r/LongCovid

I came across this video and thought it was interesting.

I've been unwell for about 18 months now, but only three months ago did a doctor suggest it's probably Long Covid. Up until that point, I'd been given various other diagnoses and left to it but never felt like I recovered fully and kept experiencing new random symptoms. I'm glad to have finally identified it as LC, but feeling very frustrated about it.

One of the most challenging aspects of this illness is how isolating it's been. Before this, I thought I had a good set of friends and family who would be there for me if anything bad happened. It's been devastating to realise that isn't true. I do have an amazing partner and some family members who are trying their best, but most friends haven't made much effort and some very close family members have distanced themselves. I know everyone is busy with their own lives, but it's been sad to realise that not even my best friends are there for me.

My closest friend, who I've known for over twenty years and who doesn't live far from me, has been so absent. After the first 8-9 months of illness, I was thinking about why I felt so lonely and I realised that this friend has made very little effort to check in, make plans or anything at all really. A few months ago, I mentioned to them that I was feeling really lonely and they acknowledged that they hadn't made much effort and that they were sorry. And then things just carried on in exactly the same way. I don't know how to process this. They are completely aware that I am lonely, struggling with my health and generally having a bad time and they just don't seem to see them supporting me as part of our friendship.

The worst moment was realising that I had no close friends to message when I found out it's Long Covid. Previously when I messaged this close friend about a diagnosis after I'd been through many tests, they didn't even respond to the message. Now I just don't know how to move forward in life generally. Even if I manage to feel better and manage my symptoms, I don't know how to live a happy life knowing that many of the closest people to me aren't willing to go out of their way to help if something's wrong. I don't know how to feel positive about recovery and moving on with my life when it feels like I've had this huge realisation about everyone around me.

Mostly just a rant and getting my feelings out, but I'm curious if anyone else has similar experiences.

I’ve had long covid for 3.5 years. I used to be a vibrant, happy and positive person. I’ve become negative, my world is small and I’m also so self limiting. I think it’s normal to not be in the sunshine and rainbow mindset with this illness but I’m not sure focusing on everything that is horrible and spiraling is healthy. I can’t seem to snap out of it either. The things that used to make me happy (being with friends, running, lifting weights, being outside, cooking/eating) I’m not able to do and if I do something it’s a whole ordeal with lots of rest breaks, bringing my electrolytes, a special diet, etc… so I end up just staying home. I feel like I’ve taken on this identity of a sick person and I’ve lost myself.
I read a lot and that brings me joy and I am able to walk in my backyard a bit with rest breaks.
Do y’all have any advice or thoughts? I don’t think being more positive would cure me but it may be more pleasant.

sometimes, I forget to remind myself I wasnt like this before

I feel vindicated but also slightly pissed off. Although my personal long covid journey may not be typical.

I got COVID in March of 2020. I had a few days of the worst fever I’ve ever had and a week of brain fog and fatigue but things slowly got better. Then a few months later I started having weird neurological symptoms… vestibular disequilibrium, pins and needles in my legs. Got all sorts of tests done. They said I Mal De Debarquement and had me go through vestibular rehab. Got a biopsy done for small fiber neuropathy that came back positive. Doctors said these weren’t related…

Then the episodes of fatigue, brain fog, and headaches started. This was end of 2020/ early 2021. Saw a neurologist and asked if this may be related to Covid, said no, that I just had a few different conditions… migraines and neuropathy. I didn’t understand how these could all start around the same time… I also developed allergies to things I wasn’t ever allergic to before like medical adhesives.

Got MRIs to make sure I didn’t have MS (that was a scary time). The migraine meds were only moderately effective.
In 2023 I had another flu that I suspect NOW was COVID again, and a month later my “migraine” flare ups started to become more severe and more frequent… bad enough that I was in a flare up 20 out of 30 days. My neuro just threw more meds at me and suggested I may have some functional neurological issue, fibromyalgia,or psychiatric issues which made me furious.

Nothing worked well and last year I was forced to stop working. The flare ups were so bad I just couldn’t do anything. I would get flu like symptoms, fatigue, brain fog, full body pins and needles, headaches, dizziness, muscle pain.

Finally, this year as nothing seemed to be working I demanded that my neuro refer me to a long covid clinic, and the LC doc at the clinic took my history and timeline and was the first provider to give me the specific disease pathways that were causing ALL OF MY SYMPTOMS.

Unfortunately, no quick fix, but was given diet mods, probiotics and a few other lifestyle changes to stick with for 6 months … after which we may try LDN, or other therapies.

I have to say, it’s going to be hard to be patient…

I’ve decided to experiment with nicotine patches just to get some energy back and cut through the brain fog because I really really want to return to my career but to do that I need to keep my skills sharp and get brainpower back.

* edit: grammar

Assessing impact on your life, your experience seeking healthcare and treatment etc and what’s important to be focused on.

