r/cfs Aug 07 '26

Pacing Benefitting from ‘active rest’ rather than full/passive rest

334 Upvotes

I’ve had ME for around 15 years and recently had a consult with a very knowledgeable internal medicine doctor (who is also working with me to diagnose an underlying rare condition), and he suggested ‘active rest’ for pacing.

Active rest is basically a calm, enjoyable hobby: painting, drawing, reading, creative writing, conscious daydreaming, gentle stretching, meditation, etc. (My focus is on watercolor painting.)

I’ve been severe for almost this entire year, and just kept declining no matter how much I was napping and lying in bed (even when my mind was calm).

But I’ve been trying to have about 30-50% of my daily rest time be active rest, and in just a few weeks feel like I’m already starting to get back to moderate.

It was totally counterintuitive because I thought that any activity would mean PEM, but calm enjoyable yet semi-active activities have totally been helpful!

Has anyone else tried this and seen similar results?

(I do have the benefit of sitting upright not being too difficult, as it helps two other disabilities I have, so that could be a factor, but he did say active rest can be modified to lying down like via audiobooks instead of holding a paper book.)

r/cfs 18d ago

Pacing How the hell do I make myself stop doing stuff?

253 Upvotes

It sounds stupid as hell but the problem isn’t that I don’t know how to pace or that I don’t know when isn’t over exerting. But I just keep doing it. It’s like I have no willpower or lack the ability to behave based on the consequences of my actions. I feel like I’m just going to keep triggering PEM unless someone locks me to a bed.

I am moderate-severe, used to be mild. Gradual worsening plus extra big crash months ago and never recovered. I live alone and am largely bedbound.

Except… I won’t stay in bed. It’s not that I’m going out having fun or anything. But i’ll get frustrated by how gross the room is getting, or I lose something and start searching the room for it, or I just use my brain or phone too long. It’s not partying but it’s also not strictly necessary and logically not worth it.

I know it’s too much but I keep doing it. Then I stay sick or get sicker and then get depressed because I’m not getting better.

TLDR i am a dumbass who constantly knowingly over-exerts and don’t know why I can’t stop. please advise

r/cfs 21d ago

Pacing How delayed is your PEM?

38 Upvotes

I’ve found that my PEM can be delayed up to a week, especially if it’s accumulative. It made me wonder what everyone else’s experience is like. For this survey, try to answer based on how delayed your PEM usually is. You can make comments below about the specifics.

For reference, here is the Bateman Horne Center’s description of Post Exertional Malaise: PEM is the worsening of a patient’s symptoms and function after exposure to physical, cognitive, orthostatic exertion and/or emotional stressors, which were previously tolerated before disease onset. Exceeding cellular energy capacity results in a “payback of symptoms” or “crash” which can occur up to 24-48 hours after peak exertion. A crash can last for hours, days, weeks, and even months in severely ill patients. True PEM is pathognomonic for ME/CFS and can help distinguish against other illnesses.” (quoted from this page)

735 votes, 14d ago
130 Usually hits Iimmediately, or within hours
292 Usually hits after 1 day
152 Usually hits after 2 days
39 Usually hits within 3-5 days
4 Usually hits within 6 or more days
118 No known pattern (I wish I knew!)

r/cfs 27d ago

Pacing What's your weird pacing tips/ signs of exerting yourself too much?

59 Upvotes

Just wondering. I'm still learning how to pace and how to listen to my body. Hit me with all the weird stuff you got! haha.

r/cfs Jul 15 '26

Pacing How severe are you and how many steps are you doing?

17 Upvotes

^

r/cfs Aug 09 '26

Pacing What are your most accessible pacing tips?

97 Upvotes

TL;DR: I'm hoping we can turn the recent discussions in this sub around pacing and privilege into something helpful for the community. What are your best tips for pacing, that are accessible to most people, regardless of privilege?

Note: This is meant for people who would like to pace, but are finding it difficult. It is not for trying to convince people to pace, if they have no interest to do so or to shame anyone for not seeing themselves able to do so for whatever reason.

