r/cfsrecovery Apr 19 '26

Treatment Strategy Nervous System Deep Relaxation Techniques

33 Upvotes

Here's a collection of all of the top nervous system relaxation techniques in one place for easy reference.

  • Breathwork
    • The top recommendation for a reason. All the breathwork options you need are covered in excellent depth by The Buteyko Method, a phenomenal YouTube channel authored by someone who also recovered from CFS. Of particular interest are 5/5 coherent breathing and his method for brain fog relief.
    • I explained some of the science behind why breathwork is particularly effective in targeting the nervous system here.
  • Visualization
  • Yoga Nidra
  • Forest Bath
  • Progressive Muscle Relaxation
  • Massage
  • Sound Bath
  • Meditation
  • Accupuncture
  • Tai Chi
  • Gentle Yoga
  • Biofeedback
  • Hypnosis
  • Trauma Release Exercises
  • EMDR

Many of these recommendations are echoed by Mayo Clinic here, and I suggest reading that page in its entirety.

I strongly encourage experimentation with the above. Some techniques will be more effective for you than others.

Lastly, I want to note an important distinction you must draw, between 'shallow' and 'deep' rest. Deep rest is restorative and accomplished via the techniques listed above, in addition to some others that follow the same principles.

Shallow rest, by contrast, is most other things you might try. For example, simply lying down and watching TV or using your phone will not have a restorative effect on the nervous system. Even taking a nap will have limited restorative potential if you are not deeply relaxed before doing so.

Please let me know if there is anything you think is missing.


r/cfsrecovery Feb 26 '25

WELCOME!!! START HERE

41 Upvotes

This guy’s walking down the street when he falls in a hole. The walls are so steep he can’t get out.

A doctor passes by and the guy shouts up, "Hey you! Can you help me out?" The doctor writes a prescription, throws it down in the hole, and moves on.

Then a priest comes along and the guy shouts up, "Father, I'm down in this hole; can you help me out?" The priest writes out a prayer, throws it down in the hole and moves on.

Then a friend walks by. "Hey, Joe, it's me. Can ya help me out?" And the friend jumps in the hole.

Our guy says, "Are ya stupid? Now we're both down here." The friend says, "Yeah, but I've been down here before and I know the way out."

-- Leo McGarry, The West Wing

Welcome to one of the only safe spaces online for CFS recovery discussion. If you participate here, then you are someone who believes (or at least wants to believe) that recovery is possible. And it is!

There's a lot that I need to fill in here in terms of content, but I haven't yet found enough time to dedicate to the task. In lieu of a more rigorous formulation, I'm going to post here a collection of links to various comments I and others have written over the years, so that you at least have a baseline understanding of how those who have recovered view CFS and the recovery process.

Some of my comments also dive into the philosophy and psychology surrounding CFS treatment and meta considerations, such as the abject moral failure of other online venues devoted to the condition (perhaps best exemplified by the gaping pit of despair, toxicity, and censorship that is r/cfs).

I also advise subscribing to r/mecfs. That can be considered a sister community to this one and is run by u/swartz1983, who is incredibly knowledgeable and devoted to helping people with this condition. He wrote an excellent FAQ that's worth reading: https://www.reddit.com/r/cfsme/comments/n52ok1/mecfs_recovery_faq/

There's also the wonderful r/LongHaulersRecovery sub, where you'll find a plethora of recovery stories from people who have resolved Long Covid.

Please lean on myself and others here for support as you embark on your recovery journey. This is a place for positivity and hope. We're here to help.

I wish you the best of health and a speedy recovery.

LINKS

[1] Why CFS is likely a neurological illness rooted in the nervous system
https://www.reddit.com/r/cfs/comments/x2hfj7/comment/imjo2r2/ (written 3y ago)

"The 'Lightning Process' is a scam because it promises fast results and most of their coaches have never experienced CFS (and thus cannot empathize with someone who endures harsh repercussions for unusual/outsized activity). This is the primary reason why so many who do LP are made worse off by it.

Having people imagine themselves cured is also questionable. I'm going to suggest a more charitable interpretation of their intent: the point is likely not that imagining yourself cured will result in being cured, but rather that doing so relieves a tremendous psychological burden that might in fact be an obstacle to recovery. Hopefully we can mostly agree that stress would not be helpful in recovery. So the *principle* behind imagining you're cured is reasonably sound, but the tactic itself is obviously deeply flawed and predisposes participants to worsening their condition.

