u/kornukopioides

I'm 4 months into PVF recovery and thought I would evade this problem but I'm in 3rd trimester and pregnancy insomnia has hit me hard. I know it's gonna be really bad for months like last time...

Does anyone have any advice on how to deal with insomnia? I am still couchbound, full recovery seems far away, but many symptoms have improved. My worst symptoms are neurological and crushing fatigue. Has anyone still managed to recover despite getting very little, broken sleep each night? I've been doing all the sleep hygiene and supplement tricks for months and they stopped working, now not even sleeping medication seems to work.

I've been on my recovery from PVF for 4 months now. I had my second major crash a week ago, came out of it and for two entire days felt 80% recovered. Weak, deconditioned, not exerting myself much more physically, but it felt like my body and mind functioned completely normally. Then the fatigue and symptoms came back.

Is this a sign I'm getting close to recovery? I want those two days back, it felt such a relief after months of symptoms, like drinking cold water after wandering in a hot desert. I'm also 7 months pregnant and I just wanna recover to be able to give birth😭

My doctors are refusing to prescribe me oral drops so I could taper safely. I've been on 5mg for 3 months. The pills are very small and round. Can I crush the pills in water, suck them in a syringe and then start tapering by 3/4, 2/4, 1/4 etc every few weeks?

5mg may not sounds like a lot but the serotonin efficiancy in the brain is 66% at 5mg and 70% at 10mg, so the drop from 5mg to 0mg hits hardest from what I've read. Also I'm pregnant so I really wanna avoid side effects.

Our son is fully potty trained, goes to sleep without a diaper. He uses the potty. He will have 1-2 normal sized poops and then force small poops every time he pees. I don't think he's constipated, because he can for example eat blueberries at 2pm and by 6pm he has his big PM poop where the blueberries come out and then continue his routine of pooping a small fingernail sized turd every hour.

It's so frustrating to wipe his butt 10 times per day. He's not in pain and the poops are soft, not hard or liquid. Anyone else have a serial pooper?

I am recovering from severe post viral fatigue and my body is constantly tremoring and convulsing on its own. From 5-60 minutes at a time. It's so powerful that I can't stop it for long. I notice a release from the tremoring, but then I get filled with uncomfortable energy, I feel too wired. I understand my body releases trauma/energy during the tremors and then I feel that released energy in uncomfortable sensations/feelings. But where does this energy go? Do I need to cry it out? It lasts for hours and I want it to leave my head/body somehow.

It sucks that I am bed/couchbound, otherwise I would go for walks in the forest to get rid of this energy.

I've had long covid for 4 months, bed/couchbound the entire time. My worst symptoms are fatigue and PEM, which manifests in intense depression, anxiety and neurological symptoms. I'm also 6 months pregnant.

I think the reason the virus knocked me out so bad was because I was pregnant and for a year been suffering with intense emetophobia. I was very mentally ill, anxious, panic attacks etc.

I have a childhood background of neglect and emotional abuse. In general I've always been a very anxious, skittish and scared person. I'm also physically frail and weak.

I feel like part of recovering from LC is working thtough my fear. Not only fear of symptoms but this deep seated fear. Crying helps me release emotion a lot. Does anyone have any advice?

I've been dealing with severe post viral fatigue for 4 months. I don't have energy for anything except laying in bed and I get PEM. When it happens, I feel extreme anxiety, depression and anguish. My skin and spine burns. I cry a lot and my body twitches and shakes. The crying helps me feel better, but sometimes I cry the whole day.

Has anyone had experience with LC/PVF and nervous system dysregulation like this? I think my body is healthy but my CNS is keeping it in a shutdown mode. When I body scan the fatigue it feels very strongly connected to anxiety and the burning feeling in my spine/nervous system.

What are some ways I can heal this?

I have post viral fatigue with PEM which causes horrible anxiety, panic and depression during the episodes. I got a prescription for 15mg Oxazepam, I was on it 1-3x a day for a week, then over the course of next week reduced to 7,5mg every other day, every 2 days, until I took it once a week or two approximately. I always take half a pill so 7,5mg to help with symptoms, very rarely 15mg.

Recently I had another crash where I've been taking benzos every other day for a week now, 7,5mg and yesterday 15mg. Today I seem to experience really strong panic and anxiety out of nowhere and I can't tell if it's my usual PEM symptoms or kindling effect from benzos?