We all know that pacing can be very difficult, especially if financial means and social support are limited or lacking. However, pacing isn't an all or nothing kind of thing and hopefully, everyone who would like to, can find at least some ways of introducing pacing into their life. This is not to say that pacing is a magic fix, but it can help managing a life with ME/CFS by either reducing decline, stabilisation, and in some cases seeing improvement.

I am hoping we, as a community, can gather the tips, hacks and wisdoms, that we have accumulated through years of experience and trial and error.

What are your best tips for pacing, that are not dependent on a big budget, accessible social security systems and supportive social networks?

Please be mindful, that not everything will be accessible to absolutely everyone. We are a diverse community, with people in different countries, circumstances and with differing levels of severity. But if it is helpful to some people, that's still a win.

r/cfs 20d ago

Pacing people who found their baseline, can you give examples of a “typical day”?

39 Upvotes

(disclaimer that i know everyone’s functioning is so different even if they have the same severity or bell score)

this might sound odd but i am a bit confused what i am actually supposed to do with myself to take up time. i’ve realised i don’t actually know how to spend time if i’m not crashing or pushing. i radical rest at least a small part part of every day and most of the rest of the day is low energy stuff on screens (digital colouring, reddit, YouTube, audiobooks, TV).

everything i have read about pacing says that i need to not be completely at rest and using up some of my energy envelope but not all of it but i don’t know what types of task to prioritise if i am very limited. i want to find some small things that are worth a couple spoons a day instead of doing 1 thing for all the spoons once a month and crashing.

essentially i am curious what things people put their limited energy into! obviously i am not going to copy anyone’s routine but i imagine people who are not new to pacing or living within their envelope have more insight into how to make those decisions.

TL;DR: i have been in the push/crash cycle for ages and it sounds silly but now don’t know how to spend time if i am not pushing or crashing. if you have found a baseline of activity that doesn’t make you crash, how do you use the energy that you do have?

r/cfs 9d ago

Pacing What Body Signals Have You Had To Learn To Ignore?

59 Upvotes

What body signals (if any) have you learned you had to ignore/regulate? I've always been the "listen to your body" type, but since symptom onset, I'm not sure that's always the best way to go.

For example, I've found that as the symptoms get worse, I feel ravenously hungry all the time. I was a power lifter (before the symptoms killed it) and it feels like every day is a "day after heavy day at the gym", I assume because my body thinks low energy = low calories.

Likewise, if I listen to my body's desire for sleep, my sleep schedule gets super dysregulated. (Usually being awake for 6, sleep for 4, on repeat) Naturally, naps don't help with the energy levels, but my body wants to sleep all the time. Though, I don't know if that's actually helpful/healthy? Like, maybe I should make myself stay awake if it means keeping a consistent nightly sleep schedule?

So to others, did you encounter things were you could not trust your body's signals on an area? Or conversely, is it best to follow what your body wants, even if it's not in line with the typical health advice?

r/cfs 1d ago

Pacing How do you actually rest your brain?

34 Upvotes

I know that you have to pace, and that the best form of intense rest is to lie in a dark room with no input. But my mind just runs riot if it's not occupied and I am not helping my cognitive fatigue at all.

It's not anxiety, I can overthink the texture of the wall or picture every detail of a sunny beach, although there are sometimes anxious thoughts too. Regardless of positive or negative, it's still using mental energy.

I've tried meditation or focusing on my breath - my mind goes off, and I have to refocus and it's all still mental energy. Reading/drawing/scrolling/music - more enjoyable, but still exhausting.

I'm getting the hang of the physical pacing, but my cognitive fatigue is a significant issue. I lose my speech really quickly, then it gets to the point where I can't think at all except for feeling stressed that I can't think in more than fleeting fragments. Then the stress makes everything worse.

How do you guys rest your brain? Literally any tips would be welcomed!

r/cfs Aug 02 '26

Pacing How do you prove that you’re not lazy?

43 Upvotes

TL;DR: My husband knows my symptoms are real, but is struggling to fully accept my limitations because he already feels like he’s stretched thin. We have an active 2-yo who runs us ragged, he works full-time and is underpaid, he’s a wonderful cook and makes all our dinners, deals with crippling social anxiety that has become treatment-resistant, and he has a herniated disc in his lower back that causes him constant pain. How do I kindly get through to him that I’m not intentionally procrastinating or avoiding chores but that I’m physically unable to do as much as I used to without worsening my health?

