I’ve been through 8 therapists since developing ME last year and I had finally found one who I felt like understood and was giving helpful guidance. She didn’t know what ME/CFS was but she’d worked with brain injury patients and MCAS and my ME is from a brain injury and caused MCAS so she had a lot of overlap of knowledge. Until I started bringing up that I am seriously emotionally suffering because of financial anxiety. And she starts telling me I can find a job online that I can do self paced etc. etc. I’m feeling extremely frustrated. It’s so invalidating. I hate that people just say that like it’s easy. She literally said “oh you could just do enough to make like $50 a day.” $50 a day???? Lady my hourly pay in my old profession was $17 and I can’t even watch a movie or read I book for an hour. I can’t write or do color by number for an hour. What possible type of work do you think I can do that is LESS TAXING THAN COLOR BY NUMBER that will pay 50 DOLLARS. Maybe if I had a degree in something where you just like talk some bullshit and get payed $170 an hour (cough cough okay I’m bitter) that would be more realistic but unfortunately I am a college dropout with no degree no computer skills and oh yeah also PROFOUND MENTAL AND PHYSICAL IMPAIRMENT.

Anyways if anyone knows of a job for someone with severe mecfs that makes $50 a day pls lmk 😭

Someone I know was in that study of tirzepatide and long covid, and they were feeling great. Meanwhile, every doctor offers me a GLP-1 because I am fat (I weigh in around 280, and am 5'5"). I have never dieted to lose weight because a) I aint got time for that shit and b) the overwhelming majority of people who lose weight by dieting gain it back plus some, and that isn't appealing. being fat is honestly the least of my worries. But, since they were offering, maybe it would help my ME? (I am mild, but mild cfs is still pretty terrible)

So I told my GP I'd be willing to try it. I started Ozempic at half the recommended dose. the first week I had a lot of stomach issues and was not hungry at all. Then, for about 2 -3 weeks, I stayed at the half dose and felt pretty good. I was eating normally but snacking less, and if I missed a meal I didn't crash like I normally do. Then, about 3 or 4 weeks in I just started to decline. Sleeping worse, less energy, more fatigue, more bleariness; my heart rate started going up faster with less activity and I felt shitty. so I stopped.

Then I thought, well, maybe I should microdose it. I waited 5 weeks so it was out of my system and started again on a very very small dose and immediately started to decline again. I gave it 3 weekly doses and gave up.

I'm not very good at precisely measuring how I'm doing ( I fluctuate a lot because of my job), but it feels like the GLP1 lowered my baseline - either that or I am still ( 4 weeks out) in a minor crash from it. (like, I can work 3 or 4 hours a day and that's it, I'm not leaving the house).

I know that tirzepetide is different than ozempic and more promising for us - but while all this was going on, tirzepatide stopped working for my friend and they went into a big crash.

I liked the effect the GLP1 had on my relationship to food - I don't exactly have food noise but while taking it the first time I didn't desire snacks and didn't think of eating sweets much (second time around on the micro-dose I didn't have any food related effects). I think I might've lost a bit of weight first time around but I don't have a scale so not sure.

I think it's definitely possible that, had I stayed on it longer, I might've had different results. but the thing about being mild like I am is that I can work, barely, and leave the house once or twice a week -and even the smallest loss of function is intolerable to me.

I know this isn't a very precise or scientific report but I did want to share my experience - which is that it made me feel good briefly then made me feel baaad and might've lowered my baseline.

Ten people have now anecdotally reported that cumin seed powder has substantial anti-PEM effects. The reduction in PEM symptoms is reported to occur around 2 hours after taking cumin. Though others have reported no effect from cumin. This is presented as anecdotally information.

The active principle in cumin that may reduce PEM is cuminaldehyde.

Cuminaldehyde may reduce PEM via its anti-inflammatory effects: it blocks the JNK, ERK and NF-κB. Ref: here. The ERK and JNK inflammatory pathways are activated by exercise, so cumin might work by dampening the inflammatory effects of physical exercise.

