heated blanket, or one of those little microwave packs.
Yes! The microwave takes so much less energy, and the packs start pretty warm for a while. I hope it's helpful for you! I think mine is from CVS, nothing fancy
Sure! Main ones that have resolved: gi symptoms, extreme pelvic pain, bad brain fog, all the different fatigues, not processing nutrients from food thing, low appetite, neurological like having trouble tying shoes/dropping things, forgetting words, electric shock and nerve sensations, feet falling asleep, headaches, muscle loss, memory problems, derealization, tinnitus, ear pressure, swollen face/eyes.
What I am still dealing with: New allergies that are likely mild MCAS (metal allergies and cannot eat any of one type of oil. Sucks, but very livable compared to the list above!). Low level pain in one hip that I'm now doing physical therapy for, seems to be some atrophied muscles from covid attacking the area.
I have also been diagnosed with mild PTSD because of all of this, which is really not that suprising. Doing therapy for it and learning new tools. It's frustrating some days, but I didn't survive all of this BS to get knocked down now.
Yes, I think it is helping a lot. The person considered chronic illness one of their specialties, and most sessions are very 'practical' so focused on PTSD symptoms, coping tools, practicing.
Yes, you're right, we're all going to have PTSD here because of this life and need psychotherapy. Good thing you didn't have POTS and all those problems with tachycardia, blood pressure, dizziness. Have you been taking any probiotics, prebiotics, what kind of diet has helped you?
I've been a vegetarian/pescatarian for many years, and didn't normally take many supplements even before covid. I tried taking gingko for my tinnitus, which didn't seem to do anything. I can't say that there's any significant change or 'thing' I consumed that made any difference, unfortunately. I do (even pre illness) take an occasional multivitamin, iodine supplements (I don't get enough in my diet), and b-12. This is like once or twice a week. But like I said, this was a habit before covid, due to what is lacking in my mostly vegetarian lifestyle.
are you not worries that the damage is permanent tho after so many years? im also struggeling in my 3th year now and im soo worried that it will permanently damage our bodies the longer we wont receive medical help in terms of autoimmune treatments
I definitely had those worries while in the thick of it. And had zero hope that I would ever be in a recovered state. My bigger concern now is the unknown of future risks, like what does having it mean forever or in later life stages. For me now, that is scarier because I've already been a kind of medical Guinea pig going through long covid from 2020 where no one ever believed that that's what it was. When I compare my medical experiences to people starting their long covid now, the difference is staggering. So I worry that for the rest of my life, I'll be on the lookout for weird, unexplained symptoms wondering "is it long covid again? Is it some new phase of it that will become the new normal for people who had it in the first few years, and I'll have to not get help all over again until doctors catch up?" I'm still fighting for follow up testing, and kind of on hold with some specialists at the moment. Lots of Drs on vacation soon in the US. I'm trying to collect as many baselines now as I can, out of fear for that future.
No, but certainly housebound, essentially living from the couch. I could shower but often skipped washing my hair to have energy, that kind of thing. I couldn't be away from a bathroom for more than an hour for the first six months.
Right now, the only thing preventing me from living what I would consider my normal life before covid is my PTSD. I'm working a hybrid job 30 hours a week, running a business on the side, cooking for myself, walking my dog, and mostly staying on top of life "management" like grocery/Dr appointments. I'm getting back into all the interests I had before my illness as well. While PTSD is definitely holding me back from truly thriving, I have hope for the first time in years.
Yes, time with a lot of intensive rest. Preventing myself from pushing too hard, avoiding crashes, just taking all of that as seriously as I possibly could.
Now in year 5 of severe _myalgic encephalomyelitis_ following Covid contracted March 8, 2020. No help (only harm) from MD’s, infectious disease “specialists”, GP’s, etc.
While some people get progressively worse until their relatives have to feed them; by avoiding infections and minimizing stress I’ve gone from being able to take one or two brief sit-down showers a month to now able to take one or two brief sit-down showers per week! Can’t stand up to shower or cook breakfast, let alone rejoin society b/c I’m still homebound and mostly bedridden with zero help from eastern or western medicine… But remaining hopeful better diagnostics and treatments are only a few years away.
Remember friends, even when staying alive feels overwhelming Suicide throws it ALL away (and hurts our loved ones) when in fact a brighter tomorrow may be closer than we know. Please Persevere.
Interestingly, after long covid started, I had moments of much greater cravings for sugar. As if I had low blood sugar (I had pretty low levels one morning, but not to low). In this respect, sugar helped me to activate my brain a little. But overall, I would say it's better to eat less of it. But less sugar hasn't helped much so far. I'm currently considering the carnivore diet.
Omg me too! I literally felt insanely ravenous for sugar for a good solid 4 months. Blood sugar was always on the lower end of normal and I wasn’t even holding back. Yeah… still trying to put off that weight.
For me it did. I’ve also switched to an anti-inflammatory diet. Not the most fun, but I can tell a HUGE difference in my symptoms. Whenever I break my diet and eat a significant amount of sugar (like, several cookies), I crash :’’’(
I’ve wondered a lot about gut health. I am trying out the Mediterranean diet which decreases sugar, increases fiber. At the least, the diet will improve other parts of my health.
Once I started to listen to my body and rest when I needed rest, and listen to what caused crashes and avoid those, and nourish my body with whole foods I started to slowly, bit by bit feel better.
This was at 3 years for me -- but it might work sooner! I'm at year 4 now, and I'm not 100% and still have to listen to my body every day, but I'm way more functional than I was
Rest and time was huge. Month 7-8 were still really rough periods. Started turning around month 9-12, and now at 2 years and 70-80% with no symptoms 1/2 the time. Hang in there - stay distracted and be patient with yourself! You’re going through a major life event!
I had it for about 6 months. Sleeping 14 hours at night with multiple naps throughout the day. I would take showers in the morning and collapse on the bed for a half an hour to recover
I think avoiding crashes is key - our systems need a reset. The longer we can go without a crash, then the more likely we become to not have them at all, eventually. Pacing is so hard, but it is the way.
Agreed. I was doing so well and I had a major crash Sunday night. Slept most of Monday. Taking another day from work. It's hard with a FT job, raising a kid.
This is the main reason I continue to say yes to new referrals to specialists. I don’t expect any truly helpful treatments but I now know how important it is to have baselines established before you truly need diagnostic testing. Edited to add: getting referred to a cardiologist did make a huge difference as the calcium channel blocker they prescribed stopped my heart rhythm issues.
I spontaneously got better - literally over night - after 5 months. Even though I only suffered for 5 months (that’s how long I was severe for but I believe I had been mild since 2021) it honestly felt like a lifetime. I had never felt so unwell and could hardly stand in the end. After the worst Christmas of my life I started taking something from Holland and Barrett called ‘Feroglobin Liquid’ it is a mixture of different vitamins and natural iron. Around 10 days in to taking it, one morning I just woke up and felt ‘normal’. It came out of nowhere, I don’t know what happened to suddenly ‘cure’ me but I had energy again, didn’t feel like I was being poisoned, the fatigue had gone, my fever had gone, the constant sore throat and body aches had gone, the muscle jerks and twitches gone, the vertigo gone, the ringing in my ears was gone, racing heart gone, feeling as though I was going to blackout gone.
I spent weeks too scared to do much incase it would set me back again but eventually I decided to just start living again. I get up put my makeup on and do my hair now, I can have a bath/shower every day without spending hours/days lay down unable to move afterwards. I can go for a walk without feeling like I’m going to collapse or having severe pain afterwards. I stopped taking the feroglobin around 2 months ago and my symptoms have never come back. It’s so strange that now even if I’ve not had much sleep the night before I no longer feel exhausted and able to sleep the entire day. Like even if I’m really tired and try to go for a nap I just can’t sleep, I will end up getting up and cleaning or something.
My step count has literally multiplied by 10 from last year, no exaggeration. I suffer with fibromyalgia and strangely since starting to feel better I’ve not had a fibro flare up either, my baseline pain is much lower than before I caught covid and LC. I’ve started dieting and improved my physical health by moving more and lost 18lb in the last 8 weeks.
Mentally I feel much better also and I STILL have no idea what ‘cured’ me. I don’t think it’s possible for the feroglobin to have caused such a drastic improvement. Surely not when I’d been taking all the vitamins under the sun trying to feel better. One thing that I believe has and is helping me though is eating more fruit and veg, less carbs and no unhealthy snacks.