Can be done by you and/or a carer and they can submit from their experience and about you.

https://forms.cloud.microsoft/pages/responsepage.aspx?id=GvPi3TMHTk6EYBQhfTHe1QeVTXeEo0VOrTh2vogQfnRURE1WWFdIWlpRV1ZGOVZPQ1E1TVIxUUZZRy4u&route=shorturl&fbclid=IwY2xjawRukP9leHRuA2FlbQIxMQBzcnRjBmFwcF9pZA80MDk5NjI2MjMwODU2MDkAAR7qjmzB-Dbsp71TLZquqX6O\_AKDQ-hHXIzOlXV0WCm-hvbeyWKlF19akz66eg\_aem\_lH6HLOhve9Tl7hH0Tpv6hw

Im done

Im done with whatever this is, im done with doctor jumping, im done with this torture everyday.

I have no peace or silence anymore just symptoms.

I look like a cancer patient. I have spider veins almost all over my body and when I show these changes to doctors they diagnose me with body dysmorphia or somatic disorder. Im a experiment, a mutant.

It’s good that I live in a country where assited suicide is legal and I get my psych evaluation rn for this but im also scared of death for sure but it feels like I just run away from it.

I don’t want to see myself getting worse and worse I can’t even look in the mirror anymore.

I think some of us get better and others worse it seems and im not winning.

Darkness is crawling up on me my mood changed so much i literally lost my ability to stay calm, before i end up in a ward for the rest of my life im gone.

Sometimes i just pace up and down like an trapped animal. Lately i walked to the graveyard where my dad is buried (suicide) and i just screamed to god and him.

I have the same destiny now just assisted.

I hope I can be forgiven.

Love,

Phil.

I am 38y old female. I have been dealing with Long Covid ,which got me POTS for 3 and half years. Ever since I have gained and lost weight , but my weight always come back as I also have PCOS.I became quite stable in 2024 and started proper gym which got me in shape and I gained muscle ,but since mid 2025, I have been dealing with significant flare and I have gained back weight...

Currently I am at 238 pounds. Though I was also obese previously but my muscle wouldn't make me look 200 plus pounds. Now, I have to force myself to eat ,however when I face sugar drops, I eat sugar. I am still watchful of sugar and carbs. My appetite is significantly reduced. I am taking GLP but still my weight isn't budging. Today ,someone said to my face that I am just lazy and make excuses , those who want to do something they achieve it by any means !! He basically called me a loser and frankly I feel like so..I am tired of explaining to people what happens with me on day to day basis from nausea ,extreme exhaustion to not being able to sleep all night. Even my functional doc says I am not serious .I try to exercise on days when I can and try to build my steps.

Please tell me where I am wrong, has anyone been successful losing weight with PCOS and all the inflammation that comes with long covid ? what should I do to lose even 10 pounds ...I am lost, hopeless and feel disgusted seeing myself in the mirror

Hi all,

I received my first stellate ganglion nerveblocker (SGB) about 6 weeks ago. Hard to say but I think it provided some relief from pain though little effect on POTS. That said, since then I've had ongoing issues of an uncomfortable (though not painful) lump in throat, and soreness of my oesophagus. I'm also no longer able to gargle and often choke on liquids.

While this was certainly the case more acutely in the 24 hours following the procedure (and to be expected), I'm not finding anything online that would explain why I continue to experience this.

Anyone else experience this? Any thoughts on other, unrelated causes?

Thanks,

,I’m a practitioner of traditional Chinese medicine, and I want to share a perspective that may sound unusual to many people here.

In China, there is a medical text written nearly 2,000 years ago called Shang Han Lun (Treatise on Cold Damage). It describes in great detail how acute febrile illnesses progress, based entirely on observable symptoms.

At that time, there was no concept of viruses or bacteria. Yet the patterns described — alternating chills and fever, body aches, fatigue, digestive disturbance, progression from surface to deeper symptoms — are still commonly seen today in conditions we now label as influenza or viral infections.

What is even more surprising is this:

In modern clinical practice, some practitioners including me, still use formulas from this text to treat patients with these kinds of symptom patterns — and in many cases, patients do improve.

From this perspective, the target of treatment is not the virus itself, but the body’s response to it.

Viruses change. The human body’s response patterns, however, are much more stable. So, we still can use the same formulas. I have used the old formulas to improve many patients with acute or chronic flu.

Would you be open to trying a 2,000-year-old herbal formula for flu-like symptoms? Why or why not?

To prevent crashes, and stay at baseline, we need to avoid stress,

bad people, and certain situations.

Have u felt stepped on, and un able to fight back, having to move out and relocate, avoid people and places and anything that is not good for you. How do u cope with this on a daily, and sometimes, we can't help but feel like the kid that gets sand kicked in his face. What do you do?..

