r/cfsrecovery

Hi all!

I'm feeling a bit stuck currently - partly because my routine is a bit out of whack due to this month being kind of hectic, so I feel like I'm in boom and bust more than usual, and partly because I am lacking motivation to do things I know would help or feel overwhelmed about what to focus on.

I think one thing that would help is reducing screen time. I can see that screen overuse is very activating for my nervous system and affects my sleep.

The temptation is to say 'Right, we're limiting screen time to x per day and replacing that with [insert productive activities here]' but we all know it isn't that simple!

If you've had some success doing this, what activities did you do instead? I guess screen time is something I do to try and 'rest' that isn't all that restful, but my mind is so busy and I just can't cope with multiple hours of radical rest a day, so I need something similarly low-effort, occupying, slightly numbing...?

FYI, I'm currently moderate-ish - a long way from being able to work consistently but I manage a few short things out of the house a week and can do short bursts of housework or socialising.

Hi everyone,

I'm currently in the process of figuring out what degree and especially what kind of exchange with other chronic pain/cfs/tms 'patients' would be helpful. I sometimes feel like some communities that are very much focused on the "you can't change your symptoms, just learn to live with them" approach don't really help me (just my personal experience, I have full understanding for everyone in that position).

So I was wondering if someone here would like to chat a bit or possibly try to open up a discord or chatgroup or smth, to talk to others going through the same thing but convinced that the symptoms can get better even though it is extremely hard to get there.

Hi all, I’m in week two of a major crash down from mild/remission to near bedbound and nothing seems to stem the progress of the crash. If I write in a journal my arm becomes heavy an hour later. If I walk around a bit my body makes it hard to get up. I try and tell myself that these are just sensations and that they can’t hurt me but it is extremely difficult to stem the panic of the decline. My usual techniques of self regulation only seem to make things worse. I feel like my body is not listening to me at all and don’t know what to do. Does anyone have any tips for stopping the decline?

Hi everyone. For context I have moderate-severe M.E, bed bound with multiple conditions alongside M.E such as POTs MCAS hEDS endo etc. I have dentist booked it as I have 1 dead tooth and 1 infected tooth (due to being bed bound leaving house for appointments/check ups so difficult and has led to neglecting my body/teeth). I’m extremely nervous as even typing a message right now is enough to send me into a flare and PEM crash, has anyone got any advice on best things to do before/after extractions in terms of PEM crashes/flare ups. And any advice on if you’d opt for inhalation sedation or IV sedation as I’ve been offered both. Thank you guys.

Vor 15 Jahren hatte ich, nach einer enormen körperlichen und psychischen Belastung, ca. 3 Jahre Cfs, durch damalige Cfs Foren und Genesungsgeschichten anderer bin ich auf Amygdala Retraining gekommen durch dass ich mich da wieder rausziehen konnte.

Ich möchte euch in meinen Worten die Logik dahinter erklären, bitte versucht dem bis zum Ende zu folgen ohne es gleich als psychosomatisch abzustempeln, das könnt ihr danach immer noch.

CFS kommt eben nach einer Krankheit oder enormer psychischer Belastung vor weil euer Gehirn nur ein dummes Organ ist das manchmal nicht checkt wenn eine Krankheit und stressige Situation vorbei ist und euch in eine Falle tappen lässt.

Als Mensch kann man ja nur Dinge begreifen die man mit 5 Sinnen(das ist nicht viel nur 1 Hand und wir hätten 2!!)wahrnehmen kann oder für die man einen Kontext hat. Meistens wenn man extrem müde ist hatte man grad eine Prüfung, etwas belastendes ist grad passiert oder man ist krank-da wundert man sich eben nicht über Müdigkeit weil da hat man ja Kontext.

Wenn euer Gehirn aber nicht checkt dass eine belastende Situation vorbei ist und weiterhin (fehlerhaft) Adrenalin und Stress Hormone ausschüttet wenn ihr einfach nur-wie üblich auf der Couch sitz- werdet ihr eben nicht begreifen dass das gerade passiert. Stresshormone+ Adrenalin kann man eben nicht riechen, sehen, angreifen...und bedroht werdet ihr auch nicht auf der Couch.