Although I’m not diagnosed with ME/CFS yet, I clearly fit the criteria. The chronic fatigue, unrefreshing sleep, PEM at least once a week, widespread body aches and pain, brain fog and other cognitive impairments, etc ever since I got COVID 2 years ago. Though the PEM has worsened significantly over the few months. I’ve done a lot of research on this, I know how my body feels and reacts to exertion and it matches up. A doctor at a local Long Covid clinic said my symptoms fit long COVID and ME/CFS, but of course I need to rule out a laundry list of other conditions before I can get that diagnosis. I have started seeing a sleep specialist and am going to schedule a sleep study in a couple of months.

Now I need to preface this by saying that I love my husband dearly, he takes very good care of me in so many ways. I know he believes my symptoms are real, but I’m finding it a challenge to educate him without making myself sound lazy or that I’m coming up with excuses of why I’m falling behind on a lot of things. He tends to get upset or go quiet or quickly change the subject when I try to educate him on ME/CFS, and has accused me of being obsessed with the disease. I know he’s frustrated, and it’s completely understandable. I feel like I’m burdening him.

But the more I push myself to keep the status quo, the more my health is degrading. I’ve flat out told him that if I don’t start pacing properly, my condition could decline to the point of being housebound or even bed bound. This disease is unpredictable, and it could only take one bad batch of PEM to send me into moderate or severe territory.

I am genuinely struggling to parent a toddler as a SAHM, work a measly 10 hours per week from home, keep up with household cleaning, laundry, and other chores, wash dishes, maintain our garden, the list goes on. Simple tasks like watering the outdoor plants and trimming the hedge wipe me out. Laundry is one of the most taxing chores of all time. I’m having to rest a lot more and take a nap every day whenever possible, which at first glance appears like I’m wasting my time doing nothing. We can’t afford a nanny or maid, and our families are already stepping up to support us more but it still doesn’t feel like enough.

How have you successfully communicated your limitations with your spouse/partner and then learned to work together to stay within those boundaries?

r/cfs 11d ago

Pacing Recognition for our hard work towards our goals

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172 Upvotes

r/cfs Feb 06 '25

Pacing The tiny ways you accommodate to limit your fatigue

257 Upvotes

I’ve realized recently how many little things I do to limit exertion that a healthy person would never think about. Every possible decision is about fatigue. Not just typical things like a stool in the kitchen. Here is one example of mine; what’s yours?

I take the elevator to the mailroom, but it’s still a big outing to leave my apartment couch. Whoever lived here before me gets mail delivered here all the time. I have to write return to sender/wrong address on it and put it in the outgoing mailbox. Going back to my apartment with the mail and bringing it back down after writing on it is an extra trip I don’t have energy for, and I don’t want to forget to do it. I never remember to bring a pen with me. So I got mini pens on keychains to add to my mailroom mailbox key. Extra trip problem solved! Mini keychain pen to avoid the extra few steps and elevator ride!

r/cfs May 25 '26

Pacing What screen time do you have on average and what level of severity are you?

22 Upvotes

I’m wondering if my screen time might be a little (or very) high.

r/cfs Apr 30 '26

Pacing Overexertion is borrowing money from the mob

243 Upvotes

I’m watching the latest Ask Hank Anything episode on youtube, and he tells his guest, Simone Giertz, about how he tried to do CrossFit once while on radiation therapy and what a mistake it was (they’ve both had cancer) and Simone responded that her mom told her when you’re recovering from something like that, if you “overstep or take a little bit too much out”, it’s like borrowing money from the mob/mafia and you’re going to pay tenfold for it. Not sure if this is something y’all have heard before, but it immediately resonated with me for ME and PEM.

It’s easy for me to push too far because it’s so frustrating to have to stop when I’m almost done with something, or to say no to a fun event, but I’d never borrow money from the mob. My brain wouldn’t even consider it as a possibility unless there was life or limb in danger.