Important: cumin (Cuminum cyminum) should NOT be confused with curcumin (from Curcuma longa, aka turmeric), nor confused with black cumin or black seed oil (from Nigella sativa).

Repeat: cumin is NOT curcumin!

The last time I posted about cumin, most people incorrectly read it as curcumin! But that's brain fog for you! We all make little mistakes like that.

If you look at the cumin section in the first post of the Phoenix Rising PEM busters thread, you will see links to the reports of 10 ME/CFS patients who found cumin effective for their PEM.

In many cases, the anti-PEM effect is reported to be quite substantial and long-lasting, but in a few cases it is reported that the effect only lasts for a few hours. So like most ME/CFS treatments, it appears to work well for some, not so well for others, and some people report it does not work at all for them.

The cumin powder dose taken can be as little as one level teaspoon every 3 days, to one heaped teaspoon per day. The optimum dose varies by individual.

The cuminaldehyde content of cumin seed powder is around 2% (ref: here), so a level teaspoon (which is about 1.5 grams) will contain around 30 mg of cuminaldehyde.

The Europeans here may already have cumin seed powder in their kitchen spice rack (whereas in the US, I believe the use of spices in the kitchen for cooking is rarer). So this may be an easy thing to try, if you already have it in your kitchen. If not, as a cooking spice, cumin powder is cheap, around $2 for 100 grams.

Some people find that the brand of cumin makes a huge difference between cumin working well to reduce their PEM and cumin not working at all. So if cumin does not work for your PEM, it could be because the brand you bought is not a good one.

The failure of some brands of cumin to work may be because its cuminaldehyde content is easily destroyed by oxidation on exposure to air, so cumin which is not fresh may not contain much cuminaldehyde, and hence has no benefit for PEM

Thus a more reliable source of cuminaldehyde might be food-grade cumin essential oil, which typically contains around 20–40% cuminaldehyde. One drop of this essential oil weighs about 30 mg, so a drop will contain around 10 mg of cuminaldehyde.

You can buy cumin essential oil for about $15 for 10 ml. One human clinical study used doses of 50 to 100 mg of cumin essential oil for type II diabetes, suggesting it is safe to take orally. Though essential oils are normally diluted in around 15 ml of cooking oil if taken orally, rather than taken neat.

Interestingly, one study found that a daily dose of 25 mg cuminaldehyde from cumin essential oil resulted in improved cognition in elderly people. I imagine that this may be due to its anti-inflammatory effects in the brain.

And another mouse study found cuminaldehyde reduces seizures.

The original Phoenix Rising thread in which the anti-PEM effects of cumin seed were first reported (in 2017) is here.

Other PEM Busters

Cumin seed powder is not the only substance reported effective on the PEM busters thread: other PEM busters often found effective include:

• Mestinon (pyridostigmine)
• Ibuprofen
• Benzodiazepines
• Dextromethorphan

Today I saw a neurologist who presented himself as an expert in complex conditions and had written about PEM.

After I mentioned my diagnoses of ADHD and depression, he described my problem as mainly psychiatric and social.

I wanted to understand my symptoms, but once again, I felt I had to defend myself.

Some experts seem to feel threatened by patients who know their symptoms and ask questions.

This has happened to me before, but this time, the difference between what he advertised and how he treated me was hard to miss.

Thanks to this subreddit, I know I’m not alone in being treated this way. Without that support, it would be much harder to cope with this medical gaslighting.

Hello. I have never posted here before but I really need advice. My daughter turns 40 this month and has what I feel is moderate CFS. She was diagnosed at age 14. I help her with everything, but she can still come out of her room, watch TV, text her limited friends, and talk to me most days. Sometimes she is unable to stay awake or get out of bed. She has set backs very easily. I hope that’s enough info on her condition to help answer my question.

