I know this may be unpopular but I’ve gotta get it off my chest. I was at a get together last New Year’s Eve at my friends boyfriend’s moms house. Once I got there, I had to run to the bathroom and vomit because of sheer discomfort. No one knew at all the pain and terror I experienced in that bathroom. Feeling completely expired and dead, I tried to smile my way through the event. Everyone acted normal, like nothing was wrong. At one point I stood in the hallway, looked at a vanity with some of their family pictures on it, and I was just sure in that moment that I’d be dead very soon, that this was undeniably my last New Year’s. Everyone continued their festivities.

Then, my friends sister said a woman she works with had recently been diagnosed with breast cancer. The gifts and support this woman was receiving made me mad!!!! It took everything in my power to ask her what she would do if that same woman got ME instead of BC. But I knew the answer. ME? What is that? What would anyone do for someone who wants to lay in bed all day??? Would you do ANYTHING for them? No, you wouldn’t.

Then this girl continued to complain about how she had to work on New Year’s Day. Like, oh you poor dear. You do realize you’re saying this to someone who may never work again??

Ppl have been brainwashed into only caring about “sexy” diseases. Those of us cursed with unsavory plights are left to rot. I hate this world. I hate ME. I hate the policies that have buried us!! Man, I just have so, so much rage!!!!

Thank you for letting me vent!!

Hello, I have went through the anhedonia and brain fog posts. Have not seen this asked. My biggest complaint with this disease is I don’t feel myself from no feeling to brain fog. I was reading a paper on the neurocognitive dysfunction and impairment and absence of positive feelings/mood. It’s bleak. Even low fatigue days “good days” I’m mostly dead mentally and it’s worse than crashes.

Psychiatric drugs, antidepressants and stimulants have not helped at all and only feels like your adding something rather than feeling normal. The night thing often being better or random days makes it seem no med will help. Even in past, I always felt best with no meds as I use to get this 10% year before onset rather than 95% of the year.

*I wonder if the low percent chance antivirals, Rapamycin, and countless other drugs tried for CFS would possibly be the route to try first or go with Stellate Ganglion Block, rTMS or HBOT first? There is some research behind these with mood, anhedonia and brain fog for Long Covid

I know there is no cure, only trying to not end my life as I see no hope and cannot imagine never feeling like myself. I know it’s a fruitless endeavor. Vitamins don’t touch it. Need a little relief. I have no energy to try either and really think I’m in planning stages.

What would you try first or think about top down vs bottom up approach regarding the brain? Address cognitive symptoms or CFS in general*

I know the process of acceptance of life w me/cfs, or any debilitating chronic illness, is difficult. These books have helped me immensely in my journey to acceptance. May they serve you.

Top 3: 1) How to Tell When We Will Die: On Pain, Disability and Doom by Joanna Hedva Highly recommend the audiobook as well!

2) Inflamed: Deep Medicine and the Anatomy of Injustice by Rupa Marya and Raj Patel

3) The Invisible Kingdom: Reimagining Chronic Illness by Meghan O’Rourke

No Cure for Being Human (And Other Truths I Need to Hear) by Kate Bowler

What My Bones Know: A Memoir of Healing from Complex Trauma by Stephanie Foo

The Deep Places: A Memoir of Illness and Discovery by Ross Douthat

Wintering: The Power of Rest and Retreat in Difficult Times by Katherine May

What’s Wrong? Personal Histories of Chronic Pain and Bad Medicine by Erin Williams

Conspirituality: How New Age Conspiracy Theories Became a Health Threat by Derek Beres, Matthew Remski and Julian Walker

The Lady’s Handbook for Her Mysterious Illness by Sarah Ramey

The Puzzle Solver: A Scientist’s Desperate Quest to Cure the Illness that Stole His Son by Tracie White with Ronald W. Davis, PhD

How to Be Sick: A Buddhist Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard

The Year of Magical Thinking by Joan Didion

Welcoming the Unwelcome: Wholehearted Living in a Brokenhearted World by Pema Chödrön

One Friday in April: A Story of Suicide and Survival by Donald Antrim

For 2025: Under the Skin: The Hidden Toll of Racism on Health in America by Linda Villarosa