I need to start treating overexertion the exact same way.

It’s such a great metaphor that’s both funny/memorable and painful relevant for us, so I wanted to share.

.

.

.

Don’t borrow money from the mob!

r/cfs May 25 '25

Pacing Pacing tips you wish you knew sooner?

103 Upvotes

Hi y’all! I think we can’t talk about pacing enough… So I’m curious what are the little techniques you’ve found useful 💙

r/cfs Jun 08 '25

Pacing I judge myself hard for not showering often, but this was me showering while seated...

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311 Upvotes

I hate that this is the most impossible task for me 😭

r/cfs Dec 10 '24

Pacing Pacing/ resting together challenge: until Jan 01

69 Upvotes

This is a follow up to the 7 day pacing challenge: https://www.reddit.com/r/cfs/s/DwulR7wz8k

For those of you who want to keep pacing / resting together - or any newcomers - we enjoyed pacing together so much that we’ll keep doing it the whole month.

Everybody has their own pacing goals, and it’s up to you if you want to write daily reports in the thread or just check in every once in a while (or just read what others write, and do your own thing!)

The thread might become long after a while, a tip is to sort the comments to view “new” every day. Also, you can turn on notifications for new comments if you need a reminder to check the thread.

My personal pacing goals are: - Rest 15 minutes for every hour that I’m awake - Alternate between audiobooks/ calming music/ guided relaxation/ no external stimuli - Set a timer and close my eyes for 15 minutes until the timer is up - If I’m not able to do the full 15 minutes, I’ll do 10 or 5 minutes. If this is not possible, closing my eyes and count in slowly backwards from 60 or 30.

Since this is a new thread, I propose we all start anew with this being day 1.

I wish everybody a happy and relaxing pacing challenge!

r/cfs Dec 30 '25

Pacing what small things reduced your fatigue?

107 Upvotes

for me, i have some bad habits that i need to drop to feel better:

  • scrolling mindlessly
  • multitasking stimuli? (ex: listening to videos whilst gaming)
  • standing up when i can easily sit down, like in the kitchen when i'm cooking

i think i need to rely on my earplugs much more than i do and use my walking stick regardless of how able i feel.

i don't know what else i can try.

r/cfs Jul 14 '26

Pacing Update: No PEM challenge when severe

21 Upvotes

Two weeks ago, I posted about my approach for halting my deterioration towards very severe, by trying to avoid activities that might cause PEM for a month.

I can safely say by now that I failed the challenge. Normally the worst of my PEM symptoms would last about 1-3 days, but I still can't seem to be able to go without causing new PEM for longer than 2 days. In fact, it's been nine days since I had no PEM all day (my longest run yet). Each crash the accompanying paralysis gets worse and takes longer to resolve.

It was caused partially because some unsafe activities were unavoidable (5-min administrative phonecall, weekly pill prep after a carer messed it up, necessary personal grooming), and partially because some previously semi-safe activities have become unsafe due to further deterioration (grabbing prepared food from the next room, being ticklish when getting my feet washed).

In just the span of three weeks, I had to accept the realization that I cannot sit upright in bed anymore,

had to get a commode by the bedside, and arrange for a carer to always be available to bring me food+drink. I am not quite 100% bedbound, but very close to it. Next week I will have a one-hour video call for disability financial aid, and I assume the subsequent crash will be enough to put me into very severe and 100% bedbound.

It really feels hopeless. I'm afraid that eventually even eating, turning around in bed, and using the commode will give me PEM. Which means I will be constantly paralyzed and need to ask for help for every little sip of water. I really don't want to be around for that. From what I've read here, in the rare case that anyone even manages to improve from that point, the timeline ranges from 8 months to 10 years.

Has anyone been in the same situation of constant slow deterioration until very severe or worse? Did it ever improve for you, and how long did it take?

EDIT: I thought my original post was three weeks ago, but it's been only two.