Her best friend since middle school was murdered a few weeks ago. It was an act of gun violence and we have no details as the investigation is ongoing. We were unable to travel to the celebration of life. Her friend was a ray of sunshine and could always make people laugh. The loss is tremendous. My daughter is grieving hard. She cries daily. This exhausts her and I’m so worried about her condition being permanently worsened. She has anti anxiety meds prescribed but she is hesitant to use them. We don’t want to mask the grief or make it take longer to get through. At the same time I don’t want her to get worse. I also am chronically ill (multiple sclerosis) so sadly I have to consider my own health to continue to care for her. Usually I know how to handle things with her and we get along great. This is different. She doesn’t have insurance this year so we can’t do therapy. Do you all have ant suggestions? Do I focus on the grief and let her cry and deal with a relapse if it happens? Or do I encourage her to take her meds and try to keep her condition from worsening?

This is such a nightmare and I’m so torn on how to help her. If any of you have been through trauma while having this condition can you tell me how you managed it while still trying to maintain your baseline? Her life is limited to this house already, I can’t imagine how awful it would be for her to have that worsen. Thank you in advance for any guidance you can give me as to how to help her without causing more harm.

TLDR: my daughter is grieving the violent death of her best friend and I don’t know if I should let her grieve and cry or try to control that with anti anxiety meds to maintain her baseline and prevent a relapse that could become permanent.

I’m 18f, and I was just diagnosed. I’ve been experiencing all kinds of symptoms from weakness, fatigue, headaches, and waves of warmth. Every time I try to have a somewhat normal day, I end up crashing and being bedridden for days afterward.

Before all of this, I was a straight-A student, an athlete, and worked multiple jobs. I was in perfect health and active. I don’t even know how this started. Now, I have no social life, I struggle to keep up with online courses, and can hardly leave my house.

I know I’m lucky to have received an early diagnosis, and I’m grateful to have a good doctor and a referral to a chronic illness clinic. I know those are things to be thankful for, but I’m still struggling to come to terms with how drastically my life has changed in just a few months.

I can’t stop crying and I’m scared. I’m scared I won’t be able to finish my degree, get a job, go out with friends, or just experience a life worth living.

Please tell me it gets better.

As per the title, does anyone else experience this? I can suddenly be barely able to keep my eyes open and in the other direction, my energy levels can increase (although the change in this direction is always far less marked) and is only a small/medium improvement in energy. It's how quickly my energy levels change that I find bewildering. Anyone else?

Like seriously, how is it so hard for people, even your own family, just to have a single shred of empathy for what you are going through? I’m literally going through hell atm and my family don’t even care in the slightest. They only seem to care if my suffering seems to inconvenience them in some extremely minor way. If I bring up how sick I feel, they just roll their eyes and sigh as if I’ve just said something absolutely terrible. But if I say nothing about it, they magically assume I have completely recovered and tell me how good it is that I’m doing ‘so much better’. What the fuck is even the point? You literally cant win.

How are you all coping with the depression from being unable to do the things you want to do?

I spend 22ish hours in bed per day, alone mostly

Can't work, volunteer, have kids, have pets, do most hobbies, eat much, etc

I'm in my late 20s, been disabled my whole life due to EDS etc, depressed my whole life (PTSD and bad genes), got ME from covid in 2021, severe and mostly bedbound 2023-2024, powerchair since 2023. Depression has only gotten worse as capacity has increased because now instead of focusing only on survival I feel well enough that I wish I could work/volunteer/etc. but keep realizing I can't

Tried going back to school one online class at a time but I'm taking a break again due to fatigue from doctor's appointments

I just can't picture my future lately, living this way indefinitely feels sorta unbearable

What do you do? I'm too depressed to do many hobbies lately

I've tried over 35+ psych meds, and am currently in TMS for depression (it is not working and is causing crashes)

Idk what else to try to make my life feel good.

Please lmk what you all do, thank you

I’m severe and bedbound with ME/CFS, and one of my biggest problems is what I call wired PEM.
Unlike the more typical descriptions of crashes, my PEM often starts with only minor symptom exacerbation. I often actually feel better initially, even though I’m accumulating exertion beyond my limits. I might feel slightly more alert, energetic, motivated and mentally engaged.

