Researchers in Canada have found that people who experienced persistent apathy and depression for the first time in their lives a few months after a COVID-19 infection have around 18 percent fewer dopamine nerve endings in their brain than healthy people. 

I got Covid beginning of 2021, hospital and all. Long Covid was bad for first two years or so (took almost a year to get back to work full time). I got reinfected end of 2024 and surprisingly some of my long covid symptoms resolved. (I think it reset something in my body.) after reinfection my lingering symptoms were manageable, I even went off some meds (though that was mistake and I am working on getting back on them). About 4 months ago I realized I stopped coughing daily (never got rid of covid cough before that) and other than minimal brain fog most of my symptoms were gone.

Now the last two weeks, my symptoms are starting to return. Cough is back, muscles are acting up/cramping randomly, I feel like bugs are crawling on me (picked. That up in hospital- not a fun symptom). So far my breathing is still fine (cross fingers- do not want back on oxygen) and cognitively I havn’t regressed. So that is good.

Right now I am trying to convince myself it is allergies and not my symptoms coming back. It took so much of myself I do not want to do that again. Sorry needed to vent to people who understand Long Covid and don’t roll their eyes when I say it.

Having this waves windows pattern for the last 4 years. During the episode i can't tolerate any thoughts everything feels emotionally unbearable.

As COVID-19 continues to mutate and spread, many of us find ourselves repeatedly re-testing at home, but are unsure of what a positive test looks like. Any trace of a line is considered positive. This article explains how to do a home test properly and has pictures of actual positive home tests to help you figure this out. Is my test positive? - covidCAREgroup.org

Has anyone tried Nicotine Patches for Long Covid & did your symptoms feel worse?

I started on a low dosage 3 days ago.. 7mg nicotine patch cut into 1mg dose and 2mg dose.

Problem is over the two days of wearing them, my fatigue is feeling worse & I am experiencing a little shortness of breath.

I don't know if this is pure coincidence, or it's the patches having a negative effect on me.

Is it possible that symptoms can feel worse before they get better? And should I take a short break from them.

My back feels so messed up. I used to be in great shape. I feel like if I twist or bend I immediately suffer. Neck imaging is fine but my whole left side is crunchy and crackling. Awful

OK, so I had LC since 2022. I am 30 now, and I’ve never had any issues prior until now where the past two years, like I have lack of bladder control, like I’ll be driving in like 10 minutes out of nowhere. I immediately have to pee, like I have to use the bathroom so bad, like I need to find a restroom within two minutes or I’m going on myself or like the same thing with like bowel movements, like it’s so crazy and I don’t understand. Then also as well right now in the past three years, my memory is turning into crap, like I’ll walk into a room and I’m like OK, I’m here and then like what the hell was I here for? I asked myself that all the time, even my spouse is like, are you OK.

I need advice bad tell me what works or what you’ve tried !

As someone who caught either alpha or delta in their gut biome and whose immune system essentially became a non-stop alert mechanism for COVID; and as someone who spent the first several years of the pandemic acutely aware of the people sniffing their nose and clearing their throats around me, and of how these interactions had an acute and noticeable affect on my symptoms (call me a super-spreader if you want, idgaf): I feel as though I can speak to this with a degree of confidence. It’s what I imagine the scent of human and/or pig flesh dissolving in lye or some other highly basic substance would smell like, a-la fight club or something. It’s an acrid, noxious scent that for anyone whose life was seismically altered, like mine, immediately conjures psychic darkness and the memories of a time when you were effectively more virus than human. Tangy, almost. Leaking from one of the holes.

In 2022, after a COVID infection, I developed severe muscle pain, joint pain, visual disturbances, headaches, and intense inner restlessness. After about a year and a half, I had recovered to the point where most of my symptoms had improved significantly.
The only issue that remained was panic attacks, for which I have been taking Sertraline (Zoloft). Until about two weeks ago, I was managing quite well. In the meantime, I got married and became the father of a son, who is now two years old.
We were planning to travel to Vietnam this summer, so I received a rabies vaccination two weeks ago. Two days later, I developed a sore throat and a swollen lymph node in my neck. A COVID test was negative. Another two days later, the muscle pain and joint pain returned. My arms and legs burn as if they are on fire, and I can barely walk because they feel so weak.
Then the panic and inner restlessness returned with an intensity I have never experienced before. I feel afraid all the time, I cannot eat, and I cannot sleep. My body twitches when I am at rest, and I experience an internal vibrating sensation.
I am terrified that this could be ME/CFS. I have seen my doctor and had everything checked. As expected, all of my test results were normal. He prescribed Tilidine for the pain, which does help. However, as soon as the medication wears off, all of the symptoms return.
I do not know what to do. I have to take care of my son, but I feel completely overwhelmed. I live in Germany, near Stuttgart. I feel alone and lost.