Ihr werdet trotzdem von Hormonen geflutet und diese spürt man ja immer als Gefühl(Frauen verstehen dass vllt besser)also spührt ihr plötzlich eine tiefe Beunruhigung-irgendwas stimmt nicht und weil ihr eben keine Bedrohung von außen wahrnehmen könnt-glaubt ihr sie kommt von innen-eine mysteriöse Krankheit- and it begins..

Jetzt ist es so dass euer Gehirn ja keine Augen und Ohren hat es weiß ja nicht ob da wirklich eine Bedrohung im Raum ist und ist deswegen auf eure Rückmeldung angewiesen. Weil ihr aber zutiefst beunruhigt seid signalisiert ihr eurem eh schon traumatisiertem Gehirn dass es richtig war dass es das ausgeschüttet hat-hier stimmt tatsächlich etwas nicht. Daraufhin wird noch mehr Adrenalin ausgeschüttet was euch wiederum bestätigt dass die Bedrohung real ist. ( ein negativ-loop)Danach ist man extrem erschöpft obwohl bewusst gar nix passiert ist.

Wenn ihr dann wieder auf der couch sitzt, erinnert sich euer Gehirn daran dass das letzte mal als ihr in der Situation wart ihr in Gefahr wart und schüttet wieder Hormone aus ihr checkt es wieder nicht und der Gedanke an eine Krankheit verfestigt sich.

Irgendwann habt ihr dann das Gefühl dass jede körperliche Befindlichkeit zu eben dieser unsichtbare Krankheit gehört und euer Gehirn schüttet euch den ganzen Tag mit Stresshormonen zu, jetzt fährt vllt auch noch ohne Grund das Immunsystem wieder hoch. Stellt euch mal vor ihr würdet den ganzen tag vor einer Bedrohung weglaufen+ Krank sein..wenn ihr euch dann Betätigen wollt ist euer Energiespeicher eigentlich schon fast leer, ihr fühlt eine unmenschliche Erschöpfung und müsst euch von allem erholen und euch fehlt komplett der Kontext. Ihr werdet jahrelang schwören es sei nur körperlich weil ihr eben den Gehirnteil nicht wahrnehmen könnt und erholt euch nie wieder..bis es euch jemand sagt und ihr es auch annehmen könnt.

Eine der Personen aus dem damaligen Forum hatte das 20 Jahre und kam wieder raus also wow..

Ich weis es gibt sehr viele Programme mit unterschiedlichsten Namen da draußen die einen ähnlichen Kern haben, manche klingen wissenschaftlich manche esoterisch. Falls ihr euch wundert warum scheinbar so viele unterschiedlich Dinge geholfen haben(ich wundere mich auch oft) dann weil man ja 'nur' den Negativkreislauf im Gehirn durchbrechen muss( das geht auch mit Placebo) Ich hab deswegen keine Empfehlung für euch, ich hab das gemacht dass am ehesten einen wissenschaftlichen Hintergrund hatte.

Menschen die begreifen dass Gehirn+Körper 1 sind und im Einklang mit ihren Gefühlen sind kommen viel schneller da raus. Eher Logische und analytisch denkende Menschen(wie ich) checkens ewig nicht. Ich hab definitiv auch eine eigenartige Persönlichkeit..

Das schwierigste an der Krankheit ist eben zu erkennen was man nicht sehen kann..dann zu vertrauen und diszipliniert dagegen zu arbeiten. Keine Heilung funktioniert in wenigen Tagen.

Da man als Baby ja dumm auf die Welt kommt trainiert man sein Gehirn ja ein Leben lang . Es ist also möglich wieder auf ein normales Level zu kommen nur manchmal dauert es etwa bis eine Konditionierung weggeht. Ihr dürft nie aufhören eurem Gehirn zu widersprechen wenn wiedermal diese negativen Gefühle scheinbar aus dem nichts auftauchen. Wenn euer Gehirn sich beruhigt kommt nach und nach die körperliche Leistungsfähigkeit und Belastbarkeit zurück -ich schwör es. Ich habs auch nicht zu 100% glauben können bis es funktioniert hat. Mmn. lernen wir einfach nicht genug über unsere Körper und unser Nervensystem. 

