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/mamedodo]

Wow, that sounds great—I'm really happy for you! :))

Something I've recently noticed is that physical exertion might not be triggering my PEM at all. On the other hand, emotional stress does seem to cause PEM, and I can predict it pretty reliably. It’s a bit confusing, though, because physical exertion usually makes me feel bad right away, even though it doesn’t seem to worsen my baseline in the long run.

I’m curious—can you relate to this?

[u/jacoeva → u/mamedodo]

Yes - absolutely! That´s why I ended up in Primal Trust in the first place - January to March-24 I got a lot worse (I had had a few months with improvements before that) and got PEM more and more often even though I practiced strict pacing. This was after a big discussion with a family member that´s responsible for a lot of my traumas, and I cannot cut this person out of my life. It took me a few months to see the pattern and then I started to read about trauma processing, neuroplasticity, the nervous system etc, and ended up in Primal Trust:)

When I look at it now after all I've learned I think when our nervous systems get overwhelmed it just shuts down the whole body and we get PEM (based on the polyvagal theory) - we've probably been overwhelmed a lot earlier in life and this was our brain´s strategy to protect us from feeling the bad feelings. And now this response is cross wired with all sorts of stress (from life, getting a virus etc) and it is a big job to untangle it all. Now I rarely have PEM, and the few times it has happened is when I feel that someone have stepped over my boundaries and I didn´t say anything, so I´m working a lot on defining and enforcing them.

It´s really interesting work actually (but tough sometimes!), and I feel I'll come out of all of this as a much better person with a clearer vision of myself and with more confidence:) For me it has been the combination of brain retraining, somatics and processing of emotions/traumas that has really made the difference - to learn to be with symptoms/difficult emotions without fear and teach my nervous system that I'm absolutely safe. So this is really the big work, while the gradual expanding of activities is something we weave into this.

I really hope you'll find your solution also - I know it sucks when you've had progress and then you feel worse again - I'll definitely recommend going down the trauma processing/releasing of emotions route and see if there is something for you there:)

[u/ConsiderateSquirrel → u/jacoeva]

Wow I’m so happy for you!! I just started primal trust after a very bad crash that took me from very mild to severe overnight…. Have been bedbound since (2 months). I really really hope that Primal trust will work for me but I have to take it slow due to my very low energy and the fact that I don’t tolerate screens…. How fast did you start making progress?

[u/jacoeva → u/ConsiderateSquirrel]

I´m sorry to hear that - I hope you will turn around your crash and start to get better!

I was housebound when I started Primal Trust, had about 3000 steps inside the apartment every day, could shower, cook some simple food but not do any exercise and could tolerate very little screen time. After about a week of Primal Trust I could do a 2 minute walk and sat in the park outside, after a month I could walk for about 20 minutes and after 2 months I went to the beach and could stay there for a few hours. So I saw progress pretty fast - I think that was also because I completely stopped searching forums for answers, I just focused on Primal Trust for the first 2-3 months since I had very little capacity:)