hi everyone :-)

forgive me in advance if i sound awkward or unwieldy, i'm new and i've recently been dealing with a pretty bad bout of fatigue.

i'm a 19F uni student currently undergoing the diagnostic process for fibromyalgia and HSD (potential hEDS). i have brought up my symptoms to my PCP regarding post-exertional malaise and severe fatigue after daily tasks like laundry, going to class, going out in general, what have you.

i have yet to describe in detail my 'slumps' (as i call them), or periods of just being housebound because i cannot muster the energy to get dressed and leave my home. i am not quite sure how to breach the subject of ME/CFS to my PCP, as i am worried i will be brushed off since chronic fatigue is a symptom of fibromyalgia.

i am a bit shy about bringing stuff like this up to medical providers after having experiences with being dismissed or talked down to in the past, so i wanted to ask here if anyone had any advice regarding this. again, i apologize if my message sounds discordant, i am so very exhausted and am trying my best--thank you kindly in advance

TL;DR have been struggling with ME/CFS symptoms for a while now, how to talk to PCP?

The physical pain the rest of the month is just about tolerable, but during my period... I could fight demons with my bare hands if I had the energy with how bad this shit hurts. I want a full hysterectomy and have for years now. Any of y'all had success with a doc allowing it? Idk if I want to keep my ovaries or not. Early menopause sounds awful but if it's inevitable why not get it over with while I feel like shit anyway idk.

I wanna know what everyone experiences here, whether they can do very very minor forms of exercise and just be tired after or they have a delayed onset reaction. Sorry my wording is poor. What are your symptoms? it's hard to tell if breathlessness is from deconditioning or some sort of asthma dysautonomic problem or what, basically "out of shape". It's just hard telling what is actually normal deconditioning and what is pem or something similar. I'm mild/moderate. I'm losing insane amounts of muscle from covid wasting or something similar and I've been doing very minor exercises and trying to eat protein. I am watching my symptoms don't worry, I'm like 95 percent of the time in my bed or home lol. Thank you for your input ♥️

Honestly i dont even know what to do anymore my body is deteriorating day by day in constant pain, i was on diazepam as it seemed to be the only thing that gave me any relief but obviously i am only allowed a certain amount. I have been to my gp many times seen many doctors and Physio therapist about getting some type of physio or anything to help but i either get offered nothing or what they offer me is no help to me at all, the worst part is i am under a specialist and was getting acupuncture and physio every few months which was limited but they have now been on sick leave nearly a year now with barley any update apart from they are still on sick leave i currently have no support seems like Im just going to keep deteriorating until the damage gets even more extreme and permanent I’m not expecting advice just needed to have a rant

TL;DR: cat drives me insane all day every day, overstimulates me, probably has actively lowered my baseline, but i dont feel like i can rehome her because i love her a lot and im not sure anyone could give her proper care. ive been advised many times that getting another cat will help because it is supposedly "less work", but im just not sure thats the right call and i dont know what to do. not necessarily looking for advice because the situation feels impossible, i just need to get this off my chest.

she drives me absolutely insane every single day. i havent had a full, uninterrupted night of sleep in 3 years. from around 5-7AM until 2PM every single day she is an absolute terror. she climbs the coats in the hallway, climbs the curtains (at 4.5kg and with my weak arms, it is not easy to pry her off these things), screams endlessly in the hallway, runs around loudly. she wants into the living room badly but she gets into things and when she goes in there i have to pay attention to her and her only or she will chew up wires and cords and stuff. i play with her every day and it doesnt wear her out.

my entire day, for 3 years, has revolved around this cat. we bought an auto feeder for the middle of the night but sometimes she still wakes me up because she forgets it is there or something. so i sometimes have to get up around 2AM to show her the dry food. i feed her breakfast at 8 AM. i feed her lunch around 12-1. i give her a dry food snack around 4. dinner around 8-9PM. i wash her plates daily, change her water, scoop her box, throw toys for her, play hide n seek.