(Mein Schweregrad über die 3 Jahre war übrigens gemischt, manchmal konnte ich nicht aus dem bett, manchmal war es scheinbar weg und kam dann wieder aus dem nichts. ab mich von Anfang an viel geschont, nicht zu laut lachen, viel liegen. Hatte extreme Angst vor körperlicher Aktivität weil ich dachte man könnte wirklich daran sterben. Hatte viele körperliche Symptome wie empfindlichkeit gegen Licht+Geräusche,  brainfog, Sehstörungen, das Gefühl als wäre Blei in meinen Beinen etc. Psychisch: Hoffnungslosigkeit, Gereiztheit, Sturheit gehetzt von einer möglichen Diagnose zur nächsten)

Teil des Retraining Programms war es nicht mehr in Cfs Foren zu sein und sich nicht mehr mit Krankheiten zu beschäftigen, deswegen fehlen so viele Genesungsgeschichten obwohl sie so wichtig für noch Betroffene wären. Ich habe erst durch Corona wieder daran gedacht und musste mich erst dazu durchringen mich damit wieder auseinanderzusetzen. Noch-kranke Menschen triggern mich leider extrem weil sie mich an mein krankes altes ich erinnern(speziell diese Sturheit dass man fix nicht geheilt werden kann weil man hat ja was ganz schlimmen und das klingt alles zu psychosomatisch-verstehen kann mans leider erst im nachhinein)  es war die schlimmste zeit in meinem leben und hat definitiv keine körperlichen aber psychische Narben hinterlassen. 

Viel Glück,  bitte  verschwendet nicht noch mehr Zeit eures Lebens mit der Suche nach einer rein körperlichen Ursache. 

(Ps.: ihr müsst mir nicht schreiben dass nur weil ich gesund wurde nicht jeder gesund wird und ich ja fix was anderes hatte ich weis es eh.. 😉)

Has anyone here had PEM start mainly as worsening headaches before the more classic fatigue/crash symptoms?

I’ve been dealing with issues for about a year after a viral illness. I’ve seen multiple doctors and still don’t have a diagnosis. Early on I had fatigue and headaches, but I’ve still been able to work, drive, and function day to day. I stopped intense workouts though because exertion started making me feel worse.

One thing that confuses me is that I don’t feel exhausted all the time anymore. I actually feel normal energy-wise, but headaches are becoming the dominant symptom. If I overexert myself physically, the headaches can get really bad afterward. But if I rest for a day, I often feel noticeably better the next day. Some doctors have said I have migraine or tension headaches…

I also tried LDN. Interestingly it reduced the headaches, but it gave me this weird malaise/flu-like “coming down with something” feeling, so I stopped it.

For people who eventually realized they had PEM or ME, was it obvious from the beginning? Like full-body crashes where you couldn’t do anything? Or did it start more subtly with one symptom (headaches, dizziness, feeling off, etc.) getting worse after exertion before the more classic PEM symptoms showed up?

Just trying to understand whether anyone else’s experience started this way and what the patterns or red flags were/are (something the FAQ doesn’t really spell out for beginning symptoms)

Thanks

I finished the data analysis! thank you to the 1456 or so of you who contributed your data! 🤩 

I've been doing the Gupta Program for about 3 months with some really remarkable progress in the last 1 month specifically. However, I got caught in a sudden downpour a few nights ago and had to run home. I don't usually exert in the evenings at all.

PEM hit a couple of days after this and I've now been in it for 3 days, going on 4. The advice from the Gupta program seems to be to do absolutely nothing - total rest. No meditation. Not even yoga nidra. Just total rest. This is surprising to me.

What do other people recommend for PEM?

I’m writing this because I honestly feel desperate and isolated, and I want to know if anyone has experienced something similar.
Around the COVID pandemic in 2021, I suddenly developed severe stuttering and extreme brain fog. Before that, I had NEVER stuttered in my childhood or earlier life. It came out of nowhere.
In 2022, after starting an SSRI, the stuttering and brain fog disappeared almost completely for about a year.
Then in early 2024, everything suddenly came back again for no obvious reason. The stuttering and brain fog became so severe that I had to stop private tutoring, which I previously loved doing. Around the same time, I also developed severe anhedonia for about 6 months — I completely lost my libido, couldn’t feel pleasure, motivation, or emotional connection to anything.
Then in summer 2024, when my Effexor (venlafaxine) dose was reduced from 150 mg to 75 mg, something strange happened: the stuttering, brain fog, and anhedonia almost completely disappeared for about 2 months.
But since winter 2024, the stuttering, brain fog, and anhedonia have all come back again.
My psychiatrist and I have tried many different medications and dose changes, but nothing has really helped long term.
At this point I feel extremely hopeless. I barely have any motivation left to live.
Because of the brain fog and stuttering, I’ve become isolated from my family and friends. I can barely communicate normally anymore or feel connected to people. It feels like I lost the person I used to be.
If anyone has experienced something similar — especially sudden adult-onset stuttering + brain fog after COVID — please share your experience. And if you managed to recover or improve, please tell me what helped.
TL;DR: Sudden onset stuttering and severe brain fog after the COVID era, temporary improvement with SSRIs and Effexor dose reduction, then relapse. Looking for people with similar experiences or recovery stories.