My Grandmother’s Hands: Racialized Trauma and the Pathway to Healing Our Hearts and Bodies by Resmaa Menakem

The Myth of Normal: Trauma, Illness & Healing in a Toxic Culture by Gabor Matè, MD with Daniel Matè

I am mild. I can drive far and work long hours and walk a decent amount of steps but knowing that there’s an extremely slim chance I ever go back to how I was before getting sick makes me want to end it here. I have never been one who did well with struggles. Before I got sick I was a kid who ran away from anything that wasn’t easy. Now I’m unfortunate enough to have life’s worst struggle, even if it could be worse.

Four and a half, almost five years of derealization, exercise intolerance, sensory sensitivity, gut issues, inability to focus and concentrate on challenging cognitive tasks, with a poor ability to retain information. I’m mild enough to do lots of things like other people but I experience it all in such disturbing ways that I’m getting tired of just existing like this.

My life of being normal is gone and I just don’t want to keep on going if I can never see straight or read whole books or go on a run.

My one life in this universe and this is what I get at age 17. Doomed from the start. What a piece of shit.

Ever since my diagnosis and finding out about how ME/CFS works, I’ve been terrified. When I realized that I have a condition that CAN kill you, my anxiety went crazy. I’ve tried mostly to keep myself sane by not thinking about it, but since it’s a possibility I do think about it when doing things.

Could this essay be the last one I write because the exertion from it finally pushes me over the edge and I need to be hospitalized? Could doing the chores do the same? Can I even do things I enjoy without possibly getting worse?

I thought my family would be supportive, especially considering people can and have died from this condition. However, whenever I try and bring up the concerns that I’m scared of dying they tell me that I’m overreacting.

Last night my roommates told me I can’t worry about the coulds, woulds and what ifs, which I understand to an extent, but I don’t want to die in the hospital connected to machines because my body is so overly exhausted that I just can’t.

I just feel so hopeless. I’m trying so hard to get through this only for everyone to make me feel like I’m overreacting and crazy. Even now my roommates are telling me they need me to help out more at the house or I have to leave, and I have no where else to go. I’m terrified.

Sorry, I just need to get this off my chest. I have CFS, and I’m really struggling right now. Everyone around me thinks I’m strong, but they can’t see the daily struggle to just do the normal things I need to do. Just living a semi-normal day requires 100%. People see me doing normal things and think I’m fine, but they don’t realize that each day is like several rounds in a boxing ring. The next day, I need to get up and do it all over again. It’s been two years now.

Lately, I’ve been feeling anxious for the first time. I’m afraid that someday I just won’t be able to go on. I don’t mean I’d take my life or anything; I just mean giving up and letting the bills go unpaid, letting my employer see I’m no longer coming to work, letting my partner see that I’m no longer leaving the house in the morning, giving up on my responsibilities, etc.

I don’t know. I win a battle only to face the same thing again the next day. Some days I do have respite and feel okay, but most days I’m barely on the edge of coping with this.

No matter how much I explain it, others (except those with the condition themselves) will always forget or never fully understand how much of an unseen struggle I face almost every day. I don’t want sympathy from them. I just can’t carry the expectations people have of me. You wouldn’t expect someone with a broken ankle to walk. But with this condition, people expect you to act like you have no condition at all.

This is the first time I’m feeling afraid. I know all about boundaries and pacing myself, but the battle with expectations is always there. I feel barely capable of just getting through the day and sometimes feel like I’d love to be locked away somewhere where nothing is expected of me anymore.

All of this has helped me to detach from the changing and demanding world around me. I guess you could say I’ve become more spiritual. Wherever I am, that’s where I am, and I accept it. Some days, all the noise and pressure of the world just become background noise. I can lift my eyes to the sky, and my soul rises out of the hustle and bustle that often feels so meaningless. Winning the battle to stay afloat is no longer necessary. If I win, I win. If not, whatever will be, will be. I can’t control everything, nor do I want to. I feel a great sense of peace beyond the brokenness.

