r/cfsrecovery

I’m a few months into post viral fatigue (Covid) — currently bedbound bc of dysautonomia/fainting issues + weakness and sensory issues causing PEM.

I’ve been in PEM for the last 3 weeks — unsure if rolling or a crash — despite cutting back all activity. Now am dealing with adrenaline when I wake up, go to sleep, and throughout the day. Sometimes it alternates with the heavy PEM type fatigue. I’m afraid it’s masking the PEM and I’m overdoing it more (although how, when my day is just bed with earplugs and eye mask?)

What has helped y’all get out of that buzz/surge cycle?

What I’m already doing: breathwork, yoga nidra, vagus nerve exercises (humming, tapping) and I take a beta blocker (prescribed by cardio). Can’t tolerate much light or sound. Thanks in advance!

I talking about people who REALLY got into it and REALLY tried for a long time. Did you see any improvement? What kind of program and techniques did you use?

This morning I felt incredibly ill upon wakening, very nauseous just lying in bed. Last night I had done a hot foot bath which I have done in the past, but never felt this way in the morning.

A few days ago I got up for the sofa and went upstairs to use the bathroom, I immediately felt faint and had to lay down.

I know I shouldn’t “symptom chase” but I want to understand this more. This is not like me to experience this really considering how far I’ve come but yet I do these few things and my body is struggling.

I have been “active” with my partner recently too and was incredibly unwell the morning afterwards. Like I was spent, nauseous too.

Hopefully that makes sense

Any thoughts would be appreciated

TIA

Has anyone experienced increased functional capacity but have worse symptoms overall?

For example, I can walk a tiny more than before or stand and get food from my fridge where I could not before (the fatigue was just too much).

But now I have windows where I can do these things. Like put my dish in the sink. Or ride in a car.

But my symptoms in general are soooo much worse. Headache, nausea, pain, muscle aches, brain inflammation feeling, malaise, have all ramped up. Im more miserable than I was even 2 months ago regarding symptoms, although my crashes have been less severe. I just had more good moments 2 months ago and more clarity, but less functionality.

I am one of those unlucky people that has never been able to find a baseline no matter what I do. Ive tried radical resting, gentle nudging, brain retraining, and do nervous system work every day (somatic tracking, yoga nidra, grounding techniques). But no matter what I do I still crash for a significant part of every day, so Ive just kind of accepted this tornado baseline because it seems like theres nothing I can do about it except keep calm, carry on, and let it sort itself out.

I do want to say that I can attribute any improvement to two medications that I take - suppressive antibiotics for an embedded infection and fludrocortisone (life saver). So maybe thats the reason I improved functionally but everything is a mess under that?

So I dont even know what to think. Is this normal for recovery?

I'm 4 months into PVF recovery and thought I would evade this problem but I'm in 3rd trimester and pregnancy insomnia has hit me hard. I know it's gonna be really bad for months like last time...

Does anyone have any advice on how to deal with insomnia? I am still couchbound, full recovery seems far away, but many symptoms have improved. My worst symptoms are neurological and crushing fatigue. Has anyone still managed to recover despite getting very little, broken sleep each night? I've been doing all the sleep hygiene and supplement tricks for months and they stopped working, now not even sleeping medication seems to work.

Nobody has all the answers yet, but the picture keeps getting clearer.

Prompt: Share something you learned about recovery from a book, article, podcast, video, research, or your own experience.

Curiosity counts. You don’t need to have it figured out to share.

First time taking Sumatriptan for migraine relief and it works really really well.

1 tablet 50mg has greatly reduced my migraine during a PEM episode.

Thought it would be helpful to share for those who also struggle with migraines.

Does anyone/everyone else get this? It seems to be a feature of my PEM. It isn't just a sort of low mood as a result of the situation. It's more like my system saying "Turn everything off - energy, health, motivation, mood, the lot. Keep him in bed. Make sure he doesn't try to go out enjoying himself."

It tends to last the duration of the PEM crash, which is generally around 2-4 days for me, and then I bounce back. Everything comes back online at once, including good mood.

This is really interesting. In short, they irritated people’s skin then told half of them to pay attention to the pain and itching while the other half were distracted.

The group who paid attention had waaaay less inflammation and the irritation resolved quicker. The group who were distracted had less immediate pain but more severe and longer inflammation. This was true even when lidocaine was used so it’s not just the pain signal itself- it’s the attention to it.

It shows that attention can influence immune response. It’s a leap but this could be one of the ways in which yoga nidra and body scans help people. They hypothesise it could be a component of chronic pain conditions. They also hypothesise both immune activity and parasympathetic activity are involved in the observed results.

Great new line of research. I hope someone studies this in wider contexts.

https://www.nature.com/articles/s41562-026-02541-1

I'm just so tired of trying to heal. I'm tired of nervous system work, new techniques, better mindsets, watching my thoughts, regulating, breathing differently, doing another exercise, finding another pattern to work on. I'm tired of constantly wondering if there's still something I'm doing wrong. Honestly, I just want to let go. I don't want to do anything anymore. I don't want another technique, another practice, another thing I need to work on. I just want to surrender. Let go. That's it. And I don't mean give up on life or lose hope - but just let go. Maybe that's exactly what my nervous system needs. To simply stop trying to get healthy. To stop doing things to somehow make myself better. To stop trying to improve my mindset, my attitude, the way I think, or whatever else I'm supposedly meant to improve. Maybe if I just stop trying to heal and stop trying to change anything, my nervous system will finally realize that it's safe and then healing can happen on Its own. Maybe l'll still meditate or do some parts work occasionally when I genuinely feel like it. But honestly most of the, I just don't want to do anything anymore. I just want to let go, und do the best with my life that I have in front of me I have ME/CFS, MCAS and migraines, and I'm wondering: Has anyone actually recovered through surrender? Through simply stopping the constant effort to heal, accepting what is, and letting go? Or do you know someone who has?