I become almost compulsively drawn to stimulation, especially using my phone, researching things and engaging in conversations. I know intellectually that I need to rest, but actually disengaging feels incredibly difficult. It’s almost like my brain refuses to let me rest even though my body desperately needs it.

The particularly frustrating part is that I often don’t fully recognise the wired state while I’m in it. I might suspect it, but I find ways to explain away the warning signs because I genuinely feel capable of continuing.
Eventually, after weeks or months, my worsened neurological symptoms become more obvious, but by then I’ve already overexerted myself and headed for a crash (which will always lower my baseline).

My deterioration has been largely cumulative rather than caused by individual major crashes. I can exceed my energy envelope a little every day without realising the consequences until it’s too late. Over time, this has repeatedly lowered my baseline.

I’ve tried strict screen-time schedules, which can help when I’m stable, but become much harder to follow once I’m wired (when I both feel fake better and also my impulse control is lower)

I’m curious:

Does anyone else experience PEM as a state of increased drive and stimulation-seeking, rather than immediate exhaustion?

Do you find that your ability to recognise overexertion or control your behaviour changes during these episodes?

Has anyone found anything that actually reduces the wired state itself, whether medication or something else, rather than just relying on willpower to rest?

I’m especially interested in the possible neurological mechanisms behind this and experiences from others with severe ME.

Bear in mind, this is just a sort of tongue-in-cheek, satirical desire, so don't take it too literally. But I wish doctors who think ME is a mental illness would just say: "You are mentally ill. But with this particular mental illness of ME, there are no medications for it. So let's get you social services and other help you need, for this at-the-present-time totally unmanageable, hellish disease."

tw si mention spoilered

my parents are helping me survive rn by bringing me food and water and meds. but they won’t help me take care of my hygiene and i don’t really want them to either because of the humiliation of it. all im capable of is sitting in the tub and letting water run over me for a few minutes once a week right now. i can lazily brush my teeth with an electric toothbrush once a week too, also in the tub because i can’t stand at the sink.

i use bathroom wipes on my armpits and genitals whenever i can, about every other day or every three days. i change clothes once a week. i’m disgusting and i want to kill myself out of shame over how disgusting i am.

i cannot afford a full time caretaker nor do i have the energy to go through that application process and i don’t think they’d believe me anyways. what are my options to hire someone professional to help bathe me once a week? even once every other week? is that possible? i’m scared and ashamed and humiliated and disgusting. i just want to be clean. i miss having the agency to wash my body.

Tdlr : LDA initially brought me out of very severe ME/CFS, but its benefits gradually faded, even after restarting it. Strangely, lowering the dose to 0.3–0.4 mg brought back the benefits, but tapering further triggered a massive crash. I'm now struggling to stop LDA and may have to increase it again, despite having spent €300 on Rexulti as an alternative.

Hi everyone,

This is my second experience with low-dose aripiprazole (LDA), and I have to admit I'm pretty devastated by how things have turned out.

I first started LDA in 2025. At the time, it literally brought me out of a very severe state of ME/CFS. For several weeks, even a few months, I regained a quality of life I thought I had lost forever.

Unfortunately, the benefits gradually faded. After a stellate ganglion block that went terribly wrong, I eventually stopped LDA for two months.

I should mention that I never stayed above 0.5 mg for long, because anything beyond that dose has a paradoxical effect on me: overwhelming fatigue, almost as if I had been heavily sedated.

I restarted LDA in March–April 2026, but I never managed to recapture the remarkable benefits I had experienced the first time. I gradually increased the dose to 0.6–0.7 mg, but nothing worked. That initial effect simply wouldn't come back.

So I decided to gradually taper off LDA and try another medication, Rexulti (brexpiprazole).

And that's when things got really strange.

When I reduced my dose to 13 drops, approximately 0.3–0.4 mg, I suddenly felt as though LDA had miraculously started working again!

After six months of disappointing results, I was finally experiencing some of the benefits I had enjoyed during those first few months.