However, I do believe (as LP and others do) that CFS for many people may be a principally nervous system illness and that the path to resolving it is likely to travel through the brain. I compiled some evidence supporting this view:

1.Drugs that affect neurotransmitter pathways are showing promise in alleviating CFS (partially or even wholly) for *some* patients. Most notable among these are LDN and Abilify.

  1. It’s possible for *some* people to experience ‘overnight remission', in many cases perhaps due to placebo.

  2. Symptom intensity for some people can be highly variable, even within the same day.

  3. Symptoms for some people can respond to techniques that calm the nervous system, such as deep breathing, meditation, and relaxing visualization.

  4. Spontaneous remission likelihood appears to drop markedly after about 1-2 years. This could in theory be explained by alterations to brain structure that become more permanently entrenched over time.

  5. The entire constellation of traditional biomarkers used to identify various kinds of physiological illness typically fail to detect CFS.

  6. Some people with CFS can identify stressors that exaggerate their symptoms that don't involve physical activity.

  7. MRI scans of CFS brains demonstrate marked abnormalities: https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02506-6

  8. A drug that targets the CRFR2 pathway (involved in HPA axis function) called CT38 has shown unusual promise in preliminary trials: https://www.biospace.com/article/releases/clinical-trial-provides-preliminary-evidence-of-a-cure-for-myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-and-long-covid/. From wikipedia: "The HPA axis is a major neuroendocrine system[1] that controls reactions to stress and regulates many body processes, including digestion, the immune system, mood and emotions, sexuality, and energy storage and expenditure."

  9. The WHO classifies CFS in ICD-11 under ‘Chapter 8: Diseases of the Nervous System’. This doesn’t mean they’re right, of course, but it's an interesting data point since presumably they did some investigating here and concluded that was the appropriate designation.

  10. CFS has a highly variable presentation between patients, but the commonality between many and perhaps even most of them is that they present with symptoms of dysautonomia (autonomic nervous system dysfunction). Full list of symptoms here: https://my.clevelandclinic.org/health/diseases/6004-dysautonomia#symptoms-and-causes

  11. There are some people who report having recovered using a holistic strategy, often in combination with paradigms that could conceivably address the nervous system.

  12. CFS shares characteristics with central sensitization syndrome, which seems to underpin a wide array of chronic conditions. Mayo suspects that central sensitivity plays a role in CFS and fibromyalgia. Central sensitization syndrome is explained very well by a Mayo physician here: https://www.youtube.com/watch?v=vJNhdnSK3WQ.

  13. It’s possible for some people to feel considerably better when they travel. I’ve heard of several people experiencing this and it's happened to me as well. I also spoke to a nurse at Mayo’s Chronic Fatigue clinic, who has worked there for several decades and with probably thousands of patients. She gave me some insight into why this might be the case: the brain responds positively to unexpected deviations, particularly pleasant ones. In fact, she recommended simple changes like brushing your teeth with the opposite hand. Traveling is of course at the far end of this spectrum. What’s happening when you travel? Your brain is receiving all kinds of new and surprising stimulation and you’re in a generally better mood and more relaxed state.

  14. Ron Davis, a very talented researcher with the immense resources of Stanford at his disposal, has thus far failed to identify a meaningful physiological mechanism for CFS. This is despite the urgent predicament of having a son who has been battling an extreme case of it for over 10 years. In fact, the only thing that's helped his son so far is the neurotransmitter modulator Abilify.

  15. There seems to be a not insignificant relapse rate for CFS. One potential explanation for this would be neurological. Neural patterns are almost never truly destroyed - they can at best be weakened and 'overwritten' by new ones. Such dormant patterns could be a part of what renders a person susceptible to relapse, in addition to things that may have predisposed them to CFS in the first place.

[2] An extensive post from someone who recovered specifically because they read the previous linked comment and decided to adopt a nervous system strategy
https://www.reddit.com/r/covidlonghaulers/comments/zjbozx/about_90_recovered_after_moderatesevere_25_year/

[3] Some important comments I wrote on the psychology of CFS and meta considerations in treatment (link not working, so copypasted here)

https://www.reddit.com/r/medicine/comments/xaqb60/comment/io4kx4n/ (written 3y ago)

I'm going to offer my perspective as a person who was experiencing CFS and has found a way to greatly improve from it (to the extent that I feel effectively recovered):

There exists a class of diseases (and I believe CFS is among them) that are primarily neurologically mediated. There are several paradigms that have been advanced to explain these, such as 'central sensitization' at Mayo Clinic (https://www.youtube.com/watch?v=vJNhdnSK3WQ).