How do you guys stay positive on bad days? Talking specifically those really bad and hard emotional days. I'm trying my best to keep a positive attitude, but it's really challenging at times, but I don't want to just give up either.

I’m really depressed. My life feels over. It’s been over a year and starting 4 months after I had my baby. Thyroid and bloodwork is fine. They said mold but I’ve moved out of mold 3 months ago and still no better.

I've been on my recovery from PVF for 4 months now. I had my second major crash a week ago, came out of it and for two entire days felt 80% recovered. Weak, deconditioned, not exerting myself much more physically, but it felt like my body and mind functioned completely normally. Then the fatigue and symptoms came back.

Is this a sign I'm getting close to recovery? I want those two days back, it felt such a relief after months of symptoms, like drinking cold water after wandering in a hot desert. I'm also 7 months pregnant and I just wanna recover to be able to give birth😭

Tl;dr looking for recovery resources that acknowledge and work with the reality of delayed and often unexpected PEM crashes, rather than symptoms flaring during activity

I’ve found that so many programs seem to talk as if symptom are something that only happen *during* activity, when in reality, if you have PEM which is literally what defines CFS, the symptoms happen later, sometimes much later, *after* activity.

I had a lovely day yesterday, went outside and actually did some things, I felt great all day, I woke up today a little tired, and now tonight the PEM is hitting. I wasn’t even expecting to get PEM from it, but here it is. The poisoned feeling, the fatigue, the slowed digestion, and worst of all the horrible itching headache and brain fog.

If a recovery program is going to work I need it to actually address the reality of how sick you get, and how PEM works. Because I’m not feeling bad or super activated *during* activity. So I can do all the “re-training” I want *during* the activity but it doesn’t seem to effect the PEM later. And I’m not feeling bad directly after - in fact, my mood is usually greatly improved and I feel the most relaxed that I ever am after I get to go do something. It is only the following days that then suddenly I am incapacitated and so so sick. This is literally my entire illness. I mean there are other symptoms but they do not disable me the way this does. This is the reason my whole life is gone. This is the primary mechanism of the illness and yet nobody who teaches about recovery seems to actually address that process of the delayed and often unexpected crash. In fact a lot seem to avoid the word PEM like it’s not worth talking about but it is in fact, the entire sickness. Like, the whole problem. Without it, I would just be someone with regular fatigue and vertigo and POTS and food sensitivities. Which would be wildly more manageable.

Has anyone tried the Perrin technique for ME/CFS? The idea is that constant lymphatic drainage helps to ward away the fatigue and improve symptoms. There are several books about it and some protocol online.

Has anyone heard of this or tried it? Let me know!

What are your favourite somatic tracking meditations to listen to? Or any apps/creators you find helpful?

I’m constantly exhausted (have spent the last three months mostly in bed). I have bad days where the flu like symptoms / body pains / whatever new symptom wants to visit me are worse but can’t seem to correlate back to the source. Are these the flares or is this one long consistent crash/flare? I’m doing all the things to get better but don’t know if I should risk trying to do certain everyday tasks (like making food) without aid. How did you figure out was “baseline” was for you? Thanks

I am currently in a very bad PEM.

I tried to do somatic tracking but focusing on my symptoms, even with curiosity made me see how intense they are, and so I am scared it may damage my baseline.

As it can be the case with all PEM as far as I know, I don’t understand how we are suppose to not fear them

I get the everyday techniques, eg you say to yourself my body is healthy my brain is safe, self-dialogue etc. But what about when objectively things occur - e.g you don’t sleep well multiple nights or you exercise much more than usual. There are times when no amount of compassion is going to change how the body is feeling because something has definitively changed (albeit not in a dangerous way) even for someone without a neuroplastic issue. How do you decide it’s best to try and stretch previous limits and reassure vs say actually I need to slow down again in x situation eg (lack of sleep).

It seems obvious, but it’s not if you have a neuroplastic condition because it will often overrespond so it’s tough to know how much to slow down if at all If you’ve underslept hours 2-3 nights in a row, obviously even a ‘normal’ person would feel different than if they have 8 hours. Or when exercising more, a normal person might feel some sensations indicating sore muscles.

How do you manage, in terms of distinguishing and self talk? Often obviously objective things can happen at the same time as neuroplastic thing so it gets murky. What techniques are people using to navigate these kinds of situations?

Edit: r/MECFSAustralia has been created. Head over :)

Been challenging to navigate this condition, particularly in a country with out-of-date guidelines (e.g. GPs still recommend GET) and seemingly not many practitioners that stay up to date with the latest and greatest research.

Please direct me to the subreddit if it already exists, but was thinking it might be useful to have a centralised place to visit to keep track of things like:
- current/future clinical trials in Australia.
- latest research findings.
- doctor recommendations.
- recovery stories.
- more.

Edit: If there’s enough interest, I will get this going soon, and do a call out for moderators. Please feel free to get in touch prior with any ideas/suggestions.