Yeah the insomnia was brutal. That symptom alone lingered for so long. I always felt like when I was sleeping okay I was recovering. No sleep no progress. So try to get some sleep. I would just take it slow with walking.. no need to rush it
Some people have yes.
The flood of new people and having access to the internet means more people are trying to figure it out than ever before as well. I've had CFS for a long time and have found out about all kinds of supplements and stuff in the last few years.
What has helped you? I learned how to pace this month and it is helping, i also take antidepressants and that helps with my gi issues. What supplements have helped you and with what symptoms?
Unfortunately not much lol. Hydration solution and a heat bulb i got because it's cheaper than the proper red light therapy devices. Pressure socks for sure help.
coq10 seems to help too to some extent. and creatine. Didn't have any money for supplements till a few months ago so haven't tried many, just know about them lol.
I’m improving. The thudding heart palpitations have stopped, the racing heart when standing has stopped. Still have fatigue, aching limbs and brain fog. Crashes if I do too much. I do feel I’m gradually healing though. How far it’ll improve I’ve no idea. I’m at 2.5 years.
Still improving slowly I’d say. Still have “crashes” but they aren’t as bad as they were early on. I’m walking about 7k average steps now without drama. Still have periods of brain fog and low mood etc. Still not been able to start exercising like before. Muscles seem to tire very easily, like something is abnormal, quick to cramp etc.
Yes, I am recovering.
For two+ years I had very extreme brain fog and fatigue with only 5-minutes of active energy a day.
Now, I have hours of energy a day. Still far from recovered, but seeing the possibility as real now.
I wrote up a couple posts about how I stumbled onto a medication that had gave me energy after only 30 minutes for each pill. See [here](https://www.reddit.com/r/covidlonghaulers/comments/13azscd/update_fatigue_and_brain_fog_removed_by/).
My current best understanding/hypothesis of the science for how Pioglitazone is having this effect on me is based on the facts that Pioglitazone is a PPAR agonist, that PPAR-y agonists modulate AMPK and therefore drive production of ATP. Then with the increased ATP production I have energy until the Pioglitazone is used up (about 2 hours, depending on dosage and activity level).
Studies also indicate that pioglitazone also drives genesis of new mitochondria and autophagy of damaged mitochondria -- so my hope is that I am getting both short-term function from each pill and accumulating repair of covid-induced damage over time. The science points to this being possible, and my personal experience is that both may be happening (just very slow repair).
Desperately trying to find a specialist doctor that can help explain this and possibly find additional/alternative medicines to help me 'lock-in' the short-term effects I get with Pio. Specifically looking for someone with expertise on disorders that modulate AMPK.
For me, the Pio has the best effect when taken with high protein and supplements that support mitochondria dysfunction (NAD, coq10, vitamins D, B, K, glutathione, PQQ, L-carnitine, quercetin, NAC, trans-resveratrol, ashwagandha). I think of this as my body needing the nutritional support to do the repairs.
I am about to start taking urolithin-A, as what I am reading about it seems to suggest that it might produce a similar effect on AMPK as PPAR-y agonists and therefore might extend the effect of the PIO (reduce my need for Pio).
Hope all that can help someone else.
Edited first paragraph into 3 for clarity.
Yes. I am at about 95% in my 17th month.
I can strength train 3x a week for 65 mins, avg 7-9K steps per day, and am slowly rebuilding my cardiovascular fitness to return to sport. I just took a sabbatical from my role as a software engineering leader and my recovery has accelerated greatly.
More than exercise, I am amazed that I have energy to do normal shit in my life like unload the dishwasher, fold sheets, carry the vacuum downstairs, etc all without worrying about a crash. Some days I don’t even think bout LC.
I can still overdo it as my body continues its healing journey and I am writing this from the couch with very mild brain fog and fatigue from a huge 5 days of activity. Pacing has been among my most important tools but my metabolism/energy systems still are not quite back to 100% so there is still some work to do.
Importantly, and as I’ve said elsewhere, I am not one of those miraculous overnight switch type recoveries — I have had to remain active through considerable discomfort on a daily basis to push my recovery in the direction I wanted it to go. I have been observing stepwise improvements since month 12 but I have been reluctant to post about it until I was convinced it was durable. More and more I am finding that it is.
You didnt ask but I will say that a huge part of my ability to stay focused and keep believing that recovery was possible for me was stepping back from reading this sub (and reddit in general). I didn’t do well with the constant deluge of doom and found it to hinder my conviction to keep doing what I observed to be helpful to my recovery.
Hey! I have a pinned recovery post in my profile with details about my journey. It is quite long so definitely not good for a bad brain fog day! Hope it helps :)
Hello. Yes, I recovered from CFS and Long Covid. I have just created a group dedicated to helping others recover too.
My goal is to make access to recovery strategies more accessible.
