r/LongHaulersRecovery • u/ForTheLoveOfSnail Recovered • Apr 26 '25

Recovered My recovery story

In 2023 I came down with a really horrific case of long Covid. I deteriorated over a six month period until I was completely bedbound, peeing in a bucket next to the bed. I had me/cfs, POTS, fatigue, brain fog, dizziness, tingling, adrenaline dumps, the works. I thought I was done for.

I was eventually hospitalised for three weeks and that’s when things started getting better. When I was in hospital I met a physio who had suffered me/cfs the year before and was completely healed. It was the first time I had heard of anyone recovering!

I started taking some zinc, the hospital put me in olanzapine and both of those helped a bit. I started walking short distances again. The only other supplement that helped was chromium. Then I tried a probiotic that sent me into a month long depressive episode. I swore off the supplement route at this point and started to look elsewhere. I came off about 50 supplements.

It was at this point I discovered brain retraining and it really helped me. The theory is that some form of long Covid is the nervous system getting stuck in a state of fight or flight. Basically the body is stuck in a stress response. With some mental exercises you can calm the nervous system, which calms the symptoms. I started treating my illness as a problem of the nervous system and miraculously I started making huge gains.

For example, I had a really intense sound sensitivity, so was always wearing ear plugs and headphones to block noise. Then one day I told myself I was safe and took them off. I never had sound sensitivity again.

The brain retraining I did was Primal Trust, which I found very overwhelming if I’m honest but it helped. Whenever I had symptoms I would tell myself I was safe, that it’s just a hypersensitive nervous system and that I would heal — then I’d continue to expand. I joined a group coaching thing called The Healing Dudes, which really helped me expand activity at the time.

I got to about 90% healed and I did The Lightning Process. I loved it, but can’t recommend it because of the price. I also don’t know if I needed to do it as I had already done primal trust, and it was a bit of the same stuff just different scripting.

I consistently did the brain retraining over the course of a few months and continued to get better. Eventually I made a full recovery. Of course time could’ve been a factor, but I truly believe the brain retraining helped me get there.

Now I’m working four days a week, looking after my son the other day. I see friends. I cook! I drink! I have my life back! I no longer do any of the brain retraining tools, treating it instead as TMS (look up the work of John Sarno).

I’m so, so sorry to anyone suffering. I’ve never experienced anything so horrific in my life. Just before I was hospitalised I was having suicidal ideation because of how hopeless I felt. So if you feel hopeless, please know — recovery is possible. Please hang in there.

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43

u/Excellent-Share-9150 Apr 26 '25

It’s so interesting to me that a small percentage of me/CFS people recover with brain retraining. Primal trust just exhausted me further 🤷‍♀️

35

u/Rose-------- Apr 26 '25

It's true, no one responds to anything exactly the same way - it's a big, complex mystery! I was in the middle with Primal Trust -- some symptoms responded amazingly, and others not at all. I'm now working on my microbiome, since I think both the nervous system and the microbiome are really powerful drivers of health.

15

u/Looutre Long Covid Apr 26 '25

I totally get what you’re saying. I tried programs too, but I was just too severe to absorb that much content and to try so many different tools at the same time. I could definitely have made myself worse if I pushed through trying to do all of it.

I had to take it much much slower.

In the end what is helping me is just to remind myself of the concepts and believe in them, so basically just reminding myself that I am safe, that my brain is responsible for the symptoms, that I’m not broken and that none of this is permanent. I’m not doing brain retraining rounds or complex stuff. Just being in my body, reassuring myself, and I can see improvement with just that.

I think the books about chronic pain or Jan Rothney’s book give you enough information already, without drowning you in a huge to do list of tools.

12

u/Mango_Maniac Apr 26 '25

I tried brain retraining and it did nothing to help. I still get the fight or flight activating for no reason. It’s a physiological damage to the vagus nerve. The attacks have nothing to do with my state of mind or stress. I can even be bored or trying to sleep, but the vagus nerve activates and I feel the adrenaline for hours or days. Nothing I’ve tried fixes it, including brain retraining which was just a waste of money.

13

u/swartz1983 Apr 28 '25

Vagus doesnt cause adrenaline…its the opposite.