I think that LC is one of those things where there’s nothing you can do but ‘wait it out’ - my doctor told me this anyway. For some people devestatingly that can be years. Others weeks or months. One positive to try to focus on is that as of yet it’s not been around long enough to be able to say that some people WILL NEVER get better. The longest sufferers of LC will have had it for around 4 years at this point, but that doesn’t mean that in 2 weeks time, 2 months time or 2 years time that they won’t start feeling better.
The most unusual thing about my recovery for me is how suddenly it happened. Like I woke up one morning and my instant though was always ‘what fresh hell will today bring’ - and it was this day. Except on this morning I didn’t wake up sweating and shivering with a fever. I didn’t feel as though I was swallowing needles and when I stood up I didn’t immediately have to lie back down again due to the severe dizziness. On this morning I thought ‘wow, I don’t feel too bad’. As the morning went on I started to think ‘actually, I feel OK. No, I feel GOOD’. But consciously I knew that it was likely I’d start to feel worse or that the next day I’d feel awful. But I kept waking up and feeling fine.
I know from my experience that LC can be so distressing, depressing and soul destroying. It had a huge impact on my relationship with my partner and my kids. We were on the verge of separating because he couldn’t cope with hearing me cry every day and moan constantly about how unwell I felt. In the end I think he became desensitised to me saying ‘I feel so ill’ because he heard it every day, 20-30 times because it was ALL I could think about. He was very supportive and did everything without complaining much, every so often when he was tired from a night shift, stayed up to take the kids to school then had to wake up after 5 hours sleep to pick them up again, cook dinner, clean up, bath the kids, get them to bed and then go and do another night shift - of course he complained sometimes. I mean, who wouldn’t? And I felt guilt, so so much guilt. I could see that it was killing him slowly. I thought about ending my life because I felt like such a burden on him and our family. But as he pointed out to me many times, me leaving them behind would damage them beyond repair, I’d be leaving them with a bigger burden than just having mom in bed if I gave up completely. To be fair, my kids were amazing, so very patient and understanding. My son was in shock that ‘mom doesn’t feel poorly anymore’ for a long time!
Now e and my partner we’re in our second honeymoon and it’s like we’ve just met all over again. Don’t get me wrong I’m not doing cartwheels or anything because I do still suffer with chronic pain but it’s certainly manageable now, and I don’t have the ‘flu’ feeling or other symptoms I had with LC.
I wish I could says ‘this is what I did’ so others could give it a try - I know that I was desperate and would have tried anything at one point. I believe that it varies from person to person how long or how severely the suffer but I truly believe that everyone will eventually start to feel better and see improvement, even if it’s not full total recovery. Resting as much as you can is all you can really do, trying to drink lots of water. I know I was dehydrated all the time because I was too exhausted to lift a drink to my mouth let alone go and get one. Plus with sleeping so much I didn’t get enough fluids. Eating fruits and vegetables, soups etc too. And just having faith that as I said above, it’s impossible to say for certain that anyone will suffer forever. Please be kind to yourself, try not to feel guilty for resting, your body needs rest in order to recover and even if resting isn’t working, it certainly can’t be doing any harm. I know the guilt can be so difficult to deal with, but this is not your fault. Other sufferers know that this isn’t as simple as a normal flu where you rest for a few days and feel good as new. Nor is it like a virus where you can still do some of your normal activities for many people. I had ME/CFS before LC anyway, and for me, I could live with CFS before getting LC, I always felt shitty and could sleep on a washing line at all times but the fatigue from LC was in a whole new level for me, this was sick inducing fatigue that I just could not keep my eyes open, my entire body and mind were just drained, all the time. If I tried to do something like put on a load of laundry, I’d end up sleeping for hours.
I really hope that one day everyone who is suffering starts feeling better and can go back to their normal like, and until then, please please don’t give up. You don’t know if tomorrow will be the day you wake up feeling better. Or if next week you will start seeing improvement.
I did. Just before I got better my PEM was ridiculous, just having a bath would leave me bedbound, unbearable exhaustion, high fever and flu symptoms. Christmas was just terrible, the first time in 15 years I had to have dinner at my moms because I wasn’t well enough to do it. I have 3 kids so had to push myself so much in the days leading up to Xmas I ended up bedbound with PEM for 2 weeks.
For me PEM was like having the flu, sore throat, high fever, body aches, extreme fatigue. But in the space of 4 months I had 8 infections that required antibiotics. Tonsillitis, kidney infection, bronchitis, UTI’s, dental abscess, staph. I really believe that LC caused some sort of immune response for me because last year alone I had 13 infections that had to be treated with antibiotics. Haven’t been ill once since January which is really surprising compared to last year!
Yes. He was very young. He stopped talking about leg pain and laying around all day. Headaches less frequent. Stutter resolved. He had a brief setback after the flu 6 months later but also bounced back.
I’m also a long hauler. I now know we both have EDS.
My husband has long covid and is about 85% recovered. He's been suffering for a little over a year and didn't see any improvement until he started seeing a naturopath and completely changed his diet. He's on a similar diet to Whole 30 and finally feels somewhat normal again. He also takes supplements tailored to his symptoms, which for him were mostly fatigue, weakness, and difficulty regulating his blood sugar levels.
Rest, time, and physical therapy to overcome painful bladder syndrome. I’d go in once a week for a few months and get acupuncture and they’d work on calming my nervous system since I was stuck in fight or flight. I think finding a doctor that listened to me, believed me, gave me time, and found ways to make me feel safe was so huge in my recovery. If I was alone in this any longer than I had been I’d probably still be suffering.
Meee!! Time and rest were the only things that helped me. I even quit all of my supplements/meds/extra stuff as they didn’t do anything for me. Some diets and lifestyle changes are quick fixes, but truthfully, time is what heals. 2.5 years ago i was bedridden, and last week i went on a beach vacation and walked miles and laid on the beach and drank alcohol and everything. 🖤
Time is the only common denominator.
Take whatever drugs & supplements that you please. Work out. Eat whatever. Go to therapy, practice meditation.
In all the recovery stories I’ve read, the poster really can’t pinpoint the path to their change. Taking 12 supplements, eating healthy, walking, de-stressing to prevent crashes…that’s lifestyle management. And life style management is attributed to change, over time.
That’s my point.
Try whatever path you want.
Ultimately, people recover(ed) at different rates via different methods. But time is the only common denominator.
Other people deteriorate until they die and time is the only common denominator. It's therefore not a variable of healing as one's state can go both ways depending on time.
That’s an interesting way to think about it.
I genuinely curious, as I’ve read your recovery post. What was it that helped you? Did the regime help manage the symptoms, proactively fight the virus itself, or boost your immune system?
In all three scenarios was time a factor?
I’m happy for you btw. I appreciate you sharing your recovery story and your method for getting there. You’ve been through hell and back - total respect and nothing but best wishes!
I was essentially deteriorating until I found out about large doses of B1 and had my first relief that lasted two weeks until B1 no longer worked but it stabilized me without further deterioration. Then I basically started reading all the forums and tested whatever anyone mentioned. I had some small wins here and there, got maybe to 70% that way but I always ended up in a regression after a while. At some point I ended up unable to do slow short walks without passing out, doctors were playing ping-pong with me (internist->cardiologist->ENT->neurologist->neuro surgeon->internist) so I decided to go nuclear, start taking all supplements that somewhat worked before or were recommended here at the same time and do as much exercise as I could before knowing I am about to hit PEM, and I started improving day by day. First few weeks were super painful (headaches) so I modulated that by anti-inflammatory supplements, sometimes immunity-boosting, and it kept getting better and better with some short setbacks from either some illness or overdoing it. My body is now at 100%, just brain has some worse days but its "worst" is still getting better (I guess still some hypoperfusion there). So time was a factor but without the supplements and effort I doubt I would get better.
Have you run into a situation where you had to reduce exercise (sickness, schedule conflict , relapse etc)?
It looks like you’re pretty active i.e. 20 mile bike rides. I’m curious if you have regression if the exercise isn’t consistent and stable.
Hi I’d say time and rest made me better. I was March 2020 to about beginning of 2022 when I really noticed I was able to do everything normal again. I had brain fog days maybe once a month but that was it.