I never really got withdrawals from benzos, except 10 years ago when I quit clonazepam after 2 months of intermittent recreational use, but they were tolerable. Am I freaking out for no reason or is using a low dose of oxazepam as needed dangerous?

I'm 3,5 months into PVF, I was bedbound and recovered enough to become almost housebound. I'm not sure why but the past week I became more fatigued and now it's clear I'm in a crash. I have horrible anxiety, depression, crushing fatigue, body tremors, I'm back to bedbound. Last time this happened it took 2 months to recover my baseline.
The thing is that I'm 6 months pregnant and I don't have much time left til I give birth. I feel afraid for my future, the thought of not being able to be a mother to my children makes me want to give up.

I'm sorry for gloomposting, usually I share uplifting things on this sub but I'd really appreciate insight and encouragement from people who have recovered and gone through bad crashes. The only thing taking the edge off how horrible I feel is benzos, which I know aren't a long term solution. Nervous system work has helped me a lot but it's not always linear improvement.

I have PVF for 3,5 months. I was bedbound, worked my way to couch/housebound with nervous system work. Most of neurological and cognitive symptoms improved. POTS has been improving too. My worst symptoms left are fatigue, anxiety and depression.
I tried to walk stairs to be able to leave my house and fatigue worsened to the point of being bedbound again for a week now. Anxiety and depression also increased. I guess it's a dip?

I read some studies that say if you still have symptoms at 3 months recovery by 6 months is 40% probable. Does anyone have any optimistic statistics on recovery? My worst symptom is fatigue and I don't know how to heal it.

Oon nyt 3kk sairastanut long covidia tai jotain vastaavaa virusjälkeistä väsymysoireyhtymää. Aluksi oli monenlaisia raskaita neurologisia, fyysisiä ja kognitiivisia oireita, makasin viikkoja pimeässä huoneessa. Jotkut oireet on jo helpottanut mutta edelleen makaan suurimman osan päivästä sängyssä. En oo käynyt ulkona kertaakaan kesän aikana. Mun piti saada yksityiseltä erikoislääkäriltä diagnoosi koska julkinen terveydenhuolto ei osannut auttaa mitenkään ja on laittanut viisi eri psykiatrian ammattilaista tutkimaan minut, eli kaikki psykiatriset sairaudet on laajasti poissuljettu. Mutta eihän se estä sitä että koko julkinen terveydenhuolto ajattelee et oon mielisairas ja mun pitäis vaan liikkua. Kun kaikki maailman somatian testit ja tutkimukset on kunnossa.

Oon niin uupunut joka päivä, en jaksa istua enkä seisoa minuuttia pidempään. En ees pääse mihinkään lääkärikäynnille ellei ambulanssi vie mua. Ei ne ota mua osastolle kun olin siellä eikä löydetty mitään somaattista. Oon kokeillut useita lääkkeitä. Onko kukaan kokenut samanlaista uupumusta virusinfektion jälkeen? Miten toivuitte ja mistä saitte apua?

I was 3 months pregnant when I got a cold. I don't even know if it was covid but it knocked me out, I became bedbound. I had horrible symptoms, multiple hospitalizations. I've been on so many meds. I'm 6 months pregnant now and still spend most of my days in bed. I haven't left my house in 4 months, except with ambulance. I don't have energy for anything, not even standing up longer than 1min. My OB office thinks I'm mentally ill despite providing them with my LC/PVFS diagnosis and keeps calling CPS on me for not going to pregnancy checkups. Most of my neurological and cognitive symptoms have improved but I still have crushing fatigue, PEM, anxiety and depression.

I've been trying everything under the sun to try and get better but my progress is just agonizingly slow and I don't even know if it's truly getting better. I can't be a mother to my son. My husband quit his job to become our full caretaker. We live alone in this country and have 0 help. I feel so guilty for being absent from my sons life, I can't care for him at all and most days I barely have energy to interact with him. I love him so much and it breaks my heart. I don't know how I'll give birth or how I'll care for the newborn. I feel so bad. If this doesn't improve then I feel like I'll only be a burden on my husband, if I can't care for our children and he has to care for 3 people. This is the worst thing that has happened to me. I was completely healthy before this.

Me and husband can't agree on a name. I'm looking for names similar to these:

Gretel
Klara
Ingrid
Sigrun
Edda
Sylvia

When I gave birth to my son, I lost a lot of blood and couldn't hold him for 3 days. My husband became the main parent since the beginning, changing 90% of diapers, carrying him everywhere, rocking him to sleep 99% of the time. My son liked me as long as I breastfed, then he started prefering his dad.