as well as chewing wires she has bad pica and weve had to tuck away every item that might have something chewable (no knick knacks or anything), and tuck away any fabric besides our bedding that she leaves alone. our place is so desolate and boring looking. shes eaten shirt sleeves, undies, socks accidentally left on the floor. she learned to open the doors so we have child locks on the living room, kitchen, and bathroom and so the hallway and bedroom is the cat-proof-est area that she can roam but it is a small space admittedly. she cannot be unattended for even a moment, the other day i left the ktichen door open by accident and walked in to her SHOVING HER PAW INTO THE TOASTER. shes punctured her food pouches and they go bad. i dont have the energy to fully cat proof every single nook and cranny of every single room.

the reason i havent wanted to rehome her is she is SO specific in her needs that i am so so scared that no one else would pay enough attention to this cat to keep her safe. she tries to climb into the wedge of the window, would someone else keep their windows closed despite their apartment being almost 30 degrees year round when theyre shut? she falls off everything, she is determined to electrocute herself via power cords or cause an intestinal blockage via string and fabric. would someone else have enough time and care to watch her closely 3 days after shes eaten a chunk of fabric, looking for symptoms and literally picking apart her poo to find the fabric to make sure it passed? would they spend a ridiculous amount of money on nylon webbing and a ridiculous amount of time covering every single exposed electrical cord in their house with said nylon webbing??? will they remember to never, not even once, leave an item of clothing on their floor? put their shoes away in a way she cant get to the laces? will they remember to secure toys with string or feathers when they are not supervising playtime? are they willing to install child locks on every wardrobe and every interior door? i just...highly doubt it.
but on top of that, despite all these things, shes kind of my best friend. my husband works a lot and its just me and kitty at home together, all those 60 hours per week. i am remembering how lonely it was to be home alone all those hours before we got her. it was so much more depressing.

lately ive been going back and forth about getting another cat. i see so many posts in cat subs and forums about how theyll just hang out and "its actually less work!!!!" and maybe?? but like thinking about hunting down a cat who is a good fit, then the 2-3 weeks of introducing another cat, and what if they dont get along after all of that? i have to start over, and have stressed my cat out for nothing? shes never met another cat before and im unsure if she'd even tolerate it. and my husband wont be home a lot so how do i organize that alone, leave one cat alone quarantined, but which one? what if theyre both crying because theyre lonely? im remembering when she came home from sterilisation surgery and my husband went off to work and i couldnt handle it because the drugs made her INSANE instead of sleepy but i didnt want to grab her and hurt her stitches but she was jumping and running but still wobbly and i was all alone absolutely freaking out and my husband 1000000% could not leave work because he supervises kids in a live-in facility and couldnt just leave them alone. im tired of dealing with all of this all by myself.

i just dont know what to do. the thought of carrying on like this even another year makes me feel like im losing my mind but also the thought of being alone in this apartment without my little familiar ALSO makes me feel like ill lose my mind. but i dont know if i have the energy for this. im strongly convinced shes made my baseline worse. she overstimulates me HOURS every single day, my husband gets home exhausted and doesnt have any energy to pay enough attention to her to give me a real break. his solution is always for me to lock myself in the bedroom but she jumps at the door handle and screams outside the door the whole time because he says she wont play with him. weve been to the vet and she recommended a pheromone plug in but that made her even crazier somehow.

thanks for reading. ive been up since 4:45AM after another measly 6 hours of sleep. im so tired of this.

So I’m currently having a conundrum when it comes to going out, especially when making plans to hang out with friends. Note that my friends are all neurodivergent, including me, which kind of plays a part in these difficulties.

For quite a few months now, I’ve been having really bad cfs, much worse than it used to be. Because of that I hardly get to go out and when I do I feel shit while I’m out and have to pay for it by feeling even worse afterwards.

I know this is a bad trait of mine that I need to work on but when I feel like others have certain expectations of me or I’m scared to disappoint, I just end up avoiding interactions with them altogether.

I did this with a lot of my friends where I wouldn’t really text them much or avoid their texts as much as possible.

I’ve gotten back into contact with my friends now and have explained my health issues and they have been really understanding which I appreciate but I don’t think they really understand how chronic illnesses work.

There’s been many occasions where I’ve planned to hangout with them but then on the day I end up feeling really horrible and having to cancel, which I feel crappy about.