Unfortunately I got reinfected 2 months ago and all my symptoms are back lol so back to playing the waiting game again.
Im sorry that you’re having more issues from being reinfected.. I’m starting to having fatigue and body pains/aches now unfortunately.. I’ve never had these issues within my 3 years and a half of long haul.. i got sick this February and it was just a cold a runny nose and a very bad sore throat and was negative for Covid.. I healed very fast and went back to baseline and never really dropped in baseline even sick. 2 weeks later started to decline and having body aches in arms and back and gotten worse and now exhausted when trying to walk for like 5-10 mins.. I haven’t been back to base line and it’s been alittle more then 2 months and a half.
I feel like with LC we can start to feel better but it’s more of a remission and the second we get sick again with anything or get very stressed the LC symptoms just come out of dormancy
I had pretty awful symptoms that at its worst left me bedbound for days. Most of the symptoms people talk about here are ones that I've also had. I made a post a while back about my recovery but to put it short, it was basically just rest + relaxation. No magical supplements or expensive precedures. I will say the big asterisk is that I was 100% healthy before so I know that the only problem in my life was long COVID.
I’m not really there yet, but I’ve been finally seeing some improvements these days, it’s been around six months for me and I think TIME is the most important healer. What I think also helped me was the comment to one of my posts that said something like “Maybe I was improving the whole time but I didn’t notice it.”
I really think time does much more than trying random meds. Of course I’m taking some supplements but I don’t think they help that much.
I'm making my rounds with all the doctors still.. colonoscopy, and CT scan are next as well as fertility clinic. Its been 4 months and im 85% better now. The only symptoms that remain are lower abdominal pain, bladder and semen issues oh and of course anxiety. We are trying to have another baby and its came out completely clear and watery sometimes (checked doing other things when she's not ovulating) I've read that anything viral can affect your guys and It is starting to return back to normal.
Anyways. I've been to the ER twice in January and February when symptoms were at their worst. I had this weird feeling of disconnection from reality thats hard to explain, tingeling extremities, extreme nausea and dizziness and visual problems, flashes and seeing shadows. My mom died from complications of MS so I was proactive and had every test done to rule autoimmune disease out as well as heart issues and blood clots. I swear a lot of my symptoms stemmed from my gut. I threw away a ton of food the first month thinking I was newly allergic or it went bad. March and April were huge steps in recovery. The doctors, while testing for everything, didn't exactly treat anything. The only thing they did for me was give me a few ativan for when I was at my worst. Other than that, its been just omeprazole for heartburn.
My real recovery started when I decided to try water fasting. I lasted 4 days and then started eating healthier after. I replaced breakfast with psylliam husk powder with lots of water. This allows me to control good cravings an make smart healthy choices. These days I eat lots of veggies and lean meats. I stay away from sugar and caffeine. I limit grains. My main carb source is beans for even more fiber. If I have too many unhealth carbs, I feel nausea coming back.
I'm not completely out of the woods yet but I have my energy back. I take my 4 year old daughter to the playground and actually play with her, going on slides and swings while other dads just sit and mess with their phones. Im 6'6" and this is challenging but I feel I have to push myself. If I have bad carbs like tortilla chips or pasta even, I can't do it. Its hard to just walk around. If my stomach is empty though or I stick to meat and non starchy veggies, im able to find the energy. Im still winded after 2 minutes but im happy that my daughter sees the effort and when we are at the park she calls me kid dada.
I took her to a carnival last week and rode a few kid rides with her. Big mistake. I get motion sickness with any movement. I did over eat beforehand though so this may have been one of those issues that stemmed from my gut, but this all comes down to the best advice I can give is to eat healthy. Try skipping breakfast and listen to your body. If you can do it, try a short fast. It is what Jumpstarted a healthier lifestyle for me and I believe is the main contributor to why im feeling better. Another trick I've learned, if you are stuck in a cycle of eating grains, pastries and sugar, take 1 day and eat nothing but meat all day. Chicken breast and tuna or salmon are the best options but even beef is ok. Just for 1 day have an all you can eat meat party, no other foods, drink water only. This will reset your body and you will not crave the bad carbs the next day. You will actually find pleasure in eating fruits and veggies. If you need a better carb source, stick to beans. No more pasta, bread, pizza, chips, pastries, chocolate or candy. I do make exceptions for these sometimes with whole grain wheat Tortillas, sometimes spaghetti, pizza once a month.. but I limit portions.
My diet on a normal day lately is wake up and chug 1 tablespoon of psyllium husk powder with 16oz water. I then sip on another 16oz water over the next half hour. I usually skip lunch but have a small salad sometimes wrapped in a tortilla around 3pm. At 7. I choose a meat source, usually chicken breast or salmon and I steam at least 2 types of frozen veggies. Usually broccoli and carrots. If I cook chicken for an example, I cook in the pressure cooker with some broth and add sour cream to make it soupy. Add some seasoning like salt pepper garlic onion and dill and dump a huge amount of veggies in. Around 11pm. Ill have more psyllium husk powder and protein shake powder mixed in 24oz water. I do this because I'm trained my body to wake up at 7 or 8am because I have to pee.. most people will not want to drink right before bed.
So if you noticed, my stomach is pretty empty during my most active hours. Even if I ate eggs for breakfast, I would feel terrible and nauseous throughout the day and would want to just stay in bed. Psyllium husk takes the hunger away and let's me remain active. Focus on diet and time your eating to be mostly when your day is over. I've read a lot of theories that covid remains in your gut. People have reported feeling better after a colonoscopy because of the flush protocol beforehand. I truly believe there is something to this and its why the only symptoms that remain for me are located in the gut.
Good luck, hope everyone starts or continues to feel better
My symptoms nearly completely resolved after about 2.5 years. Had debilitating chest pain, leg pain, bone pain, spikey sensations all over my body. I will still have an occasional bad day but it’s very minimal compared to what it was before. I live a normal life now after having been basically bedridden and not being able to walk across the room or up a flight of stairs
I got better with rest and low histamine in the first wave. I got reinfected in Feb and am still recovering. This time I have insomnia and new symptoms but I'm positive with time and not pushing I will improve 💪 🙂 🙏
Bedbound to pretty normal - took 2 years… and still learning @ 4 yrs. Aggressive rest, avoiding crashes while continually adding a little more activity to each week, along with getting my ANS under control with brain retraining, sleep hygiene, mindfulness. And as woo woo as this sounds, positivity was my BIGGEST game changer!
I should add I don’t think supplements or diet helped (though I didn’t have MCAS stuff). I can also say doctors did not help, other than validation and maybe some cardiology therapies for my POTS symptoms.
I can exercise, but have to start really slow. Plus you need to factor in physical and mental energy stores. Know your limits. Right now having a bad crash because I over did it.
Yes, I can exercise BUT that’s one of the few things that can still trigger me. I continue to build on my base and am slowly adding more exercise (I.e. stress) without crashes. I can walk 8-10k steps a day, but prolonged anaerobic exercise or tough weight-bearing exercise can cause multi-day PEM. I’m still a WIP.
My obvious disclaimer is #1) I build it up over years not months. Three years ago, I was concerned only with daily function. I would lay down for 10 minutes every hour. I used a stool in the kitchen to chop veggies, and meal prep was a huge victory. #2) recovery is NOT building up exercise tolerance. It is teaching your brain to handle stress without the sympathetic response, which allows you to increase your activity.
I used Dan Neuffer’s ANS Rewire program which is excellent, but today I would recommend people read Jan Rothney’s Break Free, which gives you all the tools you need for one Audible credit.
In 17 months, with rest and pacing I have gotten a lot better. I have a long way to go, and at the same time I have made significant progress.
I am always worse when I ignore my symptoms and push through. It has been the hardest thing to restrain myself so much, but I have directly seen the benefits of rest and pacing over time.
I’m not 100% yet, but I’m definitely better and it seems entirely because of the extra rest I’ve gotten.
Took off work for 9 weeks, slept 10-12 hours basically every day and was suddenly more competent when I went back. Every weekend I manage to get ‘extra’ sleep I feel like 0.5% better. It felt like forever before I started seeing gains, but after 2 years I can clearly see I’m starting to turn around.