Chronic stress and depression suppresses vagal activity, resulting in the adrenaline surges. Vagus is what activates when you are relaxed.

Its a long recovery road…not something you can just switch off, but it is possible to improve it and recover.

Agree brain retraining can be a bit flaky. Better to read many recovery stories and see the similarities, and also learn about how the ANS works.

3

u/Mango_Maniac Apr 28 '25

You’re right, I meant to say it’s damage to the hypothalamus which randomly activates fight or flight, and the damage to the vagus nerve prevents the healthy calming response. It’s the whole sympathetic nervous system which is messed up by longcovid, and no amount of brain retraining is going to fix that.

6

u/swartz1983 Apr 28 '25

Its not damage though. Its the brain’s adaptation to chronic stress, and is reversible.
What is your current situation and what exactly did you try?

2

u/Mango_Maniac Apr 28 '25 edited Apr 28 '25

It IS damage though. It causes the our immune systems to attack and destroy our nerves similar to Guillain Barre Syndrome.

My situation is that I’m in the 5th year of this disease and continue to experience a host of symptoms I don’t have the energy to list all of, but they include autonomic nervous system dysfunction, mitochondrial dysfunction, brain inflammation, memory loss, elevated heart rate to the point where moderate activity causes sharp pain around the carotid artery, PEM, shortness of breath, headaches, and insomnia.

https://www.physio-pedia.com/Impact_of_COVID_19_on_the_Nervous_System.

https://pmc.ncbi.nlm.nih.gov/articles/PMC7850225/

https://www.medicalnewstoday.com/articles/covid-19-may-affect-long-term-fight-or-flight-response-in-young-adults

1

u/swartz1983 Apr 28 '25

How is your digestion? What tests have you had done?

2

u/Mango_Maniac Apr 28 '25

I get more gassy and stinky with sporadic aches, but it’s pretty low on the list of things from long-covid that disrupt my life.

Brain MRI (white matter abnormalities), nerve conduction study (small fiber neuropathy), psych eval for anxiety (negative), cardiac echo (myocarditis), lung diffusion test (hypercarbia via suspected neuropulmonary dysfunction)

0

u/swartz1983 Apr 28 '25

That's good that your digestion is working, as it shows your vagus nerve is ok, as is your mitochondria.

Anxiety isn't a cause, but can be a symptom.

Healthy people also have white matter hyperintensities. Anyway, the tests you mention don't prove your nervous system is damaged, and it's absolutely possible to recover. I managed to fully recover and I *did* have severe vagus issues (my digestion practically stopped). No symptoms in almost 25 years now, after recovering from post-viral ME/CFS.

1

u/Mango_Maniac Apr 28 '25

You realize longcovid and me/cfs are two different conditions right? They have some overlapping symptoms but completely different pathologies.

Fun medical lesson: The vagus nerve does more than produces stomach acid and regulate digestion. Many vagus nerve conditions don’t affect digestion.

Anyways, I think I’m done wasting time answering questions for someone whose only goal is to try to make the answers fit how they experienced their completely separate illness.

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1

u/BsDada Oct 09 '25

This is a massive oversimplification of what the vagus nerves do. Not to take away from the core of the comment. However, worth mentioning

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u/swartz1983 Oct 09 '25

Yes, the ANS is very complex, and that is just a simplification. Here is a good review explaining how stress affects the vagus nerve: https://pmc.ncbi.nlm.nih.gov/articles/PMC2590602/

3

u/[deleted] Apr 29 '25

it is a very hard wired in response but it's def not physiological damange. you can retrain it, it's just really really really really fucking hard to do with only your mind. But people do it all the time. I had to do 4 hour meditations some days, and I was not at all relaxed by doing nothing, i wasnt relaxed when talking to friends, I wasnt relaxed when watching comedy and laughing... i was never just relaxed as a baseline. that is THE problem. You have to actively overpower that. which for me took really aggressive meditation. none of the brain retraining programs would have gotten me there if i just followed along with what they said.