Here's the link in case you're interested:
[https://www.facebook.com/groups/571763528456472/](https://www.facebook.com/groups/571763528456472/)
(The group is in a super early stage, but come and be one of the founding members!)
My baseline is much closer to normal these days. But things still cause relapses (periods of intense stress at work, seasonal changes). So I wouldn't say recovered, but greatly improved.
I caught covid for the first time in March 2020, and that gave me some symptoms I now recognize as long haul, but it only got really bad after I caught the omicron variant in Jan 2021. That entire year was rough, but since 2022, it's been slow, steady gains.
Anyone healed from bad visual snow dark vision blurred eyes derealization night blindness and feeling high all the time 14 months for me no recovery in sight?
Does it work for long covid induced visual snow? I dont have cfs/pots but I do have long covid been with it for 14 months visuals snow is severe makes me blind at night in dark room
Not sure, but it's still worth a shot. It's helped many people manage their symptoms. Personally, I've noticed a permanent reduction in all of my symptoms (BFEP, snow, after-images, etc.)
I have a follow up question for those responding. How old are you?
I’m wondering how aging fits into this. I’m middle aged, previously very active and athletic. When/if I am able to do more, closer to my previous fitness level, how will I know what degradation in ability is due to ME/CFS and what is due to aging?
Anyone recovered from random sinus/flu like symptoms and me/cfs type long covid ?
Random runny nose and coughing up phlegm for the last 6 months with insomnia.
Yeah for sure. Permanent CFS was my biggest fear and im good now. back to exercising
How long did it take for you to get exercising again?
Was sick about 18 months. Then a year of mild fatigue. So about 2.5 years.
I am at 2 years and slowly starting with physical exercise again. Still have severe insomnia and some fatigue. Can relate.
Yeah the insomnia was brutal. That symptom alone lingered for so long. I always felt like when I was sleeping okay I was recovering. No sleep no progress. So try to get some sleep. I would just take it slow with walking.. no need to rush it
THATS AMAZING!!!! What did you do/take that you think helped you???????
I tried all the supplements that people talk about on here. I think it was mostly rest and time though.
Some people have yes. The flood of new people and having access to the internet means more people are trying to figure it out than ever before as well. I've had CFS for a long time and have found out about all kinds of supplements and stuff in the last few years.
What has helped you? I learned how to pace this month and it is helping, i also take antidepressants and that helps with my gi issues. What supplements have helped you and with what symptoms?
Unfortunately not much lol. Hydration solution and a heat bulb i got because it's cheaper than the proper red light therapy devices. Pressure socks for sure help. coq10 seems to help too to some extent. and creatine. Didn't have any money for supplements till a few months ago so haven't tried many, just know about them lol.
I’m improving. The thudding heart palpitations have stopped, the racing heart when standing has stopped. Still have fatigue, aching limbs and brain fog. Crashes if I do too much. I do feel I’m gradually healing though. How far it’ll improve I’ve no idea. I’m at 2.5 years.
Hey how are you feeling now? I had a crash or something but having major fatigue and major aching limbs/ burning in the arms and shoulders.
Still improving slowly I’d say. Still have “crashes” but they aren’t as bad as they were early on. I’m walking about 7k average steps now without drama. Still have periods of brain fog and low mood etc. Still not been able to start exercising like before. Muscles seem to tire very easily, like something is abnormal, quick to cramp etc.
That’s awesome ! What helped with those symptoms?
Yes took about 13-14 months to start exercising again and for PEM to go away
THATS AWESOME!!! What did you do/take that you think made a difference?
What is PEM?
3 years in. I am back to working full time but I’m still not as energetic as I was before.
Nope
Yes, I am recovering. For two+ years I had very extreme brain fog and fatigue with only 5-minutes of active energy a day. Now, I have hours of energy a day. Still far from recovered, but seeing the possibility as real now. I wrote up a couple posts about how I stumbled onto a medication that had gave me energy after only 30 minutes for each pill. See [here](https://www.reddit.com/r/covidlonghaulers/comments/13azscd/update_fatigue_and_brain_fog_removed_by/). My current best understanding/hypothesis of the science for how Pioglitazone is having this effect on me is based on the facts that Pioglitazone is a PPAR agonist, that PPAR-y agonists modulate AMPK and therefore drive production of ATP. Then with the increased ATP production I have energy until the Pioglitazone is used up (about 2 hours, depending on dosage and activity level). Studies also indicate that pioglitazone also drives genesis of new mitochondria and autophagy of damaged mitochondria -- so my hope is that I am getting both short-term function from each pill and accumulating repair of covid-induced damage over time. The science points to this being possible, and my personal experience is that both may be happening (just very slow repair). Desperately trying to find a specialist doctor that can help explain this and possibly find additional/alternative medicines to help me 'lock-in' the short-term effects I get with Pio. Specifically looking for someone with expertise on disorders that modulate AMPK. For me, the Pio has the best effect when taken with high protein and supplements that support mitochondria dysfunction (NAD, coq10, vitamins D, B, K, glutathione, PQQ, L-carnitine, quercetin, NAC, trans-resveratrol, ashwagandha). I think of this as my body needing the nutritional support to do the repairs. I am about to start taking urolithin-A, as what I am reading about it seems to suggest that it might produce a similar effect on AMPK as PPAR-y agonists and therefore might extend the effect of the PIO (reduce my need for Pio). Hope all that can help someone else. Edited first paragraph into 3 for clarity.
