Do you fit this paradigm?

Yes! I wrote down symptoms as they occurred in early 2020. Covid hit me neurologically. I’m pretty sure I was only infected once, so all these symptoms have been from that original Wuhan strain. Initial symptom was amnesia (likely a focal seizure) and migraine (never had one before). The following week I was OK did not feel myself. I got the fatigue about a week and a half after initial infection. Then weeks later the nerve pain. I had a couple of other small focal seizures (small memory lapses) that first year. I was seeing a neurologist before the term long Covid existed. Doctors could find nothing wrong. Then everything went away. I started to feel great - felt mentally sharp, started walking daily and losing weight. Fast forward a few years and I’ve lost 50 lbs and have no appetite, and the brain fog is worse than ever. I had a lot of anxiety, but did not take meds for it, because I felt the anxiety was caused by the pandemic, and I felt I could manage it. Add poor sleep getting up 10-15 times a night. As you mentioned, I also found myself getting more emotional than before, and had a few episodes of sadness and weeping that were not normal for me - I am normally a cheerful and optimistic person. So lots of things were not ‘me’. Three and 1/2 years after initial infection I had a seizure that required an ambulance and hospital, and was diagnosed with Epilepsy. So to answer your question, yes, Covid symptoms seem to come and go over time. It will take years for the medical community to catch up with what we are experiencing..

Each of our stories is a bit different, but all are heartbreaking...though I've posted a few times, I'm not even sure I have Long Covid, except it's the only thing that makes sense with basically OK lab and scan results yet the weird symptoms that so many of which you all describe. I've had chronic sinusitis for a bunch of years (two surgeries, balloon and antrostomy), but though my sinuses now look clear to the ENT, I've still got congestion, PND with gag coughing, now accompanied by muscle aches, insomnia, depression, brain fog, and post-exertional fatigue. This syndrome started after my second Covid bout in June 2023. At month's end, I go to NYU for an official assessment. But I'm beat. My life partner died in 2018. After three years of caregiving, then death chores, grieving, doing Covid solo, I'd been hoping to hit the ground running in 2024 to jump-start whatever I could conjure up as "my new life." Now this. It feels like a cosmic joke. Then again, I ask myself, "Well, why not me? Why would I be exempt?" Reality, yes. Mood-lifter, no. I'm reading everything, buying herbs I never even heard of, meditating with Insight Timer...but, by far, this Mayo board is my best go-to. Thanks, everyone, for so honestly sharing it all. It's a gift. Sending good vibes to all with hopes for breakthrough research findings.

I also try not to ask the question “why me?” ...but, the question is there. I have lived a healthy life and tried to take care of myself and my family.
I have never been a jealous person until now, but when I see people laughing and talking and having fun, I must admit, I feel jealous.
These two years stolen by LC make me angry.
I pray for peace and grace but mostly I am mad and defeated.

This resonates with me. I was so angry for a long time. I used to scream and cry like a little kid. I have two sisters, both older and able to do anything…I was so, so jealous of that. Three years have been stolen of my life. I’m still struggling (it’s up and down), but things do shift and change somewhat over time. I am in a better place than six months ago. Don’t lose hope.

If I had even a tiny bit of improvement, I think I could relax and hope to get better. As it is, even with a team of doctors trying to help me, I continue to get worse. I hate to think where I will be in another six months.
Like you, I have cried and screamed and mourned my lost life.
I also have an older sister who is planning a trip to see friends and shopping for a nice wardrobe. I’m glad she can do these things, but also jealous as I sit on the couch too dizzy to do anything at all.

Where you are right now was me six months ago. I thought that I would be totally disabled by now. I couldn’t breathe and I was covered from the waist up with three different rashes. I had internal tremors/tics so severe that I couldn’t finish a sentence or thought. I couldn’t eat because everything tasted of fish and everything smelled like burning algae. Over the last six months, symptoms have begun to lessen or fall away. I still have some tics, tremors and headaches and, if I taste fish, I prepare for a day or two of not feeling so great. It took over three years for things to improve a bit here and there. None of us know the end game here but hang in there.

I was in my best shape and best life before getting Covid Dec 2020. Never had a vaccine before or since.