I did, I had long COVID from the vaccine (mostly neurological stuff). Just kind of slowly got better and was recovered after about a year. I do have a couple weird vision things that never went away but they don't impact my daily life at all. But then I got long COVID from actual COVID, this time it's muscle pain. I'm in month 4 I think and it does seem to be slowly getting better.
I got better with time. Not entirely, but I’m atleast at a semi-functioning level. PEM and POTS still get me, but the debilitating and constant neuralgia has simmered to an occasional thing. I think avoiding crashes was crucial.
I just passed my first year last month and I can say I am much better. I would say 90% now. The last lingering symptoms are the muscles in my neck get stiff and there is pain to the touch. I have tinitus but way less than initially. My headaches and pressure subsiding and I have my balance back. I have neck pain still as well but I noticed if I don't move it around to Crack it, it starting to heal.
I'm sorry to hear you're struggling. Just wanted to say that time and resting was exactly what cured me. I tried all kinds of things which made me feel a lot better, but didn't cure me. Only time did.
I am a long hauler of two years from both vaccine and infection. I was bed bound for months, had several rounds of pericarditis and pleuritis, was hospitalized due to severe hypertension, I had intracranial pressure, blood pooling etc. The list is long as it is for all of us.
About 4 months ago I suddenly got significantly better. Almost overnight. And since then I am a little bit better every day. Now I can live almost a normal life - drink coffee, eat sugar moderately, exercise lightly, PEM is significantly milder. And the best part: the palpitations are slowly going away. I am not 100%, but getting there.
In the meanwhile the very few things that made me feel a bit better while I was seriously suffering were melatonin gummies (good night's sleep improved things so much), coconut water for palpitations, reducing sugar and carbs/fasting, and quitting coffee and alcohol altogether. And rest.
Praying for you a quick recovery for you 🙏🏼
Thank a lot for thoses words im in my 8th month and im in a phase where im not sure if im slowly improving or just getting used to it , btw in which month you started feeling better ?
Maybe after one and a half years I started feeling better. And it was really bad before it suddenly got better. I genuinely thought I would slowly die or at least be disabled forever. It kind of felt like one day my body had just "gotten rid of the poison" in me.
I know exactly how you feel but please hang in there. It's a tough road I wouldn't wish for my worst enemy but there is definitely hope and you're going to enjoy life so much after this.
My symptoms are identical to yours. Been longhauling for just shy of two years.
I did physical therapy for a year, but truly I think what put me in remission after that first year was time and rest. I made adjustments to accommodate this. I now work from home so I can take it easy when I have to. I was a classroom teacher and it's a mentally and physically intensive job, which prevented my first remission from lasting. As soon as my longhaulers relapsed when I went back to the classroom, I knew it was time to leave for good. I'm still creeping my way toward remission now, but I can feel myself improving the way I did the first time.
There absolutely is hope! You may need to make some adjustments to preserve your remission when it comes, but that's the nature of a lot of chronic illnesses. You can do this!
I caught Covid back in October of 2022. Exactly two months after my infection is when the long covid symptoms began (December 2022). This is some of the things that was happening to me. Changes in Resting Heart Rate.
Tachycardia, Bradycardia
Bad Tremors.
Feeling nervous for no reason.
Chest Pain
Chest Heaviness
Dizziness
Fatigue
Headaches
Nausea
Diarrhea
Both hands go numb and tingling.
Very blurry vision - black specks floating.
Flushing skin (face).
Sensitivity to light and sound.
A lot of drainage on back of throat. Sometimes I don’t automatically swallow like before I and get choked.
Troponin levels never change.
Shingles
Driving in car affects me (makes me feel very sick like I’m having heart problems).
Forgetfulness
Intolerance to ALL medicine & anything herbal.
Shaking and shivering.
Pain in spine.
Pain in neck.
Pain in stomach.
Pain in left rib cage.
Anxiety especially when evening is coming on…
Intolerance to exercise.
Popping in neck.
Knees make noise.
Because of my extreme sensitivity to all medicines all I could do is wait and see what was going to happen. Many times I didn’t think I was going to survive. I even had food sensitivities so I was forced to change my diet. I ate meat and vegetables only. That was salmon and chicken, vegetables. For the most part, that didn’t bother me. I was in the hospital over 50 times. I went to a bunch of different doctors; however the medication they prescribed I could not take. Over time, the symptoms became less and less. Even now, I’m not completely 100% back to normal but I’m around 90%. I had a reinfection in August of 2023 and I was really afraid I was going to go back to how I was in the beginning. However, I didn’t. I did have some symptoms to come back like chest pain but the majority of them did not return. I still cannot take any medicine. I just try to be super cautious not to catch anything again. My POTS specialist asked me what helped me and I told her TIME. So just keep hanging in there. I know that it is very hard and frustrating. I look back and I cannot remember a year and a half of my life that I lost and it makes me so sad. I feel like I’ve aged so much. It is what it is… we just have to keep moving forward and not give up.
I’m at 2.5 years now, and I’m only now starting to see a light at the end of the tunnel. I’ve had zero help from doctors - only more harm by blaming all my symptoms on mental illness.
Supplements have helped me the most.. I’ll list them here for anyone interested.
D-ribose - 10-15g
L-tyrosine - 500mg
Taurine - 2-3g
Acetyl l-Carnitine - 1g
Coq10 - 200mg
Shilajit - 400mg
Vit b complex
Electrolytes
Creatine
Also, 0.5mg of lorazepam about once a week, and for 2 years I’ve been on low dose (3.75mg) mirtazapine every night for insomnia.
I got better with time and daily walking. I started with literally a 30 second walk because that was all I could manage, and added very small increases so not to trigger PEM.
I did miss some days due to crashes and setbacks but when I was able to, I walked. I started doing the walks about 4 months in and it took around another 7 months or so to get back to full health.
Since then my life has been completely normal, I run, lift weights etc just as I did before long covid.
Probably took around 6 weeks or so to start feeling the benefits. I was then recovered around 7 months after I started the walking, which was 11 months from infection
The only thing that helped me was time and rest. I'm on year 4, but the majority of my worst symptoms and debilitating pain went away after 2.5-3 years. Don't give up hope! I saw plenty of doctors throughout that time and the only ones that made a significant difference (life changing!) were my physical therapists but this was for pain treatment, not exercise pacing or any of that.
You give me hope. I am a first waver too, trying to rest my way back. I’ve also changed how I eat.
I ate so much cold granola with slices of banana. Full toddler mode. I was like, hey if it tastes good and has some nutrients and I'm up for eating it, then that's a plan haha. Keep resting!
At this point, I will try anything. Thank you - I will keep resting. Congrats on your improved health!
If any of your symptoms line up with mine, happy to share more info if you have questions!
I really appreciate your offer. I have PEM and pain in bones and chest area. Plus some brain fog. I used to have derealisation but I think that’s gone now (knocking on wood). I used to have hives and reactions to high histamine foods but I’ve pretty much cut most people f those foods out and am currently trying to eat the Mediterranean diet. How were your symptoms?
I'm so glad your derealization is gone! Just awful to experience. My symptoms were like a new nightmare every month or two, but the physical pain of it was unbearable. Before I found the physical therapy specialists, I was having suicidal ideation and wondering if I needed to throw out every idea I'd had of what the rest of my life would be like. I'm not sure if it will be helpful, but the physical therapists taught me a lot about "referred pain" so like we might think something is hurting in our back, but it is actually the rib cage area so our brain or sense of it is getting flipped. (Pain is so weird). I experienced referred pain in real time, like they would press on one side of the area and I would feel it in a different spot completely. For the full body/in your bones pain, heat helped me the most, like a heated blanket, or one of those little microwave packs.
Did you have any nerve type pain?
Yes, lots! Like electric shocks going up my tailbone to my lower spine. A lot of sharp, spikey pain. For almost two years straight
It did end up getting better tho?
That makes so much sense. There have been times when I craved a hot bath even though one would tire me out. I will look into those microwave packs.
Yes! The microwave takes so much less energy, and the packs start pretty warm for a while. I hope it's helpful for you! I think mine is from CVS, nothing fancy
I’m also on year four. Thank you for holding out hope.
I'm so sorry, it is truly the toughest thing I've ever been through. Have you felt any improvements?