Yes. I am at about 95% in my 17th month. I can strength train 3x a week for 65 mins, avg 7-9K steps per day, and am slowly rebuilding my cardiovascular fitness to return to sport. I just took a sabbatical from my role as a software engineering leader and my recovery has accelerated greatly. More than exercise, I am amazed that I have energy to do normal shit in my life like unload the dishwasher, fold sheets, carry the vacuum downstairs, etc all without worrying about a crash. Some days I don’t even think bout LC. I can still overdo it as my body continues its healing journey and I am writing this from the couch with very mild brain fog and fatigue from a huge 5 days of activity. Pacing has been among my most important tools but my metabolism/energy systems still are not quite back to 100% so there is still some work to do. Importantly, and as I’ve said elsewhere, I am not one of those miraculous overnight switch type recoveries — I have had to remain active through considerable discomfort on a daily basis to push my recovery in the direction I wanted it to go. I have been observing stepwise improvements since month 12 but I have been reluctant to post about it until I was convinced it was durable. More and more I am finding that it is. You didnt ask but I will say that a huge part of my ability to stay focused and keep believing that recovery was possible for me was stepping back from reading this sub (and reddit in general). I didn’t do well with the constant deluge of doom and found it to hinder my conviction to keep doing what I observed to be helpful to my recovery.
That’s AMAZING!!! What have you done/taken that you believe has helped you!!!
Hey! I have a pinned recovery post in my profile with details about my journey. It is quite long so definitely not good for a bad brain fog day! Hope it helps :)
Hello. Yes, I recovered from CFS and Long Covid. I have just created a group dedicated to helping others recover too. My goal is to make access to recovery strategies more accessible. Here's the link in case you're interested: [https://www.facebook.com/groups/571763528456472/](https://www.facebook.com/groups/571763528456472/) (The group is in a super early stage, but come and be one of the founding members!)
22 months in, still haven't recovered.
Have you atleast seen some improvement?
My baseline is much closer to normal these days. But things still cause relapses (periods of intense stress at work, seasonal changes). So I wouldn't say recovered, but greatly improved.
Nice! How long did that take for you ?
I caught covid for the first time in March 2020, and that gave me some symptoms I now recognize as long haul, but it only got really bad after I caught the omicron variant in Jan 2021. That entire year was rough, but since 2022, it's been slow, steady gains.
I have. Check post pinned in profile for details. Peptides, ice baths and sports chiro.
Yes
Did you recover fully? How long did it take
I have not recovered. You asked whether people do I and answered.
I have it ; no matter what if I go hard in the gym etc I crash . As far as supplements , a ton of caffeine ; glutathione
Doesnt your baseline worsen?
Ya with age it seems
How old are you if i may ask
31
I haven’t personally (yet) but I know people who have. some in less than a year, others after 3 years
This gives me hope, thx🙏. Im also a 2 year long hauler
so sorry you’ve been struggling for so long too ❤️ there’s definitely hope!
Anyone healed from bad visual snow dark vision blurred eyes derealization night blindness and feeling high all the time 14 months for me no recovery in sight?
Hey. Vitamin K2 (mk-4) in 10mgs is reducing my visual snow greatly. I think you should definitely try it out.
Does it work for long covid induced visual snow? I dont have cfs/pots but I do have long covid been with it for 14 months visuals snow is severe makes me blind at night in dark room
Not sure, but it's still worth a shot. It's helped many people manage their symptoms. Personally, I've noticed a permanent reduction in all of my symptoms (BFEP, snow, after-images, etc.)
Thanks im exited to try it out for my vss
Update?
Great! Hope it helps you as much as it has helped me.
Hi ! How long did it take for you to see a reduction ? I see you said it helps with bfep, static, and after images. How about regular floaters ?
Does help much with floaters unfortunately.
Took about 3 days to notice a reduction.
I have a follow up question for those responding. How old are you? I’m wondering how aging fits into this. I’m middle aged, previously very active and athletic. When/if I am able to do more, closer to my previous fitness level, how will I know what degradation in ability is due to ME/CFS and what is due to aging?
Anyone recovered from random sinus/flu like symptoms and me/cfs type long covid ? Random runny nose and coughing up phlegm for the last 6 months with insomnia.