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?

I hope this is alright to ask. I’m wondering if anyone knows or can personally attest to stories of people who recovered who were young, secular, maybe lgbtq, and left leaning socially/politically. I’ve noticed that a lot of the recovery space has attitudes that I associate with conservatism, like ai usage, devout Christianity, vaccine denial, things like that. I don’t see a lot of people like me who have recovered and sometimes it makes me wonder why that is.

I know that some might say that this is because people like me are crybabies who make their illness their identity and don’t want to recover. But I in fact have known many people in those demographics who have had similar illnesses like PCS or MCAS who are very vocal about their recovery stories. Just none for CFS. So I don’t think being in that demographic makes you inherently victim mindset. I just feel like it’s a type of person I never see in these stories. There aren’t any raealan agle podcasts where the guest has ten face piercings and purple hair, y’know? Just curious to hear if there’s anyone who has insight about this. Please do not comment bashing the people I speak of. We are all just humans trying to make it.

I’m based in the UK and feeling a bit lost on where to start getting proper help with this.
My GP hasn’t been very helpful and doesn’t seem to be taking it particularly seriously. I did see an endocrinologist who said it sounded like “Transient Autonomic Dysfunction”, but the crash/exertional side of things has made me question whether there’s some overlap with dysautonomia/PEM-type issues.
At this point I’m mainly trying to work out:

what sort of specialist/service I should actually be pushing for

what investigations are worth doing first

whether this sounds familiar to anyone else here

I’ve stepped back from work for now and moved in with my dad to focus on recovery. Financially I’ll probably need to look into benefits/support at some point as I also have a mortgage to cover.
Would really appreciate advice from anyone in the UK who has been through something similar or managed to navigate the NHS/private route successfully.

Timeline below:
Started prednisolone 40mg for 7 days, then tapered to 30mg for 3 days before stopping abruptly on GP advice.
During taper:
Day 1: blurry/foggy vision watching TV in the evening with pressure around forehead/between eyes

Day 2: felt mostly okay until a short 10-min walk triggered a crash after lunch — spent ~4–5 hours in bed but improved again in the evening

Day 3 (March 7): stayed in bed most of the day with palpitations, blurry vision and symptoms worsening on standing. Called 999 and GP advised stopping prednisolone completely

First 2 weeks off pred:
Main symptoms were blurry/foggy vision, disorientation, intermittent low energy and autonomic-type symptoms

I was still working throughout this period and could manage calls, office visits, short drives and trips out

Days 6–12 showed gradual improvement overall and I managed:
a 1-hour drive

brief gym visit

three half days in the office

By the end of that week, after repeatedly pushing activity, I crashed/set back with worsening visual symptoms and fatigue

This led to:
1–2 days mostly in bed

followed by a couple more partial recovery days needing extra rest

Weeks 3–4:
After that setback, I had a slower 2-week recovery period where I gradually improved again

I could still work, do calls, go on short walks and manage basic daily activities, but felt physically fragile and easy to flare up if I pushed too much

Over those two weeks I slowly got back to feeling relatively “normal-ish” again

Weeks 5–6:
4 days of near-complete rest over Easter produced significant improvement

Morning cortisol tested normal (~540 nmol/L around 1 month after stopping pred)

Brain fog, disorientation and visual symptoms improved substantially and I thought I might be close to recovering

April 7–9 I felt relatively normal at points and thought I might return to the office the following week

However, a 15-minute drive triggered a significant flare with heart palpitations, visual symptoms and increased sensitivity again

