r/cfsrecovery

I have started my mind body journey for recovery from POTS and CFS over the last month or so and have gathered the following resource recommendations from this community and outside too. Can anyone tell me what’s the best spot to focus on in their opinion and which of these is worth spending money on? Or if anyone has personal experiences with any of these?

Curable app. I like it so far in my free trial due to the live sessions you can attend. But thoughts on continuing by buying the subscription?
FreeME
DNRS
primal trust
CFS health

Books-
* Unlearn Your Pain — Howard Schubiner
* The Mindbody Prescription — John Sarno
* The Way Out — Alan Gordon
* Breaking Free — Jan Rothney
* Back in Control — David Hanscom
* The Great Allowing — Sam Miller
* Tessa malcarne

This is a new symptom for me, after months of post-viral syndrome. My heart rate randomly spikes sometimes (like, if my resting is 65, my heart rate will suddenly jump to the 140s) and I feel like I’m going to faint. It reliably happens every time I take a shower, and it will occasionally happen when I go on walks. Idk if it’s POTS, but I also don’t care, because I feel like it must be psychosomatic since it randomly appeared 8 months into my illness! I also don’t think there’s any underlying lifestyle cause—I’m hydrated, sleeping enough, and have a healthy diet. Any mind-body tips to combat this? I’ve recently been trying to “welcome” my other symptoms and react with curiosity rather than panic, but the lightheadedness kind of overwhelms my senses (and I also don’t want to faint and get hurt).

I was couchbound and feeling lots of fatigue throughout the day, so I decided to try creatine. After some days I became so full of energy.

It made me sleep better and wake up feeling so rested. I don't have to lay in bed anymore when I wake up, I can just get up in 5min of waking up. My brain fog is completely gone. I'm just so full of energy I don't even know what to do with it. Like I think it's too early to exercise but I feel like I could go for a jog if I wasn't so deconditioned from months of being bedbound.

I didn't know creatine is such a good supplement. I guess it's considered the no1 supplement for a reason. Combined with nervous system work this is so effective that I haven't even needed to try the LDN I got as a prescription.

Hi, recently I read a lot about mind-body theory and it really resonated with me.

But I can’t wrap my head around how to retrain the subconscious mind when it can’t be accessed directly.

How people can get better if they’re severe like me, lying in bed?

How to retrain the brain response when we basically are paralysed?

Also I have seen a lot of talk about the reason why we get this, but very little concrete solutions how to get out.

TL;DR – Long post.

I need to get this off my chest because I don’t know how much more of this I can take.

Three years ago, after COVID, I developed what I now know was Long COVID. Back then, nobody in my country knew much about it. No doctor warned me about pacing or post-exertional malaise. I was never told that pushing through could make me permanently worse.

Looking back, I think I was still mild. I had exercise intolerance and I felt that something was very wrong, but I was in complete denial. I kept trying to live my life. I took beta blockers and sleeping pills just to get through the days, convincing myself that if I rested a little or waited long enough, I’d recover.
Instead, I kept pushing and crashing.

Crash after crash after crash.
I didn’t understand what was happening to my body. I had no idea that every crash could be making me sicker.

Today, I am severe.
Almost every tiny movement can trigger a crash. I wake up with a racing heart and pounding palpitations. Even normal movement makes my heart feel like it’s trying to beat out of my chest. It feels like all the strength is being drained out of my body.

I’ve been in what feels like one continuous crash for nine months, and I can’t find my way out. I spend almost all my time lying in a dark room, but even that doesn’t feel restorative anymore. My body is exhausted, yet my brain won’t switch off. I can’t get refreshing sleep, and I feel trapped in this horizontal life.

The hardest part is that I even have to pace socializing. I miss my friends so much, but if they come over, I often crash afterwards. The adrenaline keeps me awake, so instead of feeling happy after seeing them, I end up paying for it physically.

The pounding heart has always been one of my crash symptoms, but now it feels different—stronger somehow. I don’t understand why I never seem to improve anymore or what keeps triggering these crashes. It’s terrifying because I can be lying completely still and still feel my heart pounding. Meanwhile, I know people whose resting heart rate is much higher than mine, yet they don’t feel anything like this.

The hardest part is looking back and wondering what would have happened if someone had simply told me about pacing three years ago. Maybe I would never have become severe. Maybe I’d already be living my life again.
Instead, I learned about pacing when it already felt too late.

Now I keep asking myself: how do people recover from this stage? If it takes years just to become stable, and there are no guarantees, how do you keep fighting? Even staying in bed doesn’t always make me feel stable anymore.

Anyone around me is shocked, and me also that i was unresponsible for my health. And there are no treatments. I miss my friends. Im used to suffering already but i want to be symptom free at least for a little bit. This is not healthy and sustainable anymore and sometimes i feel that i don t really care anymore what happens. My BF wedding is coming, im in crash, i know i could go for 1h but pay for it after.
I never feares my symptoms, my insomnia, my high HR, palpitations, that was the problem, i pushed tru it all the time.

The PTSD from countless crashes is becoming just as hard as the physical illness. Every symptom makes me fear another crash. It feels like my

life revolves around avoiding the next one.
Has anyone else gone from mild to severe because they didn’t know about pacing?