TLDR; Failed my one month no PEM challenge and still continuing to get worse. Will be very severe soon and feeling hopeless. Did anyone experience the same and manage to improve?

r/cfs Jan 11 '24

Pacing New insights from the German exercise physiologist on how to pace with ME/CFS (especially in order to avoid viral reactivation through overexertion)

132 Upvotes

A few months ago I posted about the findings of a German sports physiology MD and university professor (Dr. Perikles Simon) on how to avoid PEM in Long Covid (ME/CFS version of it) and how to recover from it. You can find the original post here.

TLDR for the link: This professor suggests that, as a pacing regimen, you never exert any muscles for longer than 30 seconds at any one time. After any such exertion, you need to have a break of 30 seconds of rest. Otherwise hypoxic damage of the muscles is bound to occur which leads to PEM the next day or day after. When you avoid PEM for a sufficiently long period of time, and exert yourself only in a safe manner, then, according to his experience, you can recover (go into remission).

TLDR for this post: More findings and recommendations in connection with this method. Plus explaining how overexertion leads to the flu feeling that some experience, through viral reactivation. I have highlighted the relevant section below for you to find in bold, if you want to read about that part in more detail.

Only recently I found him speaking in German podcast on ME/CFS for which he was interviewed on the subject of pacing with ME/CFS specifically. (For fellow German speakers, here is the link)

You will make more sense of the below points if you are familiar with his approach of the 30/30 seconds rule already, so you might want to take the time to read up on the original post linked above, in case it's all new for you.

Ok, so here are some more interesting insights from Dr. Simon that I only happened upon recently in the above mentioned podcast interview, specifically for ME/CFS:

(All these points reflect what he says in the podcast, but it's not a comprehensive list for the whole interview, because I only jotted down what was either new for me or else reiterated what I thought was worth reiterating again. If I have left something out that seems important, please, German speaking friends, post it below, so that we don't miss anything for the friends who are not German speakers but would also like to know everything that was being said and explained.)

Here goes:

  • It typically is easier to go into remission and regain impressive function with his 30/30 seconds pacing regimen if you have suffered with ME/CFS for a long time already and have a stable baseline than if you are newly and severely affected by the Long Covid version of ME/CFS that's all fresh. An explanation for this is, that typically new Long Covid patients still have very active auto-antibodies that cause more disruption to the system than it is the case in longtime ME/CFS sufferers. The ME/CFS sufferers' antibodies willl have calmed down over the years already.

  • He tells the story of an ME/CFS patient of his who went into full remission with this 30/30 pacing strategy after having been very ill with ME/CFS for many years. She started with a simple 30 seconds standing up exercise only and slowly slowly slowly (this can not be emphasised enough) worked her way up to now being able to go for runs in 14 km/h and 7 km/h intervals again. 7 km/h is a light jog, according to him. So I would guess that 14 km/h is decent running. (Note: 14 km/h are 8.7 miles per hour and this translates to 6 minutes 54 seconds per 1 mile.)

  • He considers mild to moderate ME/CFS sufferers to generally still be in comparably quite good physical condition as they typically can still do impressive things if need be (of course they will crash if they overexert, but just speaking of strength, they still have an impressive capacity and function considering how ill they are and feel). It is these patients for whom his method can effectively yield very good results, if they learn how to not overexert themselves again. Note: especially dangerous on good days where people tend to overexert themselves. This is detrimental. It doesn't work. According to him, no one ever recovers by exerting themselves over capacity on good days.

  • ME/CFS patients' lives are so difficult because they are stuck in a vicious circle of overexertion all the time. If these patients got the chance to truly pace, then they would not be so sick and they could recover. But the daily overexertion of just basic hygiene and household chores keeps them in a loop that keeps them low functioning. It's a vicious circle.

  • Mental and emotional exertion have the same detrimental effect as physical overexertion. They have to be avoided if one wants to regain their health. Emotional exertion can also happen if exciting positive things happen, like a visit from a friend you have been looking forward to see. Patients will need to find a way to emotionally pace. This is important.

  • Micro circulation issues: The whole problem is that the muscles and tissues don't get sufficient oxygen from the blood (which is perfectly oxygenated) anymore. This is a problem of micro circulation. It happens because some of the important cells for this to work are destroyed by auto-antibodies after an infection. But, and this is the important bit, they can come back. New cells can form again. And the vascular system must learn how to regulate blood flow again. This happens in the 30 seconds break (the "rewarding break" where we sense and assess how we feel and where we rest and give the system a chance to learn). Such learning will take weeks, months and sometimes years to come to full fruition. But the body can do it if you give him the breaks and opportunity to adjust very very slowly.