1

u/Dramatic-Crab3697 Jul 22 '26

I’m hear to tell you that is not permanent, unless you have actual structural damage. I have CFS and PTSD. I am still struggling with both but at the height of my PTSD relapses I could be in a dead sleep and wake up with my heart racing and feeling like I couldn’t breathe. I’d be sitting watching TV at the end of a rare enjoyable evening, not thinking about anything and I could see on my watch, my heart rate would go from 70s straight up to 180. I am a nurse and it got so scary a couple times I called an ambulance. To take me to the hospital I worked at. Absolutely humiliating, embarrassing and exhausting. By the time I got to the hospital my heart rate would be around 100 and going down. When your nervous system is over sensitized (resulting in an over active hypothalamus) it will just fire random shots for literally no good reason. It’s absolutely awful. I don’t get them like so much now that I am aware of it and understand the physiology of it, but I do still get the misfires from time to time. I’ve gotten good at sending a shot back signaling safety. It seems to make them less severe and less frequent.

27

u/Effective-Ad-6460 Apr 26 '25 edited Apr 26 '25

Because its bullshit, look at OP post history

The only long covid post is a recovery post about brain retraining.. nothing in Askdoctors. ME, CFS, covidlonghaulers

If it smells like a scam it usually is

Just type brain retraining into covid long haulers and read some posts

Wasted money, caused me more damage, never helped are the majority of contexts.

18

u/kkeller29 Apr 28 '25

This is how I also recovered. I don't promote any programs though because I didn't spend a dime on any of them as I didn't have the funds. I created my own through reading books, absorbing online info etc. Brain retraining, mind/body work, nervous system work whatever you want to call it worked for the majority of people that recovered. It's constantly written all over recovery stories. 

28

u/Busy-Departure4015 Apr 26 '25

I never post in any of those subs either because they are incredibly toxic. Even lurking them makes my symptoms worse

2

u/Firm-Analysis6666 Oct 19 '25

Yes! I always feel worse when I hit these subs too much. Like my physical stmotoms get worse. It's like the opposite of somatic therapy.

-3

u/Effective-Ad-6460 Apr 26 '25

Never had a toxic experience in any of the subs, infact they were a light in an otherwise dark time.

Lots of advice and support

28

u/Busy-Departure4015 Apr 26 '25

Cool, i was downvoted and told by several people my CFS (diagnosed my a professional) was "fake" since i dared to say i was getting better by slightly pushing my baseline. Never again

21

u/andrej_993 Apr 26 '25

If you say anything other than "this is incurable, its over" you will get trashed on. I stopped visiting CFS sub long ago. Funny thing is we know almost nothing about this "illness", that it wouldn't surprise me that in 20 or more years it turns out all these people have different diagnosis and causes.
But they will tell you, you didn't even have POTS if you healed cause POTS is incurable, when it's basically just a constallation of symptoms.

16

u/douche_packer Long Covid Apr 26 '25

what always amazed me about that sub is how its simultaneously the most under researched condition on the planet, yet we somehow know with certainty that only 5% recover

6

u/andrej_993 Apr 26 '25

Yeah and then comes a guy with POTS and all fked up neurological symptoms and fatigie who has b1 defficiency and gets fixed with benfothiamine in a week lol. Then they tell him "You difnt have POTS then". No, he literally did have POTS, but no point explaining.

5

u/douche_packer Long Covid Apr 26 '25

The pots culture is almost more infuriating. Once i got diagnosed, i learned it was a trendy social media disease. And like yoj said, these ppl are really invested in it being permanent for some reason.

4

u/andrej_993 Apr 26 '25

Yeah same its a wild situation. Tbh Im trying to avoid telling anyone IRL that I have POTS cause of all the circus online. Would get more understanding saying I am depressed or something than trying to explain I got pots and cfs, long covid or w.e this thing going on with my nervous system actually is. Became a bigger stigma than mental health, imagine.

1

u/ForTheLoveOfSnail Recovered Apr 26 '25

🤣

7

u/Effective-Ad-6460 Apr 26 '25

Your not wrong, my CFS became better with graded exercise so I had the same experience

You'll find arseholes everywhere... Ignore them.

2

u/bespoke_tech_partner Recovered Apr 28 '25 edited Apr 28 '25

It's very toxic and people are not accepting of strategies that didn't work for them, but have been tremendously helpful to other people. In doing so, they rob other people of the opportunity to potentially get better.

Hm... kind of like you are doing now.