Has anyone spent months in what felt like one continuous crash and eventually improved? Is there still hope at this stage? I genuinely want to hear from people who have been through something similar.

Recently my skepticism has unfortunately been butting it’s head. I keep encountering “CFS recovery” stories where, when pressed, the OP admits that they didn’t actually experience PEM. This quite frankly pisses me off because you didn’t have CFS if you don’t have PEM. It’s a different disease without it. PEM is a crushing, flu-like fatigue that comes on 12-48 hours after exertion, at a disproportionate level to the exertion. For example, I walked 1000 steps without enough breaks in between, and as a result was unable to leave my bed for a week due to being extremely ill with symptoms as if I had a horrible concussion and the worst flu all at once.

Does anyone actually recover who has actual PEM? These people will list “PEM” as a symptom but then seem to waver when asked to actually describe it, or never describe it ever happening in their story. Anyone who has actually had PEM knows how it feels. It feels like being drugged. Like being poisoned. Like your brain genuinely stops functioning. Sometimes you cannot speak or tolerate the taste of food. I’m lowkey crashing out. I’m having a break in faith. I want hope for full recovery. Not just improvement. I hate this.

Edit: even the responses here that intend to comfort are just showing me what I fear. I believe that improvement is possible with PEM but what I’m scared of is that no one with true PEM reaches total remission, 100% recovery

I thought it would be a great way to increase connection and participation across the community by having a series of daily discussion threads where people at all stages of recovery could participate.

I just brain stormed a few prompts to give everyone a better sense of what I was thinking:

🌿 Mindful Monday – Share a meditation, breathing exercise, relaxation technique, journal prompt, or other mindfulness practice that helped you feel calmer or more grounded this week.

📚 Learning Tuesday – Share something you learned about recovery from a book, article, podcast, video, research paper, or your own experience.

🏆 Wins Wednesday – Celebrate any win, no matter how big or small.

🏔️ Grounding Thursday – Share something you’re grateful for, something that helped you feel more grounded, or a different perspective that helped you through the week.

🌞 Joy Friday – Share something that brought you joy or made you smile this week, whether or not it’s related to recovery.

🌱 Small Steps Saturday – Share one small goal you’re working toward or one gentle step you’re taking this week.

🌙 Slow Sunday – No prompt. Just a reminder that recovery can be exhausting, and it’s okay to simply rest.

What do you all think?

Do you like these prompts?

Would you change any of them or add different ones?

Would you participate in threads like these?

Would you prefer a daily thread, a weekly thread, or something else?

Any other thoughts or ideas about this?

The gist of the post is in the title.
The recovery sub for long covid is way bigger than this one despite there being entire influencers and content creators based around CFS recovery.
Why is that? Is the methodology of brain retraining so controversial that this sub is only 1% the size of r/cfs?

I‘m trying to ease off the r/cfs sub because as some of you have mentioned it‘s very negative and keeps me stuck in a spiral.

At the same time I have difficulties relating to posts in this channel because it seems like a lot of the people in here had Long Covid and have been sick maybe up to 3-4 years. And this should not at all minimize their ilness!!! CFS is horrible in every form!
It‘s just that I keep telling myself that what I have is not the same and therefore I won‘t be able to heal.

But I’m also sick of being stuck in this negative and hopeless thinking pattern. I’m almost certain that my way of thinking is also affecting the illness since I am always trying to be in control and always scanning for symptoms looking things up, trying to find quick fixes, etc.. I also know that my mind is constantly trying to find reasons to not believe in recovery.

I keep oscillating between trying to find hope and falling back into doubt because “my case is different than these recovery stories blablabla“

Can anyone relate to this and do you have any tips for me to feel inspired and keep the doubt away?

Extreme heat sets off my cfs. I have an ac in my room, but not anything effective throughout my apartment so it still affects me a lot. I'm better staying home than going out, but it is 90 degrees in my kitchen. Not sure if I'm making it up in my head, but I feel so exhausted everytime I leave my room.

I'm 100% convinced that my "cfs" symptoms come from suppressing my anxiety. Can I safely do nervous system work?

I cant live years in dark room, no sleep, adrenaline, elevated HR, i just want to go out and have fun. If im gonna do that i will end up back in bed, but whats the point for waiting? I cant even expand… like i dont care anymore what happens im suffering from years. I destroyed my body by not pacing. Now im just surviving. My baseline doesnt even exists.
My BF wedding is coming i am desperate to go.
Like who whas that unresponsible to crash and push themselfes for months with high hr adrenline insomnia?
I destroyed my health, now i cant even enjoy staying in the bed because there is no regeneration just stress on my body. Otherwise i would be stable; logically. Sounds, lights its too much. :((

Many (if not most) of the recovery stories I see are from people who were bedbound or severely ill for only a couple weeks/months. Or from those who were only mild/moderate for a short period of time.

I’m looking for recovery stories that I can relate to. Personally, stress and COVID triggered my CFS in 2023. I progressed from mild to severe over the span of 3 years. I’ve been oscillating between being housebound/bedbound for almost a year now, but mostly bedbound.