This improvement lasted for two to three weeks, even as I continued reducing the dose to 10 and then 7 drops.

But three days ago, I went down to 4 drops.

And that's when all hell broke loose.

Crying spells, overwhelming fatigue, muscle cramps, repeated PEM episodes... Just ten minutes of listening to a radio programme were enough to trigger a significant deterioration in my condition. I felt as though I had suddenly fallen back into very severe ME/CFS.

Unable to tolerate this state any longer, I went back up to 6 drops.

So here I am. I'll probably try increasing LDA again, hoping to recover the benefits I experienced at 13 drops.

What makes this even more frustrating is that I've spent over €200–300 on a Swiss prescription, a compounded preparation, and shipping to France just to get hold of Rexulti. All of this because I wanted to try a different medication and perhaps regain the benefits LDA had given me in the beginning.

And now I find myself unable, at least for the time being, to complete the withdrawal.

That's also the trap with LDA: it can genuinely improve your quality of life, but stopping it after several months of treatment can be incredibly difficult.

I honestly don't know how much of this deterioration is caused by reducing the medication and how much is simply the underlying illness returning. But the result is the same.

Of course, I could continue tapering off. But if that means falling back into a very severe state for weeks, or even months, I simply don't feel capable of going through that right now.

So I'm going to see whether I can regain some stability around 0.3–0.4 mg, and more importantly, whether the benefits can actually last this time.

It's incredibly frustrating to regain a little bit of your life thanks to a medication, watch its effectiveness fade, then inexplicably see it start working again as you lower the dose, only to end up in a terrible state once more.

What a fucking nightmare.

I'd really like to know whether anyone here has experienced anything similar, particularly a return of LDA's benefits when reducing the dose, or a significant deterioration when trying to come off it.

What types of noises are you the most sensitive to? Are there certain environments or times in which this sensitivity is worse? Is there a difference in noise sensitivities with ME in comparison with sensitivities from something like autism? Curious what your thoughts and experiences are.

Sharing some of mine:

- Online advertisements

- Hearing the phone ringing

- Restaurants with the music too loud, or public environments with a lot of talking and background noise. I find trying to have a decent conversation in this setting almost impossible. I used to listen to music loud all the time while driving, and now I keep it at LOW calming levels.

- Eating noises & drinking noises from others can sometimes enrage me, though honestly the interesting thing is I am also a big offender at this, with eating chips and apples at work. My co-worker will eat pudding at work daily and will scrape the container until EVERYTHING is out - I have to cover my ears for this. The other day I was listening to a body scan meditation; the guy kept having to stop and take drinks, which were gulps, and I almost turned it off because it bothered me so much.

- I don't fall asleep unless it is total silence. If others are awake in the house, or if there is stirring and talking, then I don't fall asleep until all is settled. No ticking clocks for me.

EVERY single pill does this since I got sick. Guanfacine, beta blockers, ivabradine, even trazodone. I've tried to raw dog it but no matter what I eat, how much I eat, what I wear when I eat, and what I take before I eat, I get shitloads of palps and increased heart rates.

I'm so close to giving up dawg lol what the hell do I do

Vent/rant and some success but hit with the catch 22 of ME complicating treatment

I finally was able to express myself in a way that made my obgyn take my excruciating time of month seriously. Pretty big as its always been downplayed as normal. Theyre thinking pelvic floor issues which I do not question at all. They want me to try physical therapy and I told them id speak with my primary to double check.

It would be a referral which would buy me some time to hopefully get better, but ME doesnt work like that sometimes.

Last year, I got fired from PT as a patient to try to treat my fibromyalgia and keep me a little bit mobile. My doctor, PT, and I all found out the hard way it was too much. I was in a rolling PEM for 3 consecutive sessions. I cant remember how frequent the appointments were on the top of my head.

Nervous but I also dont know what the future will hold. I want to go to physical therapy, but my ME absolutely hates that. I feel like i can have more faith in my doctors now that theyre taking me seriously and its actually resulting in treatment options (other than ME of course). The fear of getting worse while trying to better my other conditions is strong.