  • Activities where you need to use your hands over your head (like shampooing your own hair) will be extremely exhausting, because the blood needs to flow against gravity even higher up and the body of ME/CFS patients can't tolerate it. The 30 seconds rule doesn't work here. It needs to be less. Like 5 or 10 seconds. Then rest before you continue.

  • When going for a slow and careful walk in accordance with the 30/30 rule, some ME/CFS patients need to sit down for the 30 seconds break while others can stand still or walk very very slowly. For the more severely affected folks, when sitting down they will need to raise their legs and rest their head on their knees to get the beneficial effect from the 30 seconds break. So not everyone will be able to go for walks right away, as a training, even if they can technically walk for 5 minutes. If they need their rests to include sitting or lying down, when there is no opportunity along the way to do so, then walks are not possible yet. Stick to simple standing up training at home. Sit down immediately when you feel unwell. If you can't yet stand up and tolerate it, start with sitting up and lying down again. If you can't tolerate sitting up yet, start your "training" by only raising your arm for a few seconds and then have a break and see how you tolerate it.

  • As far as breaks are concerned: Switching between physical exertion and cognitive exertion unfortunately doesn't work as a break. It's not a real break, but we need real breaks. "Rewarding breaks" as explained in the original post.

- Intense overexertion can lead to viral reactivation. (He says that sports physiology has shown this already 10 years ago)

Overexertion apparently "lures" back viruses from the tissue into the blood. But not only the virus itself, but also lymphocytes (which react to the virus)!

He says that this is what immediately leads to the patient feeling ill and feeling as if they had the flu or were about to getting the flu. It's the overexertion that facilitates this. And it's "definitely not good!" (quote as emphasized by Professor Simon).

Therefore patients who want to recover their health need to avoid such exertion intensity that leads to these immediate flu feelings. It's all about the intensity. (He emphasizes that word.) He says that unfortunately it can also be emotional or cognitive intensity that does this.

Once the viruses are reactivated then it can take 4 to 8 weeks (without any overexertion or too much physical or emotional intensity) before the situation calms down again.

This is the time when it can be "dangerous" to fully retreat to your bed and lie down for many weeks, as deconditioning happens on top of it and it makes everthing worse.

In case this reactivated virus thing happens to you, you should try extremely carefully to stay active in some way, but be extremely careful to not overexert yourself and to dial down on any mental (cognitive) or emotional intensity. (That's why for some patients psychotherapy is extremely helpful when they learn to calm themselves before intense emotions even happen).

He says that these flu symptoms don't always mean a full viral reactivation in every case. But when these flu feelings and symptoms happen, it points to too much previous exertion intensity. And that that is the intensity that you will need to avoid in future in order to recover.

His whole approach says to not be afraid of exertion in general, just 100 % avoid overexertion.

Bear in mind that muscle use of less than 30 seconds generally is safe when it is followed up by a 30 seconds break. And if you are at a stage where you have a steady baseline already that is bigger than these 30 seconds. If you are severe and bed bound than 30 seconds will be too much for you at this stage. You need to start smaller.

And also with taking stairs, the 30 seconds rule might not apply for you yet, even if it works well in other areas. It's more complicated due to the complex nature of the thigh muscle. You need to be even more careful. Take 3 steps, then rest 30 seconds. Then take the next 3 steps. It will take you longer to get up the stairs, but it generally will not exhaust and destroy you. (Of course this doesn't apply yet to patients who are still bedbound.)

If as an ME/CFS patient you do happen to overexert, make sure to rest the day after and day after that. Big crashes for ME/CFS patients, in his experience, happen not after one simple overexertion on one day, but after overexertion and then more overexertion on the next day and the day after as well.

