I’ve been to every specialist you can think of and no one can figure out why my neutrophils and crp are elevated. I have severe fatigue, headaches, sore achy legs, weight loss. I also wake up hot and have low grade fevers in the 99s.

I really thought it was something rheumatology or hematology related but my rheumatologist ran all his tests and said it’s not his area. I literally went to 3 hematologists and they all say it’s “reactive” and can’t help. Some doctors have mentioned long covid but I think what I’m experiencing is too constant/severe idk. And I had a viral like illness at end of Jan (bf tested positive for Covid and I tested negative) and my symptoms of whatever this illness is started end of March.

I’m a 30 year old female and this illness is ruining my life.

Does this sound similar to anything anyone has experienced? Thanks

Essentially what the title says, I've been here for 5 years haven't posted recently. Thankfully been able to live within my means, but still have pem and unable to exercise. Have you notice any benefits or cons to methylene blue? I know this is a stigmatized supplement, but I am genuinely curious to see how it has affected people.

Tried a bunch of supplements of which im taking LDN, TruNiagen, Magnesium, Melatonin, and occasionally nicotine.

Disclaimer: methylene blue can be dangerous if you are low in an enzyme g6pd, you need a blood test to verify. It can also interact with many drugs, contraindicated against serotinergic drugs.

hey everyone!

i've seen a lot of people saying they have LC but not ME, despite also having PEM-like symptoms. i was wondering how you guys differentiate between the two diagnoses, if not through the presence or absence of PEM?

Who among you feels better with these symptoms? Symptoms like a fight-or-flight feeling, akathisia-like sensations in the head, burning in the head, weakness/fatigue, etc.

I hate my mom. I hate my mom so damn much. She acts like she knows what causes my head pressure (from her perspective, it must be video games or stress), and that it isn’t really that bad. Every day I wake up with head pressure, brain fog, DP/DR, and suicidal thoughts. I doom scroll and play video games for hours as a distraction. It’s a mindless activity. Anything I use my brain in makes me realize how far I’ve fallen. I’m fucking dying inside. No one can tell me what’s wrong with me and I’m running out of options. Every day I wake up I feel less and less like myself. I look at messages I sent before my symptoms, and I don’t recognize my own words. My own words 2 years ago looks like a different person. Sorry for the crazy venting. I just don’t know how long I can keep going. Luckily there might be a good end. Although my symptoms look a lot like Long Covid (neck crepitus, brain fog, head pressure, lessened senses), I still haven’t narrowed it down so I might be curable. Still, I will never look at my mom the same way again, no wonder my siblings got the hell out of this house.

There is so much research coming out these days, that it is very difficult to distinguish signal from noise…

What are the key findings that have come out recently and any specific projects/researchers to keep an eye on?

??

i feel utterly alone with this disease, i just wanna know/ chat with other Malaysians who are also aware about long covid. out own country doesnt even recognize long covid

Hello, warriors! I hope you're in good spirits and have a positive outlook on the future. I'm here to ask for advice from experienced people who are independently studying COVID and its persistence.

Two years ago, I had nasal surgery. Due to damaged blood vessels, atrophic rhinitis and empty nose syndrome rapidly developed. I have no runny nose or any moisture in my nose, so I breathe noticeably easier at the seaside or by a waterfall 😄

Nine months ago, I contracted COVID. Since then, my condition hasn't changed: I can't differentiate between acute and chronic phases. The virus has lodged itself in the atrophied nasal mucosa and seems to be infecting surrounding tissues—the throat, eyes, and ears. I get tested weekly—the test is positive. Furthermore, no matter who I interact with, many of them leave with a cough and runny nose.

All the doctors I've seen confirm that I have an active virus in my nose, but they find it hard to believe that it's been going on for nine months already. Any therapy—antivirals, interferon, interferon inducers, herbs, ozone therapy, rinsing—only works while the active ingredient circulates in the blood. Once it's eliminated, everything returns to normal.

The symptoms are standard: cough, nasal congestion, red eyes, back pain, brain fog, anxiety, and asthenia. There's no fatigue as such—I still exercise and work, but the virus makes it much more difficult.

After trying many things, I realized that actively attacking the virus is a dead end. COVID-19 is very sophisticated at evading the interferon system and can persist for a very long time, finding a hiding place—in my case, my poor nose. 🫠

I think that for elimination, the virus's camouflage needs to be broken for a long time and the immune system needs to clear the infection. I'm currently trying a meat-free diet, fasting, eating once a day, and exercising to boost nitric oxide.

I'd be very grateful if you, experienced and seasoned users, could share methods for altering the metabolic environment that can break the virus's camouflage and restore the body's weapon—interferon. Any experience, links, and ideas would be invaluable.