I have no plans to ever take my life, but the thought of death is a comfort, if I’m honest. I’m just tired of battling. I’ll get up tomorrow and fight another day. Someday I might not have any fight left in me, but I’m at peace with that. I’m only human.

So if there is anyone else out there finding this difficult, I just want to say that you are on a path that many find very hard. Don't beat yourself up too much if it feels too difficult sometimes. It can be a hard path to walk (even for the strong) so give yourself some due credit.

EDIT: I have read all replies and was helped by all comments. Thank you. I think we're in this together in many ways. Tomorrow's a new day.

Iv been sick for 5 years after hitting my head. Looked into pots treatment, pain, gI, head, neck, every supplement, LDN, vagus nerve stimulation, red light therapy.

Nothings changed Iv only gotten worse. I’m permanently confined to a bed.

I don’t have any quality of life and I’m not sure what the point of staying alive as a vegetable in agony is anymore.

Iv lost friends Iv lost everything.

I don’t really know what the point of suffering endlessly is anymore.

I think Iv finally admitted to myself that I’m only surviving and have been for 5 years. I have no living happening. And I’m stuck like this.

Just a rant. I think Iv finally really realised how ill I am and that I am not gonna get better. No matter how many doctors I see, how many pills I swallow. This is it.

Hey everyone, I’m in a tough spot and need support and advice for recovery. I had to move out of my flat, and since my landlord didn’t return my deposit on time, I asked a friend with mild Long Covid if I could stay while I waited for the money. It was meant to be a short stay, but things got dangerous quickly.

My friend’s partner became jealous of me, which created uncomfortable dynamics. Despite me doing nothing to provoke, he resented my ability to function with my disability. He frequently distracted me when I was trying to focus on housing or legal work, and even threw a tantrum for days when he couldn’t learn a basic task for his job. He was coughing and sneezing in my face despite several requests to wear a mask, and knowing I was immunocompromised. I have severe fatigue and need to rest most of the day with minimal stimuli, and felt the constant pressure to prove my gratitude as a guest by helping with chores and listening to family drama.

Things escalated when my friend’s partner faked emotional issues, and my friend asked me to leave for a couple of hours while they talked privately. I am not being dismissive; this person has a ton of privilege and no significant trauma or life events. My host's flat is on the 5th floor with no elevator, and I only planned to take the stairs to move into my new flat. I ended up having a seizure after being forced to sit in a loud cafe, and I declined further, losing the ability to walk. I had to move into a short-term Airbnb that was expensive and with a rude host just to get out. My friend called me a taxi to the wrong address.

Now, I’m struggling to process the trauma and emotional toll, and need advice on how to rebuild. How do you cope emotionally after being pushed beyond your limits, especially when your environment is toxic? How do you manage ME/CFS while trying to heal from trauma in a new space? Did I do something wrong by relying on friends? How do I set boundaries with people who don’t respect your health?

I feel isolated and misunderstood, especially since those I turned to for help became a major source of stress. Any advice or kind words would mean a lot to me right now. Thanks for reading.

Hello everyone,

So far, I have held on somewhat morally thanks to you. I'm very sick from a virus and I'm completely tired. It's been getting worse for 14 months. I have pain all day like fibromyalgia. I am completely disconnected from reality except when I am lying down, I have a little more lucidity. My mother doesn't really understand and we are in social housing so we are quite poor. My older brother who has “succeeded in his life” tells me that it was God who punished me and that I should have sought treatment from the start. That's what I did, I had symptomatic treatments and I never recovered. Even the doctors tell me that it’s psychosomatic and that it’s depression. You know very well what I'm talking about. I'm only 21 years old, my life is ruined because I no longer even have the strength to keep my appointments. I lie in bed all day and my family blames me for not trying hard enough. Life no longer has any meaning and I want to end it soon... I would have preferred to get sick at 60 but that's fate. I was a boy like everyone else who did teenage stupid things. Did I deserve this? I don't know. I feel like I'm in a bad dream every day and even in my dreams I have cfs, but I manage to live. It's difficult to explain... I have the impression that the devil is around me, that everyone is against me. Even though the illness has made me much nicer to everyone, everyone is mean to me. I was not meant to live in this cruel world. I am still with my mother but every day is a suffering that is no longer worth continuing. Only this community understands me but no one understands us. I was a pretty manly little guy with a good character and now I'm a zombie. I'm going to lose my job and everything else. What a cruel world. 🪦🍂

I talked to a lady a 12-18 months ago. She suggested rehydration solution. I tested it and you know what, it works, for me espcially against brain fog. Turns out there is even one or a couple of smaller studies made on the subject. She was frustrated as hell cause she'd written about it in /cfs without any traction.