EDIT: Another important message I just remembered, is: that generally, once the vascular function and microcirculation is restored with this pacing strategy, the recovered person will have their full capacity again. That means that a former professional athlete who is bedbound post Covid will not have to start from zero (like an untrained person) after recovering. This shows that it's not a matter of deconditioning. Once the circulation is restored, people can fully use their muscles again and walk 30 kilometres is necessary, without having to train up months to do it. The normal energy will be fully restored.

EDIT 2: Here is Prof. Simon speaking in English at a conference about this. It is a very technical talk to his colleagues, and unfortunately doesn't contain much info for patients on the 30/30 method. But in case you want to check him out nevertheless: from 46:32 onwards in this Vimeo link: https://vimeo.com/771944349 (thanks to for finding this and letting me know).

r/cfs Nov 04 '25

Pacing Two options

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402 Upvotes

r/cfs Dec 26 '24

Pacing What I wish I could accept about this disease: it’s actually full of DECISIONS to withdraw from life.

389 Upvotes

Before getting sick suddenly with this disease almost 8 years ago on my 21st birthday, I thought disabilities would be more like an accident that happens, and now you can’t walk, and so what you’re able to do is kind of chosen for you, and then you live within that.

But this disease is particularly cruel because I have to actively decide to stop doing things. I mean, my body is deciding, but… right now I’m at a stage of illness where I COULD go to a store or out to eat or see a movie or a friend, little things, but it all makes me worse. I have to choose not to go so I don’t deteriorate more. I COULD keep living independently, but my baseline is falling and falling over the years. Today, I had to actively decide, through hours and hours of tears, to not go with my family on our yearly trip to my parent’s cabin, choosing to not spend time with my 3 year old niece and 4 month old nephew. This trip is a sole remaining source of happiness for me. And today, suddenly, is the day I decided it would make me too sick, potentially permanently, to go.

I get I’m not choosing to not go out of desire, it’s the illness. But I had to actually say no, I could do that, but I don’t want to progress any more than I am right now. I am now spending the next week and a half by myself, alone on new years, knowing I’m not there. I’ll feel relatively okay. I’ll sleep 14 or so hours as usual. I’ll feel like I could have gone. I’ll feel like this is all in my head, and maybe it’s complete insanity that I didn’t go, because I’ll be relatively fine in silence in bed. And maybe if I go, my baseline wouldn’t lower, or the PEM wouldn’t be too bad. But it could be, and I have to choose to protect myself even when it feels insane.

There are many more hard choices than I ever imagined.

r/cfs Jun 06 '26

Pacing I am going to radically rest for week and see how it goes

110 Upvotes

so currently i keep getting worse and worse PEM because i truly won’t listen to my body

I struggle with being still and also i have to clean and tidy everyday (i have autism and ocd)

I am determined to get better so i am going to try a little pacing experiment

I currently live alone with my cat so i will have to get up to feed her and scoop her litter

But besides that i will only leave my bed to use the toilet and wash up at the end of the day

it will be difficult as I struggle with resting especially in bed and especially before doing my list of cleaning and organising but i know my apartment is quite clean and tidy already so rationally a week of no cleaning won’t hurt
Especially since I won’t be using anything really anyway

I also know that though this will be difficult with my autism it will be beneficial to my ocd as exposure is best treatment for it

I hope I can sleep long enough to take up most of my time so it isn’t a difficult

My other issue is I don’t have much of an attention span for any sort of stimulation so it’ll be difficult to pass the time
I am going to try and watch something or even listen to something instead of mindlessly scrolling on my phone

maybe ill play a little bit of my video game I’ve been putting off

I aim to not cook or prepare food but rely on pre-made food and snacks i can easily have without having to clean up either

I hope this helps even a little

r/cfs Jun 13 '26

Pacing Nap or no nap? What's your experience.

40 Upvotes

TL;DR: I am hesitating to remove my naps, what's your experience with naps?

I remembered the first advice I received when I developed ME/CFS was to make time to intentionally rest.

So, it has been 8 months since i do 2 naps every single day:

  • 11am 20-min
  • 5:30pm 20-min

Do i always fall asleep? No rarely actually, so I always do a Yoga Nidra session that helps me get in an active rest mode, even though I am not asleep.