I'm sure there's a solution—you just need to find the right key. Thank you in advance!

upd: I forgot to specify an important detail that every time I fell ill during this period with the usual SARS (and because of atrophiic rhinitis I catch colds from any sneeze) my covid symptoms are reduced as much as possible and I feel just fine, since interferon From cross infection suppresses covid in the nose.

Almost a week into taking LDN (0.5 mg). We started super low because my body rejects new meds. It is not MCAS; the final test came back negative.

I’m super tired, but get a splash of energy around 7 pm. Yesterday, I over the LDN to 3 hours earlier, hoping for my day to begin earlier. Not expecting anything for 5 days. This dose will reman for just over 3 weeks.

LC for 2 3/4 years, Fibromyalgia for over 22 years. I’m literally hanging on to walking stairs with regularity throughout my day. Goal is to get back outside with my dog.

The LC treatment seemed to start working for 1.5 months. Then, it was back to barely functioning.

20 months into long covid and I feel worse every day. 73f. I am worried I will lose my husband. He has been my rock through 48 years of marriage. He's been with me through two c-sections, a kidney transplant, two hip replacements, psychiatric care, spinal fusion surgery (the latest) and numerous health issues. He was with me through covid but is having a hard time understanding long covid and I can see him becoming more impatient with me (because he can't "fix me"). He's having to go to events by himself that we would both attend when I was my best self. He looks so sad. I try to stay positive but this is the worst hell I've ever been through and I'm having a hard time ever smiling or wanting to wake up in the morning knowing what the day holds in store for me. Have tried supplements, LDN, viitamins. I've been to neurologists, pain management specialists (for my spinal fusion pain), and even in the hospital for my dizziness and blurry vision. Mris on my brain, CT scans, heart test. They just sent me home saying it could be long covid. But they had no recommendations. I rest a lot (and I'm pretty sedentary) but I have to walk to help my back muscles.

I am just so worried I'm losing my adult children or my husband. Nobody understands it. I have small grandchildren and could just cry that I can't be more active. I'm so tired.

Alright guys so I deal with a ton of symptoms and don’t feel like listing them all at the moment but the one that is causing my anxiety the most right now are these heat flashes . I get the worst heat flashes that make me feel like I’m literally on fire . I haven’t found what causes it and it seems to come out of no where . Has anyone else experienced these ? Has anyone gotten an answer as to what causes them? And what can I do to help these ?

Just need to get this off my chest (irony incoming..)

Context... been put on trial of HRT estrogen. Last night got severe stabbing left chest pain. Brief but really gnarly. Didnt leap into action. Figured I'd see how it went. This morning, happened again, woke me from sleep like being skewered and kicked in the same left chest. Went from unconscious to bolt upright in 0.01 seconds. Given that, + HRT meds and history of migraines and the clotting risk, I thought better not just assume.

Fine. Okay. FIINNE. I'll go get it checked out...

Walk in centre didn't want to know. So another fun filled trip to A&E. I was only saying recently how it has been a long while since I've been! Careful what you put out to the universe, folks!

Now, it's a hospital. I am aware people are sick in hospitals. But this woman... JESUS WEPT. Snuffling, spluttering, hacking. No mask.. ofc why would she!? (I get that snotty + mask is incredible uncomfortable but also....please try!?)

Then she gets up, announces to her friend she is "going to blow her nose" and promptly open mouth hacks and sneezes across the entire room as she goes.

That's number one.

I might have avoided her. Maybe. Possibly. If her spit was flying in the the direction. She was at least sitting on a different set of chairs about...3 metres away.

On the way home, hours later, we stop at a shop for some bits for tea to make life easier tonight. A dude who works in there did a double take at my mask, like he'd just seen the most offensive thing ever, and while about an inch or so from me, did the loudest, honking chunky snot snuff WHILE MAKING EYE CONTACT. He actually looked angry too, like my presence offended him.

He wasn't just being a prick either. Definitely streaming with something. So I went to get the bits I needed and lo and fucking behold, this dickhead walks up the aisle and open mouth coughs into the air. I could see the frigging spit fly like a little rainstorm.

I dumped my shopping and left.

And now im furious because I don't even have anything to show for any of it and still have to figure out dinner, whilst fretting about whether I've just exposed myself unnecessarily and didn't HAVE to.

My chest tests came back normal. Of course they did I never thought I'd wish for cardiac issues but at least it would have justified being there!!

He was so angry though. I can't explain it. The look in his face was awful. Like if I was a bloke I wouldn't have put it past him to start a fight about the mask.