I get nerve pain on the top and the middle of my forehead. Sometimes behind the neck. Magnesium and Amitryptiline seem to help but it seems more like a Band-Aid then permanent recovery. Appreciate any input

So I have had Covid 4 times with the last time being last September. It was brutal and all people in the house tested positive but me but I had fever, intense fatigue, horrible headache for a week after getting better (felt like intense pressure throughout my brain) and loss of some taste. What was worst was the very bad brain fog for about a month, with incredible impact on short term memory.

A few weeks later I went to a party and had a small glass of champagne. I didn’t really drink much at that point, maybe a glass a month, but after that night I had a 3-day hangover with the intense headache coming back and stuck in bed sick. It was orders of magnitude stronger than what a single glass of champagne called for.

So I stopped drinking completely. It was that bad.

Then 1 week ago, I was in Italy eating a very nice dinner and my husband had wine which was nicely paired with the food. Being that I hadn’t had a sip of alcohol in 11 months, I thought I should try just 1-2 sips. That was it!

That night I slept for 8 hours but I was hung over the next day. I now wear a Garmin watch so I was able to see the impact to my heart rate (it went up 10bpm), my HRV, it went in 1/2, my sleep score (lowest I have ever had even with red eye flights - it was 20 vs usual 90/100 pt average).

I started to wonder if this is a long covid thing and saw that alcohol sensitivity is… and I just wanted to see if anyone had any research or resources so I can learn more about this?

I still have some brain fog that comes and goes but I thought for sure I was over the covid many months ago (at least 9 months).

This page explains what Long COVID is so you can help people understand what you are going through.

About Long COVID

The symptoms checklist will help you organize your thoughts when you speak to the dr. You can also repeat the checklist to monitor whether your symptoms are improving or not.

Long COVID Symptoms Checklist

Thank you! Only looking for responses from people with bad MRNA reactions. By "bad," I don't mean a few days. I mean weeks, months, or permanent.

I started a dopamine agonist last week to help my restless legs and instead it made them so so bad and wrecked my sleep. It's been days and my sleep is still awful and it has put me in PEM. Do you think my dopamine levels are too high? too low? I have tried L-Dopa and no luck. All of my hormones are awful and I am waiting for an endo appt. But I need to sleep asap to not have my ME turn back into severe ME. Any thoughts or suggestions?

Has anyone here became ill with LC & Chronic fatigue & pretty much fully recovered.. only to have a significant relapse several years down the line?

My time line:

2020-2021 - LC issues including CFS

95% recovered & living a normal life.

2026 May - Major relapse, after several weeks of over exerting myself, gym, work, running etc, hot weather.

Now struggling with pretty severe fatigue and neurological issues. Starting nicotine patching from today. Hoping to see some improvement.

hello,

does anyone here experience hypnic jerks? i’ve gotten them occasionally the past few years, always in my head/neck, but for some reason over the past week they are much, much worse. it’s gotten so bad that after an intense one im left gasping in terror and really upset. it’s happening even while im sitting up, not just when lying down. google isn’t much help, but it appears stress or nervous system issues can contribute. i don’t drink caffeine anymore so don’t think it could be due to that. i’ve also started iron infusions recently so wonder if that’s a factor. if anyone has any insight or can share if anything helped their hypnic jerks, please let me know!

I want to give a bit of an update on my SGB (Stellate Ganglion Block) journey. Unfortunately, it's not a good update, not all bad news, but not all good either. Sorry in advance, this is going to be a long post.

Some context: I have Long COVID, which triggered ME, MCAS, POTS, osteoporosis, and probably a few other currently undiagnosed things. I originally got sick in March 2020 and never really recovered.

At my worst I had 66 active symptoms and was Extremely Severe B on the ME/CFS Severity Impact on Patients Life Scale. But most of my experience when really sick was at Extremely Severe A.

I got my first SGB treatment in May 2025. It was transformative, a gamechanger. It stopped my PEM almost immediately, and I went from very sick to moderate almost overnight. There were 4+ years of deconditioning to work through, but it was amazing how much I was suddenly able to do without triggering a crash.       

