r/cfsrecovery

For those of us who have to cook or somehow get food into our bodies ourselves, I found out about a very old practice called perpetual stew, where people would keep one fire going and just keep adding to one stew. As making food is my number one energy drain and something that terrifies me I wont be able to do, I decided to try it. I just put it in a crock pot. I can add new things whenever I want to, to keep it going and change the flavor profile, I don't have to do a lot of prep at once and there is hot food always available. I just started this so I dont know how well it will go, but it seems like a huge game changer and I wanted to share the idea around. its just important to keep it hot enough bacteria will not grow (above 140 degrees), to keep enough water in it so everything stays in the water which keeps the temperature even, and not to add too much fat. If temperature dips, throw out and start over.

Please research before attempting, I cannot convey everything in a reddit post and food borne illness is serious. But i wanted to share this idea bc it seems like it could be life changing for me and I thought it might help others as well.

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?

I've tried to read everything i could online, but she has anxiety problems plus gets panic attacks, both of which dont help recovery, so I thought I would ask here for some personal examples. When she is able to use her phone she uses reddit alot for comfort.

Long story short she got sick from me a month ago, no fever, no bad symptoms, and she was about to get better but then crashed into this condition. She is now basically out of comission, I have to carry her to the bathroom, sometimes spoon feed her and she cant talk much. I know it sounds like cfs, but it has only been like this for a month and it happened overnight.

We did take her to the hospital where she stayed for a few days, but they forced her to walk and stand up, refused to take an antibody test and all other tests showed there is nothing clinically wrong with her.

She was actually getting a little bit better, could sit upright on the sofa and use her phone most of the day, even read a book a little bit.

When she started feeling slightly better she pushed herself trying to do some laundry and now she is crashing really bad. I suppose it wouldnt be so bad if it werent for her stressing out and feeling suicidal over this condition, which dont help her resting.

This is probably long covid and not cfs, but severe fatigue seems to be her steongest symptom.

Any words of comfort for her? She feels like shell never come out of this crash or ever walk again.

She is 4 months pregnant and we have 2yo in the house.

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.

Hiya, I am feeling a little overwhelmed with all of the different healing modalities that I could choose to spend my money on. At the moment my recovery strategy consists of breathwork, meditation, short somatic exercises, responding to symptoms with curiosity and compassion, and trying to create/find joy as much as I can. I feel like I have a good gist of what it takes to recover, and am relatively goof at sticking with routine, but I am also struggling a lot emotionally / with the life things that come along with having cfs, and other difficult relationships in my life, so I do feel in need of a helping hand.

I am paying for private talking therapy, but I'm not sure how helpful it actually feels. I tend to talk about things like how hard it is living with cfs, difficulties in relationships and friendships, childhood traumas, ect. But her style is pretty uninvolved, so it's mostly just me talking, sometimes feeling like I am trying to come up with things to say. I am finding our sessions sometimes tiring and dysregulating.

I am wondering if my money would be better spent elsewhere. I don't have enough money to pay for more than one of these things, so I guess my question would be that if you could choose one of the following, which is likely the most helpful? I would be open to some combination (e.g. do X for a month or to and then Y)

*a recovery program, *a mind/body coach, *finding a new therapist with a different approach, * trauma release exercises (TRE), * accupuncture & craniosacral therapy, ** something else??

Thanks :)

Hey,
Do you guys have any books, authors, or resources that really helped you with healing, nervous system regulation, chronic pain, or the whole mind-body approach?
I recently read The Mindbody Prescription by John E. Sarno and I’m looking for similar stuff — things that genuinely helped you feel better, understand your body more, regulate your nervous system, or approach recovery differently.
Would love any recommendations
Thannnks🙏🏻

I built a free ME/CFS tracking app because I couldn't find one that actually understood the illness

Most health apps are built for people who want to "optimize" their performance. That's not us.

I built Lumavie specifically for ME/CFS, Long Covid and Fibromyalgia — designed around the reality of living with these conditions, not despite it.

What it does:

- Track energy, sleep, brain fog and symptoms daily

- Log activities with intensity levels and track the delayed PEM response at 24h and 48h (so you can finally show your doctor the crash pattern)

- Export a PDF report to share with your healthcare team

- Positive moments & affirmations for the hard days

- Silent Heroes Badges for your persistence

- Works on iPhone and any browser (Android included)

It's completely free at lumavie.app — no account needed, all data stays on your device.

I'd love feedback from people who actually live with this. What would make it more useful for you?