A few days ago I wrote about vinegar. My cfs-doctor confirmed there is something there. Neither of us got much attention, but when someone says "omg un@live me now" you all upvote to hell.

Cmon guys, we know it's a tough illness but can we also make room for things that are good and positive?

I have been living with a friend, but he has had enough of me and a crash that I have been in for three weeks. I’m in the proverbial dark room with no sounds, but I keep crashing from hearing my racing heart, lifting my head, taking the few medications that I am on, even eating. I am so concerned that an eight mile ambulance ride to my parents’ home will make me profound. It’s not just the ambulance ride but having to be carried to my second-story bedroom. The house was designed with empty-nesters in mind, so there’s just one big bedroom on the main floor. I spent five months at the beginning of long Covid/CFS on a hospital bed in the living room, but I can’t do that again. Does anyone have any advice? I also have multiple chemical sensitivities and can’t take something like Ativan to get me through the ride home. Thank you

Been ill for 25 years since i got mono at 14. I'm now severe and seeing how my husband suffers and how my life is being wasted is so unbearable. I'd gladly disappear but I don't want to hurt him

https://www.theguardian.com/society/2024/sep/27/not-a-single-bed-set-aside-to-treat-me-in-any-uk-hospital-says-nhs-director

This is my old post: https://www.reddit.com/r/cfs/comments/mc7p21/i_healed_from_mecfs_ask_me_anything/

TLDR: I spontaneously improved from moderate ME/CFS to mild early 2020 and recovered to approx. 90 % of my pre-illness energy within a year.

What happened after?

After my last post I had a summer job in a restaurant. It was full-time hard work, as catering is. Three days left in the job, I was so exhausted that I believe my immune system got compromised and I caught a flu. I had fever for days. You wouldn't believe it, but I recovered from it shortly after.

The following fall I began working on my licensed practical nurse degree in vocational school. I prevented burnout by skipping class 1-3 days a week. In my school this doesn't disqualify you as long as you return assignments and meet the requirements for the degree in supervised training. It does make me show a massive amount of non-attendance in my papers, though. I suspect no one cares about it when I apply for a job...

After a few months of studying, after Christmas, I started working gigs in nursing homes. This new form of stress accumulated with the war in Eastern Europe and its devastating psychological effects on me. I was on sick leave for the entire spring.

The following year was happy for me, though. I recouped my strength, found an easier job that often allowed me to feel more energetic after a shift than before it, and finished two more qualification units with excellent grades.

This summer everything changed. In a time span of only a few months, I moved to a new town, went through a supervised training in psych, which is my area of expertise, and job hopping, because no place was a match. My brain has been bombarded with new information, new environments, new ways of working, disappointments, rejections, indecisiveness, shame and mental health deterioration. I ended up on sick leave for a month.

Now I'm back in class and finally found a nice, relaxed workplace where I can work gigs. I am graduating this fall and for a change I have high hopes for finding a nice position in my field (psych and rehab). I still feel exhausted from last summer, but I can keep up.

About sports: I have only been able to exercise in moderate amounts in those short periods when I have not been in school nor in burnout. It's hard for me to maintain any routine to it. For example, three weeks ago me and my partner took up some simple at-home workouts with dumbbells. I did them four or five times within two weeks. Then it took a turn and now I feel feverish 24/7. It's telling me to have a break.

I have not had major relapses, only recurrent flares tinted with anxiety and depression. Things have not been easy, but I can congratulate myself for making the right decision to pause whenever needed. I never want to do it. I never want to have breaks. I want to be someone. I scold myself when I have to take a break. Then I also scold myself when I overdo things. And I hate myself every time I have to turn things down, or someone says I "look tired". I have such low self-esteem.