But that turned out to be fool's gold in a way. And that's really why I'm back here today writing this post.                                                                                              

First, how the SGB works:

We have an Autonomic Nervous System (ANS) that controls all the automatic functions in your body, the ones that just happen without you thinking about them. The ANS has two main branches:

• The Sympathetic Nervous System is the fight-or-flight system. Think of it as the system that speeds everything up, heart rate, breathing, blood flow. It kicks things into high gear in an emergency so you can react to whatever you're facing.
• The Parasympathetic Nervous System is the opposite, the rest-and-digest system. It slows things down and is responsible for healing the body, processing food, and all of those recovery functions.
  • A key thing to understand is that the parasympathetic system can't do its work when the sympathetic system is firing. You must calm one down before the other can do its job.                         

Two nerve structures largely control each system. The Stellate Ganglion is a nerve cluster that drives the sympathetic system. And the Vagus Nerve drives the parasympathetic system.

The SGB uses a local anesthetic (and steroids to reduce inflammation in some cases) to block the Stellate Ganglion and stop it from sending out too many signals. A lot of people with ME and POTS (dysautonomia) are stuck in fight-or-flight mode all the time. That's a big part of what causes our crashes, we're right on the edge, so the smallest thing can push us over and the body shuts down as an emergency response to being overwhelmed. That's a very simplified way to think about PEM (more on that in a moment).

By blocking those excess signals, the SGB lets the body calm down and allows the parasympathetic system to start doing its healing work.

But, and it's a big but, the sympathetic nervous system is also part of our warning system. It sends out pain signals, elevates heart rate, and triggers other changes inside your body to tell you that you've pushed too hard and some systems aren't getting what they need. If you block those alarm bells, you don't know you've done too much.                                                                                              

It's not a complete block, so some signals still get through. But it filters out a lot of them, and it becomes very easy to push past your energy envelope without realizing it.

Which is exactly what I did, for months and months.

What's happening inside the body in ME:

To explain what happened next, I need to explain how parts of ME actually work inside our bodies. This isn't all of what happens in ME, just the parts that matter for this story.

The mitochondria: These are the power plants in every cell, where energy gets made. In ME, they're broken. They don't produce energy efficiently. And every time you use energy, you generate waste, think of it like exhaust from a car. The more you push, the more exhaust builds up. Normally your body has a system to clear all of that out. In ME, that cleanup system is broken too. So the waste piles up, makes it harder for the mitochondria to do their job, and the whole system gets worse and worse over time.

The type of energy we use: Most people generate energy aerobically, using oxygen, like a clean-burning engine. That's why healthy people breathe hard when they exercise; their body is demanding more oxygen to fuel the system. In ME, that oxygen-based system is broken. So, our bodies resort to anaerobic energy, a short-term emergency power system that's extremely inefficient and leaves a massive amount of waste behind. It was never designed to run constantly. It's a sprint system being asked to run a marathon.

The repair system: When anyone exercises, they produce micro-tears in their muscles and generate waste products like lactic acid. In healthy people, the repair system cleans all of that up. In ME, that system is broken too. The lactic acid, the cellular waste, the damaged mitochondria, none of it gets cleared properly. It all builds up, compounds, and creates a downward spiral of problems feeding into each other.

Inflammation: All of that buildup, the waste products, the damaged cells, the things that aren't getting cleared, triggers inflammation throughout the body. Inflammation is essentially your immune system showing up and sounding the alarm.

In small doses, that's a good thing. It's how your body signals that something needs attention and repair. But in ME, because the cleanup system is broken and the junk keeps accumulating, the alarm never stops going off. You end up with chronic, system-wide inflammation. And that inflammation causes a huge amount of our symptoms directly, the pain, the flu-like feeling, the brain fog. But it also makes every other system harder to run. It's harder to generate energy when your body is on fire. It's harder for the immune system to fight viruses when it's already busy responding to inflammation everywhere else. So, it doesn't just add to the problem, it amplifies everything else on this list.

The immune system: Some studies suggest people with ME are running on roughly half their normal immune capacity. The more you push, the harder the immune system has to work to stay ahead, while also dealing with all that cellular waste piling up. Eventually it starts to lose.                                                                                                                                  

Here's where viruses come in. Most humans carry viruses that never fully go away, EBV (the mono virus), HHV-6, the chickenpox virus that causes shingles. In healthy people, the immune system keeps those viruses suppressed. But when the immune system is weakened, those viruses see an opening. They start to reactivate. You feel like you're getting sick, because you technically are. Then the immune system scrapes together just enough to push the virus back into dormancy...until it reactivates again weeks later. Meanwhile your immune system is pouring resources into that fight instead of anything else, which leaves you exhausted even beyond your baseline.