💚

It's kind of a treatment strategy, but its unconventional enough I put the misc flair lol. I personally have gotten *a lot* of help from rap/hip-hop music, specifically 90s hip-hop. Something about the rhythm is soothing, a lot of the messages sort of put me into a chilling mind set (like stuff about smoking weed- I cant smoke weed bc my body is too sensitive to it, but thinking about guys being laid back and chilling helps put me into a more relaxed mindset).

Rap music has also helped me to not stress out about other peoples problems and enforce my boundaries about helping everyone better (trying to help other people with their emotional issues and worrying about other people has been a big source of crashes for me). I play it in the background when hanging out with people in VRChat (I cant leave the house very often so I use VRChat as an accessibility tool to feel like I am hanging out with people in person), and I started to prioritize 'vibing to the music', and refusing to engage in ways that stress me out enough that I no longer feel like I am vibing to my music. I still am there for people and listen, but I don't let myself get worked up, I dont act hypervigilent about how everyone else is doing and focus on my own vibe instead of theirs, I dont try to manage everyone, I am chilling to my rap music.

This has been hugely beneficial to energy conservation and stress reduction. I had a friend drop me after I started doing this, which while that was very stressful and caused a fatuge crash, I view as positive over all since they were just using me for what I could do for them and didnt want me anymore once I actually started pacing myself succesfully and not do everything they wanted. It also just shows me how tangible a difference this made in my behaviour that it changed how other people perceived me so drastically.

--

I just wanted to share how helpful this has been! I thought it might help others too, it doesnt have to be rap music, but anything that helps you to find your chill and learn to prioritize yourself and conserve your energy, anything that can help keep you calm and not stress out, can really help improve your life and ability to pace! Good luck everyone :D

Hello, I've been dreaming of writing this post for over 2 years (I'll try to keep it as brief as possible).

I (F30) would say I'm at least 90% recovered. I had 3 flare-ups in the last 5 months.

I know, it sounds like many setbacks for someone who is nearly recovered BUT the flare-ups were very mild, lasting 2 days max, which is good enough for me. Also, I haven't been pacing for 5 months. I do sports whenever I want. I had a stressful week a while ago, filled with socialising, work challenges and exercising, and I didn't crash.

The timeline

February, 2024 - caught a cold, went to work anyway, caught a virus which I believe was covid, spent 2 months being too fatigued to sit up, then returned to normal
April 2024 – went back to doing intense sports, experienced my first PEM flare-up a week later
The rest of 2024 - felt normal for about 7 days at a time, then like I had a flu for 7+ days after, my longest flare-up lasted 3 months, which lowered my baseline and I no longer felt normal outside of PEM

I didn't pace in the first year at all and basically continued living as if I didn't have long covid (yup, big mistake). When I sum up all the PEM days in my first year, they amount to 8 months in total of feeling like shit.

2025 - I still had terrible PEM but the flare-ups started to shorten, my cognitive abilities got better, the POTS symptoms disappeared, every step forward still felt like it was followed by 4 steps back, decided to do meditation regularly

Symptoms

I was never severe but I generally had less energy than my 90-year-old grandma...

Here are all the symptoms I experienced:

- fatigue
- malaise
- feeling out of breath
- temperature intolerance
- exercise intolerance
- POTS symptoms
- cognitive difficulties
- brain fog
- head pressure
- sore throat
- dizziness
- sleep problems

What was my PEM like

Like being poisoned or slowly dying, way worse than flu. I had a sore throat, head pressure and a terrible malaise. I wasn't always fatigued though. Sometimes I had to stay in bed because I had no energy, other times I could walk and do things but felt too awful to enjoy anything.

In the first year, it felt like PEM was mostly triggered by exercise and cognitive effort. In the second year, emotional effort and stress. Even when I was excited, it felt like my nervous system was in overdrive. My most recent flare-up was due to getting triggered by a toxic family member (cut them out of my life now and continue working on my mental health, so I expect to be at 100% at some point).