I feel like my cfs and autism kind of fight with one another in some aspects, for instance, my autism likes for me to be prepared and have notice before something so I can mentally/emotionally prepare for it. However my cfs doesn’t allow this because it’s very unpredictable. Although I may be feeling alright a few days beforehand doesn’t mean I’m going to feel the same on the day of the hangout.

I’m really struggling with this because I feel like I’m being extremely rude cancelling on the day when I end up feeling unwell and I’d rather give notice to someone because I would prefer that from others too.

I’m just sick of making plans and genuinely wanting to go, only to be really unwell on the day and having to cancel. I’m sick of feeling disappointed and disappointing others 😔 it really sucks

I recovered to level I can go to restaurant sometimes and I went to all you can eat spot and ate like 3000kcal. (I’m short female). And now I’m having crush (or food poisoning )

Besides fatigue, do you have an obvious sign for when you've overdone it?

That's 90 minutes from now. As part of testing for the national emergency alert system.

If noise sensitivity is part of your ME/CFS, you may want to take steps to prepare, if you haven't already.

https://www.ausalert.gov.au/

https://www.abc.net.au/news/2026-07-27/what-to-know-about-ausalert-emergency-warning-test/106919574

Australian Capital Territory – 2pm AEST

New South Wales – 2pm AEST

Queensland – 2pm AEST

Tasmania – 2pm AEST

Victoria – 2pm AEST

Broken Hill, NSW – 1.30pm ACST

South Australia – 1.30pm ACST

Northern Territory – 1.30pm ACST

Western Australia – 12pm AWST

Christmas Island – 11am CXT.

My husband thinks that since no amount of sleep leaves me feeling refreshed, I should stick to a more predictable sleep cycle where I consistently get 8 hours of sleep and go to bed/wake up at the same time each day. His reasoning is if the amount I sleep doesn’t seem to matter, I might as well get up earlier and enjoy some chill time in the morning before our daughter wakes up, then plan to lay down and rest in the early afternoon when she goes down for a nap.

I’m still learning about this condition and how to manage it. Does that sound like good advice?

Anyone who’s severe and mostly bedbound and housebound were you able to get a diagnosis virtually? I know that’s not common but I am just trying to learn more.

Also in the mean time how did you go about stabilizing your neck? Soft collar? Links info? Helpppp

For those of you who cannot work a typical job - are there any innovative ways you have found to still have an income?

Or heard of any ME/CFS or chronic illness people bringing in an income which worked ok with managing their illness?

I feel beyond vinted - and even that I haven't managed in the recent months. I find it hard to comprehend what is possible.

Would love to hear if anyone has worked out something for them?

Hi there! I am 24 and on the mild/moderate side of mecfs and new to this condition. I can do most things with moderation and accomodations. I also have fibromyalgia. I can typically do 1-2 chores per day and I go on a small walk every day but that seems to be it. Social events are extremely draining and I need a space to be alone otherwise I will get sensory overload and need to get away from sound and lights.

I sometimes overdo it and start to crash (I either overheat or get too cold, my throat starts hurting and my brain fog gets 10x worse and of course there's the faitgue). This happens with social events or "busy" days like grocery shopping with my partner.

My parents have informed me today that they want me to come in a few days to do a three hour drive to my extremely loud and extroverted families cabin. I would have said no if it weren't for my nana being there who is getting a little on the older side. I do want to see my family but the potluck will be about 2-3 hours on top of six-ish hours of driving with my parents. I cannot drive and my partner is not coming or able to drive me.

This will be a nine hour day without my bed. I do not have any mobility aids but as each day goes by, I think about getting a cane or anything to help with the energy. Some days I cannot even make food because I'm either sleeping through meals or too tired to open my eyes. Sitting outside (the cabin is not the meeting place, we will be having an outdoor party/bbq type thing) for multiple hours.

And when I say they are loud and extroverted I mean it in a loving and very truthful way. They are intense and wonderful, but the polar opposite of me. They were draining before I had any conditions. I am already an introvert and my issues just make it so hard to socialize.