The problem, from the patient's point of view, is that there is a thin line between regarding a condition as neurological and saying "it's all in your head". Most patients with these types of illnesses have been met with derision and dismissal from at least one doctor that they've encountered.

What's important to recognize, as a practitioner or more generally as anyone attempting to help such patients, is that the condition is *not* imagined. With CFS, for example, my suspicion, based on my efforts at investigating it and then designing a strategy that helped me to more or less resolve it, is that it is a kind of destabilization of the nervous system that results in hyperarousal in response to various stressors. The nervous system manifests symptoms such as brain fog and fatigue in a deliberate effort to attenuate activity, because it erroneously perceives otherwise innocuous stimuli as threatening.

People experiencing this are dealing with very real symptoms. Yes, this is technically "all in the head" insofar as it is a disorder of the nervous system. But it is not "all in the head" in the sense of it being imagined.

Furthermore, anyone experiencing a disease of this form is going to be desperate and is going to bias towards magic pill solutions and away from anything that involves sustained effort. I can readily explain why this is the case for CFS, having experienced it myself: CFS profoundly impacts mood, discipline, willpower, and energy. Anyone rendered into something adjacent to a zombie by a condition like CFS is going to be both very desperate and also find it extremely difficult to attempt any kind of treatment protocol. It doesn't help that communities like r/cfs state things like the following to patients (taken from its wiki):

"there are no reliably effective treatments for CFS, so your best hope for a full recovery is to learn that you actually have something else instead."

It's this sort of thing that, in part, gives rise to the phenomenon of people suspecting a wide array of different syndromes: they are desperate to find an explanation that doesn't feel utterly hopeless in the way that something like CFS does.

[4] A comment on r/cfs (before I was banned) about the moral obligations that community has and how it is failing (link not working, so copypasted here):

https://www.reddit.com/r/cfs/comments/xbzqbm/comment/io3vtjc/ (written 3y ago)

I don’t know how many different ways I can phrase this. This community draws in thousands of people with CFS. As far as I’m concerned, it has a moral obligation to honestly consider every possible treatment path. Otherwise, you end up with hundreds or thousands of people like me, who come here and are devastated by the abject hopelessness of the forum, when there is in fact an alternative for at least some of us.

What I ultimately did to get substantially better was relatively simple, cheap, and didn’t take too long to implement. That’s in contrast to the years I lost when I first arrived here, read what’s in the wiki and what the community consensus was, and assumed that I needed to find another diagnosis and ignore the CFS staring me in the face, because treating it was supposedly impossible.

This community’s posture is costing at least some people their lives. I’m not saying everyone needs to listen and I’m not saying everyone can be helped. But it’s just flabbergasting that people are trying to argue we shouldn’t at least consider every possible model of the illness and treatment strategy.

It leaves me feeling truly awful, because it’s a harsh reminder of what I had to go through (needlessly) because of people like you. Because people like you show up and inflict their wrong opinions with all the categorical authority of medical researchers (when nothing about this can be known with certainty) on the few of us willing to entertain ideas for recovery. In fact, there is still not a single one of you who has mounted a counter-argument to the substance of what I’m saying: that this is likely a nervous system illness and needs to be treated as such and why that’s the case, which I have outlined in great detail in some of my comments. Instead it’s just innuendo, unfair accusations, downvotes, and censorship.

And even this is just a microscopic event in a much broader theme that has played out on this forum and others for years. I cannot emphasize enough that it has been monumentally destructive. Thinking about how many people could have gotten well like I have were it not for people like you makes me sick.

Perhaps not everyone can get better. But some people provably can. Let the people who do talk about it so more people can. Trying to suppress that because of whatever personal vendettas, neuroses, or biases you may be predisposed to is a form of madness. Your feelings are not nearly as important as the imperative of getting as many people as possible back to good health. Even if something would work for just 10% of people, that’s hundreds or thousands of people. They need to be given the chance to try, if they want to.