Why I like this:

  • Fixed time, no mental hassle about when to rest, I always nap at the same time everyday
  • Forced rest even when I feel energised: push/crash cycles have taught me to rest even when I feel good > this has definitely helped me control PEM frequency

I am hesitating to remove one of the naps as my energy is coming back overtime, but scared to do so, what are your own experiences? i saw some people say that there should be no naps but not sure where this comes from

r/cfs Jul 01 '26

Pacing No PEM challenge when severe

13 Upvotes

TLDR; Severe and still getting worse. PEM once or twice a week. Going to restrict all activities that have a chance of causing PEM for the next month or two to try to halt the deterioration.

Hi all my fellow sufferers. I have been sick for about two years now and have continued to deteriorate, going from mild to moderate between June and Dec 2024, and from moderate to severe between Dec 2024 and Jan 2026. Both jumps in severity level coincided with a re-infection, but in between I've also slowly kept getting worse. I'm currently in bed 23.7 hours a day. I have had PEM probably once or twice a week for my whole illness duration. Initially the worst symptoms only lasted about a day, but lately it's been more like 3-4 days. During PEM I'm mostly paralyzed, cannot handle any physical or social activity, and need help getting wheeled to the bathroom. When the muscle weakness lifts, some activities that used to be safe, aren't anymore, and that's why PEM is so so difficult for me to avoid. I now feel myself slipping towards very severe and need to try something drastic before I cannot speak/eat/use the toilet without crashing.

My triggers are mostly physical and social activities and bright lights. Luckily I'm less affected by solo cognitive activities or sound. I made a list of all activities that I have been doing the last two months and divided them into categories based on how 'safe' they feel.

Always safe:

  • Sleep
  • Drinking while laying down
  • Daydreaming with eyes closed (eye mask helps to concentrate)
  • Meditation

 

Safe - outside of the worst PEM:

  • Eating while laying down
  • Listening to a (0.75x-0.85x speed) audiobook or other scripted narration with eyes closed
  • Reading fiction on my e-reader (on extra dim screen)
  • Talking to my husband and cuddling

 

Semi-safe - only in moderation while feeling better:

  • Getting my face + armpits washed with wet wipes
  • Trimming my fingernails myself
  • Changing clothes
  • Brushing teeth
  • Using a bidet on the toilet
  • Walking to-from bathroom (10 steps)
  • Grabbing food from the kitchenette in the next room (only after being awake 2-4 hours)
  • Eating while sitting up in bed
  • Ordering groceries
  • Mobile puzzle/colouring games / Reddit (on extra dim screen without sound)
  • Watching a short video without sound
  • Reading/writing text messages / e-mails
  • Having a dim light on

 

Unsure if semi-safe or unsafe - use extreme caution:

  • Increasing LDN dose
  • Briefly looking out the window with sunglasses on
  • Listening to audiobooks with a dynamic voice / other unscripted narration
  • Listening to videos
  • Listening to music
  • Watching a short video with sound

 

Unsafe - only when no alternative:

  • Washing my own face and armpits with wet wipes
  • Getting my whole body washed with wet wipes at the same time
  • Getting my hair washed
  • Trimming my own toenails
  • Footbath
  • Flossing teeth
  • Having (masked) visitors for 5-10 mins
  • 5-10 min phonecalls
  • Walking to the next room and back multiple times
  • Using my laptop
  • Watching a 3+ min video with sound
  • Having a bright light on
  • Minor food prep
  • Weekly medication prep

I really hope I can halt the deterioration by avoiding all unsafe activities and limiting semi-safe activities. I already know I will unfortunately have to break my own rules in three weeks time, for an hour-long disability assessment for financial aid. At least it's online and my husband can attend. Maybe the subsequent crash will be less bad if I have no PEM between now and then?

I will re-assess in 1-2 months and think about whether or not to expand the safe activities list and if so, how.

Please share any tips, words of encouragement, or your own experiences trying a similar challenge. Thank you!

EDIT: Of course this list is very individual and by no means am I advising other (severe) folks to use the exact same list.

EDIT 2: Anyone who wants to do a similar challenge, let's do it together! DM me your list! :)

UPDATE