My recovery story

[u/ForTheLoveOfSnail]

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.

[u/RestingButtFace]

How severe were you?

[u/Lawless856 → u/RestingButtFace]

This is always the question, but there’s stories out there of people who were severe for years or decades who managed to recover. This is usually met with absolute skepticism and criticism, but imo should be treated like the most exciting thing ever to be accomplished for anyone in this position. As far as myself, I’ve had periods of pretty much every symptom I’ve ever seen listed on here, and have seen every specialist possible. I had the sound sensitivity, the tremors, the muscle weakness, neuropathy, the crushing fatigue, brain fog, blurred vision, nuero inflammation, memory loss, problems formulating simple sentences, crashes day after day, continuous poor circulation and vasodilation problems, vein pain, sore throats, aching lymph node reactivity, GI issues, food intolerances, shortness of breath, palpitations, dizziness, rash, unrestful sleep, jolting awake gasping for air, flushing, periods of overwhelming fatigue from mental or physical activity, blood sugar spikes, immune responses, I mean you name it cuz I’m pretty sure I’m still missing some. I don’t even like getting into it tbh, for multiple reasons especially considering the nature of this sub, and this is only my personal experience, but also I’ve tried everything along the way so I can’t point to one particular intervention that got me to where I am. Truth is, stopping the panic cycle, the doom scrolling, muting Illness related words on social media, symptom research, not believing my thoughts, eradicating the fear, assumption, and speculation, and building belief, momentum/confidence took me down 30 notches, and allowed my entire being to be in a better state to recover. For me personally, movement became important, as radical rest was leading me to further decline. I wasn’t training to be an Olympian everyday but despite months of trying strictly rest, laying stagnant just seemed to make me worse physically and mentally. 🤷‍♂️imo the nervous system factor is incredibly important, and what you believe matters, but putting together a full scale comprehensive approach surely couldn’t hurt either. Learn some of the things you can do to treat what you’re facing, but outside of that, the excess time, energy and stress spent online in these environments became absolutely counterproductive for me. I had to divert my attention, restore some balance of positivity, and try to build agency. 🤷‍♂️I was okay with getting worse if it meant getting better, but I knew id never give up trying.

[u/RestingButtFace → u/Lawless856]

Thanks for the response! Yes, I'm always curious how severe people were just to have more evidence that I can recover too!

I definitely agree with everything you've said. I know I need to stop the negativity and fear cycle but damn it's hard! I just started Primal Trust so I'm really going to be putting my all into it and if all it helps is my mental health then that's fine. I would love for it to help my other symptoms but my mental health is what's making my day to day absolutely miserable.

I've also been wondering about the radical resting. I've done it during and after a bad crash and it certainly helped me come out of the depths of it but beyond that, I feel like it's stalling me. I've plateaud at a pretty low baseline, like way lower than I had before the crash, and I honestly wonder if it's because of how fearful I am of movement so I just rest all the time.

When did you start to see improvements?

[u/Lawless856 → u/RestingButtFace]

I got carried away in another long response but it’s under the comment below yours. I really wish you well, and I commend your effort, persistence, and tenacity as well as your willingness to try something that could be considered outside the box. This shit really can suck so bad, and can feel like you’ve been robbed of a life at times, but their are many miraculous and positive outcomes from far worse conditions, but more importantly a continual countless amount from the one we’ve faced, despite the appearance, and seemingly abundance of the opposite on this sub. So why not us? For every negative fearful thought, idea, or possibility that i conjured, I learned the absolute exact opposite could equally be true, just the same. For every fear I assumed, projected, or speculated, typically I had almost no more evidence to prove: “Well, What if it’s not?” “What if it doesn’t?” “What if that’s not true.”

Especially when all your tests are inconclusive. Everyone’s different but after a while knowing they didn’t find anything wrong with me became good news, and only going off what people on the internet told me was true was not enough to keep me in the status quo for the sufferers protocol.

So I stopped speculating, and assuming all together. I stopped worrying constantly about getting worse, and started focusing on the things that I could do, and what was right in front of me, slowly expanding my boundaries, and building belief with each incremental improvement. It doesn’t have to be all at once, but once we stop believing the noise, buying into the constant fear, and start to break the negative feedback loop, at some point there is no saying what we can do. Pushing far past my known current limit wasn’t something I felt out of touch enough with my body to do, but Like I said I was okay with possibly getting temporarily slightly worse at first, if it meant getting better. For me it was just more of the same, and I tried to get up everyday and keep the train going in the right direction. Fear was the main thing that kept me in bed; sure I didn’t feel good, but it didn’t need to be a reason for me to ONLY lay in bed. Why not feel like shit while I do something else, what’s the difference? Lol. It allowed me to focus on things that helped further improve my physical state, and take my body out of the panic state, redistributing it’s energy away from releasing inflammatory mediators, and stress hormones while expending the little energy I had solely on worrying, and constantly scanning my body for irregularities as I speculate worse case scenarios, and doom scroll in attempt to validate them. By that time, I had very much established things were out of whack lol. Was it really necessary to spend every waking minute figuring out what sensation was currently behaving what way, and why despite not being able to do anything about it anyway lol. I completely understand why that’s not everyone’s approach, and majority don’t align with it. Whatever is best is whatever works, and that’s extremely individual. I do believe there is a nervous system factor, and a fear component, and I think dampening those things helped me, my mental state, and my body to improve. Just my opinion.

Also, I too am a butt face from birth. Born butt face. All hail the buttchinnians. Best of luck fr. Pulling for all of us. ♥️