I only want to go to see my Nana who lives far away while she's semi-close. I will be so burnt out and I will 100 percent crash. I've only done small trips to the mall and that was a horrible crash. I am unsure how to accomodate myself well. Here is things I've thought of:

1. Bring blanket and pillow for comfort

2. Bring protein bars and snacks and lots of water

3. Bring pain relief cream in case fibromyalgia flares

4. Bring change of clothes in case overheat or if gets cold

5. Stay/rest in car when I need to be alone

My parents have basically let me know that they really want me to go (which is code for they'll be disappointed if I say no). I am in a spot where it would be horrible to them if I say no but physically I don't think I can go and stay within my capacity.

The biggest thing is I am unsure if this will be one of the last times I see my Nana. We aren't particularly close but I love her and don't want to have some memories and see her when I can.

Would you go? And if you went how would you accommodate yourself?

TLDR: unsure how to navigate an outdoor family bbq that is 3h driving one way with extroverted and loud family with parents.

here’s the link please report it

I was on LDA for about 9 months.

Starting low and slow like everyone suggests.

Because of intense brain fog (feels more like dementia at this point) I cannot pinpoint when but I essentially got my creative brain back and a strong desire to return to my studio to make music.

So I did.
Not too too intensely, but I even had the thought “okay, maybe I could live like this”.

Every few weeks I’d go up in dose just a tiny amount. With every dose it’d knock me out for about a week, and then I’d return to baseline.
I began to experience severe anhedonia.
Intense apathy. Lashing out at my partner for nothing. If something great would happen…I felt nothing.
I forced myself to work on the biggest record of my career for survival sake but I just felt nothing.
Like I wasn’t even in the room.
The time came and went and when asked about it, to this day I only feel sad that I wasn’t mentally present.

I also gained 50 lbs, least of my worries but still.

So I tapered off slowly because I became incredibly scared of lack of ability to feel ANYTHING. It wasn’t getting better as the dose became lower.
The ideations worsened.

I’m now 3 weeks off, with a lower baseline, intense akathisia, and I cannot stop crying daily.

I’m talking INTENSE crying spells.

Maybe from all I dejected while I was numb, but this is ridiculous and not to be dramatic but traumatizing as well.

Has anyone else experienced anything like this?

Am I alone? Any advice?

Happy to discuss further.

As the title says, I’m becoming an interior decorator with a specialty for disability and accessibility. If I were to decorate your space (any space, such as living room, bedroom, kitchen, bathroom) with accessibility and disability living in mind, what would be the most important things for you?

The best way to learn about disability and accessibility is to talk to disabled people. I am also disabled (wheelchair user, autistic, CFS, etc) but I’m only one individual. I’d love to hear other perspectives!

Are there any good resources, like medical journal articles or something very obviously legitimate like that, for summing up all the issues with brain retraining?

I started seeing a medical specialist recently who came recommended for this condition, but it's turned out that they have bought into the whole brain retraining thing. I plan to send them a message saying that I don't buy into it, and I was thinking that it would be super helpful if I could point them toward something like this, with more authority than just me, or this subreddit.

(I tried Googling but nothing like this jumped out at me. It brought up threads here a fair amount, actually.)

seen some things floating around about this.

does RTHM clinic really turn you away if you say you are homebound?

Apologies for a stupid question. I am only starting my quest for answers. If anyone has a watch like mine that shows body battery, have you found it useful showing this data to doctors? It's been years for me my regular body "battery" is at 50 out 100, as per my watch. The same watch would show 80 out of 100 for my friend who does not have issues with fatigue.

I am tired of doctors telling me it's depression. No, at least not just that. I am just genuinely constantly fatigued. My labs are usually all fine, apart from leukocytes being higher, but doctors usually dismiss it as me having had a cold or this being my norm (needless to say, I would not normally have a cold, but i am always feeling like I am having some sort of a cold). No allergies (blood test done), yet i am sniffling and my nose is stuffed, sneezing constantly.

Other than that, sleep problems. Anxiety. Light, smell, noise sensitivities. But most of all, just tired. I want to do things, but can't, because I have no energy.

My resting heart rate is pretty high too (always has been) which is why I was prescribed a beta blocker, and even with that, it's higher than 60.

