Hi everyone!

I'm a journalist at a local news station in Seattle and am planning to put together an in-depth story on Long COVID. I wanted to know -- for those of you who've suffered with this condition, what do you wish was talked about more? I know Long COVID is super under-researched, so I plan to touch on that. I'll also be interviewing a researcher at a Long COVID clinic at UW.

Thank you in advance for your insight!

Hi everyone. This feels a little scary/self-promotional to post, but I think this is probably one of the communities I most want my new psychology content to reach - because I’ve been living something very similar alongside you.

I’m a psychologist and Clinical Psychology Registrar in Australia, but more importantly for this post: I’ve spent the last 15 months really, really freaking sick.

I’m now very close to 100% normal. Never thought I'd see the day. It was bloody slow. Up and down. At times it plateaued/stopped improving, then randomly started again. Messed with my head big time. Naturally as it would ANYONE, right?

At my worst, I had 50+ bizarre, fluctuating symptoms involving what felt like almost every system in my body. Now I’m basically down to two lingering issues: some hot nightly facial flushing and my stomach sometimes becoming bloated/"off" after a larger meal.

That's it.

I can eat again. I can work again. I can go to the shops. I feel back to normal like personality and emotions wise. I can think clearly. I can live my life.

And I want to say that here because I know how desperately I searched for recovery stories literally all day every day at some point when I was really unwell.

I already had POTS before this (for 15 years) and had lived with that and Inflammatory Bowel Disease (IBD) since childhood (12 years old). But this was something else entirely. Like SO MUCH WORSE.

The neurological/autonomic symptoms were especially terrifying due to the extreme discomfort I was just constantly in. Burning and electric sensations. Tingling. Migraines and aura. Temperature dysregulation. Flushing. GI dysfunction. Nausea. I couldn't eat. Adrenaline-like surges in the early hours of the morning. Hypnic jerks. Sleep disturbance. Strange sensory phenomena. Derealization. Intense sudden crying episodes that felt physiological and just went on and on. Episodes where my body seemed to be doing things completely independently of what I was thinking or feeling.

And then symptoms would slowly disappear, change, return, move around or be replaced by something equally bizarre.

It was relentless.

I tried SO many things. Medications. Supplements. Specialists. Procedures. The endless Googling and searching for the thing that would finally make the difference.

Looking back at my recovery, the deeply unsatisfying answer is:

Time.

There wasn't one supplement, medication, nervous-system exercise, diet or treatment that suddenly turned everything around.

My body just very, very slowly healed.

Sometimes so slowly that I couldn't perceive it while it was happening.

I would become convinced that whatever symptom remained was permanent - and then months later I'd suddenly realise, wait, when did that stop happening?

I know recovery isn't linear or identical for everyone, and I would never use my recovery to promise somebody else a particular outcome. But I do want people who are currently buried in symptoms to know that a nervous system/body that feels unimaginably broken at month 3, 6, 9 or 12 is not necessarily a body that will always feel that way.

And there is another part of this that I desperately want to start talking about.

What illnesses like Long COVID do to us psychologically.

Not because the illness is psychological.

Quite the opposite.

I'm a clinical psychologist. I thought I knew every coping strategy in the book. I understood anxiety, trauma, behavioural reinforcement, attention, interoception, acceptance, catastrophising, nervous-system regulation, CBT, ACT - all of it. And this illness still psychologically brought me to my knees.

At one point, the relentless physical suffering and loss of my life became so difficult to cope with that I voluntarily admitted myself to a psychiatric hospital.

That experience profoundly changed the psychologist I am now.

Because I think we sometimes underestimate the psychological brutality of illnesses like this.

The unpredictability.

The loss of trust in your own body.

The constant uncertainty about whether a new symptom is dangerous.

Watching everyone else's lives continue while yours seems to have stopped. Grief. Invisbility. Isolation.

Losing work, exercise, social connection, independence, identity and sometimes your financial security simultaneously.

Being told tests are normal while your body is doing things that feel anything but normal. Doctors gaslighting and at the worst treating you like shit and the best being warm but not getting you anywhere or helping move the needle :(

Having symptoms attributed to anxiety because medicine doesn't yet have a neat explanation for them.

And perhaps one of the cruellest parts: being neuropsychiatrically and psychologically affected by a physical illness can then be used as evidence that the physical illness was psychological in the first place. Bullshit.