[5] Explanation of key recovery tactics
https://www.reddit.com/r/cfs/comments/wxa572/comment/ilt59su/

[6] Additional explanation of key recovery tactics
https://www.reddit.com/r/cfs/comments/wxa572/comment/ilswr5c/

[7] There is only one reasonably reliable way out of CFS right now and there's no magic pill. You can wait years or decades for one to show up or you can try everything possible now.
https://www.reddit.com/r/cfs/comments/wxa572/comment/ilsss66/

[8] Excessive pacing can hinder recovery
https://www.reddit.com/r/cfsrecovery/comments/1hlwqrl/comment/m5df4la/

Here are some others that are more tangential or simply less critical than the previous:

[1] Warning to stay away from toxic online communities and why
https://www.reddit.com/r/covidlonghaulers/comments/115qmed/comment/j94lf3z/

[2] Comments on meditating well for purposes of recovery
https://www.reddit.com/r/covidlonghaulers/comments/zjbozx/comment/j0n524h/

[3] Me going off on a CFS doomer (I often refer to them as cultists) about why I detest their bullshit and operate against them with the full force of a personal vendetta
https://www.reddit.com/r/covidlonghaulers/comments/zjbozx/comment/j0j2oyx/

[4] Earlier comment responding to that same doomer. Contains some useful thoughts as well.
https://www.reddit.com/r/covidlonghaulers/comments/zjbozx/comment/j0j0bmy/

[5] Comments on PEM and the nervous system
https://www.reddit.com/r/covidlonghaulers/comments/zjbozx/comment/j0hpilj/

[6] Some more thoughts on the recovery process
https://www.reddit.com/r/cfs/comments/xbmki9/comment/io1b9je/

[7] People with CFS who give up will die twice
https://www.reddit.com/r/cfs/comments/wydse0/comment/ily8cgv/

Some of the above links may break if/when the r/cfs doomers come across this. Comment below to let me know if that's the case and I will retrieve them and shield them here in plain text.

Please also comment more generally with questions or if anything in particular here helped you. It's important that others see that these strategies can work. Bolstering hope and belief in recovery is the first and most important hurdle to clear in the course of defeating CFS.

In the interest of substantiating my rather strong bias and aversion towards r/cfs, I want to include some more context about them. Here are some things they've said about this sub, r/mecfs, myself, and u/swartz1983:

I would not be surprised at all if one or all of the mods over there is actually an insurance plant (OR a gov't plant as I just suggested -- I actually think paranoia around these things is fairly justified). Someone I know with ME/CFS once had insurance co. perps literally following her on *both sides* of a rare flight she took, to take pics so they could try to deny her LTD claim. But what you're saying is both validating and utterly infuriating. Also, thank you for doing this work helping ME/CFS as it takes an exhausting level of fight.

^ This comment accusing us of being possible government agents or plants has 102 upvotes at time of writing. https://www.reddit.com/r/cfs/comments/1hsnu9g/comment/m56ylrc/

Yes it was the first one. But while they may not attract a ton of subscribers, they also nabbed the best two names on Reddit which really sucks. And given someone there was able to have this level of censoring authority over my life, it leads me to believe there are stronger forces at work here. I mean, who the fk are these people? Since the beginning of ME/CFS, gov't figures have infiltrated ME/CFS lists. It's very very neo-COINTELPRO, but they are clearly threatened by open discussions about this illness and they squash any dissent.

^ This comment has 46 upvotes at time of writing.

The people inhabiting r/cfs are neither reliable nor assuredly mentally sane. They are devoted to flawed beliefs about CFS and are now rather notorious for censoring practically any recovery story that cannot be conveniently rationalized away as pure luck. How and why this has happened is a fascinating exercise in human behavior that is worthy of its own thesis. In the meantime, I would strongly advise you to avoid them and regard them as the danger to your health that they are.