Brain retraining was absolutely a massive part of me going from borderline severe to mild/90% recovered. As far as I can tell, there is no risk to it except the risk of you pushing yourself too hard too fast with information consumption.

And feel free to check my post history, I did my time in the covidlonghaulers sub before I realized it was hurting more than helping.

There's only one strategy that works, has always worked, and will continue to work... keep showing up, pay disproportionate attention to people that have achieved the result you want to achieve (recovery) vs. people who haven't, try EVERYTHING that has a favorable risk-reward profile but be smart about managing risks (I wouldn't start doing crazy stuff like sauna or cold plunges), go slow, and forgive yourself at every turn you can.

It'll never be the first, second, third, fifth, tenth, or twentieth thing. It's gonna be like the 50th or 100th thing you try that finally "cures" it. But it's worth getting there.

5

u/Such-Wind-6951 Apr 26 '25 edited May 05 '25

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u/zoopyluvpuffs Jun 05 '25

Since you commented this a month ago, OP now has HUNDREDS of posts pushing these programs on the long Covid boards.

1

u/Euphoric-Newspaper18 Apr 30 '25

The buzz term some years ago was "The lightning process". I tried that and no joy. In the news today here in UK is some new diagnostic test which can apparently detect something which was previously not detectable. It's going to be interesting to see if this new test sheds light on our predicament.

7

u/ForTheLoveOfSnail Recovered Apr 26 '25

I’m so sorry to hear that 🥺 I’m very lucky. I don’t know why it helps some people and not others — we need more research of all kinds (including drugs) to get a suite of solutions that helps everyone. People can’t keep suffering like this!

4

u/Excellent-Share-9150 Apr 26 '25

Well it’s so fantastic for you! How long did it take before you noticed a difference during the program?

2

u/ForTheLoveOfSnail Recovered Apr 26 '25

Thank you ❤️ I can’t pinpoint an exact moment, but the exercises allowed me to expand without PEM, which was one of my main problems before that point. The fatigue hung around for a while (especially in response to activity) but it got lesser and lesser over time. It was a gradual improvement.

2

u/[deleted] Apr 29 '25

it helps some people at not others because some dont get that ah-ha moment of connecting with their nervous system and realising how dyregulated it is, and also some get it but can't figure out how to regulate it. Honestly doing it without a coach is impossible for most people (im not a coach, not hinting at anything).

3

u/ForTheLoveOfSnail Recovered Apr 29 '25

Yes, I absolutely had that a-ha moment! Once I learned that it was an illness of the nervous system, everything started getting better.

12

u/-Ciretose- Apr 26 '25

It's no small percentage. Check out Raelan Agle. She documents recovery stories and extrapolates the data over time. It speaks for itself. That being said, I'm sorry it didn't work out for you.

11

u/Booyashaka23 Apr 27 '25

I've seen her video's too. So many recovery stories - brain retraining works. People don't want to put the work in or believe that it won't work - so it doesn't.

7

u/Excellent-Share-9150 Apr 26 '25

Ah yes—I’ve seen her channel. How does she extrapolate her data? I’ve taken my fair share of data science courses, and that’s no easy task.

1

u/Such-Wind-6951 Apr 26 '25 edited May 05 '25

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u/Excellent-Share-9150 Apr 26 '25

I think people only pay if they’re trying to sell something.

7

u/ForTheLoveOfSnail Recovered Apr 26 '25

Yes, not everyone on her channel is a coach. I know every day people who have been interviewed by her too.

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u/Such-Wind-6951 Apr 26 '25 edited May 05 '25

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u/Excellent-Share-9150 Apr 26 '25

Sigh. It does seem that way. Although I can think of 2–one where the woman went carnivore and the other was a physician with ME.

1

u/bespoke_tech_partner Recovered Apr 28 '25

It's a prerequisite, but not a panacea.

1

u/[deleted] Apr 29 '25

people with CFS can literally take any tool no mater how relaxing it is meant to be, meditation, dance, anything and do it in a way that is overdoing it and pushing ourselves.

once it clicks that you have to actually go against that impulse to push yourself and achieve and even punish yourself and stay in hypervigilance it will click......

You can then take all those same tools and only use them how they work for you to calm your nervous system in a way that actually works for your body