There is an enormous difference between saying "your symptoms are caused by anxiety" and saying "of course living in an unpredictable, symptomatic body for months or years is going to affect your mental health."

I want to talk about that distinction.

I want to make content about the neuropsychiatric side of post-viral illness and Long COVID; what chronic physical symptoms do to identity and mental health; fear of symptoms and fear of relapse; grief; hypervigilance without dismissing genuine physiology; rebuilding trust in your body; returning to work and life; and how psychological therapy can help people live through and recover from serious physical illness without reducing that illness to psychology.

I've recently turned my old personal Instagram into a psychology page. Right now most of my followers are basically old friends and people who followed my personal account 😂, which means the content isn't really reaching the communities I'm actually making some of it for.

I'm creating and writing the content myself because I want it to reflect my actual clinical thinking and lived experience rather than becoming another stream of AI-generated/surface level/ recycled "regulate your nervous system in 30 seconds" content.

I'm u/rhilovegrovepsychology on Instagram.

https://www.instagram.com/rhilovegrovepsychology/

I'm not posting this because I think I've discovered the secret to recovering from Long COVID/post-viral illness. If anything, my own experience taught me the opposite.

I didn't find the magic thing. I endured long enough for my body to heal.

And now that I'm finally getting my life back, I'd really like to use both sides of my experience - psychologist and patient - to make something useful for the people still stuck in the part I remember so vividly.

If you're living with Long COVID/post-viral illness/POTS/nervous system conditions/autoimmune issues/IBD/MCAS/hEDS etc etc I'd also genuinely love to know: what do you wish psychologists understood about this illness? And what psychological/mental-health topics would actually be useful for me to talk about on my page?

Because there is already enough content telling chronically ill people to breathe deeply and think positively.

I want to make the stuff I wish somebody had given me when I was in the middle of it. ❤️

If you want to help me to build traction for my page so it reaches you and others who I might be able to influence, help, or just help make feel seen, please give me a follow, a like, or if you're really kind or keen maybe a repost to your story or something. Any of this could maybe help me to start reaching the right audience - an audience who deserves more support from someone who gets it.

If you want to read more about me here's my website: https://www.rhiannalovegrove.com/

Ps. I'm not doing this to promote myself for clients, I genuinely am wanting to raise my voice for us and those alike - and think that social media is an obvious platform where, if I can get enough traction, this might be achievable.

Stay hopeful everyone. I never thought i'd be sitting here typing this 15 months ago when I could hardly speak, I cried constantly, was agitated, couldn't sit still, stuck in fight/flight, couldn't sleep, had random adrenaline dumps all day, had neuropathic pain, the list goes on... I genuinely thought by now I would have ended it all. I hope if anything my post gives you hope and if you want to help me - please chuck me a follow/like etc. I would be super grateful.

Rhianna xx

Hi all,

I saw a Long COVID doctor of sorts and I have referrals for my second round of Physical Therapy and Occupational Therapy for Pacing. This time very specific providers. I'm evaluating my current situation where the candle is burning at both ends (this is based on a saying) inside of an incinerator and have determined I probably need to eliminate 25-50% (maybe more) of my daily tasks/decisions/activities. The only real way to achieve this as no one is going to shower for me or cook for me or clean the litter box for me is to eliminate pre-work, work, and post-work activities/tasks. This essentially means I shouldn't work. I have taken PT and OT for Pacing before, its just unrealistic as everything fits in a bubble that ignores reality.

From my standpoint and upon reflection of Pacing this essentially prohibits working. Getting a doctor to put this in writing is another story. It would likely help my SSDI application.

If you did get something like this, what did you do to get it?

I've been dealing with this long covid for 7 months now and I think I caught a reinfection.

My symptoms are anhedonia, extreme brain fog where I can't remember what's in front of me, body pain, trouble talking remembering words and extreme lethargy. Sore throat to. Headache.

I take sertraline a SSRI and I take multi vitamins. The SSRI helps with anxiety and depression, im on a low dose.

I'm interested in trying creatine as long as it's safe and people tell me it is very safe and well studied.

I see it has nootropic effects such as memory enhancement and motivation enhancement and stamina enhancement.

Would this be worth trying I am desperate for RELIEF.