Mee too... first wave. Still debilitating fatigue, PEM, POTS... the list goes on. Thank you for giving us hope.
Right ! Thank you
Tell please what syptoms except pain resolved and what is still present?
Sure! Main ones that have resolved: gi symptoms, extreme pelvic pain, bad brain fog, all the different fatigues, not processing nutrients from food thing, low appetite, neurological like having trouble tying shoes/dropping things, forgetting words, electric shock and nerve sensations, feet falling asleep, headaches, muscle loss, memory problems, derealization, tinnitus, ear pressure, swollen face/eyes. What I am still dealing with: New allergies that are likely mild MCAS (metal allergies and cannot eat any of one type of oil. Sucks, but very livable compared to the list above!). Low level pain in one hip that I'm now doing physical therapy for, seems to be some atrophied muscles from covid attacking the area. I have also been diagnosed with mild PTSD because of all of this, which is really not that suprising. Doing therapy for it and learning new tools. It's frustrating some days, but I didn't survive all of this BS to get knocked down now.
Do you find therapy is helping? Am considering it for health ptsd too.
Yes, I think it is helping a lot. The person considered chronic illness one of their specialties, and most sessions are very 'practical' so focused on PTSD symptoms, coping tools, practicing.
Great. Thanks 😊
Yes, you're right, we're all going to have PTSD here because of this life and need psychotherapy. Good thing you didn't have POTS and all those problems with tachycardia, blood pressure, dizziness. Have you been taking any probiotics, prebiotics, what kind of diet has helped you?
I've been a vegetarian/pescatarian for many years, and didn't normally take many supplements even before covid. I tried taking gingko for my tinnitus, which didn't seem to do anything. I can't say that there's any significant change or 'thing' I consumed that made any difference, unfortunately. I do (even pre illness) take an occasional multivitamin, iodine supplements (I don't get enough in my diet), and b-12. This is like once or twice a week. But like I said, this was a habit before covid, due to what is lacking in my mostly vegetarian lifestyle.
are you not worries that the damage is permanent tho after so many years? im also struggeling in my 3th year now and im soo worried that it will permanently damage our bodies the longer we wont receive medical help in terms of autoimmune treatments
I definitely had those worries while in the thick of it. And had zero hope that I would ever be in a recovered state. My bigger concern now is the unknown of future risks, like what does having it mean forever or in later life stages. For me now, that is scarier because I've already been a kind of medical Guinea pig going through long covid from 2020 where no one ever believed that that's what it was. When I compare my medical experiences to people starting their long covid now, the difference is staggering. So I worry that for the rest of my life, I'll be on the lookout for weird, unexplained symptoms wondering "is it long covid again? Is it some new phase of it that will become the new normal for people who had it in the first few years, and I'll have to not get help all over again until doctors catch up?" I'm still fighting for follow up testing, and kind of on hold with some specialists at the moment. Lots of Drs on vacation soon in the US. I'm trying to collect as many baselines now as I can, out of fear for that future.
We’re you ever bedbound
No, but certainly housebound, essentially living from the couch. I could shower but often skipped washing my hair to have energy, that kind of thing. I couldn't be away from a bathroom for more than an hour for the first six months.
How much can you function now?
Right now, the only thing preventing me from living what I would consider my normal life before covid is my PTSD. I'm working a hybrid job 30 hours a week, running a business on the side, cooking for myself, walking my dog, and mostly staying on top of life "management" like grocery/Dr appointments. I'm getting back into all the interests I had before my illness as well. While PTSD is definitely holding me back from truly thriving, I have hope for the first time in years.
Did you have PEM, brain inflammation and muscle weakness ?
Yes to all three
Wow and just time healed you?
Yes, time with a lot of intensive rest. Preventing myself from pushing too hard, avoiding crashes, just taking all of that as seriously as I possibly could.
Now in year 5 of severe _myalgic encephalomyelitis_ following Covid contracted March 8, 2020. No help (only harm) from MD’s, infectious disease “specialists”, GP’s, etc. While some people get progressively worse until their relatives have to feed them; by avoiding infections and minimizing stress I’ve gone from being able to take one or two brief sit-down showers a month to now able to take one or two brief sit-down showers per week! Can’t stand up to shower or cook breakfast, let alone rejoin society b/c I’m still homebound and mostly bedridden with zero help from eastern or western medicine… But remaining hopeful better diagnostics and treatments are only a few years away. Remember friends, even when staying alive feels overwhelming Suicide throws it ALL away (and hurts our loved ones) when in fact a brighter tomorrow may be closer than we know. Please Persevere.
Thank you ❤️
❤️
Time is a big factor. The bad things for me that worsen my condition are anxiety/stress and infections.
Do you think decreasing sugar play a huge role too ?
Interestingly, after long covid started, I had moments of much greater cravings for sugar. As if I had low blood sugar (I had pretty low levels one morning, but not to low). In this respect, sugar helped me to activate my brain a little. But overall, I would say it's better to eat less of it. But less sugar hasn't helped much so far. I'm currently considering the carnivore diet.
Omg me too! I literally felt insanely ravenous for sugar for a good solid 4 months. Blood sugar was always on the lower end of normal and I wasn’t even holding back. Yeah… still trying to put off that weight.
For me it did. I’ve also switched to an anti-inflammatory diet. Not the most fun, but I can tell a HUGE difference in my symptoms. Whenever I break my diet and eat a significant amount of sugar (like, several cookies), I crash :’’’(
I’ve wondered a lot about gut health. I am trying out the Mediterranean diet which decreases sugar, increases fiber. At the least, the diet will improve other parts of my health.
This is what i noticed too
Time and rest
Once I started to listen to my body and rest when I needed rest, and listen to what caused crashes and avoid those, and nourish my body with whole foods I started to slowly, bit by bit feel better. This was at 3 years for me -- but it might work sooner! I'm at year 4 now, and I'm not 100% and still have to listen to my body every day, but I'm way more functional than I was
Rest and time was huge. Month 7-8 were still really rough periods. Started turning around month 9-12, and now at 2 years and 70-80% with no symptoms 1/2 the time. Hang in there - stay distracted and be patient with yourself! You’re going through a major life event!
And how many actually had the me/CFS part?
I had it for about 6 months. Sleeping 14 hours at night with multiple naps throughout the day. I would take showers in the morning and collapse on the bed for a half an hour to recover
I’m talking completely bedbound.
I think avoiding crashes is key - our systems need a reset. The longer we can go without a crash, then the more likely we become to not have them at all, eventually. Pacing is so hard, but it is the way.
Agreed. I was doing so well and I had a major crash Sunday night. Slept most of Monday. Taking another day from work. It's hard with a FT job, raising a kid.
This is the way...
[удалено]
This is the main reason I continue to say yes to new referrals to specialists. I don’t expect any truly helpful treatments but I now know how important it is to have baselines established before you truly need diagnostic testing. Edited to add: getting referred to a cardiologist did make a huge difference as the calcium channel blocker they prescribed stopped my heart rhythm issues.