Things I've tried (which probably didn't help)

Creatine, taurine, codeine, magnesium, prolonged fasting (made me crash), stellate ganglion block, antihistamine diet, low sugar, gluten-free diet, being triple vaccinated, cold showers, CBD

Things I’ve tried that might have helped

COQ10, intermittent fasting, wearing compression stockings, electrolytes during exercise, acupuncture, massage

THINGS THAT MADE A DIFFERENCE

Yoga nidra - no, I don't think long covid or CFS/ME is just in your head but I believe meditation gave my body space to heal. I also have PTSD so it was beneficial to me either way.
Mirtazapine – it helped me sleep better. It also acts as an antihistamine, which might be why it made my PEM less miserable.
Iron tablets - my iron levels have always been normal but on the lower end. From reading Reddit, I found out that most people function better when their levels are at least 100 but I was kind of reluctant to do anything about it until I was 1,5 years into my long covid. At that point, I said fuck it, got iron tablets and within 2 weeks I finally had my energy back (but PEM persisted).
Nicotine patches - again, I was reluctant to try these as I've been conditioned to think nicotine=bad, but I got desperate, so I put 7.5mg on during a flare-up and woke up fine the next day (October, 2025). I've put them on a few times since then, they always shorten my PEM and help me sleep better. I've never worn them for longer than 2 days at a time. Also, the patches gave me a sense of security - I stopped worrying if doing this or that would cause PEM because I knew I finally had something that could get me out of it.
Getting off Reddit - reading posts about symptoms, trying to follow research and finding new things just overwhelmed me and made me spiral. At some point, I decided to worry less about finding the cure and focus on my mental health as it was something I could control. I was also determined to prove the doctors that they were wrong about it being anxiety.
Daylio - This app is amazing! It gave me a visual representation of my progress, which was a lot more motivating than just crossing something off a list. I logged in everything I did like meditation, I tracked my mood and symptoms, which kept me motivated and helped me develop a healthy routine. 5 months of meditation made me anxiety-free for the first time in 15 years.
Gentle pacing – taking frequent breaks, especially to meditate, but still doing things to the best of my abilities.
Time – the above things helped for sure, but the biggest factor might have been time, unfortunately. I think many people just have to wait it out, but it’s worth supporting your body as you do. In November 2025, I finally felt a shift and that’s when things started improving without many setbacks.

How am I now?

These days I look back on the last 2 years and can't believe that long covid happened to me. It seems like a bad dream, like I’m struggling to believe it’s possible to feel this ill with this little support from the doctors… it’s just insane! I’m feeling extremely fortunate.

And yeah, I'm not 100% back to normal. I'd think twice about doing a strenuous exercise on little sleep and after a stressful day, for example. But you know what? I don't want to put my body through that kind of stress anymore. Now and again, I experience head pressure or a mild sore throat, and I take it as my body telling me I need to relax instead of pushing myself. And once I do step back, the symptoms go away.

So yeah, I’m hoping this post can give you hope. I read many of these myself when I was ill. As you can see, I did many things ‘wrong’ in my first year, I didn’t pace, I doomscrolled, I got drunk, I exhausted my mind and body and still managed to get better. I believe it’s possible to recover for many people; it might just take time.

If you have any questions about my experience, feel free to ask.

Hey! So I got post viral fatigue in 2023 after getting a really harsh bout of tonsillitis turning into chronic tonsillitis.

I stopped work completely for about 8 months for reference in a plumber. I eventually went back 1 day a week and then progressing to 2 and then 3. I have been working 4 days a week since December and been managing!
I’ve finally decided that I’m well enough to try full time work again and I’m applying for new jobs!
Im definitely I bit worried about how I will cope but I was worried about 4 days a week and that’s been a breeze.
I remember trying so hard to find positive recovery stories when I first got diagnosed and it was bleak, but guys it really can get better, it’s been a journey and I can relate to y’all so much, especially in the recovery of 1 step forward 2 steps back. I remember thinking yes I’m having a flare but it’s been longer in between then it used to be and now I get a flare maybe once a month for like two days and even then I can still do things. Don’t lose hope guys!

I’m French and currently in a severe state of ME/CFS. I’m posting here because I haven’t really been able to find any active or positive French-speaking communities or content on this topic, and I’m hoping to find some guidance or shared experiences here. I’ve been feeling a bit more hopeful after reading recovery stories.

For those who have used nervous system regulation, stress management, or brain retraining approaches:

How long did it take before you noticed any improvements, and what were the first signs for you that it was actually helping?

And if you’ve made significant progress, how long did it take before you were able to reintroduce effort without triggering PEM again?

I’ve read a lot of testimonials, but I still struggle to understand what the early changes actually look like or when you can really tell it’s working.

I also notice strong fluctuations (better one day, worse the next), and I’m not sure if that’s part of the process or not.