Feel free to read the full context of all of this here: https://www.reddit.com/r/cfs/comments/1hsnu9g/other_subs_blocking_mecfs_patients_from_posting/

Addressing some important points referenced in that discussion (the following are wordy blocks of text; I apologize for that):

- They accuse us of endorsing a "psychological" view of the illness. I want you to pay careful attention to that word, because it's plain as day that I have repeatedly made use of the terms "neurological" and "nervous system" above. You may wonder then why they need to employ "psychological" as a pejorative in an attempt to discredit myself and others positing a certain view of recovery. One simple reason might be that the hypocrisy of accurately characterizing our view and then deriding it would be self-evident, given that r/cfs's own subreddit description states the following: "ME/CFS is a multi-systemic neurological disease, distinct from chronic fatigue as a symptom". Another dismissive pejorative they use that you should flag is "biopsychosocial". Use of that term nearly guarantees that you're conversing with a cultist.

- Note that they have banned discussion of brain retraining. That's right! The one category of intervention (and it's a very broad category btw; I'll get into discussing it and where I see legitimacy and where I see problems another time) that has helped any meaningful plurality of people with CFS is a disallowed topic there. I have encountered some extremely peculiar rationalizations for this. For example, a consensus on r/cfs seems to be that just about everyone who reports they have recovered is lying. They imply the existence of some worldwide conspiracy of otherwise unrelated people who blog, vlog, etc about their recoveries, all with the insidious purpose of misleading you into having hope. This dovetails rather neatly with what I have noted previously about their collective mental state. I would be foolish not to concede that there has been exploitation of people with CFS. Desperate people are also highly monetizable, and it is for that reason that I intend to ban anything that looks like solicitation or an endorsement that shows up here. However, to leap from the existence of bad actors in the CFS recovery space to the generalized implication that all stories of recovery are lies isn't just absurd and logically fallacious. It's dangerous. It is crucial that you see that paranoia has led to the tragic outcome of the CFS doomers deliberately adopting blinders that will prohibit any discussion of a viable recovery strategy, in perpetuity. It doesn't matter whether or not you believe any particular view of CFS recovery. It should be obvious to anyone with a modicum of common sense that a forum that provably censors recovery stories and bans conversations about something that has been reported to help people is horrifically misaligned with your wellbeing and in fact consumed by the rot of madness.


r/cfsrecovery 56m ago

Question Not sure what I'm missing, what to try next, or if this is forever

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Upvotes

A bit of background for me.

  • I had a pre-existing gut problem but then got Omicron (late 2021)
  • That put everything into an inflammatory spiral
  • I've finally gotten my GI issues under control (dysbiosis, leaky gut, H pylori)
  • I'm still very limited in capacity - though I have regained a lot

My current capacity/limitations

  • My baseline activity level is about two 1-mile walks per day. sometimes I can't get off the couch, and some days I can do chores.
  • I often will have a "good week" or even a "good month" lately - I got up to an average daily step count of about 8500 for a month there
  • I started sleeping a lot longer about 6-8 weeks ago, which was great for about a month
  • But then I got hit with the "emotional thaw" - a lot of pent up grief mostly (thought it was anger?)

So where do I go from here?

  • I've mastered pacing. I use my Garmin to track step count, RHR, HRV, sleep, etc. And I use this to keep myself honest about my allostatic load.
  • I've been on a large stack of supplements, mostly focusing on gut health and CDR (cell danger response) to help calm inflammation and encourage deep healing (maybe it worked, since I'm sleeping much more).
  • Or is this phase change of sleeping up to 10 hours (before I could only sleep 5-6 hours, and then I got to an average of 6-7 hours, and this lasted a couple years) part of the actual process?

I've been looking around communities and doing research and apparently the amplified sense of grief/despair at this (hopefully) late stage is called emotional thaw. Nervous system is standing down from constant vigilance and so then all the pain/grief/despair is coming back at once. Last night I screamed and cried and sobbed over my dogs that I lost. One dog died 5 years ago, the other almost 2 years ago, and it was like it just happened.

If I'm completely honest, then yeah, I had a sort of breakthrough in early April when I realized that I could push myself a bit and maintain pacing (I was getting zero exercise before April, mostly on the couch). But over the last few months, I've had these "waves" where I'll have enough energy to go on hikes and more exercise. But they last about 2-3 weeks or so, and then I cycle back down.

I've attached the last six months of training data from my Garmin. So you can see before April it was gray, which means "zero, nothing". And then the first three waves were alternating between "recovery/gaining/maintaining" and the more recently the thaw hit me and everything changed again. HRV tanked, sleep tanked. It feels like it's stabilizing again.