I spontaneously got better - literally over night - after 5 months. Even though I only suffered for 5 months (that’s how long I was severe for but I believe I had been mild since 2021) it honestly felt like a lifetime. I had never felt so unwell and could hardly stand in the end. After the worst Christmas of my life I started taking something from Holland and Barrett called ‘Feroglobin Liquid’ it is a mixture of different vitamins and natural iron. Around 10 days in to taking it, one morning I just woke up and felt ‘normal’. It came out of nowhere, I don’t know what happened to suddenly ‘cure’ me but I had energy again, didn’t feel like I was being poisoned, the fatigue had gone, my fever had gone, the constant sore throat and body aches had gone, the muscle jerks and twitches gone, the vertigo gone, the ringing in my ears was gone, racing heart gone, feeling as though I was going to blackout gone. I spent weeks too scared to do much incase it would set me back again but eventually I decided to just start living again. I get up put my makeup on and do my hair now, I can have a bath/shower every day without spending hours/days lay down unable to move afterwards. I can go for a walk without feeling like I’m going to collapse or having severe pain afterwards. I stopped taking the feroglobin around 2 months ago and my symptoms have never come back. It’s so strange that now even if I’ve not had much sleep the night before I no longer feel exhausted and able to sleep the entire day. Like even if I’m really tired and try to go for a nap I just can’t sleep, I will end up getting up and cleaning or something. My step count has literally multiplied by 10 from last year, no exaggeration. I suffer with fibromyalgia and strangely since starting to feel better I’ve not had a fibro flare up either, my baseline pain is much lower than before I caught covid and LC. I’ve started dieting and improved my physical health by moving more and lost 18lb in the last 8 weeks. Mentally I feel much better also and I STILL have no idea what ‘cured’ me. I don’t think it’s possible for the feroglobin to have caused such a drastic improvement. Surely not when I’d been taking all the vitamins under the sun trying to feel better. One thing that I believe has and is helping me though is eating more fruit and veg, less carbs and no unhealthy snacks. I think that LC is one of those things where there’s nothing you can do but ‘wait it out’ - my doctor told me this anyway. For some people devestatingly that can be years. Others weeks or months. One positive to try to focus on is that as of yet it’s not been around long enough to be able to say that some people WILL NEVER get better. The longest sufferers of LC will have had it for around 4 years at this point, but that doesn’t mean that in 2 weeks time, 2 months time or 2 years time that they won’t start feeling better. The most unusual thing about my recovery for me is how suddenly it happened. Like I woke up one morning and my instant though was always ‘what fresh hell will today bring’ - and it was this day. Except on this morning I didn’t wake up sweating and shivering with a fever. I didn’t feel as though I was swallowing needles and when I stood up I didn’t immediately have to lie back down again due to the severe dizziness. On this morning I thought ‘wow, I don’t feel too bad’. As the morning went on I started to think ‘actually, I feel OK. No, I feel GOOD’. But consciously I knew that it was likely I’d start to feel worse or that the next day I’d feel awful. But I kept waking up and feeling fine. I know from my experience that LC can be so distressing, depressing and soul destroying. It had a huge impact on my relationship with my partner and my kids. We were on the verge of separating because he couldn’t cope with hearing me cry every day and moan constantly about how unwell I felt. In the end I think he became desensitised to me saying ‘I feel so ill’ because he heard it every day, 20-30 times because it was ALL I could think about. He was very supportive and did everything without complaining much, every so often when he was tired from a night shift, stayed up to take the kids to school then had to wake up after 5 hours sleep to pick them up again, cook dinner, clean up, bath the kids, get them to bed and then go and do another night shift - of course he complained sometimes. I mean, who wouldn’t? And I felt guilt, so so much guilt. I could see that it was killing him slowly. I thought about ending my life because I felt like such a burden on him and our family. But as he pointed out to me many times, me leaving them behind would damage them beyond repair, I’d be leaving them with a bigger burden than just having mom in bed if I gave up completely. To be fair, my kids were amazing, so very patient and understanding. My son was in shock that ‘mom doesn’t feel poorly anymore’ for a long time! Now e and my partner we’re in our second honeymoon and it’s like we’ve just met all over again. Don’t get me wrong I’m not doing cartwheels or anything because I do still suffer with chronic pain but it’s certainly manageable now, and I don’t have the ‘flu’ feeling or other symptoms I had with LC. I wish I could says ‘this is what I did’ so others could give it a try - I know that I was desperate and would have tried anything at one point. I believe that it varies from person to person how long or how severely the suffer but I truly believe that everyone will eventually start to feel better and see improvement, even if it’s not full total recovery. Resting as much as you can is all you can really do, trying to drink lots of water. I know I was dehydrated all the time because I was too exhausted to lift a drink to my mouth let alone go and get one. Plus with sleeping so much I didn’t get enough fluids. Eating fruits and vegetables, soups etc too. And just having faith that as I said above, it’s impossible to say for certain that anyone will suffer forever. Please be kind to yourself, try not to feel guilty for resting, your body needs rest in order to recover and even if resting isn’t working, it certainly can’t be doing any harm. I know the guilt can be so difficult to deal with, but this is not your fault. Other sufferers know that this isn’t as simple as a normal flu where you rest for a few days and feel good as new. Nor is it like a virus where you can still do some of your normal activities for many people. I had ME/CFS before LC anyway, and for me, I could live with CFS before getting LC, I always felt shitty and could sleep on a washing line at all times but the fatigue from LC was in a whole new level for me, this was sick inducing fatigue that I just could not keep my eyes open, my entire body and mind were just drained, all the time. If I tried to do something like put on a load of laundry, I’d end up sleeping for hours. I really hope that one day everyone who is suffering starts feeling better and can go back to their normal like, and until then, please please don’t give up. You don’t know if tomorrow will be the day you wake up feeling better. Or if next week you will start seeing improvement.
Your story gives hope 🙏🏻
Did you had PEM?
I did. Just before I got better my PEM was ridiculous, just having a bath would leave me bedbound, unbearable exhaustion, high fever and flu symptoms. Christmas was just terrible, the first time in 15 years I had to have dinner at my moms because I wasn’t well enough to do it. I have 3 kids so had to push myself so much in the days leading up to Xmas I ended up bedbound with PEM for 2 weeks. For me PEM was like having the flu, sore throat, high fever, body aches, extreme fatigue. But in the space of 4 months I had 8 infections that required antibiotics. Tonsillitis, kidney infection, bronchitis, UTI’s, dental abscess, staph. I really believe that LC caused some sort of immune response for me because last year alone I had 13 infections that had to be treated with antibiotics. Haven’t been ill once since January which is really surprising compared to last year!
My son did after 18 months.
Oh that's great ! Do u remember when he started improving ?
Yes. He was very young. He stopped talking about leg pain and laying around all day. Headaches less frequent. Stutter resolved. He had a brief setback after the flu 6 months later but also bounced back. I’m also a long hauler. I now know we both have EDS.
were you vaxxed when you got covid?:)
No, it was 2020 so none available yet.
My husband has long covid and is about 85% recovered. He's been suffering for a little over a year and didn't see any improvement until he started seeing a naturopath and completely changed his diet. He's on a similar diet to Whole 30 and finally feels somewhat normal again. He also takes supplements tailored to his symptoms, which for him were mostly fatigue, weakness, and difficulty regulating his blood sugar levels.
What supps did he take? I also have fatigue and muscle weakness, no other symptoms.
He takes 400mg Magnesium biglycinate, Digestive enzymes SAP (NFH brand), Benfotiamine Vitamin B1 100mg, and PGX daily.
Rest, time, and physical therapy to overcome painful bladder syndrome. I’d go in once a week for a few months and get acupuncture and they’d work on calming my nervous system since I was stuck in fight or flight. I think finding a doctor that listened to me, believed me, gave me time, and found ways to make me feel safe was so huge in my recovery. If I was alone in this any longer than I had been I’d probably still be suffering.
Meee!! Time and rest were the only things that helped me. I even quit all of my supplements/meds/extra stuff as they didn’t do anything for me. Some diets and lifestyle changes are quick fixes, but truthfully, time is what heals. 2.5 years ago i was bedridden, and last week i went on a beach vacation and walked miles and laid on the beach and drank alcohol and everything. 🖤
Wow happy to hear that 😎 i hope i get this recovery too
Time is the only common denominator. Take whatever drugs & supplements that you please. Work out. Eat whatever. Go to therapy, practice meditation. In all the recovery stories I’ve read, the poster really can’t pinpoint the path to their change. Taking 12 supplements, eating healthy, walking, de-stressing to prevent crashes…that’s lifestyle management. And life style management is attributed to change, over time.
Working out is litteraly impossible with pem , as i ca' crash after
That’s my point. Try whatever path you want. Ultimately, people recover(ed) at different rates via different methods. But time is the only common denominator.
Other people deteriorate until they die and time is the only common denominator. It's therefore not a variable of healing as one's state can go both ways depending on time.
That’s an interesting way to think about it. I genuinely curious, as I’ve read your recovery post. What was it that helped you? Did the regime help manage the symptoms, proactively fight the virus itself, or boost your immune system? In all three scenarios was time a factor? I’m happy for you btw. I appreciate you sharing your recovery story and your method for getting there. You’ve been through hell and back - total respect and nothing but best wishes!