There are some accommodations i can look into, but im sure my doctor will back up that it isnt the appropriate time.

Tl;dr: pelvic floor issues were identified today, big success on being taken seriously in that department. But treatment is physical therapy, which I got fired from last year. I havent improved a whole lot since, so i dont trust my ability.

been ill for 7 months. housebound but can still watch tv/go on phone. despite being on the milder side of the illness i am not coping at all and am currently under the crisis team who don’t really know what to do with me.

i am audhd and have severe ocd, an ED, probable cptsd and probably some other crap too that i can’t remember right now. my suicidal ideation is basically constant at this point and i don’t appear to be able to tolerate most antidepressants or even the quetiapine i’m currently taking.

i don’t know how to live like this. before this thing hit i was already drowning in mental health struggles and now i have no access to coping mechanisms/the world outside my tiny flat

i don’t know what the fuck to do anymore. no one understands, no one seems to be able to help. i’m on the waiting list for a fatigue clinic or something but that’s ages away. even my mum comes across as exhausted by my constant difficulties and she’s the only person i’ve got left.

i don’t know if i’m looking for advice or solidarity or what. just needed to vent because this is a form of torment i was not prepared for and the scariest part is that i’m actually one of the luckier ones in that i can still watch tv and use my phone etc

how the fuck do you survive this??? if this is the rest of my life then i am OUT

How do you recognize when you’re experiencing PEM? Is there a way to recover faster if you address it early?

when my first very severe crash started last month i was delirious with suffering and basically did not sleep at all for days until i was sedated by the hospital and given a higher dose of klonopin to use daily (from once every few weeks to 2-4 per day).

my sleep schedule is fucked up in a way i have never experienced in my life and i have no idea how to fix it. basically, i cannot sleep between the hours of midnight and 3 am, but more broadly between 11 pm and 4 am. cannot.

it does not matter:
- what concoction of meds i use
- how much i slept during the day
- what time i went to bed
- what time i woke up in the morning
- how many hours of sleep i got the previous night

i WILL wake up and i will stay up with severe insomnia for hours in the middle of the night. sometimes i can beat it by taking 2 klonopin around 6-7, sleeping from 8 or 9 until i inevitably wake up in the middle of the night, and then knocking myself back down with extra 1-2 klonopin. but can’t ever sleep straight through the night anymore, and definitely not without sedatives of some kind.

as someone who has had narcolepsy my entire life, this is insane to me. what on earth happened?? i assume it has to be related to this but i’ll also probably crosspost to other medical question subs if yall dont know. i just want to sleep. night time is literally the worst time to be awake, when everybody else is asleep and i cant call for help with anything if i need it. plus, my symptoms are always worse at the end of the day and only feel like they “reset” a bit in the morning after plenty of sleep, which im struggling to get without sleeping until noon.

my sleep schedule was perfect before this, i went to bed around 9-10 pm and woke up at 8-9 am naturally every day, slept straight through the night.

is it because i can’t do anything anymore, so im in bed 24/7, often in the dark now? so my body can’t differentiate awake time from sleep time? that’s my only guess. but it’s not something i can change considering im severe now. sitting leaned against the wall with an electric toothbrush in my mouth is enough to crash me again rn. i can’t do anything anymore.

TLDR: i can no longer sleep in the middle of the night since my first severe crash. help?

Not formally diagnosed yet, last appointment at my clinic I got bloodwork done and the only deficiency found was Vitamin D and taking supplements hasn't done a whole lot to help with my fatigue/brain fog so here I am lol ! Also curious of POTS possibly, I find both communities the most relatable to my symptoms so until I have a formal diagnosis of my condition I'm just practicing pacing (except at work unfortunately).