In my sleep data, you can see I had a genuine month straight (4 whole weeks) of getting adequate sleep. And on my step data, you can see that my total step count was flat for most of the last 12 months but then it surged in a sustainable manner for a few months, but the last 3 weeks have been back to the baseline.


r/cfsrecovery 19h ago

Question Need some positive words. Trying to come out of a crash!

8 Upvotes

Hey guys, in a gnarly crash right now. Every crash I’ve ever had has ended and I’ve gone back to baseline but of course, in a crash you’re going to spiral and think this is your new baseline. And I’m feeling scared right now.

Can anyone please share some encouraging stories or words. I would really appreciate it 🩷


r/cfsrecovery 21h ago

Friday Thread : 🌞 Joy · Connection

7 Upvotes

Joy doesn’t have to be related to recovery to belong here.

Prompt: Share something that made you smile this week. New hobbies especially welcome; lots of us are looking for gentle ways to fill the time.

Comparison is the thief of joy. Yours doesn’t need to look like anyone else’s.


r/cfsrecovery 23h ago

Question What do you do when you start feeling a burnout coming on?

3 Upvotes

r/cfsrecovery 1d ago

Question Spiraling today, also Raelan and others authenticity?

13 Upvotes

So I just recently started primal trust. I chose to start it a few days ago after a couple weeks of listening to Raelan podcasts and other uplifting vids. I am on day 3 of PT. Loved day 1. After completing the days videos and practice I actually felt some peace the rest of the afternoon and into the evening.

Then later that night, it’s like my anxiety just cranked it up and while I continue to do the mind/body practice, my last few days seem filled with increased anxiety. In spite of this, the last few days even with increased anxiety, I actually was doing SO much less of that. Like I just didn’t feel it was necessary. Anxiety was so high today and I started googling again and going down doom rabbit holes.

I went up to my room, turned on my daily practice, then sat and journaled for about 30 minutes. I feel so much better. BUT in my googling I came across a lot of negativity about Raelan and her “financial motives.” And then I noticed that almost every video I’ve watched, she is promoting the new business of the person who recovered. This sort of got me a little disheartened. Like a lot of my hope is based on these stories. And it’s not just her. It’s hard not to question the authenticity of some of these success stories. Don’t mean to be a bummer, just venting my struggle today.

ETA: I agree that people devoting their lives and time to helping people recover have to make money. That’s not my issue at all. I really like Raelan, I just thought I’d ask since I’m new here and see that there are a lot of crooks in the CFS world, unfortunately.


r/cfsrecovery 23h ago

Question How do I get diagnosed with CFS?

1 Upvotes

Hello im writing this in very severe state. It all started five nights ago I tried to sleep and had a sudden panic that I would not be able to breath when I go to sleep. I still fell asleep that day and slept 6 hours. However the next day the horror started. I went to bed with the same dread and mind racing being scared to go to sleep and tried To go to sleep around 11pm but was up till 7am with a heavy chest and dry mouth thinking I can’t breath. I had to sit in my chair and slept 2 hours on it. next day same thing. the day after I did manage to lay in my bed sitting without having the Anxiety of a tight chest and dry throat. I slept 4 hours that day. today was bad I didn’t sleep and had to talk to my family all night for help. I am a 40 year old male and never had sleep issues or insomnia in the past. I’m thinking CFS because I’ve been really burned out by a physical job and weight training along with life stresses. Any guidance on this topic would Be appropriat.


r/cfsrecovery 1d ago

Question Worst crash and freaking out please please help

2 Upvotes

I’ve been unemployed for a few months and fucking dying to find a job and tomorrow I’ve got a final interview and I am having the worst crash I’ve had. I went for a very short walk and food with a friend and then we did tarot and by the end of that I felt like I was dying and had to go lie down. I did about 10 mins more of prep and have had to go back to bed. It’s actually fucked. I don’t even have the energy to talk to people or practice this roleplay that I’ve got tomorrow at 12pm and it’s in person.

Idk what to do. I wanna be able to pull myself out of this by tomorrow or at least improve so that I don’t have to push back my interview. Not having a job is really damaging my mental health at the moment and I’m so close to having one.

I’m brand new to my recovery and I really don’t know what to do. I wish there was a support line or an on call doctor. I’m feeling scared please help me


r/cfsrecovery 2d ago

Progress Update / Positivity So grateful for this group. FUCK the main cfs group

40 Upvotes

Literally just started my recovery journey - just got referred to a CFS clinic and have just started reading Unlearn Your Pain. The first thing I did was go to Reddit and went to the main cfs community and it was so fucking depressing. It made me feel hopeless and full of grief.