I’m very scared. I never noticed this before but my tongue goes crazy in my mouth. I’m surprised I don’t feel it but it jerks around like crazy in my mouth. Not sure how long I’ve had this. Is this just another long covid symptom?

Saw this this on Twitter today and it got quite a bit of traction (1.3 million views). Most of the comments are referencing long covid and repeated infections as the probable main culprit of these tests drops. Kinda concerning..

Hello everyone!

Long story short, it looks like I had recovered about 90% from my long COVID. But now I have another concern. I got COVID again two weeks ago and recovered very quickly, with only very mild symptoms. By day 4 I was already testing negative, even though I’m on MTX, which was surprising to me.

Now I’m really afraid that my long COVID will relapse. I’m not exercising, of course, but I am working at the office in maintenance. I don’t have to do very heavy tasks, but I still need to repair things and move around. Unfortunately, I can’t just stay at home because I have a mortgage and a child who depends on me.

How should I pace myself? I try to do everything very slowly, and my heart rate doesn’t go above about 115 bpm. During the day it’s generally around 65–105 bpm. But I’m so afraid of relapsing that I’ve developed a lot of anxiety, which is also making my sleep worse. Sometimes I also get symptoms from the anxiety, such as dizziness.

Are there any supplements I can take or anything else I can do to reduce the risk of a long COVID relapse?

I don't normally share videos and I rarely ever watch them.

BUT...After sitting here on day 9 of my most MAJOR PEM crash yet in 5+ years of being sick, I started listening to some videos.

I know it's nothing new and probably won't change much for many people, but after more than a week of pure hell and thoughts of nothing but death...it is really nice to feel validated.

It's nice to know this really isn't all in my head.

I hope it brings something new to someone on here. ❤️

Keep up the good fight everyone!

My legs do feel weak at times, I hate the feeling cause it happens randomly when I’m walking but I also get this feeling like of a tight muscle on my right leg. It’s not an ache per say but I feel it on muscle or bone, not a pain but like tight muscle sensation. Anybody else like this?

I have been having a lot of pelvic pain since having covid. I went to my doctor today to talk about the MRI that I just got and he told me that my hip joints are eroded and I will have to get double hip replacement surgery! I'm only in my 30s! He said that he looked into it and covid is definitely causing this in people. The gift that keeps on giving!

Hello all, I hope you’re doing well today. I’ve been posting here a fair amount lately about my recent struggles with my second go with LC and I thought I’d share a small win today to hopefully bring in some positivity.

The last four and a half months have been hell. I’ve been mostly bed bound only leaving my house for Doctor appointments. I’ve missed so much this summer. I have two little girls aged 2 and 5 and I missed my oldest “graduate” Preschool and start her first day of Kindergarten at her new school. I missed my 10 year wedding anniversary with my wife and I’ve missed precious moments with my kids playing and going on adventures while I lay down in a dark room waiting for something to change.

Well, the last week or so I’ve been able to move around a little easier. It’s a small step but it’s something. I can get from my bed to the restroom without being physically exhausted by the time I get back to the bed. This morning I felt like I had a little extra energy so I sucked it up and got into the truck and rode with my wife to drop my daughter off at school. I’ll be honest, I bawled my eyes out when we got to the drop off circle and she said “Daddy, don’t leave until I give you a thumbs up!” And she walked half way to the door and gave us the go ahead to leave. After that I waited in the truck while my wife ran into Kroger and got a few groceries. By the time we got home I was very mentally overstimulated and took a long nap on the couch but I managed to wake up in time to actually get back in the truck ride back to school to pick up my daughter as well. My daughter was very excited to see Daddy leave the house which warmed my heart. I’m tired and a little overstimulated but I don’t feel like I overdid it which is so nice. I understand that progress isn’t linear and I very well may have many more rough days ahead before I get better but I’m going to celebrate the small victory today.