I went through a lot of trauma, anxiety and panic during his 2nd year of life which caused me to barely be able to function so I couldn't really be as involved with him as his dad. On the 3rd year of his life I became pregnant and developed a serious illness which has left me completely unable to function. My husband is both of our caretaker currently.

I try to be nice to my son, I hug him every day, I talk with him and read him books but being basically bedbound I can't be involved in his life as much. When he's sad he doesn't let me comfort him. He has this understanding that mommy is "off limits" and doesn't really come to me. It's because when I try to spend time with him he gets rowdy, hyper and starts jumping on me, kicking me, screaming. He kicked me in my gut before and I had a miscarriage. I barely have strength to move so this age is hard. I guess what I'm wondering is, if you were absent from your child's life for the first years, were you still able to have a good relationship with them when they grew up?

I want nothing more than to be a good mother and for my son to love me and want to be part of my life when he's an adult. I hate how life circumstances have made that so hard.

Hey. Wanted to write a post on my recovery journey for people who are still early in it. I've been diagnosed with post viral fatigue/long covid and I feel like I'm making steady recovery after being very severe. I'm not recovered yet, but my symptoms are continuously improving. There's a lot of recovery stories online that take 1-5 years to recover but I think in reality most people recover from PVF/LC in 6-12 months according to statistics. Those people don't make many posts. Those who recover in under 6 months are even less likely to make recovery posts.

Mid-april 2026:
I'm 3 months pregnant and a SAHM while husband works 10 hour shifts. He brings home a cold which lasts 1 week. I seem to recover normally, then on the 7th day I collapse. Can't walk, husband has to support/carry me to bathroom. He quits work to become my caretaker.

May:
I'm in a constant push-crash cycle. Get hospitalized, do all the tests. Everything is normal except low ferritin (normal in pregnancy). Doctor and nurses encourage me to push myself to do activities. I get home and try to clean for 10min. Within days, I crash massively. I lose all my strength and my body enters a state of immense doom/panic. I have no idea what's going on, I stop being able to eat or walk to the bathroom. I'm bedbound and every waking second feels like immense suffering, like I have an intense fever and I'm in hell. Husband calls ambulance. They put me on IV in ER, but because nothing is wrong on the tests they send me to psych ward. I'm kept there for 5 days under surveillance where they push me to walk and get my own food. They have me on so many different medicines, including benzos. The benzos bring me out of the crash. They conclude I'm mentally sane and let me go home.

Beginning of June:
I'm home but I'm still bedbound. I lay with eyes closed for 16-20 hours of the day. I can't use my phone for longer than 1hr, can't do anything except go to the bathroom. Can't read, watch tv, can't talk for longer than 10min. Pretty bad sound and light intolerance. Orthostatic intolerance. It's hard to sleep. Can't sit up AT ALL. I shower once a week. But I can eat on my own again, while laying down. I'm on 6 different meds: Loratadin 10mg, Pepcid, Oxazepam 15mg, Escitalopram 5mg, Propranolol 10-40mg and Quetiapine 25mg. Slowly the doom/panic adrenaline dumping starts to get better. I get a diagnosis from a neurologist who tells me to pace. He suggests LDN. I discover the science of psychoneuroimmunology aka neuroplastic approach. All I can do every day is sleep, eat, look out the window, browse Reddit and listen to Raelan Agle's podcasts on minimum volume. One day while listening to an interview with a doctor, I have an "aha" moment and realize my body is physically healthy and my nervous system has just got stuck in flight-fight mode. Overnight, I'm able to tolerate light again. I open my curtains. I migrate from bedbound to couchbound. I decide to quit all my meds except escitalopram 5mg. Fortunately I don't really get withdrawals. I stop believing in having MCAS and decide to start eating the forbidden histamine foods again - nothing bad happens. I try to find as much JOY in every day as I can, to signal safety to my nervous system.