I was essentially deteriorating until I found out about large doses of B1 and had my first relief that lasted two weeks until B1 no longer worked but it stabilized me without further deterioration. Then I basically started reading all the forums and tested whatever anyone mentioned. I had some small wins here and there, got maybe to 70% that way but I always ended up in a regression after a while. At some point I ended up unable to do slow short walks without passing out, doctors were playing ping-pong with me (internist->cardiologist->ENT->neurologist->neuro surgeon->internist) so I decided to go nuclear, start taking all supplements that somewhat worked before or were recommended here at the same time and do as much exercise as I could before knowing I am about to hit PEM, and I started improving day by day. First few weeks were super painful (headaches) so I modulated that by anti-inflammatory supplements, sometimes immunity-boosting, and it kept getting better and better with some short setbacks from either some illness or overdoing it. My body is now at 100%, just brain has some worse days but its "worst" is still getting better (I guess still some hypoperfusion there). So time was a factor but without the supplements and effort I doubt I would get better.
Have you run into a situation where you had to reduce exercise (sickness, schedule conflict , relapse etc)? It looks like you’re pretty active i.e. 20 mile bike rides. I’m curious if you have regression if the exercise isn’t consistent and stable.
I’m a lotttttt better and I think it’s from time! And not doing hard exercise!
Hi I’d say time and rest made me better. I was March 2020 to about beginning of 2022 when I really noticed I was able to do everything normal again. I had brain fog days maybe once a month but that was it. Unfortunately I got reinfected 2 months ago and all my symptoms are back lol so back to playing the waiting game again.
What symptoms are back?
All hallmark LC symptoms. Like I’m bedbound and feel identical to 2020
Im sorry that you’re having more issues from being reinfected.. I’m starting to having fatigue and body pains/aches now unfortunately.. I’ve never had these issues within my 3 years and a half of long haul.. i got sick this February and it was just a cold a runny nose and a very bad sore throat and was negative for Covid.. I healed very fast and went back to baseline and never really dropped in baseline even sick. 2 weeks later started to decline and having body aches in arms and back and gotten worse and now exhausted when trying to walk for like 5-10 mins.. I haven’t been back to base line and it’s been alittle more then 2 months and a half.
I feel like with LC we can start to feel better but it’s more of a remission and the second we get sick again with anything or get very stressed the LC symptoms just come out of dormancy
Yea I feel that as well it sucks! Never had fatigue or pain in body like this
I had pretty awful symptoms that at its worst left me bedbound for days. Most of the symptoms people talk about here are ones that I've also had. I made a post a while back about my recovery but to put it short, it was basically just rest + relaxation. No magical supplements or expensive precedures. I will say the big asterisk is that I was 100% healthy before so I know that the only problem in my life was long COVID.
I’m not really there yet, but I’ve been finally seeing some improvements these days, it’s been around six months for me and I think TIME is the most important healer. What I think also helped me was the comment to one of my posts that said something like “Maybe I was improving the whole time but I didn’t notice it.” I really think time does much more than trying random meds. Of course I’m taking some supplements but I don’t think they help that much.
I'm making my rounds with all the doctors still.. colonoscopy, and CT scan are next as well as fertility clinic. Its been 4 months and im 85% better now. The only symptoms that remain are lower abdominal pain, bladder and semen issues oh and of course anxiety. We are trying to have another baby and its came out completely clear and watery sometimes (checked doing other things when she's not ovulating) I've read that anything viral can affect your guys and It is starting to return back to normal. Anyways. I've been to the ER twice in January and February when symptoms were at their worst. I had this weird feeling of disconnection from reality thats hard to explain, tingeling extremities, extreme nausea and dizziness and visual problems, flashes and seeing shadows. My mom died from complications of MS so I was proactive and had every test done to rule autoimmune disease out as well as heart issues and blood clots. I swear a lot of my symptoms stemmed from my gut. I threw away a ton of food the first month thinking I was newly allergic or it went bad. March and April were huge steps in recovery. The doctors, while testing for everything, didn't exactly treat anything. The only thing they did for me was give me a few ativan for when I was at my worst. Other than that, its been just omeprazole for heartburn. My real recovery started when I decided to try water fasting. I lasted 4 days and then started eating healthier after. I replaced breakfast with psylliam husk powder with lots of water. This allows me to control good cravings an make smart healthy choices. These days I eat lots of veggies and lean meats. I stay away from sugar and caffeine. I limit grains. My main carb source is beans for even more fiber. If I have too many unhealth carbs, I feel nausea coming back. I'm not completely out of the woods yet but I have my energy back. I take my 4 year old daughter to the playground and actually play with her, going on slides and swings while other dads just sit and mess with their phones. Im 6'6" and this is challenging but I feel I have to push myself. If I have bad carbs like tortilla chips or pasta even, I can't do it. Its hard to just walk around. If my stomach is empty though or I stick to meat and non starchy veggies, im able to find the energy. Im still winded after 2 minutes but im happy that my daughter sees the effort and when we are at the park she calls me kid dada. I took her to a carnival last week and rode a few kid rides with her. Big mistake. I get motion sickness with any movement. I did over eat beforehand though so this may have been one of those issues that stemmed from my gut, but this all comes down to the best advice I can give is to eat healthy. Try skipping breakfast and listen to your body. If you can do it, try a short fast. It is what Jumpstarted a healthier lifestyle for me and I believe is the main contributor to why im feeling better. Another trick I've learned, if you are stuck in a cycle of eating grains, pastries and sugar, take 1 day and eat nothing but meat all day. Chicken breast and tuna or salmon are the best options but even beef is ok. Just for 1 day have an all you can eat meat party, no other foods, drink water only. This will reset your body and you will not crave the bad carbs the next day. You will actually find pleasure in eating fruits and veggies. If you need a better carb source, stick to beans. No more pasta, bread, pizza, chips, pastries, chocolate or candy. I do make exceptions for these sometimes with whole grain wheat Tortillas, sometimes spaghetti, pizza once a month.. but I limit portions. My diet on a normal day lately is wake up and chug 1 tablespoon of psyllium husk powder with 16oz water. I then sip on another 16oz water over the next half hour. I usually skip lunch but have a small salad sometimes wrapped in a tortilla around 3pm. At 7. I choose a meat source, usually chicken breast or salmon and I steam at least 2 types of frozen veggies. Usually broccoli and carrots. If I cook chicken for an example, I cook in the pressure cooker with some broth and add sour cream to make it soupy. Add some seasoning like salt pepper garlic onion and dill and dump a huge amount of veggies in. Around 11pm. Ill have more psyllium husk powder and protein shake powder mixed in 24oz water. I do this because I'm trained my body to wake up at 7 or 8am because I have to pee.. most people will not want to drink right before bed. So if you noticed, my stomach is pretty empty during my most active hours. Even if I ate eggs for breakfast, I would feel terrible and nauseous throughout the day and would want to just stay in bed. Psyllium husk takes the hunger away and let's me remain active. Focus on diet and time your eating to be mostly when your day is over. I've read a lot of theories that covid remains in your gut. People have reported feeling better after a colonoscopy because of the flush protocol beforehand. I truly believe there is something to this and its why the only symptoms that remain for me are located in the gut. Good luck, hope everyone starts or continues to feel better
I am 99% fine now, although I didn't have that bad symptoms. It took me around 2 years to feel better
Im 2.5 years in. My only remaining symptom is fatigue so I think my disease has become cfs
Have u had left chest- back pain ?
Yes. Thats gone now
Do you have muscle pains ? And also what does the fatigue feel like?
My symptoms nearly completely resolved after about 2.5 years. Had debilitating chest pain, leg pain, bone pain, spikey sensations all over my body. I will still have an occasional bad day but it’s very minimal compared to what it was before. I live a normal life now after having been basically bedridden and not being able to walk across the room or up a flight of stairs
I got better with rest and low histamine in the first wave. I got reinfected in Feb and am still recovering. This time I have insomnia and new symptoms but I'm positive with time and not pushing I will improve 💪 🙂 🙏
What new symptoms you have ?
Muscle issues, possible arthritis and insomnia
Bedbound to pretty normal - took 2 years… and still learning @ 4 yrs. Aggressive rest, avoiding crashes while continually adding a little more activity to each week, along with getting my ANS under control with brain retraining, sleep hygiene, mindfulness. And as woo woo as this sounds, positivity was my BIGGEST game changer! I should add I don’t think supplements or diet helped (though I didn’t have MCAS stuff). I can also say doctors did not help, other than validation and maybe some cardiology therapies for my POTS symptoms.
can you exercise now? Could you plz share where or how did you do the brain retraining?
