r/cfsnervoussystemwork

I’ve developed Long COVID since a fairly severe infection 3 months ago (required a brief hospital admission). Dealing with POTS/dysautonomia, fatigue and cognitive symptoms plus worsening of my chronic migraines.

I’ve started listening to the audiobook version of The Way Out after reading a few posts in LongHaulersRecovery that mention it. I find it really interesting and it makes a lot of sense - my background is in Neuroscience and I have been suspecting that my body has been stuck in fight or flight mode which explains a lot of my symptoms.

My main question is though, how does one apply PRT strategies to long COVID without triggering PEM? I’ve messaged one of the people who used PRT for their long COVID successfully but unfortunately I got no response.

If you had success with this, I would love any tips! Unfortunately cannot afford anything expensive like DNRS at the moment so looking for affordable or free resources.

Thanks!

I don't know about my severity level but I'm housebound for the last 3 months , earlier i used to do basic self care activities only otherwise laying flat on the bed for the whole day. now i can go upstairs whenever I want to, can watch tv for 4- 5 hours n stay upright most of my day but still can't read for the pleasure. I expanded this much naturally n slowly while doing regulating exercises

However I'm struggling to expand my activity level beyond the house. How should I expand? Shall I try to be more functional at the level of the house itself? Or look to add more mind body exercise?( I spend 2 hours of my day doing the exercises) How shall I go further.

Hey all,

I did a post on my recovery journey recently and got quite a few DMs and also comments on the post asking for more info on what I did, what nervous system work/mindbody work is, resources etc.

I spent a fair bit of time responding with basic principles, pointing to resources like books, YouTube videos, etc., however it is never a really comprehensive answer especially for those who just heard the phrases "nervous system work", "brain retraining", etc. for the first time.

Is there somewhere beginners could be directed to where a lot of this info. exists in one place? Could we create one?

I know every journey is different - some use DNRS, some DIY it, and there's no one-size solution, but when people ask "What is nervous system work", the answers are often vague. If we could say "Read This Document" I think it would have massive value.

I've considered typing up a document on the exact, step-by-step process I took to recover (not 100% yet though), but it would be hugely time consuming and again, individual.

Thoughts?

Started brain retraining for my moderate cfs, and sensitised nervous system around beginning of may. It was going great the first few days, but by about day 4 or 5 i seemed to go into a flare up of new symptoms id not had before. These includes nausea, mood swings and depression.

Im trying my best not to be bothered by the symptoms, not giving them any fear, but ive also never heard of these ones specifically from mind body work. Is this a normal experience to last more than a week? And does anyone know whst my next steps should be, perhaps scaling back a bit?

Hi. I've been improving a lot thanks to mind body work in the last year and a half. I've also been on LDN (1mg).

I'm currently attempting to stop taking it. I feel stable enough and I want to assess how much it's still helping (or not). I already skipped 1 dose several times before (no issues). I'm at 3 days without LDN and for now there's 0 change in how I feel or my energy levels.

I know LDN itself doesn't cause withdrawal but of course my symptoms could increase again if LDN was actually helping more than I thought...

Anyone went through this with LDN? I'd appreciate any encouraging stories. Thanks.

Edit: I'm not asking for medical advice or advice about LDN, just for experiences of people who took and then stopped LDN alongside nervous system work. I hope it's okay.

what it says in the title. (sorry mods if this is too negative — I’m genuinely looking for advice and don’t want to discourage anyone.) I was recovered for several months thanks to mind body work only to crash again after extreme stress. I can’t get rid of the stress entirely because I have no choice but to move house next month. the thought of having so little energy again, of basically being couchbound (which I am as of yesterday) and having to go through all this again is unbearable to me. i know this is the only way out and yet I feel almost angry towards it because I relapsed. my confidence is shaky now. does anyone have any advice for how to deal with this? It’s almost worse than it was the first time. I can barely use my phone for half an hour and am trying not to panic. I can calm myself down but then the emotions are repressed. are there any videos or recovery stories that deal with relapse? what should I do?

Hi everyone, I’m returning to mind body work after having a relapse and am finding that with the exception of Ally Boothroyd the meditations I used the last time I got well aren’t doing it for me anymore. I’m looking for some somatic tracking videos and loving kindness meditations I can do after my JournalSpeak but am open to anything that can help calm the nervous system like IFT tapping or humming, things like that.

Thanks!