For around the next week I had a very tight/anxious/jittery feeling physically, which gradually eased again as I continued normal day-to-day activity

Weeks 6–8:
This is where I started noticing something closer to exertional intolerance

I could often have relatively normal mornings:
going out for coffee

doing work

short walks/trips

But later in the day I’d sometimes suddenly feel tired / nauseous and need to lie in bed for 1–3 hours before feeling closer to normal again

Capacity became increasingly inconsistent depending on activity levels

Week 8:
I also started having my most normal windows since this began

I had days where:
trips to the doctor felt normal

phone calls felt normal again

and at times I felt almost completely back to normal

At the same time, I was also getting periods where I’d suddenly need to lie in bed for a couple of hours before feeling okay again

On the Sunday before the larger crash, I felt unusually heavy/drained for most of the day but pushed through it without really realising what was happening

Shortly after this, I triggered what became a larger 3-week crash/setback

Current/main symptoms now:
a persistent “revved up engine” feeling internally

mild pressure/headaches between my eyebrows

feeling very sensitive to overdoing activity and my fight or flight feels stuck on as I can’t nap in the days as my body wakes me up

At the moment I’m mostly bed resting, but I can still:
shower

get up and make food/drinks

talk normally with my dad

slowly add small amounts of activity back in

Brain fog and most of the disorientation have improved significantly compared to the earlier weeks

I’ve been struggling with long COVID symptoms for about 2.5 years. In the beginning, it was very severe: extreme fatigue, panic attacks, headaches, dizziness, high blood pressure, and sensitivity to bright light and loud sounds. Over time, pacing, stress reduction, and simply giving it time helped me improve.

Now I’m working again, exercising, and I even have a second job. On paper, I should probably feel grateful, but the problem is that this still isn’t the life I had before COVID.

There are periods when, for an entire month, I’m unable to study or deeply focus on anything intellectually demanding. I function well enough to do groceries, clean, and handle everyday responsibilities, sometimes delayed, but still manageable. Even light training is usually possible.

The panic attacks are much weaker now, more like waves of anxiety rather than full panic. Blood pressure spikes are also milder than they used to be. Even so, I’m constantly afraid that this might be the maximum level of recovery I’ll ever reach.

Sometimes I get 2–3 weeks where I feel almost healthy and start returning to normal life again. Then the crash comes back.

Physically, I’m able to function and even do light workouts, but anything requiring deeper intellectual effort or social interaction still often feels overwhelming.

I think the hardest part is this feeling of being stuck in-between. Functional enough to work and survive, but not healthy enough to truly live normally, grow as a person, or feel like myself again. I constantly feel like I’m operating at around 60–70% of who I used to be.

Has anyone actually recovered 100% from long COVID?

I feel like there’s some conflicting information about what to do with big feelings. On the one hand you don’t want to repress the big stuff like trauma at the root of the problem (which is why things like journal speak work for some) yet at the same time a lot of the feelings about the illness itself take on some form of emotional repression.

I am angry and sad and terrified about having relapsed and I know I should find some way to detach myself from those feelings because they only reinforce to the nervous system that something is wrong. However repressing or burying them feels like the wrong move also and I feel like the language of detachment is hard for me to understand. My condition is worsening and that’s making the cycle harder to break.

Has anyone had success with this?

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.

I have been in the mind-body space for about five years, working with many coaches and I’m grateful for each and every one of them, but there was a point even after all of that where I felt hopeless to get better…
I felt that maybe I was too far gone, but then I started working with Sam Miller, from the Great Allowing.. she is amazing …each coach offers different ways of doing things, and this one worked for me ..
for the first time truly for the first time I feel hopeful again…
she really talks a lot about the nervous system as one energetic function and how to get it back into balance.
which is to create a safe environment for it …
and that safety is “allowing” along with sticking to a routine to help the nervous system feel safe. There’s so much more that I could say…but check out
her YouTube channel “The Great Allowing” it has a wealth of information …her educational background, expertise and personal history with this qualifies her to help many people …
her own personal struggle from where she was to where she is now is transformative and a beautiful success story.
She has helped thousands of people, and I would like to point out personally it has been the best thing that has happened to me after 20 years of suffering

Obviously a book can’t heal us in itself but any step in the right direction is a plus. List the books books you have heard or read on the overall topic of LC/CFS or pain/nervous system related

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.

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.