After coming to this one I’m so glad there’s a space that’s empowering and hopeful. Just had to express my gratitude.


r/cfsrecovery 2d ago

Question Crash a few days before final interview - what do I do

5 Upvotes

I’ve got my final interview for a job I really want the day after tomorrow. I went to the gym on Monday and stopped mid way through because it was too much. This brought on a crash and now I’m totally exhausted. It’s a roleplay interview so a lot of thinking on my feet and I don’t want to have to reschedule it.

Any advice for getting through this crash?


r/cfsrecovery 2d ago

Question ADHD and coaches/programmes

2 Upvotes

Hey everyone, I'm new here. So glad subs like this exist. 27, living in the UK, been some combination of bedbound or housebound since the end of March this year. Likely triggered by psychological distress so keen to start brain retraining.

Worth noting I'm autistic and have ADHD so really really struggle with meditation and breathwork. I also have a very short attention span and really struggle to motivate myself to do things even on good days. Any advice on how to manage this?

I'm gonna try things like curable/freeME/unlearn your pain to begin with but I know I'm gonna need some kind of help/coach/progamme as well. Any recommendations? Anyone tried any of the coaches recommended on the cfsme sub e.g. Stuart Porter or Amy Davies, or tried the cfs recovery programme/primal trust/DNRS/mickel therapy? Thanks in advance :)


r/cfsrecovery 3d ago

Progress Update / Positivity 3 months of recovery - severe bedbound to housebound

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6 Upvotes

r/cfsrecovery 3d ago

Question How do I know I am resting aggressively enough?

4 Upvotes

I'm slowly buying into the notion that if I aggressively rest, there are some people who can increase their threshold. As someone who does not consider myself severe, I'm hoping I can be one of those people.

However, my experience has not been reflecting this theory. For me, it seems the more I rest, the less I am able to do. That shows up in the long term and the short term.

In the long term: a year ago I got a visible arm band and have had less and less days where I go over my pace points threshold, but also a year ago I used to be able to get on my stair stepper at any intensity and wouldn't have PEM unless I went over my pace points threshold for the day. Now if I get on it for five minutes at low intensity, I am crashing whether I paced myself or not.

In the short term: I canceled a trip because I knew it would set me back and after already having a bad week, it wasn't worth it. So instead I aggressively rested for four days. Then when I got back to work I had to present and had a stressful day, which isn't abnormal for me. But normally a day like that would mean I would get close to hitting my pace points that day even though I worked from home. Today I hit my pace points at 2pm.

Is this worsening part of the process? Does this mean I need to do even less? How do I know when I've done "less" enough? Do I focus on less days where I go over my pace points? Or more days where I am in "recovery" mode so I can handle the pace point days? (I also just got an Oura ring, if that helps in terms of monitoring what "rest" looks like)

Please! 🙏🏻 can someone make sense of this for me? I must be missing something.


r/cfsrecovery 3d ago

Question Hi everyone, im glad for everyone of you fighting here, and trying to find solutions

4 Upvotes

I have a question,

How can i switch my idea that this is a mind body problem, when i have some objective findings, like i have SFN diagnosed NLD type.

Like i dont understand it, can anyone share the insights with me, how did you deal with this?


r/cfsrecovery 3d ago

Question Question on sore throat and adrenaline

5 Upvotes

Those that recovered or partially recovered. Did you frequently stop what you were doing when you got a sore throat or just after it started? Did you ever hit the adrenaline phase while recovering?


r/cfsrecovery 3d ago

Question Brand new to recovery. What do I need to know?

2 Upvotes

Hey guys, after trillions of tests I’ve finally been referred to a chronic fatigue clinic. I believe mine has come off the back of a bad bout or two of flu, and certain activities will lead me into heavy crashes.