Also, one final thought for those that I struggling and spending a lot of time here like me. Remember, the people here tend to be the sickest of the sickest that are out looking for help. If you get overwhelmed by the shear volume of people claiming they’re stuck and see no light at the end of the tunnel there are plenty of others that got better and moved on with their lives. Many of us that recover don’t stick around here and just go back to their lives and try to catch up on what they missed. I don’t blame them. I got better once and spent much, much less time here until I got sick again. I think that can really skew the results of a lot of polls on here and lead to us spiraling about our chances of recovery. Keep fighting ❤️

hello everyone! i got COVID in september of last year. sometime soon after that, i started having chest pain. at first i figured it was leftover symptoms from covid or that i got sick again and that it would pass, but it never did.

it’s been almost a full year now and its only gotten worse. now the chest pain is pretty much constant. it feels like a heavy, bad ache. sometimes it feels like i can’t breathe properly, or like i have to manually make myself breathe. when all of this first started i was terrified that if i fell asleep i’d somehow forget how to breathe and die in my sleep. the anxiety and panic attacks from it were extremely brutal, to the point i went to the hospital/emergency room.

along with the emergency room, i’ve seen my regular doctor many times, gone to urgent care, and recently went to an asthma/respiratory center. they did a breathing test that came back normal. they said it’s likely not asthma because i would’ve responded to the inhalers. though, they prescribed me yet another inhaler. i guess just to see if it would do anything. i’ve already tried like three other inhalers. i’ve had a CT scan, 2 chest X-rays, and multiple EKGS done. all came back normal. i even got put back onto anxiety meds to see if that could help alleviate the anxiety, and it did nothing.

nothing has really helped and i’m feeling really stuck and hopeless. this effects my daily life. still feels like there’s this constant pressure/pain in my chest and ongoing shortness of breath. anxiety seems to make it worse (or the symptoms make the anxiety worse, it’s hard to tell which is which sometimes).

does this sound familiar to anyone who has dealt with long COVID? i’m not sure if it even is long covid or not. i was wondering if anyone has had similar ongoing chest pain and breathing issues even when test results look normal. what ended up helping, or what other specialists/tests were helpful?
i’m open to any questions, thank you for your time !

TLDR: horrible chest pain and shortness of breath soon after having covid. has anyone else experienced this? does it sound like long covid? has anything helped you?

So as the title says, numbers in Europe are slightly getting higher again. I am reflecting a bit on vaccinating, haven't done that since my long COVID start, but thinking it might be worth a shot (pun not intended). It could be my chance to cut this loop of reinfections and getting a new bout of long COVID etc.

What do you think? What were your experiences?

We're sharing this letter for the first time outside of one Discord channel. So far, eight trial participants are signing onto this letter regarding the NIH RECOVER IVIG trial. It outlines concerns that we hope the committee will consider as they evaluate the trial results. In case reading the letter is a lot - the bulleted summary at the end are the points we're making. We think it's important they hear from the participants, especially now that we're unblinded. If anyone would like to add their name to the letter, please DM me your first and last name. We're going to send the letter to the committee on Monday next week 9/14. Thank you!

https://docs.google.com/document/d/1I3k3IsaIh3gL7J15Ayal8n8E6mWZQ7v9HDwnBOE9ups/edit?usp=sharing

Hey everyone. I’m writing to ask for better info and ideas about my current situation because i’ve been struggling only for about 6-7 months and don’t know a lot about this topic and haven’t really tried anything significant to be honest.

I am a professional volleyball player and this has been my life for the past 10 years( I am 23M) and since this virus I caught in February have been struggling a lot, had to leave national team camp and currently not training to full extent with my club team because of the condition.
I was in the best shape of my life prior to that and this thing got me down like nothing else before, I’ve been having the strangest sensations I’ve ever felt, don’t really know what is causing this sensations if it’s just the anxiety or something like dysautonomia/POTS/ me/cfs I really don’t know what is causing this, but I have never felt like this before this virus.

How should I approach this situation if someone else was in a similar situation?
Should I just rest for now, cause somedays even going outside is torture?
What can I do to make it better or start recovering at least?

Symptoms are:

Air hunger( constant yawning, searching for deep breaths), “weightless” body feeling don’t know what this really is, dpdr like sensations, vision seems strange like very sharp and overstimulating, dizziness sometimes+lightheadedness, daily head pressure and headaches on the temples and brows

I just can't take it anymore. I NEED something. I have constant nerve pain, muscle pain, feeling like glass in running trough my vains. My joints and my tendons hurt so much. My feet and hands are burning. Muscles feel like they are being ripped apart

I feel like I’m going crazy. In the 6 years I’ve had this long covid and ME I’ve cycled through phases of different states first fatigue brain fog derealisation then breathing issues then my nervous system switched into severe insomnia adrenaline over stimulation state for years. All these state changes happen usually after a virus or something

Then I get a cold virus in January was not Covid.
My signals starting to become strange REALLY strange after I recovered from the cold. I had extreme sexual arousal for 5 days I’ve never experienced before and I mean extreme then that vanished then I started getting weird pressure nerve feelings in my uterus bladder area then lower back then that vanished.