Thanks a lot for sharing your experience
Sorry if this has already been asked or if this topic comes up often

I crashed like 100 times before i knew about CFS/ME. I had horrible exertion intolerance but kept working 2 times a week.. physical work :( my HR was elevated.. i just took the beta blockers and move on, living on pure adrenaline.
Now im bedbound from 1year, i dont have a baseline, constant symtpoms.. cognitive, emotional exertion is also gives me crash. Hyperarousal 100%
Today i washed my hair after 3 months… my mother helped me, was too much for my body, 110HR sitting shaking. I just want to be able to do simple things again.. go out once in a month.
I dont even look like a human anymore, hair loss, puffy face, pale, muscle atrophy.. i think i need more pacing and to isolate myself, but its so boring i always was active, sporty, living life.
Mornings are horrible, so the nights, barely sleeping. Dreams are triggering..
Im just so done with this, want to go outside and dance :)) i would collapse there or not.. due to adrenaline. Im just so sad, i miss my friends.
I see people are recovering but i always ask myself if they where severe due to so many crashes or i was the only one who pushed and torture my body? :(
I will try everything, radical rest for months, POTS MCAS treatment.
How Do you Do the brain retraining?
Please someone can help me? Im in this hell from 3 years. Mild CFS then push crash and be came severe. I didnt left the House from 1 year and im getting worse.

Thank you!

Became bedbound overnight for a month after a minor cold. It's not getting better. Once it hits you so severely, is it even possible to get better? I mostly hear of people getting sick, recovering, still being fatigued and becoming bedbound months later..

Hi! I have an Ativan prescription from my doctor for anxiety. I understand how to use it responsibly. I took one yesterday because I was anxious about some plans I had for the day, and it was amazing. I got through the day feeling good & like my old self. To me, this confirms that my symptoms are very anxiety and nervous system driven. And i need to figure out how to get the effects of the medication naturally myself through nervous system work. Anyone else have this experience?

I typically sleep well (8-9 hours a night), but I wake up feeling super weird--groggy/out of it, legs feel stiff and weak, etc. as well as instant sweaty palms, anxiety, nausea, sometimes turning into full on panic attacks. It gets better as the day goes on, typically within a few hours.
Just wondering if anyone else had/has this and what you did to help. I feel like I'm also expecting to feel bad when I wake up which is perpetuating the cycle.

wondering if anyone can share stories of recovery through / supported by lymphatic drainage (such as the Perrin Technique)?

i’ve been doing the perrin technique for over a year now. in the first 4 weeks I saw an almost instant shift and one day i woke up and felt like myself again - still sick, but myself. it was amazing. previously I just hadn’t been able to access any part of my brain or identity that made me, me, the whole time I had been unwell.

I have continued to make progress but it has been very very slow, and could also just be time and other things helping me improve. it’s expensive and I’m wondering if I should continue or if anyone can tell me some good or hopeful stories about their experience! thanks :)

I vow to not turn around and try to sell y'all some fucking COURSE ♡

after my long covid fatigue came back my husband and I had a major fight about how I was dealing with it and I’ve been in a state of constant adrenaline the entire night. I’m now terrified to go to sleep because I’m scared to death of what will happen when the adrenaline wears off. whatever was going on with me is definitely about to get worse. what can I do?

hi everyone,

I got long COVID last August after a relatively mild case of Covid and was ill for seven months — some bedbound but mostly housebound. I recovered over the course of two months thanks to mind body work and have since returned to full time work, walking and traveling. a couple of days ago I rode my bike for the first time because I was late to something and didn’t want to take an uber. I don’t know if I’m sick (I tested negative for COVID) or what but for the last three days I’ve been hit with the same terrifying sensations: heavy body, exhaustion, high heart rate, brain fog and soreness. it keeps getting worse with each day, too. yesterday i was tired but now I’ve got that weak and poisoned feeling. I’m trying not to freak out because I can’t do another 7 months of this hell and don’t know what to do. I was literally fine three days ago and now I’m back in hell. has anyone dealt with this before? what should I do? I feel like I’m going to break down in tears.

UPDATE my husband and I had a huge fight after I started crying about being sick and tldr I put my body under extreme stress and already feel so much worse. Help!!!

I'm 19(M), started having symptoms of the following about 3.5 months ago after a flu episode:

- excessive sleeping(12+ hours a day)
- extreme fatigue that worsens after physical activities
- extreme brain fog espically in social scenarios

I didn't know post-viral fatigue was a possibility until 2 months into my symptoms, and I've minimized physical activities as much as possible since then and started pacing.

I stopped going to the gym completely.

But I'm still worried about developing full CFS. Am I still in a time range where it's resolvable with the right recovery? Does it matter more what I do now and how I recover? Or is it already determined based on my predispositions?

(Any other tips/advice on how to get rid of this would be appreciated.)