I did have psoriatic arthritis and had JUST gotten relief from my 10+ yrs of arthritis pain after starting Humira.
Gods funny humor showed me to be careful with my words because before Covid I had exclaimed how amazing it felt to NOT live in pain and how I NEVER want to live like that again……
I was pretty sick for about 3 weeks with a different symptom every day. Never bad enough to be in a hospital but I was quarantined with my young son and did ok… just sick and tired and struggling to pull myself up each day to not let him be afraid.
It took me 3 months to “feel normal again”. I had lifted weights for 30yrs at this point, even did what you would consider powerlifting but never competed. I was healthy, lean, strong, and full of happiness and energy…. Until then. Once I recovered it was like I didn’t skip a beat in the gym. I had all my normal workouts back on track and felt amazing.
Three months later I started getting a wide array of weird symptoms from heart palpitations, fatigue, insomnia, anxiety, extreme muscle pain and a continuous decline in muscle strength and endurance. Week after week the pain was more severe the weakness more pronounced. My GI symptoms that I always had were exacerbated and over the last 3 years have progressed beyond compare. A daily eye twitch for probably 6 months, almost daily cramps in my legs, tiny spasms under my skin down my legs, and fingers cramping.
Numbness in extremities, horrible brain fog and what was almost like memory loss? It was like I was busy all day but accomplished nothing and couldn’t explain how… like walking in circles trying to get things done. Like maybe In slow motion?!

I saw every kind of specialist for next 6 mos trying to get answers. Gastroenterologist, neurologist, cardiologist, psychologist, psychiatrist, endocrinologist..,. Finally after the psychologist referred me to psychiatrist and I was diagnosed with ADHD, the cardiologist diagnosed me with two types of heart palpitations that he couldn’t help with, the endocrinologist diagnosed me with Long Covid, but said they’re isn’t much we know or can do and we don’t know if it will come and go or come and stay…. I was on a path of discovery and recovery…
3 years later the neurologist said he can’t help me, my original rheumatologist diagnosed me recently with fibromyalgia, and my gi dr after 3 years of tests, scans and 4 different medications finally prescribed me something to help with my pain and symptoms.
I use to take allergy meds before taking humira for arthritis in 2020… now I take a handful of med for all the ailments. For nerve pain, for insomnia, for brain fog/adhd, for stomach, for a viral infection that apparently Covid brought out of hiding, muscle cramps, and I’m sure other stuff.
Someone above mentioned PEM (post exertional malaise) that is associated with CFS but now also Long Covid.
I’ve been doing research with some holistic medicine drs and some wellness drs who think it’s some mitochondrial function problem. Whether Covid triggered it or it’s secondary to whatever else we are trying to find a way to test for it and do some treatments based on that.
I’ve not ever been much of a crier or had depression in my lifetime… but these last 3 years have ran me into the ground. Depression from not knowing what was wrong with me depression from no one being willing to help me even if just to treat my symptoms (finally my rheumatologist seems to be the only one willing to help). Depression from accepting this new way of life as my new normal and not being able to do anything physically for 3yrs. Accepting this new body that hurts now almost every day. Sleeping days away at times when before I couldn’t understand how people even took a mid day nap?! What is that? Now I know all too well.
I feel like if I accept this body then I accept the decline of it even faster. I always lived my life to know that because I was so healthy “I could get through anything being one step ahead and defying old age”…. Now my parents who are 25yrs older than me are probably healthier than I am and they are in their 70’s. To their defense they work out every day too. That’s where I got it from.
I am starting cryogenic chamber sessions tomorrow, I am going to try to add testosterone (being a woman in my late 40’s this will be the tiniest amount) and peptides into my regimen in the next week or two and my sweet husband has been doing deep tissue messages about 2-3 days a week for a couple weeks now…. With the goals of treating my body in every way possible from a cellular level to heal and build from the inside…. I can’t let the lack of information limit me from trying to survive and recover… I will desperately seek anything in any form to find a way to live life again..

I also try not to ask the question “why me?” ...but, the question is there. I have lived a healthy life and tried to take care of myself and my family.
I have never been a jealous person until now, but when I see people laughing and talking and having fun, I must admit, I feel jealous.
These two years stolen by LC make me angry.
I pray for peace and grace but mostly I am mad and defeated.

I tested positive for Covid, Jan 2022, almost exactly one year after my 2nd dose of Pfizer vax. I feel the vaccine has weakened my immunity. My dearest friends of 30 plus years, are now saying, “hey, if it’s out there, Bobbi is gonna get it”
I had heard of LC and joked with my friends about me having it. Well, I know what I experience IS NOT a joke.
I’m afraid to even mention it to a Dr.
I recently moved to PNW, while sick with COVID, and I’ve finally made a “new patient” appointment, this morning, with a clinic that is accepting new patients.
Thank you so much for these discussions. I feel crazy! Am I making this up? Are the lesions and cysts and inflammation normal to have? Why am I so damn exhausted? I couldn’t even cook dinner this evening.
Again, thank you so much