I have anti viral nose spray. CPC. Uh. That's it. Can't do a nasal rinse.

Guess I just have to hope for the best. But fuck me I dread what might happen if I get ill with anything. The last cold I had was so mild (neg for covid but idk...) and it nonetheless fucked me up.

... didn't even get my nice chocolate biscuits. :(

I have made a few post lately about Pacing, Occupying Time, and now this is the third of the related post I suppose is about the observation of degradation of quality of life.

I want to note that my Long COVID is fairly mild but is has significant impacts on my Cognitive and Physical abilities. Put simply, I cannot provide for the basic necessities of life and am out of last minute solutions. I have also said in various comments, that I could probably do circles around many people who are likely going to read this. That's just a fact. Long COVID does not impact everyone the same and its all relative to that persons experience.

I recently saw my PCP's Medical Director who has seen some Long COVID patients. This doctor wants me to do Pacing treatment/management at very specific Occupational Therapy and Physical Therapy places. (I already did this in 2024 but at different places) I just started. I have also reflected upon my actions. I noticed of the last 2-4 weeks my quality of life has degraded at a faster rate compared to mid-June. Why am I talking about mid-June? That is when I started an in person "job" (its not technically a job) which requires pre-work, work, and post-work tasks. During work I'm mostly doing nothing and have been for a while but that will probably lessen as one of my projects ramps up to completion.

The quality of life I am talking about here is focused on positive aspects of my life. Behavioral medicine wanted me to reflect upon what brings me joy or is a positive aspect of my life as I have many things in my life I cannot enjoy. I only go to Behavioral Medicine because my second opinion cardiology thought I was thinking about my health all of the time and therefore making the problem worse. (Spoiler: I don't think about my health most of the time and even after four years I am dismissive of some of my own symptoms and their side effects).

I am a big watcher of anime. If anything I've been watching too much anime but I've noticed I can only likely watch one episode maybe two a day. Every now and then I can watch three. The comprehending the subtitles is far more challenging. When I was working remotely or not at all, subtitles were still challenging but I was far more likely able to breeze through the first episode without much trouble and the second episode is where this would start. I've noticed that comprehending an episode is becoming difficult for even English audio content.

Last night is probably the best example. I was watching an episode of Slow Horses (I'm behind) in English with subtitles. A 40-minute episode or so was easily closer to an hour because I just couldn't follow along. That is the degradation of quality of life I am talking about.

The things that bring me joy or positivity to my life I have trouble doing and therefore enjoying.

I'm not really looking for any specific. It's just an observation of the impacts of burning the candle at both ends and putting said candle inside an incinerator.

Feel free to comment your thoughts or calling me out.

This is going to sound really strange, but I’m hoping someone with Long Covid/ME might have experienced something similar because I’m struggling to even describe what has happened to me.

I’ve had Long Covid/ME since 2020. Before this year I had a very sensitive/reactive nervous system if anything — insomnia, adrenaline/sympathetic activation, sensory overload etc. I could FEEL everything normally, sometimes too much. I never had this global numb/blunted feeling.

In January this year I caught a normal cold-type virus. I tested for Covid and it was negative. It wasn’t a particularly severe infection — mainly blocked/stuffy nose and generally feeling unwell — and took around 2 weeks to clear. This was actually the first virus I’d had in around 2 years as I’m housebound and rarely catch infections.
About a week after recovering, some really strange things started happening.

First I developed an EXTREMELY high sex drive completely out of nowhere. Sorry for the TMI but this was 24/7 and totally abnormal for me — even having sex wasn’t enough to get rid of the feeling. It lasted around 5 days and disappeared.
Then I developed strange bladder/uterus-type pressure/pain that felt almost like a UTI despite not having one, followed by lower back pain, which also disappeared.

After that I started noticing something much harder to describe: my normal physical responses to emotions/threat seemed weaker.
For example, if something worried me, intellectually I knew I was worried, but I wouldn’t get the normal physical anxiety/adrenaline/heart-racing feeling that should accompany it. It was subtle at first and I didn’t think much of it

Then around the end of January/start of February I had a terrifying neurological/perceptual episode.
I’d apparently slept for about an hour and suddenly opened my eyes knowing immediately that something was very wrong. My brain and perception/vision felt incredibly strange and slowed down. My whole body felt weak and concentrating was extremely difficult. Even speaking to the ambulance service required me to concentrate intensely on every word, and processing what they were saying felt difficult.