End of June:
I research more about mind-body work. Days are very up and down. Some days I feel hopeful. Other days I feel extreme depression and just cry. I shower every day while sitting down. I start practicing sitting up and reading books. At first the brain fog is bad and I can't read more than 2 pages. I read a recovery story of someone who healed brain fog by exercising the brain with cognitive activities. Because I know my body is healthy and I know there's no other reason than neuroplastic for me to get PEM from cognitive exertion, I train my brain by reading, sudokus and crosswords every day. In a week I go from reading 2 pages to 60 pages. Now I can read books again! I read Jo Marchant: Mind & Body and Dr. Schubiners Unlearn Your Pain. The information gained boosts my hope for recovery further. I try to do some meditation and breathing exercises but honestly I don't like doing them at all so I give up. I start thinking that my symptoms aren't because of structural damage to my body and they're just neuroplastic. I stop being afraid of them and they start going away. The most persistent still are burning skin, fatigue and anxiety.

July:
I can walk around a bit more. I can shower standing up now. I can get out of bed in 15mins instead of 1-2hrs. Sleep is much better. Depression seems to be cured by escitalopram. Still have many days of anxiety but I know I can recover, just don't know how long it'll take. I try to walk stairs up and down to gain energy and practice going outside. I do this for 2 weeks but it makes me more fatigued so I stop. I have unlimited congitive ability. I can read, do handcrafts, use my phone for 3-5hrs, watch movies, listen to music, do light yoga, play games on laptop, read books to my son and play with him a bit. All my symptoms have gone away except for fatigue and anxiety. I'm now couchbound on bad days and housebound on good days. I can do very very light cleaning but my husband still cooks, cleans and does all the childcare. I don't get PEM anymore, I get days of worse symptoms but I consider them normal neuroplastic flares, not connected to anything I did. The flares have also went from 1 week to a few days at most.

List of things I tried:

25mg quetiapine - helped with sleep for 3 weeks

Oxazepam - calms anxiety and most of my
symptoms so good - only use it on bad days now

Diazepam - not really good during pregnancy but works quickly for panic attacks

5mg escitalopram - helped my depression and mood a lot

10-40mg propranolol - helped with orthostatic intolerance & fast HR until I learned to not mind these symptoms and they went away

Rosita Cod liver oil - good for D vitamin

Magnesium - i think it helps with anxiety & sleep?

Iron & lactoferrin - i need this for low ferritin and it helps me feel less like a corpse

LDN - made me worse, couldn't take it more than 3 days

Co10 - no effect

Creatine - boost of energy at first, then no effect

H1 & H2 antihistamines - nothing except placebo effect

Sunlight - very good for mood and sometimes for energy

Red light therapy - it feels nice and soothing. I bought a $5 red lightbulb for my bedside lamp

Massages - the best thing for immediate relaxation

Breathing exercises - helped at my worst but it's just not my thing

Meditation - i suck at it, but helpful

Finding joy in every day and laughing as much as possible - 10/10 for nervous system healing

Eating a clean diet - believe it or not but it makes no difference in neuroplastic symptoms

Browsing r/cfs - made me so much worse. Quitting that subreddit was the best thing in my recovery

Forgetting about symptoms as much as possible and trying to enjoy my days - hard but very very helpful in recovery

Sometimes some symptoms have come back for a few days or new ones appeared. This symptom fluctuation is really common in recovery. I've learned the most important thing in recovery is responding well to symptoms. I haven't really seen improvement week to week, more like month to month. I know it may sound like I'm healed because my only symptoms left are fatigue and anxiety, but I can't still do physical activity or go outside. If I push myself physically the fatigue will tell me to lay down and I risk PEM/overactivating my nervous system to a bad flare. I'm hoping I can recover enough to go outside by the time I give birth.

If anyone is also in the early days of PVF/LC recovery and wants to chat or ask me questions, feel free to message me!

My boy was a horrible, difficult baby. At 2 years he became pretty nice. Very easy to persuade, fully potty trained, can explain his needs, an extremely gentle and loving child.

At 2.5 years, so 2 months ago he changed. He stopped talking and started whining. EVERYTHING is said as a whine. "More milk?" Is "mooReeeE mIIiIiIilkKK!!!" Etc. He screams and cries so much over things like having to wash his hands, having to shower, having to close cartoons, having to clean. Bedtime is a hit or miss, sometimes my husband has to tackle him to put him in pyjamas and he bites him! We always try to turn his tantrums into a game by tickling him which leads to him laughing but he just whines and screams all the time. Every time my husband comes back with him from a walk, he says he's never taking him outside again.

I know it's a phase but I find myself having to go back to using ear protection which gives me PTSD from the baby years. Any others in the same boat?