I have been dealing with long covid for almost 3 years now, and one of my main symptoms are low blood sugar. Everyday is a struggle, and even a mission to just survive. If, I don’t eat enough carbs my blood sugars drop.. I carry a bag full of bread, glucose tables, and I even got prescribed a glucagon shots from my doctor in case of an emergency.

I’ve gone to my doctor and even got a referral to see an endocrinologist for them to just tell me, they can’t help me..

Please, if someone has gonna through the same and has gotten some answer, please share.

I have tried soda, OJ, candy, and nothing works. It has to be bread or something starchy..

Hey its Anna I haven't posted in a while, I think? I don't know days and weeks kinda blend together sometimes. I think that's probably the worst part of Long Covid. Like I hate doing it but I'm chronically online now. I don't really know what else to do honestly. Like I cant go down the street and honestly it's gotten to the point where I'm stressed just leaving my room. Like I want to be a part of the rest of the world or even just not look at my phone but I don't really have any Like by myself Hobbies. A lot of the hobbies I had before were social and I liked being social. Now I barely interact with even my family. I wear a mask around people and just want to get away from them so I can take it off.

It feels like the pandemic again but worse. I atleast could hangout with my friends once a week back then. Now I don't have the energy to do that, I just want them to leave so I can go lie down. Not to mention I can't go anywhere with them otherwise I might faint or just ruin the vibe overall.

What does anyone else do? Cause I would love some suggestions of some things to do that don't take a lot of energy that isn't just being online.

Hi group, I've been wanting to ask about this for a while but I was kinda embarrassed. For people who have a partner, are you able to still have a sex life? And... Do orgasms cause PEM?

I've been sick for four years. The first 3 years I was still able to have a certain sex life, on "good" days. Yes it was less often and we had to adapt so he does most of the work but it still happened and was nice.

I still have a certain libido, not a lot but still. The last 2 times we had sex, it triggered PEM. If I make sure I don't have an orgasm, I'm more tired for 1-2 days but no PEM. Last time I did... it triggered a PEM that lasted 2 months. I'm now scared to sleep with my husband 😭. The desire is still there but... The cost is so high...

Please tell me I'm not the only one... And if someone has gone through that, what did you do or what are you doing now, apart from abstinence?

Hey, bit of a long story but I’ll try make it quickish. I’m in the UK, 34, got suspected covid in July 2020 and potentially long covid since.
Symptoms began with a migraine and being sick, then severely disoriented, dizzy, heart racing/palpitations, shortness of breath, fatigue, visual disturbances, you know the classics.
I spent 2 years bedridden, then slowly started to get better, went back to work, did a MA (all still suffering with long covid and having crashes but still managing best I could). I still have exercise intolerance and have to pace.
But the last 6 weeks or so I have suddenly been deteriorating and I’m not sure why. All the symptoms above are back, plus hair loss, brittle nails, hot and cold flashes, shakes, restless legs.
I’ve been to the doctors and in classic them style, they don’t seem to care. I had a blood test that said all my levels were normal except I have pretty low iron (ferritin 17), even though I already take prescription iron pills. Come to think of it I have had consistently low iron for years, and when I first got sick with ‘Covid’ (no tests at the time) A&E sent me home with low iron and anxiety (lol). I do have severely heavy periods which doctors also refuse to look into, just offering me contraceptive pills which make me worse so I refuse them. I was actually on my period when I first got sick in that July 2020.
I’m wondering if anyone has had iron deficiency and long covid, or perhaps even my iron deficiency is presenting like an auto immune condition?! I’m starting to wonder if I have just suffered with such low iron for years, maybe that’s been my issue all along? Or it’s making my long covid/ chronic fatigue worse? Any advice would be great 🙂 thank you 🙏🏼

Heyy I wondered if anyone had similar experiences?

I used to have light PMS in lutheal phase (1 week before menstruation) and all symptoms disappear on day 1 of getting my period.

Since covid each month it is getting worse and worse. I started the Zoely anticonception 6 months ago and still it gets worse so the point that I have extreme mental breakdowns, crying fits and I get extremely suicidal to the point that crisis team has to get involved multiple times. When Lutheal phase ends I am feeling fine. SSRI had no effect as well.

My GP has made me switch to Yasmin now and I spend last night being extremely dizzy and throwing up so at this point I would just really be comforted to hear other people's story's and possible solutions. I tried searching this long covid reddit but couldn't really find anything about it.

I am five months out from covid, and so miserable I know I have long covid at this point. But for two days in a row I've been so woozy, I feel like I'm going to pass out. I don't have orthostatic hypotension. Made it just barely to the heart doctor today for a regular follow up, but everything is fine. She couldn't explain or help much with it. But at least my heart is fine. But my fatigue makes it impossible to stand/walk much. It's nauseating. Does anyone have any recommendations/suggestions? I have no long covid clinics or doctors near me.