I didn’t figure out it was CFS until July/August of last year. Unfortunately I spent a lot of time on r/cfs since then and just got worse and worse. I seem to have a progressive form of CFS (a mindset I’m trying to get out of). I started nervous system work about a month ago and am currently reading books and educating myself to the best of my ability, but I still feel disheartened reading recovery stories from those who had much milder symptoms.

Does anyone know of anyone who was severe/very severe who recovered? Or where I can find such stories?

Hi everyone, so this is the second time for me using brain retraining, the first time was a number of years ago and I went with a (very expensive) coach. The first time for me didn't work at all, I felt like I was mentally in a battle with myself and ended up giving up on it. About 8 months ago I decided to try again, this time using AI as a 'coach', I told it the reasons that I didn't think it worked for me the first time and it gave me new techniques to use, this has improved my mental state hugely, and I would say I was about 90% recovered now. The problem I have is that I've felt '90% recovered' for about 6 months now, and I don't know what to do from here, although the AI has been helpful it can also sometimes contradict itself and offer confusing advice. I wanted to know how I can get to that 100% mark.

Basically I have gone from feeling massively stressed nearly all of the time to now being quite calm and feeling in control. I can do most things, but things that really exert me (things that make me out of breath or physically tired) will often cause a crash. Mentally I still feel quite foggy, poor memory etc, and this is something I really would like to get better.

I have read on here about people just stopping thinking they were sick, and their symptoms massively improving, has anyone done this and their mental symptoms completely went away?

Just looking for a bit of advice really, thanks for any help

I’ve been using curable recently and attending some of their live classes but a lot of the people and focus on that is on some pain, which I know I should substitute for CFs symptoms but was hoping to see if there are any groups, video classes, etc that are specific for CFS?

I would also be interested if there is like an accountability chat here in this sub to check in on helpful things (not stating problems repeatedly etc)

Thanks

First my background in case it helps:

I was diagnosed in my mid teens in 2014. I managed to lead a relatively normal life again after a couple of years but would feel it if I overdid it (e.g. I could only socialise one day a week and couldn’t work full time but as long as that was in place I wouldn’t crash)

I had an eating disorder from age 12-18 and managed to recover. I wasn’t ever sure if CFS was the right diagnosis and thought it was due to the low body weight and lack of feeding myself that caused my low energy.

By 2019 and 2020 I was working full time and going to the gym a few times a week. I was a healthy weight and feeling amazing. Still had to nap for 2-3 hours when I got home from work but I was living at home with family so didn’t have any other responsibilities

Then 2020 hits. I gain a significant amount of weight (I am a stress eater) and can’t go to the gym.

I catch covid in 2022. I’d never felt so ill in my life I thought I’d die. Couldn’t even get up to go to the loo. During that time, my aunt died suddenly and then two months later I got married.

Moved to a new area trying to make new friends and the flat we lived in had a black mould problem. I was constantly exhausted and stressed.

2024 we got on the property ladder and now in a much better place

The past year: I am now working 17 hours a week, although they have required two of those days to be in office and two at home. The office days tire me out a lot more but mainly mental fatigue as my job is desk and computer type job

TLDR starts here

Diagnoses: CFS, history of eating disorders, late diagnosed autism

Suspected: hyperextension/connective tissue disorder and POTS

Note: I was always mild/moderate CFS. I’ve never had to be bed bound and not had to take more than a week off work due to it

This past year I keep feeling like I am ready to reintroduce exercise.

I have lost 6kg out of the 15kg I want to lose

I walk my dog most days (if I can’t then my husband or family or friend can take him as we all live close)

However, every time I do something more than walking, I crash. Glands flare up, eye twitch, massive headaches, crying at everything

I still go to work but that’s all I do. Just sleep except for that.

For example, last Friday I went to the pool with my mum and mixed walking the pool length and swimming for about half an hour

I thought it would’ve been low impact and not affect me that much. I stopped when I was tired.

However now 3 days later I’ve had a flare-up

I don’t understand how I’m meant to introduce exercise or what to do. I want to do it for my health and strength as particularly my arms are quite weak

Has anyone had any success reintroducing exercise? What sort of thing did you do?

Sorry for it being so lengthy I just don’t always know what’s relevant.

I know many on here are far more severe than I ever was and so I’m worried that the fact I’m able to exercise will make others sad on here

My main physical symptoms are fatigue, burning skin and brain fog. It's pretty easy to respond well to them as they aren't harmful and I know my brain is in 100% control of generating these symptoms, so nothing caused by my actual body.

How do you respond well to mental symptoms though? Anxiety seems easier as you can sort of say "it's okay nervous system, lets calm down, we are safe" but what about depression and all the grief?

Some days I just try so hard to be positive but the depression encumbers me and I break down in tears. I will say things like "I just wanna get better, this would've not happened if I didn't catch that cold, it's not fair, I should be able to go outside and enjoy my pregnancy" etc. A lot of the thoughts/words are just pitying myself and being angry at others. After I cry I usually feel lighter, so I try to look at it as a good emotional release.

But man it sucks. Any advice?