Do you fit this paradigm?

My situation is a little different, because I actually had multiple chronic conditions before I got COVID: I have POTS, HSD (Hypermobility Spectrum Disorder), an autoimmune arthritis, small fiber neuropathy, and central sensitivity syndrome.

It’s very common for a viral infection to kick off neurological and autoimmune conditions. We think that happened to me, because I was really sick for two weeks with an apparent cold, and two weeks later I started having neuropathy symptoms. Within 6 months of that, I started having the joint pain ultimately diagnosed as the autoimmune arthritis and so on. And most people are already familiar with the connection between COVID or a virus and POTS.

I was diagnosed with all these things in roughly 2018 and made progress. By the time lockdown started, I still had symptoms and pain, but my endurance and fatigue and GI symptoms were much improved.

After I got COVID, it all got worse. The doctors said it’s to be expected to have a flare, and it’s usually “transient,” but it wasn’t.

So depending on how you look at it, I either have long COVID or COVID exacerbated by underlying conditions. My neurologist diagnosed me with long COVID; he said there’s ongoing research on situations like mine, but it’s hard to pick apart what was the original condition and what switches got flipped by COVID.

My worst symptoms are fatigue, post-exertion malaise, increased pain sensitivity, and GI symptoms (pain during and after eating, distention, constipation), hyperhidrosis.

My doctor; she’s a gynecologist who specializes in pelvic pain, menopause and providing care to women survivors of trauma who would have difficulty seeking care. I do notice the slips, mostly because she brings it up. She has to write a lot more things down than I noticed her doing before, brings lists into the room when we meet, and she frequently gets right/left inverted. She does some outpatient gynecological surgery as well, and she’s been able to do that, so I think she has to be very intentional about her work and pacing, etc.

She was an avid runner and the COVID caused a chronic lung condition. But she’s been back at work at least. It’s just only during specific times of day and she has accommodations for the number of patients she can see. You’re right; it must be hard to scale back on a career…and life…like that.

I was already limited before this and trying to crawl my way back out, so I don’t want to say I’m used to it, but it’s been so disappointing to have this setback and have it drag out for over a year now.

I had Grave’s disease before COVID and it exacerbated thyroid wackiness, MAST syndrome, lots of autoimmune shenanigans, but nothing like your pre-existing situation. I developed arthritis, a positive ANA and osteoporosis in my spine. My rheumatologist is still trying to figure me out. Lots and lots of blood work. Next, the UNC clinic in person appointment!

Speaking of which, how has you experience been at the LC clinic?

Na realidade me identifico imensamente com o que descreveu: há três anos, já vacinada, contrai COVID. Não tive quadro respiratório nem fique internada, apenas uma prostração e fraqueza que durou cerca de uma semana, na qual nao me alimentei tendo que ingerir suplementos pois nao conseguia abrir os olhos sem esforço. Fui gradativamente melhorando até que ... a melhora parou. Desde então mantenho uma queda de energia perene, que se acentua em alguns dias, sendo que então fico literalmente acamada por 3 a 4 dias, por uma fadiga que só consigo descrever como se o meu CNS estivesse hibernando. Não tenho interesse por nada nessas ocasiões e sinto imensa dor articular na região sacral. Estou medicada, tenho médicos me assistindo e sou médica, de modo que tenho acompanhado tudo que há em literatura. Penso que esse quadro seja mais próximo do que é descrito como Fadiga Cronica pos viral (ME/CFS), como alguns estudos apontam. Outros virus já foram descritos como causadores dessa entidade e parece que o COVID pode ter um mecanismo similar. Lanento, acredito que posso lhe dizer de todo coração: acredito que esteja sendo horrivel e espero que as coisas melhorem para todos nós

I’m crying now while reading this. Just last night, I began a log of all my symptoms. I believe, wholeheartedly, the Pfizer vaccine, has ruined my life. Since Jan 2021, my health has drastically changed. I can relate to every symptom you experience. I’ve also got black lesions inside my mouth (bottom lip), splenic lesion, IPMN side branch cyst, inflammation hepatic artery/ celiac stranding, and scattered foci in both kidneys too small to characterize.
I’m so scared and the doctors at follow up informed me the epigastric pain was in fact not Vasculitis but a mimic of that. Nobody has followed up with me about any other findings.
I’m extremely tired, to the point of utter exhaustion. I’ve tested positive 6 times for Covid, last time was Jan 28, 2024.
I’m in bed now and it’s 1227 PM

I’m so very sorry for all the symptoms you are experiencing. Did you contract COVID before the vaccine or all your symptoms emanate from the Pfizer vax? I had the Moderna vax (and 2 boosters) but my original infection was before it was available. Have you asked your primary for a referral to a LC clinic?

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

You aren’t crazy. I can’t speak to cysts and lesions but I went through a phase with mouth sores and burning mouth syndrome. I no longer have either (so it could be a phase for you…don’t lose hope). My understanding is that inflammation is a hallmark of LC…many scientists believe inflammation in the brain is associated with brain fog and the terrible fatigue. I also had a phase where I was in bed a lot and could not get up in the morning. I’m not having that right now, so, again, don’t give up. Still have fatigue and brain fog, but not as severe. Yesterday, I fertilized my lawn and today I feel ok instead of being in bed. I don’t freeze in the middle of sentences as much anymore. I might be getting better but I don’t know. Nobody knows what the end game is here. I’ve got over 3 years of LC and, truth be told, eight months ago, I thought I would be completely disabled by now. I’m not. Keep hope! I am currently enrolled in the RECOVER Paxlovid study (if it ever starts!) so I’m hopeful about that, too. I can sense your depression, too. Boy, have I been there. I don’t have that right now, either. It got better. Keep hope and don’t EVER let a doctor gaslight you. If doctors aren’t knowledgeable about LC or treat you dismissively, walk out and find the one who are. I’m so happy you have an LC clinic appointment!

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..

Thank you for your encouraging words. I appreciate you for taking the time. I, too, get mouth sores. I, also have black lesions on inside of bottom lip that I acquired in 08/2022 & have never gone away. The brain fog, memory issues, RLS, HBP, are constant, as well. However, I do have hope. And I am thanking from the bottom of my heart.

Oh wow! I’m so glad you have the support from your family.
I’m so sorry you’re going through all of that. The depression is debilitating. I’m thankful you shared your story as you did.
It seems there are way more beautiful individuals willing to listen & offer experience, strength, & hope than I realized. Thank you to all of you. God bless us all