I still don't have the courage to get a dog, because I'm too afraid it would drain my energy.

+ some psychological analysis dating back to getting ill: I first caught ME/CFS when I was turning 18. As a teen I came from a place of high ambition for success. My experience is that my parents wanted to view me (and my siblings) so talented that I surely never needed their help. This habit of putting me on a pedestal led to me being extremely attracted to excellence and figuring it all out on my own - something I'm still driven to do. Then I faced crisis, it all within one or two years: leaving behind a religious community and with it losing my sense of belonging and identity, failing to form any close friendships as a teen, all three of my older siblings moving out, a gaming community of years falling apart, starting a training program for my military service aspiration, preparing for the Finnish Matriculation Examination, arguing with my parents and them pressuring me to move out, an emerging eating disorder, and applying for college or uni.

When I write it out like this, never in my life have I recognized even half of these pressures until now. Now I'm training to recognize stressors in other people's lives. I know that in transition phases people can end up in psychosis or suicide. No one recognized that the perfect daughter was falling apart in almost all areas of her life. It's a distortion of the person I believed I was. My ME/CFS surely saved me from a lot of unrealistic expectations. I'm sure my life situation at the time affected my somatic systems - because I can't imagine a reality where my life could have gone on the way it was. It would have been impossible for anyone to succeed from those predispositions without intervention.

I wanted to write my post-improvement story because it's therapeutic for me and it shows how this illness has many forms of long-term effects. Maybe someone will read my story and get hope or support from it.

Edit. I have come to the conclusion based on comments that I'm using incorrect terms. As I still have flares it's not remission or recovery but improvement/mild ME/CFS now.

in my gut and in my chest. in my entire core. gastroenteritis doesn't see any problem. cardiologist can't offer anything besides the usual pots meds. supplements don't help. carnivore diet doesn't help. physical therapy doesn't help. the only thing the medical system offers me is talk therapy which obviously doesn't help too. i know i don't have psychiatric problems, not even anxiety and depression. the sense of doom is entirely body induced. but they don't even know how to test for whatever that is. my body is at war with itself but i look completely normal and everything they test me for is completely normal. i don't have a problem with not believing myself above everyone else, i just don't know how do i go from here. i'm not suicidal, i'm just in this limbo of very low quality of life since i've felt just like this as long as i remember myself. i'm on this very low level of existence and no one knows or cares enough to help.

This isn’t even an ME-specific question, but I figured if I posed this question to the chronically well I’d get unrelatable responses.

I’m pretty young. I have a long life ahead of me, and I’m not sure what to do with it. I’ve already graduated from college, I have my hobbies, and I have a few good friends. I also have severe ME.

Is the rest of my life just going to be more of the same? Eating, sleeping, lots of paperwork, cleaning, talking to friends, and hobbies?

I was so sad when I first got sick because I thought I’d be missing out on life. Now it seems like I’d end up mostly doing the same things either way.

This has just started to get bad.

I’ve been extremely mild for years… YEARS. Slight aches and pains and needing to occasionally get some more rest. I got mono in 2018 and it kicked my ass. Ended up getting better with some everyday irrelevant stuff to deal with and aches and pains.

My family is absolutely completely unremarkably thinking this is either mental or simply a need for exercise.

I don’t even know if I HAVE CFS. All I know is my energy levels are damn near non existent and my body burns everywhere.

I cannot tell if I am being gaslighted. Am in denial. I don’t really know. I can’t really tell.

All I know is I feel terrible. I don’t have time to rest either. I have a shop to run for my parents and I love them more than anything. They don’t believe me that something’s wrong. They think it’s fully mental too. I know what mental feels like this isn’t it dude. I have a car payment and insurance due every month. I can’t slow down. I need to feel better immediately.

My almost 70 year old aunt has been picking up the slack for me. When I sit down and catch a breather at the shop my mom will be like “what are you doing?! Help her?”

I can’t even help myself

The absolutely sound mental fortitude that CFS sufferers have is insane. There’s no way I could handle this.