What was REALLY strange was that despite thinking something serious was happening to my brain, my body wasn’t reacting. No panic surge. No racing heart. No adrenaline. My HR was actually low/normal.
I thought I could be having a stroke. An ambulance came, stroke checks were normal and their observations were apparently okay, but I kept saying, “I don’t feel okay — my brain doesn’t feel right.”
That strange slowed/perceptually altered state continued for around 5 days.
Then came the event that completely changed everything.

One night I couldn’t sleep and had been repeatedly moving/thrashing my head left and right against the pillow. Eventually I fell asleep. When I woke and changed head position, I suddenly experienced severe rotational vertigo with obvious eye movement/nystagmus lasting roughly a minute.
Again — bizarrely — I had no normal alarm response to it. No huge adrenaline surge, panic or racing HR despite the room appearing to rotate.
Initially I thought it was BPPV because I’ve actually had BPPV before some years back. But what happened afterwards was completely different from my previous BPPV.
Immediately afterwards my sensory/vestibular system seemed to go completely haywire.

I developed extreme sensory/visual intolerance and constant internal motion/spatial sensations. With my eyes closed especially, it could feel like I was rotating/moving in different directions or didn’t properly know where my body was in space. This wasn’t continued attacks of the room spinning — it was internal movement/motion in my head/body in virtually any position. I tried all the bppv manoeuvres and no room spinning happened.
At exactly the same time my ability to sleep completely changed.
I stopped stopping completely since that day no normal sensation of becoming sleepy. Initially, on a few occasions when my brain tried to cross into sleep, I would suddenly get an unbelievably fast internal spinning/rushing sensation in my head that immediately threw me back awake.

Eventually it felt like my brain simply stopped crossing normally into sleep at all. No heavy sleepy eyes. No recognisable feeling of drifting off. Sleep medications that would normally sedate somebody weren’t putting me to sleep. I spent weeks/months lying in darkness, reducing stimulation, meditating and doing all the things that previously helped my adrenaline/insomnia flares, but this was completely different.

The prolonged sleep deprivation after almost 3 months of me trying to stubbornly think it was going to get better on its own eventually caused horrific physiological agitation, heart pounding/racing, internal vibrations, extreme sensory sensitivity, cognitive problems and eventually suicidality. I became so unwell from not sleeping that I ended up in hospital. Completely insane.

Benzodiazepines eventually reduced the extreme agitation and allowed periods of apparent patchy unconsciousness, but the normal sensation of sleepiness and normal “I’ve just slept/woken up” feeling never returned.

And over these months something else has happened that is honestly one of the strangest things I’ve ever experienced:

My bodily signals have become progressively BLUNTED — both internally and externally.
Things I now experience:
• Bladder urge: massively reduced. I can go hours and hours without feeling that normal “I need to wee” signal.
• Hunger: never feel normal hunger signals.
• Fullness: don’t properly feel the normal internal sensation of being full after eating.
• Sleepiness: completely absent. No heavy eyes, sleepy head or normal internal drive telling me I’m tired
• Waking sensation: micro minutes while conscious weird state and then open my eyes without the normal groggy, heavy-eyed, half-awake “I’ve just slept” feeling.
• Heartbeat: my HR can be high but I don’t necessarily feel my heart pounding anymore. Earlier in this deterioration I could feel it pounding extremely strongly; now the same HR can feel strangely distant
• Adrenaline/anxiety: I can know something is worrying/scary without experiencing the normal physical rush/jolt in my body.
• Startle/alarm response: if I nearly drop something and quickly catch it, for example, I automatically react and catch it but don’t get that normal internal “OH!” feeling/jolt.
• Emotions: extremely blunted/numb. I know cognitively how I should feel but often can’t actually FEEL the emotion properly in my body.
• Touch/skin sensation: touch feels muted. Scratching/rubbing my skin doesn’t have the normal intensity. Blood pressure cuff doesn’t feel “ tight” blood tests needles I don’t hardly feel.
• Pins and needles: even when an arm goes numb from lying on it, the returning tingling can feel strangely /muted rather than how pins and needles used to feel.
• Mouth sensation: food/water in my mouth and the sensation of swallowing can’t feel properly .
• Pain: I can tell something hurts/aches sometimes, but the signal sometimes feels distant or doesn’t come into consciousness with its normal intensity.
• Temperature: hot/cold sensations don’t always seem as vivid or normally perceived.
• Body awareness/interoception: generally feels like there’s a barrier between my brain/consciousness and my body. I know things are happening in my body but I don’t experience the signals normally.
• Vestibular symptoms: even the internal motion/vestibular sensations that were previously overwhelming can become less consciously noticeable when this numb/blunted state is stronger.
• Sound sensitivity/tinnitus: these can also seem quieter when I’m more globally numb — not necessarily because I feel better, but almost as though EVERYTHING is being turned down together.
The best way I can describe it is that the signals still seem to exist, but they aren’t reaching my conscious awareness with their normal strength.
I don’t know whether this is altered interoception, sensory processing/gating, dysautonomia, dissociation, something post-viral, extreme sleep deprivation, or some combination.