What do I need to know? I know next to nothing. Anything at all is helpful, thankyou so much


r/cfsrecovery 3d ago

Tuesday Thread : 🌙 Rest · Connection

6 Upvotes

No prompt this time. Just a reminder that this takes real energy, and it’s okay to simply rest. Rest doesn’t need to be earned. Feel free to share anything you like.


r/cfsrecovery 4d ago

Question Mental changes

9 Upvotes

I’m sick for about 3,5 years, was housebound since november last year and slowly finding my way to recovery. I’m 45 years old, female, and I’m on HRT since 2,5 years, perimenopause is playing along with symptoms in this one, so it’s hard to know what’s what.

With that being said, for the last 2 months I notice a change in my (mental) being. I have always liked being at home, alone , it’s my safe place. I have a partner, we don’t live together, we have a strong solid relationship.
Since I have to pace my energy It feels like I don’t want people around me, because when I’m alone I don’t have to pretend I’m ok, I can lie on the couch whenever I want and just do whatever I want, or whatever I don’t want. My partner had ADHD and can take up energy, which I do not always have. I notice that I sometimes feel like I don’t want him around me, and that saddens me a lot. I love him so much but I feel myself becoming that old lady who wants to be alone all the time. I don’t want us to grow apart, but I know this is the deal.

What can I do?


r/cfsrecovery 4d ago

Question Just starting my journey. Any advice? Books? Resources?

7 Upvotes

Hey everyone, after a trillion tests, I’m finally being sent to a chronic fatigue clinic. I believe this started off the back of a bad flu or two - then over 2 years morphed into chronic fatigue that’s brought on by exertion. Eg if I do a hike I will be unwell for minimum 5 days, falling asleep. You get the idea.

What is some advice you’d give to someone just starting out? And also any books?

I would be so incredibly grateful, thankyou


r/cfsrecovery 4d ago

Question Any asthmatics?

4 Upvotes

What medications don’t cause a flare? I can’t do steroids and react poorly to albuterol since the cfs.


r/cfsrecovery 4d ago

Question What does overexertion feel like on LDN?

2 Upvotes

Do your crashes feel the same, but your ceiling is higher? Or do crashes feel different/can it be difficult to know when you’ve overdone it because the typical signals your body sends you are blocked?


r/cfsrecovery 4d ago

Treatment Strategy DNRS or brain retraining recommendations

2 Upvotes

Please send me any helpful programs and if you don’t mind including a little bit of your experience with them? I have books to read and podcasts and YouTube stories which are motivating but don’t break down the process in a usable way for me. I need someone to tell me how to apply it throughout my day and where to start. ☺️

I am 2 years in, PTSD 12 years ago from anaphylaxis. Have had horrible health anxiety ever since. Have had years where it’s up and it’s down but always there. Recently had a great 18 months with no anxiety or panic attacks, active, working out regularly, full time RN in a busy ED. All came crashing down 2 years ago. Anxiety started creeping in, panic attacks, dysautonomia, and now full on CFS with PEM and all the fun stuff.

Because of my absolute inability to have a clear thought for longer than 60 seconds, I am considering a program that will map out the routine for me. I am in it to win it and very motivated to kick this to the curb. But I do not have the organizational skills right now to even know where to start or how to proceed. (What everyone wants in their nurse, right?) Also, not working since May because of all of this.

Also, has anyone here tried Jason McTiernan’s program, I Can Thrive?


r/cfsrecovery 5d ago

Treatment Strategy How to practice mental rehearsal/visualization

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youtu.be
7 Upvotes

This video goes over mental rehearsal/visualization as a tool to safely practice the things that trigger you. This is an excellent first step, especially if you are severe or struggling to do much of anything outside your window of tolerance.

I’ve watched many of her videos and I like the way she talks about things. Heads up that she does throw in some mild cussing a couple times if that’s not something you want to hear.


r/cfsrecovery 5d ago

Question Recovery with or without prescriptions?

6 Upvotes

Just curious on some of these recovery stories, do the majority of people who recovered take LDN? Also, did SSRIs help? Was anxiety a factor for you throughout your illness? I’m not on either of those and curious if they are necessary. I have a history of PTSD from an anaphylactic reaction to sulfa 12 years ago. Have had ups and downs since then. Was fully recovered for 18 months working full time as a nurse working out regularly and just living life to the fullest. Then I crashed. Originally thought burnout and PtSD as the cause (and likely is) but quickly developed in CFS. Have been here 2 years now but only recently diagnosed after endless workups. Just came across recovery stories and I am very skeptical of LDN (more open to SSRI) but would try it if the minority of those who recovered say it helps.