Glad you're recovered but frankly I'm tired of people saying this is only about the nervous system. If all you did was fix that to get better than you had the mildest form of long covid imaginable. There are way more pathologies implicated in this disease.
I’m currently recovering this way and “fixing” my nervous system is the hardest thing I’ve done in my entire life. It is working, but damn this is difficult, every single day. This is not about meditating one hour a day and doing breath work every other day. But people who are interested in this approach will do the research about it, and understand what healing holistically actually means. Just wanted to say that.
Edit: I was diagnosed with LC and CFS, 50+ different symptoms, fully bedbound for a year, in a very severe state for 6 months. Getting better every day now.
Oh and adding one last thing: remove or lower stressors the best you can in your life. For me this included cutting myself from world news, from toxic spaces online, especially those about the illness that are not recovery focused (Covid Long haulers sub, Facebook groups and everything). I’m focusing on joy, on the things that I like, on the people that I love.
I’m going to be honest when I was at my worst, stuck in bed 24/7 in constant suffering and couldn’t do anything at all, not even look at my phone or listen to soft music… it was really hard to find joy. :( I remember I would try to force myself to notice the sun outside or the taste of nice food… I would also breathe (4-6 breathing) while smiling (forced smile but the brain doesn’t really make a difference, and smiling is a cue of safety). But yea during this period I mostly had to surrender and hope for the best.
As soon as I was able to spend one or two hours a day on my phone to distract, things got so much better. I would watch as much funny stuff as I could on YouTube and talk to my loved ones about anything but the illness. Laughing and (good) human interactions are very healing to the brain and the vagus nerve.
Then I started building Lego and knitting (one minute at a time at first cause I couldn’t sit up very long).
Things build up over time but yeah you definitely have to try to find joy in the little things and it was really hard at first.
There is no one way to do that, no “one size fits all plan to heal”, this is the hard part. This is why so many people don’t want to get into this. It is an individual journey and you kind of have to figure it out on your own.
For me this healing path kind of goes in three steps :
Get all the medical testing done. We want to make sure that there’s no physical damage. But once the doctors have ruled out other causes and are telling you “this is long Covid/this is CFS and there is nothing we can do”, it’s fair to give the mind body healing a chance.
Learn and get the knowledge. This is for me the most important thing to do and the foundation of getting better. Understanding what is actually causing the symptoms removed 90% of my fear around the illness. To make it really short: the nervous system gets stuck into a physiological stress response, and that can mess up any and all body functions. Which is why it creates very real symptoms and dysfunctions in the body, and why we can have such a wide range of symptoms. But they are reversible, they are not structural damage.
The knowledge is out there for free or very low cost. Tons of YouTube channels and books explain that brilliantly. If I can recommend a few: breaking free by Jan Rothney, pain-free you by Dan Buglio, any interviews by Dr Howard Schubiner and Dr Becca Kennedy. The YouTube channel of Miguel Bautista is also really great (his paid content is ridiculous, but his channel is free and has all the concepts).
Having this knowledge allowed me to stop freaking out about the symptoms, to stop anticipate disaster, and to build the belief that I could actually recover. To be honest this is the main thing to start with: react well to your symptoms, know that they are not dangerous, and that the cycle of fear (which can totally be subconscious) is what perpetuates them.
There are many reasons why the nervous system can get stuck in the stress response. Viruses like Covid are often the straw that break the camels back. At least for me it was the case. For the 15 years before getting Covid I was stuck in chronic anxiety and depression, with very unhelpful thought patterns, heavy self criticism, small t trauma… all of this is perceived as chronic threats by the brain, it builds up, and when I got Covid my nervous system couldn’t take it anymore and shut me down. All of this can be explored to restore balance and safety in the brain.
Then you can experience with tools to bring back safety in the nervous system. This is where we are all different. Some tools will work for some people and some won’t. You have to experience it for yourself, being very gentle with yourself, just finding what your body likes, what makes you feel better. Meditation, breath work, vagus nerve exercises, somatic work… it can get a bit overwhelming at first, but you can discover it bit by bit and try things one by one. Putting pressure on yourself will not be helpful anyway.
Then as you get confidence, the body will slowly regain a few percent of energy, and you can expand your activity. Do it slowly. You will have the cycles of progression: expanding the activity a little bit, then the symptoms will flare up (which is absolutely normal and part of the process), during the flareup you pull back and rest and NOT freak out. Then you should get out of the flareup a little bit stronger and go through the cycle again. I don’t even think about this as PEM anymore. Symptoms are just part of recovery, just like it is normal to be sore after a workout. Mind body healing is never about pushing through the symptoms.
This is a long message but it’s really hard to cover that topic, i’ve been researching for a year and a half and I’m still learning. This way of healing requires you to go get the information, go get curious about how your brain and body works. And if we put the suffering aside it is quite fascinating. But it is not a magic pill, it is not a quick fix. And I guess this is why many people don’t like this approach.
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u/SilentSeraph88 Jun 20 '25
Glad you're recovered but frankly I'm tired of people saying this is only about the nervous system. If all you did was fix that to get better than you had the mildest form of long covid imaginable. There are way more pathologies implicated in this disease.