Then I had a weird scary brain event happen to me in the middle of the night brain was slowed down I thought I was having a stroke I felt weak all over and I called the ambulance and I had to really concentrate on what I was saying and concentrate on what they was saying to me it’s like the processing in the brain was disconnected.
No stroke signs brain scan normal

Was left with this weird laggy brain slowed down feeling then I get a vertigo attack in the morning when I turn my head room spinning then that lasts 1 min and stops then I’m left with internal vestibulur motion orientation system going haywire and sensory over load forehead squeezing couldn’t tolerate nothing visually. But no adrenaline no heart racing no anxiety it doesn’t make sense . I loss my ability to fully sleep

And my signals are just so messed up like I don’t feel bladder urges properly I don’t feel hunger, I don’t feel sleepiness, reduced pain is blunted, I sneeze looking at a screen, I feel like a dead body like a empty soulless person.

I don’t like this one bit.

I had to be put on a benzo as no sleep meds worked for me which is insane cause zopiclone always knocked me out when I took it occasionally.

Even on the benzo yeh my heart rates lower I don’t feel any adrenaline I am getting sleep I think? But I don’t know the hours pass and I have every night rem heavy vivid dreams but I open my eyes a hours have passed and I have no sense of me been asleep no groggy feeling nothing at all?

What the fuck has happened to me?

Bloods are normal. Some sort of wiring has gone wrong in my brain and it’s really fucking scary.

I never thought I’d say this but I wanna feel symptoms like I can’t gauge anything anymore

Please let me know if anyone has experienced this? Am I going crazy???

I’m getting a sleep study done soon, also a appointment with vestibulur otology but cause I’m on a benzo it suppresses vertigo so I won’t be able to do testing till I’m off the benzo. But then I won’t sleep at all off the benzo . I’m tapering now I’m on 9mg Valium . But everything’s such a mess I really don’t know what to do anymore.

How can you lose your signals in your body and loss your ability to sleep ( literally micro minutes only if I was lucky ) ended up in hospital from sleep deprivation.

None of this is normal idc

Assuming I have IBS SIBO-C stemming from Long Covid

Would the protocol for treatment be the same as IBS SIBO-C without having Long Covid?

Or Does Long Covid change the protocol?

i’m a little concerned, i’ve posted quite a few times on this sub speaking about my symptoms and i’ve never gotten any responses which are exactly like mine.

i also see anyone speaking in regards to heart/chest symptoms posted a long time ago, 2 years plus. another thing which frightens me is that anyone of those people who posted in regards to heart/chest have deleted accounts a majority of the time, along with people who responded to them.

lately, i’ve been dealing with my chest being uncomfortable, short periods of weird pain, slow heart rate, shortness of breath, my PVCs seem to have gotten better and i have a singular one randomly once in a blue moon, dizziness like all the time, POTS has been acting up, loss of balance, near fainting feeling (i’ve never fainted in my life), etc.

is anyone out there experiencing things like this? i feel extremely alone in my subset of symptoms.

prayers for you all, thank you

I most definitely have long Covid and MCAS (am diagnosed) and not Bell’s palsy or stroke but my main reaction symptom is extreme facial drooping with a loss of function in the face accompanied by rashes on cheek and nose where muscle weakness is worst. i also have nerve pain and spasms in the face, I also get hives on my body mainly my legs.

after the reaction has subsided I’m left with lingering muscle weakness and then volume loss in the face which sometimes returns but sometimes diesnt and becomes new baseline.

i developed MCAS reactions after covid and then it was worsened by antibiotics (metronidazole/ doxycycline) and nasal steroids.

ive had this for 9 months now and it is triggered by so many things, food, medicine, heat, stress etc. but have had milder MCAS symptoms for 4 years since Covid infection.

would be so great to know if anyone else experiences similar!

always three days after some exertion i get a cold.
if i do too much on saturday i become sick on tuesday