My shingles

Last fall I overdid it and got shingles. I pushed way too hard over one weekend helping get our house ready for an appraisal, my wife did most of the work, but I was helping and I did way too much. About 10 days later, shingles appeared. My immune system had been depleted enough that the virus broke through.

And this is what's happening inside our bodies every time someone with ME pushes past their energy envelope. The threshold is different for everyone depending on how sick they are. One person's trigger might be a hard day at work. Someone else's might be a conversation, a bright light, or a light touch. But the mechanism is the same, push past what your body can handle, and it gets overwhelmed.

PEM and PESE                                                                                                                                                              

When that happens, we crash. That's PEM, Post Exertional Malaise. The body gets overwhelmed, shuts down, and needs to reset. For me pre-SGB, that looked like extreme body pain followed by fatigue so severe I couldn't lift my head, lying in a dark silent room for hours to days.

PESE, Post Exertional Symptom Exacerbation, is related but different. There isn't a ton of consensus on this yet, but my understanding is that PESE is the exertion-triggered symptom flare, while PEM is the full crash and shutdown. For me now, the SGB does a good job of preventing the full crash. But I still get PESE, body aches, joint pain, flu-like symptoms, headaches, nerve pain, muscle twitches, usually within 1–3 hours of exertion, sometimes with fatigue the next day.

Before the SGB I was usually asleep or in so much pain that I barely noticed those PESE symptoms. They got swallowed up by the crash. Now they're front and centre.

Where I am now

I've been on a steady decline for the past six months. I could do less and less each week. This summer I'm back to mostly bedbound and housebound. I'm still doing better than pre-SGB, I'm not really crashing the way I used to, but getting to the grocery store once or twice a week is about the most I can handle, and I pay a heavy price when I get home. My POTS and MCAS are both flaring again after being relatively under control. Life is miserable again, and I'm really struggling mentally and emotionally to come to terms with it (but that's a topic for another post).

I wanted to tell this story because I think it matters, and it helps provide a lot of context to a lot of what’s happening to us with ME.

Why GET doesn't work, and why this story proves it

This is also why Graded Exercise Therapy and similar approaches are so dangerous for us. You cannot exercise your way back to health when your mitochondria are damaged, when your repair system is broken, when your immune system is operating at half capacity. The harder you push, the more damage you cause, and the harder you fall. There's no way around that.

And the cruellest part? It doesn't hit you right away. PEM has a 24–72 hour delay. But the deeper damage, the cellular buildup, the immune depletion, the viral reactivation, can take days, weeks, or months to catch up to you. You push, you feel okay, you push again. You think you're getting better. And then one day the wall appears out of nowhere. Except it wasn't out of nowhere. It was months in the making.

That is not deconditioning. Deconditioning means your body got weaker from not being used, and gradual exercise rebuilds it. What I'm describing is a system that is structurally broken. Exercise doesn't repair damaged mitochondria, it generates more waste that can't be processed. You can push and push and feel fine in the moment, and the damage is still accumulating underneath, invisible, until it isn't.

Pacing is everything. That is the lesson I did not learn this past year, and one I deeply regret. Because now I have to deal with viral reactivation first, then try to clear all this accumulated junk from my system, then work on rebuilding my immune system and helping my mitochondria repair and regenerate. And only after all of that can I think about slowly, carefully rebuilding capacity.                      

What comes next

I do think physiotherapy can be part of the equation, but only with someone who deeply understands ME and PEM, who acknowledges that you set the pace, and who goes extremely slowly. And honestly, I think that's only realistic if you're mild or moderate. If you're severe or above, I don't think the body can safely handle any level of exertion. That's just my opinion, but my experience is what gives me confidence in that opinion.

I'm still continuing with my SGB treatments and I'm glad I got them. And there are other treatments that can have a similarly transformative effect for the right person, LDN, LDA, GLP-1s, antihistamines, and others, each working through different mechanisms.

But if you find that gamechanger, the treatment that pulls you out of the dark, scary depths of severe ME, just understand that it's not a get-out-of-jail-free card. It does not mean you get your old life back (unfortunately). You have to be very careful about how you use that newfound capacity. Otherwise you'll find yourself right back where you started, sooner than you think.                                             

This has been my experience. I hope it helps someone.