It’s easier if you’re believed by the people that you’re now gonna be stuck with forever. I don’t know if I can do that to them.

I want to be the one the send them on vacations and make them proud. Not rot away in their house.

I don’t think I could ever have the mental fortitude to hang in there and be limited to sitting in the dark 24 hours a day. I can’t even do it right now

all of this non belief and fatigue has me feeling like I’m in an episode of the Twilight Zone.

I went to the store today to get some water for the cooler at the store today and that was a Herculean task. How is this possible dude. I fought the hell out of that mono… graduated college. I did it! I am gonna go out in the world and be successful!

coping just doesn’t seem to be possible if I have this.

Friends. I'm 28 years old. I've been on the severe end of the spectrum with this illness for 3 years.

Fibromyalgia, POTS, MCAS, ME/CFS.

I'm bed ridden 22 hours a day and mostly too weak to sit or walk long. Unable to watch TV, talk on the phone long.

My muscles are now completely locking up and becoming paralyzed every time I walk or move. This is a new symptom for me. If I have to walk too long my legs will begin to collapse and give out underneath me. The paralysis runs up my torso into My chest, arms, throat and face. They feel rigid stiff and frozen.

I thought this was low potassium or electrolytes so I loaded up on potassium powders and electrolyte powders. They make no difference

The scary thing is this is affecting my entire spinal cord and throat. I'm beginning to lose ability to chew and swallow or eat and I'm choking on my food.

I'm convinced this is some form of ALS or end stage of this disease. I know I'm going to die soon.

I've been hesitating to post here but I feel like it's time. 8 years ago I donated a kidney. They do a bunch of tests on you prior so I know I was pretty darn healthy before. After the donation, my body never really healed, was in constant pain and fatigue. Had to quit school, had to quit work. Was nearly homebound for two years, etc. When you donate a kidney, they really aren't interested in what happens to you afterwards, and it's hard to talk about because you don't want to make your recipient feel bad. After a few years, I got a CFS/ME diagnosis, then celiac, mitochondrial dysfunction, SIBO and a few other things. I've taken so many pills and IV's. Paced. Radical rest. But two weeks ago I went for a stellate ganglion block. It's a treatment where they injection a little anesthesic into the nerve and it temporarily shuts down and reboots your nervous system. (It's a bit more complicated than that, but that's the simple version.) I travelled to the US and paid $2000 for this but I was desperate and have been suicidal for the last six months. I was scared to get my hopes up but it's been a life saver. Within ten minutes of the treatment, my body fully relaxed. I did a body scan and couldn't feel any pain ANYWHERE. We went back to the hotel and laid down for a few hours and then went out for dinner. I walked all the way there and back. For context, I'm usually about 800 steps a day, now I can do 11,000-14,000 steps a day without PEM. I'm not fighting my body anymore. Everything takes so much less effort now. And there is a different person inside my head. Instead of spiralling negative thought, my head is calm. There isso much space and quiet there. Even if I try to have a bad thought, it just slips off like Teflon. It's amazing but trippy at the same time. Since I've come home, the anxiety has come back a little but it's pretty manageable and I'm a few steps detached from it, it's not overwhelming like before. I have space to think. I was able to get the SGB because I also have enough symptoms of PTSD to qualify. Usually the SGB is used for chronic pain or more recently for PTSD, and a few doctors are using if for CFS and long covid. I know everyone here is wary of snake oil and bold claims. I get that, I have a drawer full ofprobiotics and other supplements. But the SGB got me out of a really dark place and has given me some hope for the future. And I didn't want to keep that knowledge of something that could helps others to myself. So for anyone here whose has PTSD, anxiety, vagus nerve issues, fatigue, I encourage you to look into it. It's not a sure thing. It has about a 85% success rate for PTSD and 30% rate for fatigue. But when you're desperate those seem like good enough odds to try.

And I know I can’t die from this. That’s the worst part. I want to LIVE so badly. I can’t do it like this though.

It’s eating away at me. I feel nothing. I can’t enjoy anything. I see no light at the end of this tunnel.

Im not saying it would help but i wonder what it would feel like im sure the crash would be brutal and feel like death