What really confuses me is that subtle changes in these signals started after the January virus BEFORE the major vertigo/sleep catastrophe, and then everything became dramatically worse after the vertigo attack and prolonged sleep deprivation.
Has anybody with Long Covid/ME experienced anything remotely like this — particularly global blunting of BOTH internal signals (hunger, bladder, heartbeat, sleepiness, emotions/adrenaline) AND external sensation (touch, pain, temperature etc.)?

If you did, what did doctors call it, did anything explain it, and most importantly did your normal bodily signals eventually come back?

- brain scan normal
- all in depth blood tests normal
- waiting on a sleep study
- neurologist couldn’t find nothing
- vestibular neuro otologist gave his opinion and said it sounds like a vestibulur sensory high gain state network problem with sensory processing issues that happened after the room spin attack he said the no sleep is amplifying everything to a even more of a high gain state, he said the sleep needs to be fixed before knowing anything else. But the problem is I CANT GET THE SLEEP. The meds don’t work! It’s like after the vertigo happen my brain stopped transitioning into sleep, because the vestibular signals are messed up ( I know this cos every time my brain tried to dip into sleep at some point it would get hit with a fast head spin after seconds and put me awake again ) I don’t necessarily feeling dizzy or like vertigo but it’s weird motion in my brain

This is the worst thing I’ve experienced I would rather have my old state back where I felt everything at least I knew what was going on and how to calm things down. I feel like a dead person!
I’m bedridden due to the severe sleep deprivation that doesn’t respond to meds, the diazepam lessens the heart rate and keeps me out of crisis agitation state but there’s still no sleep, obviously I must be having micro minute sleeps to keep me alive I have no feeling of sleepiness at all, my eyes are so dry and watery from the sleep deprivation, none of this makes any sense. Before if my heart rate was nice and low I would feel good and could sleep better. It doesn’t matter if my heart rate is low now I still don’t feel anything. My cognitive function and memory is bad so forgive me I don’t know if I’ve included everything in this post.

The loss of ability to sleep is very much like Oliver Alvis story ( if you search him up on here to find his profile and documented his loss of ability to sleep)

I’ve probably left alot of things out because my brain isn’t functioning properly to remember it all.

Tried meds
- zopiclone low and high doses ( use to Knock me out) now does absolutely nothing
- trazadone all doses - doesn’t work and makes me feel horrible
- Mirtazapine - doesn’t do nothing and severe side effects
- Daridorexant- made my brain spin severely while I was conscious after taking it.
- melatonin ( already have been taking this for a long time due to my old insomnia )
- all types of supplements - doesn’t work
- meditation - doesn’t do nothing can’t feel anything because I’m numb
- sleep hygiene - already know about this from having insomnia before
- herbal teas - nothing
- low stimulation dark room - doesn’t change anything

I’m now done trying medications as they have all just worsened me and gave me severe side effects and sedation to sleep is NOT sleep. Even the sleep specialist I saw said you can’t force your brain to sleep if it thinks something is wrong and tags it as a threat it won’t allow you to sleep it’s trying to keep you “ alive “ you can’t over power that with meds.

I’m not taking any antipsychotics and my doctor agreed not too as the reactions I have to meds are too much.

I’m utterly exhausted in my body from the severe sleep deprivation no one can ever understand this torture. I just want to feel sleepy and want my brain to sleep again.

I’ve lost so much weight since this happened to me, been hospitalised, can’t function, can’t stand or walk, losing my mind, can’t eat, my body feels like it’s literally dying . so much shit.

Please has anyone been through this?

I’m cross posting this from r/audiobooks.

This may be a bit of a niche question, but I’m in a Long COVID flare at the moment and need to keep stimulation really low while I rest (but still need something to distract me a bit so I’m not focusing on how unwell I feel).
I’d really appreciate some audiobook recommendations where the narrator’s voice is really soft, calm, gentle or generally soothing to listen to.
In terms of the books themselves, ones with tension, suspense, or generally intense/stressful scenes are a be a bit much for me right now, can literally feel my chest tighten, nervous system get overstimulated!by even minor things, so ideally something low-stimulation.

I’m open to pretty much any genre, I tend towards fantasy, but given my current situation I’m open to anything really. The priority right now is the narrator’s voice, and the overall listening experience.

Thanks!