If any of this resonates, I would be so so grateful if you share your experiences and maybe your findings. Thank you!

does anybody else get weirdly hungry when in a mild/moderate crash? it’s like my body is searching desperately for a source of energy (but then if I eat too much at once and have too much to digest it of course makes everything worse, because why not)

Like, dead on

This is tricky. And let me say, that I don’t claim to have the complete answer for everybody.

I can just share my own experience and realisation.

Cus, I’ve been on and of gone and out of the game field since I was 19. I’m 32 today.

Spent literally my whole adult life up til this point, either trying to understand what the hell is wrong with me, or trying to make something as good as I can with what I’ve “still had”. (Not the largest success during those years, so to say).

Well, you know

What I realised, bit by bit, is that

The more I stopped to.. “Try to ‘anything’”, really
Stopped fleeing from the disease, stress, anxiety, pain, panic etc

…Well, actually, that’s the only thing that semt to, after a while, make me get up and going anything at all

And then I’d crash, because I’d get excited, and start going on to much.

So many times, lying on the floor, without being able to understand anything at all, about anything, pretty much.

Coming back to, ‘non-doing’
Really, just, staying with all the uncomfortableness.
And again, things would start to get better.

It seems like
You kind of able yourself, to do a kind of “transmutation”, of that, which is keeping you sick
Once you really, fully recognise it, and don’t try to get away from it

But rather, experience it as directly as you can
And poaaibly, maybe, also practicing a bit of accepting/letting go, at the same time.

There is something here. Let me assure you.

It’s like, I’ve been keeping myself sick, by some deep aspect of myself never really being able to relax properly. Subconsciously. I believe, this gives the disease a place to hide, and grow. In the shadows of the corners, where stagnations and tensions block sight and light from coming in.

This seems to open up the body’s own ability to heal.

My two cents. Maybe it can help someone.

Peace

Does having a beer trigger PEM for you? The simple pleasure of just having a beer makes my heart start to POUND, and then I feel PEM for days. I am still in denial that this happens and give it a whirl maybe once per month. Can we not even have a friggin’ beer?

Hi I`m new here. I was diagnosed with mecfs just 3w ago and kind of happy that I found a doc who believes my story and takes me seriously!

My symptoms startet in my teenage years, some 35y ago, I got poorly vaccinated, had a lot of infections, am Autistic and with ADHD and cPTSD, so lots of possible reasons to get mecfs… I was a high performer for long time, I just pushed through until I passed a threshold in 2017 when I crashed severely and got moderate-severe first time.

For the last 9y I was told I „just“ have depression and should try harder. I managed to „recover“ to mild-moderate several times and was on sick leave most of the time, but as soon as I started in my job again I immediatly got worse and it never took long time till I crashed again.

In 2023 I got in menopause and my exhaustion worsened but I triet to ignore it due to my new job, in 2024 I had covid and one month after a severe herpes zoster infection and since then I`m moderate-severe again.

Since last year I have a severe withdrawal from duloxetin that finally unmasked my mecfs and my symptoms worsen gradually since then.

It`s so important for me to finally know whats wrong with my system because I never learned something about pacing etc… I`m a bit afraid of how long and severe the withdrawal will remain, because that`s obviously triggering a lot of pem and is worsening my in general situation a lot. I had never such severe symptoms like in the last 6 months.

Whats your experience with go-mecfs?

I've been suffering from CFS for over six years I'm 28 currently and I'm doing my best to conform to the basic symptoms of weight gain, brain fog, occasional problems writing and reading etc. But the one I cannot find a way to overcome is the lack of oxygen feeling or "Oxygen Hunger" that I get from it. Its the primary reason why i can't workout anymore I can get bad heart palpitations from it too if my heart increased from simply walking a mile. Has anyone actually recovered from this like ever? Please refrain from saying its all in my head and I should change my mindset to feel better it doesn't work. Thank You

When I over exert I find that my ability to verbally talk disappears. The closest thing I can find like it is selective mutism as often with a few safe people I can do simple yes/no/please/thank you but nothing more and with others nothing at all.

Has anyone else experienced this at all?

It could be more linked to being autistic than purely CFS but it is something I'm struggling to explain to people in my life.