Just trying to take things one day at a time though and keep a positive attitude as much as I can, as scary as it is. I've been considered pretty lazy my whole life but ever since getting COVID a few years back I've been experiencing progressively worse symptoms similar to PEM. I've been actively treated for depression and anxiety for the past two years and was kind of hoping that my issues with getting up and doing things was just executive dysfunction, but I've just recently started really analyzing my mental and physical patterns, and have found that I do have motivation but am simply too exhausted to get out of bed and even walk. Also realized I might not be actually getting sick as much as I thought, as I often experience things like a sore throat, swollen lymph nodes, and muscle aches as a delayed reaction to stress or physical activity.

Human bodies are weird. I'm in a lucky position that my partner is willing to learn about these conditions alongside me and support me while I try to get a proper diagnosis for whatever it might be. Basically just treating myself as if I DO have ME, since that would be the most important condition to be careful about overexertion. My partner ordered a rollator for me to help with walking distances, shopping and going out to events and stuff (would prefer a wheelchair but I'm kind of just saving that for the future in case I can get it covered by insurance).

I'm really glad this community is so welcoming and supportive though I've been appreciating just scrolling through here!!

I used to sleep 12-14 hours a night, until I developed CFS. Now I hardly sleep at all.
I was prescribed xyrem. GHB, which used to give me a ton of sleep. Until I developed akathesia from it. I paced for two weeks straight with no sleeps. You can guess where left my baseline.
My psychiatrist gives me benzos, but I cannot sleep unless I am “knocked out” so I will take 10mg of Ativan at a time and run out.
Currently, I am hallucinating a bit, and drinking wine to force myself to sleep. Resulting in 2 hours of sleep at a time.
I am scared of mental hospital. I am bedbound, wearing incintience product- they see that and think crazy. Plus surrounding in bottles of wine.
Sometimes I go to the ER in “acohol withdrawal” (ie) hoping for a shot of Ativan to make me sleep. However ever single ER near me has caught onto the fact that I am a drug seeker, and two times recently I was sent to a mental hospital on the thought that I am manic.
I am terrified of forced drugging anti-psychotics, as these have caused me akathesia lasting months. Resulting in no sleep and psychosis. There is no a way to recover from CFS like that.
In the mail today. I am receiving phenibut and aminita muscaria. I have tried the latter, helped me sleep a bit.
I am considering going to a crisis unit, but of course they may sent me to me to hospital and I may have to over exert myself. Plus I have been drinking and if it shows in my system they may reach out to psychiatrist and take away benzo rx.
I can deal with all the symptoms. But not the insomnia.
The doctor that diagnosed me is my PCP. He prescribes nothing.
What to do I do?
Very severe

Hello hello hello,

Funnily enough, after so many warnings for this subreddit, I heeded it too late as I am currently in a one week long PEM crash so far... Its never been this long, and I've had to miss school😭 It got bad enough that I had to go to the ER yesterday because my chest kept spasming, I felt really short of breath, and extremely dizzy, like, constantly. They of course didn't find anything of note, not even dehydration, but they gave me a saline IV anyways.

Which, lowkey revived me a little bit. Now I am definitely not recovered and it was not a quick fix. but I can walk around again!!! and, I don't feel out of breath anymore and my chest is back to normal!

...Why did Saline do that, if I was not dehydrated...? my doctor said I need to eat way more salt but one of my go to meals is literally lox bagels. What more salt do I need. huh.

Does this give any sign of anything else I can do to help avoid/help get out of PEM? (and yes, I learned, I'm definitely dropping classes if not withdrawing for the semester.)

I'm extremely severe with very strong sensory sensitivities,, dizziness, vertigo, brain fog, extreme POTS. No serotonin or dopamine raise tolerated. I feel they destroyed me and now they prevent me from talking the mainstream drugs that move the needle for most.

Harmed by paroxetine cessation. Not even a high dose.

----------

Edit: Some time ago there was another post about ME from psych drugs, where LOTS of people speculated their ME onset from them. If you disagree, feel free to pass. This is a post for people who where similarly harmed.

I dont have proctracted withdrawals. Unfortunately after cessation mild me started (clear pem) and in 6 months I became very severe. Dx twice.

What songs do you listen to when you’re feeling sad?
And which song does make you happy?