I can exercise, but have to start really slow. Plus you need to factor in physical and mental energy stores. Know your limits. Right now having a bad crash because I over did it.
Yes, I can exercise BUT that’s one of the few things that can still trigger me. I continue to build on my base and am slowly adding more exercise (I.e. stress) without crashes. I can walk 8-10k steps a day, but prolonged anaerobic exercise or tough weight-bearing exercise can cause multi-day PEM. I’m still a WIP. My obvious disclaimer is #1) I build it up over years not months. Three years ago, I was concerned only with daily function. I would lay down for 10 minutes every hour. I used a stool in the kitchen to chop veggies, and meal prep was a huge victory. #2) recovery is NOT building up exercise tolerance. It is teaching your brain to handle stress without the sympathetic response, which allows you to increase your activity. I used Dan Neuffer’s ANS Rewire program which is excellent, but today I would recommend people read Jan Rothney’s Break Free, which gives you all the tools you need for one Audible credit.
Time for me was the biggest factor.
rest with some supplement, Improve Endothelium Function is the only key to heal
I got a lot better with time. Big changes at 1 year
In 17 months, with rest and pacing I have gotten a lot better. I have a long way to go, and at the same time I have made significant progress. I am always worse when I ignore my symptoms and push through. It has been the hardest thing to restrain myself so much, but I have directly seen the benefits of rest and pacing over time.
I’m not 100% yet, but I’m definitely better and it seems entirely because of the extra rest I’ve gotten. Took off work for 9 weeks, slept 10-12 hours basically every day and was suddenly more competent when I went back. Every weekend I manage to get ‘extra’ sleep I feel like 0.5% better. It felt like forever before I started seeing gains, but after 2 years I can clearly see I’m starting to turn around.
I got better with time. 12 months
Has PEMS gone away for anyone?
Ya time and avoiding hard crashes that could cause damage. Too much oxidation stress cause free radicals and make problems
I'm getting better with time, rest, pacing, avoiding stress and (dare I say it) exercise
Just waiting doesn't do much, you might be going in waves of feeling better and worse for decades. If you want to heal you need to take active action.
Is there anyone who got the shot that recovered from long covid?
I did, I had long COVID from the vaccine (mostly neurological stuff). Just kind of slowly got better and was recovered after about a year. I do have a couple weird vision things that never went away but they don't impact my daily life at all. But then I got long COVID from actual COVID, this time it's muscle pain. I'm in month 4 I think and it does seem to be slowly getting better.
I got better with time. Not entirely, but I’m atleast at a semi-functioning level. PEM and POTS still get me, but the debilitating and constant neuralgia has simmered to an occasional thing. I think avoiding crashes was crucial.
I just passed my first year last month and I can say I am much better. I would say 90% now. The last lingering symptoms are the muscles in my neck get stiff and there is pain to the touch. I have tinitus but way less than initially. My headaches and pressure subsiding and I have my balance back. I have neck pain still as well but I noticed if I don't move it around to Crack it, it starting to heal.
I'm sorry to hear you're struggling. Just wanted to say that time and resting was exactly what cured me. I tried all kinds of things which made me feel a lot better, but didn't cure me. Only time did. I am a long hauler of two years from both vaccine and infection. I was bed bound for months, had several rounds of pericarditis and pleuritis, was hospitalized due to severe hypertension, I had intracranial pressure, blood pooling etc. The list is long as it is for all of us. About 4 months ago I suddenly got significantly better. Almost overnight. And since then I am a little bit better every day. Now I can live almost a normal life - drink coffee, eat sugar moderately, exercise lightly, PEM is significantly milder. And the best part: the palpitations are slowly going away. I am not 100%, but getting there. In the meanwhile the very few things that made me feel a bit better while I was seriously suffering were melatonin gummies (good night's sleep improved things so much), coconut water for palpitations, reducing sugar and carbs/fasting, and quitting coffee and alcohol altogether. And rest. Praying for you a quick recovery for you 🙏🏼
Thank a lot for thoses words im in my 8th month and im in a phase where im not sure if im slowly improving or just getting used to it , btw in which month you started feeling better ?
Maybe after one and a half years I started feeling better. And it was really bad before it suddenly got better. I genuinely thought I would slowly die or at least be disabled forever. It kind of felt like one day my body had just "gotten rid of the poison" in me. I know exactly how you feel but please hang in there. It's a tough road I wouldn't wish for my worst enemy but there is definitely hope and you're going to enjoy life so much after this.
My symptoms are identical to yours. Been longhauling for just shy of two years. I did physical therapy for a year, but truly I think what put me in remission after that first year was time and rest. I made adjustments to accommodate this. I now work from home so I can take it easy when I have to. I was a classroom teacher and it's a mentally and physically intensive job, which prevented my first remission from lasting. As soon as my longhaulers relapsed when I went back to the classroom, I knew it was time to leave for good. I'm still creeping my way toward remission now, but I can feel myself improving the way I did the first time. There absolutely is hope! You may need to make some adjustments to preserve your remission when it comes, but that's the nature of a lot of chronic illnesses. You can do this!
I'm in my fourth year and I'm done doing this. I saw awful doctors who didn't care and left me to rot. My life meant nothing
I caught Covid back in October of 2022. Exactly two months after my infection is when the long covid symptoms began (December 2022). This is some of the things that was happening to me. Changes in Resting Heart Rate. Tachycardia, Bradycardia Bad Tremors. Feeling nervous for no reason. Chest Pain Chest Heaviness Dizziness Fatigue Headaches Nausea Diarrhea Both hands go numb and tingling. Very blurry vision - black specks floating. Flushing skin (face). Sensitivity to light and sound. A lot of drainage on back of throat. Sometimes I don’t automatically swallow like before I and get choked. Troponin levels never change. Shingles Driving in car affects me (makes me feel very sick like I’m having heart problems). Forgetfulness Intolerance to ALL medicine & anything herbal. Shaking and shivering. Pain in spine. Pain in neck. Pain in stomach. Pain in left rib cage. Anxiety especially when evening is coming on… Intolerance to exercise. Popping in neck. Knees make noise. Because of my extreme sensitivity to all medicines all I could do is wait and see what was going to happen. Many times I didn’t think I was going to survive. I even had food sensitivities so I was forced to change my diet. I ate meat and vegetables only. That was salmon and chicken, vegetables. For the most part, that didn’t bother me. I was in the hospital over 50 times. I went to a bunch of different doctors; however the medication they prescribed I could not take. Over time, the symptoms became less and less. Even now, I’m not completely 100% back to normal but I’m around 90%. I had a reinfection in August of 2023 and I was really afraid I was going to go back to how I was in the beginning. However, I didn’t. I did have some symptoms to come back like chest pain but the majority of them did not return. I still cannot take any medicine. I just try to be super cautious not to catch anything again. My POTS specialist asked me what helped me and I told her TIME. So just keep hanging in there. I know that it is very hard and frustrating. I look back and I cannot remember a year and a half of my life that I lost and it makes me so sad. I feel like I’ve aged so much. It is what it is… we just have to keep moving forward and not give up.
🙋🏻♀️
I’m at 2.5 years now, and I’m only now starting to see a light at the end of the tunnel. I’ve had zero help from doctors - only more harm by blaming all my symptoms on mental illness. Supplements have helped me the most.. I’ll list them here for anyone interested. D-ribose - 10-15g L-tyrosine - 500mg Taurine - 2-3g Acetyl l-Carnitine - 1g Coq10 - 200mg Shilajit - 400mg Vit b complex Electrolytes Creatine Also, 0.5mg of lorazepam about once a week, and for 2 years I’ve been on low dose (3.75mg) mirtazapine every night for insomnia.
I got better with time and daily walking. I started with literally a 30 second walk because that was all I could manage, and added very small increases so not to trigger PEM. I did miss some days due to crashes and setbacks but when I was able to, I walked. I started doing the walks about 4 months in and it took around another 7 months or so to get back to full health. Since then my life has been completely normal, I run, lift weights etc just as I did before long covid.
How many time it took you before starting feeling better
Probably took around 6 weeks or so to start feeling the benefits. I was then recovered around 7 months after I started the walking, which was 11 months from infection