1. < Post-COVID Recovery & COVID-19

Do you fit this paradigm?

Posted by Bsquared @barbarabell, Feb 28 12:18pm

I caught COVID on Halloween 2020 and became very sick for about 3 weeks. I was very healthy and fit; I participated in many sports/outdoor activities and traveled quite a bit. After ‘recovery’, I felt better for a bit but never really great. I tried to scuba dive, hike, travel, etc but I just wasn’t enjoying it much. Never felt very good, cried over nothing all the time and had horrible panic attacks. About a year later, I started to get really sick: rashes, allergies to everything, shortness of breath, internal tremors, brain fog, facial tics, nerve pain, muscle pain, everything smells like burning algae, exercise is a joke. Constant crying, depression, nihilism, fear…you know the drill. Fatigue that cannot be adequately described.

So, I’m just wondering who else fits this paradigm? Infection with ‘classic’ COVID before the vaccine and then never really got completely better for a time? Then, started a slow, steady decline that stole away everything in life that gave you joy? Anybody see improvement or find anything that helps? By the way, I do have a freaking army of doctors and I’m a patient at UNC Covid so I’m not lacking in medical attention.

Thanks for taking the time to read this.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

jeindc | @jeindc | Mar 21 1:35pm
In reply to @barbarabell "After a couple of weeks feeling better, in fact, thinking about planning a trip, I am..." + (show)
@barbarabell

After a couple of weeks feeling better, in fact, thinking about planning a trip, I am on day 2 of severe headaches/increased tremors/tics, fatigue, fear, can’t get out of bed….ad nauseum. I hate this illness. It tricks you and then sucker punches you. The good news is that I start the RECOVER-VITAL Paxlovid study very soon.

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We will all be curious to learn more of what you learn from the study.

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Bsquared | @barbarabell | Mar 21 1:41pm
In reply to @klh1979 "I did get a second provider...a neuropsychologist at the larger Main Sanford hospital that did memory..." + (show)
@klh1979

I did get a second provider...a neuropsychologist at the larger Main Sanford hospital that did memory testing and when I asked her about my condition being related to Covid, she replied..."You cannot have Long Covid "Unless you were on a Ventilator!" That's when I gave up! I wasn't going to argue with a specialist!
I've done a little of my own research and "NO WHERE" have I read that!! I cancelled my follow-up appointment with her. If a specialist tells me that, then she basically said, I had to live with.
Also at age 63 I had to take early retirement as a lab technician, because I was afraid of making a mistake. My thinking hasn't changed nor my memory hasn't seemed to improved either. So frustrating.

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A rheumatologist told me that I couldn’t have LC or I would be getting better. I dropped him like a bad boyfriend and found a rheumatologist that was knowledgeable but it was outside my town. By the way, I walked out on the gaslighting rheumatologist in the middle of the visit like he was an idiot. I am lucky to have a somewhat knowledgeable but very open minded who referred me to the fantastic UNC COVID recovery clinic. Why settle for that gaslighting stuff? Your specialist is obviously uneducated and not intellectually curious enough to read the current literature on LC. You don’t have to argue but you can sure find yourself a specialist who knows something about LC. Better yet, go to your primary and get a referral to the closest LC clinic.

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1 reply
Bsquared | @barbarabell | Mar 21 1:42pm

Hope I don’t get the placebo lol

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klh1979 | @klh1979 | Mar 21 4:03pm
In reply to @barbarabell "A rheumatologist told me that I couldn’t have LC or I would be getting better. I..." + (show)
@barbarabell

A rheumatologist told me that I couldn’t have LC or I would be getting better. I dropped him like a bad boyfriend and found a rheumatologist that was knowledgeable but it was outside my town. By the way, I walked out on the gaslighting rheumatologist in the middle of the visit like he was an idiot. I am lucky to have a somewhat knowledgeable but very open minded who referred me to the fantastic UNC COVID recovery clinic. Why settle for that gaslighting stuff? Your specialist is obviously uneducated and not intellectually curious enough to read the current literature on LC. You don’t have to argue but you can sure find yourself a specialist who knows something about LC. Better yet, go to your primary and get a referral to the closest LC clinic.

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Thank you...but my primary has seemed to also poo-poo it. Haven't seen her in a while now. My primary sent me to the specialist that I saw above after I complained enough about my symptoms. I've also now have a random sporadic cough and she put me on an asthma medication...and I took it and it did NOTHING!! The definition of asthma does not fit my symptoms AT ALL. Everyday at no specific time I have a coughing spell...I have a certain Ricola original cough drop that helps my cough fairly fast (others don't). After the cough thing is over, I go on with my day...but it still happens every day. So strange!
I live in a small town and don't know of, or have never heard of any L.C. clinics and not really sure if the closest place would be Mayo? Which is about 400 miles from where I live. 🙁

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1 reply
Bsquared | @barbarabell | Mar 21 4:53pm
In reply to @klh1979 "Thank you...but my primary has seemed to also poo-poo it. Haven't seen her in a while..." + (show)
@klh1979

Thank you...but my primary has seemed to also poo-poo it. Haven't seen her in a while now. My primary sent me to the specialist that I saw above after I complained enough about my symptoms. I've also now have a random sporadic cough and she put me on an asthma medication...and I took it and it did NOTHING!! The definition of asthma does not fit my symptoms AT ALL. Everyday at no specific time I have a coughing spell...I have a certain Ricola original cough drop that helps my cough fairly fast (others don't). After the cough thing is over, I go on with my day...but it still happens every day. So strange!
I live in a small town and don't know of, or have never heard of any L.C. clinics and not really sure if the closest place would be Mayo? Which is about 400 miles from where I live. 🙁

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Maybe a new primary then? You may have to find doctors outside of your small town. Here’s a list of LC clinics by state:
https://resphealth.org/wp-content/uploads/2022/12/Long-COVID-Clinics-Final-1.pdf

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klh1979 | @klh1979 | Mar 21 6:27pm

Thank you, but the closest LC clinic is over 300 miles away from where I live. 🙁

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1 reply
Bsquared | @barbarabell | Mar 21 7:16pm
In reply to @klh1979 "Thank you, but the closest LC clinic is over 300 miles away from where I live...." + (show)
@klh1979

Thank you, but the closest LC clinic is over 300 miles away from where I live. 🙁

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I’m so sorry…mine is about 2.5 hours away. They do Televisits as well; in fact, some clinics never see you in person. Your primary refers you, the LC clinic has a televisit with you (it’s pretty long and they decide whether you need to be seen in person). I have to go in person but many don’t. If they don’t see you in person, they make recommendations/therapy, treatment plan that is implemented by your primary.

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1 reply
SpicyKim | @whoesonfirst | Mar 21 7:56pm
In reply to @barbarabell "After a couple of weeks feeling better, in fact, thinking about planning a trip, I am..." + (show)
@barbarabell

After a couple of weeks feeling better, in fact, thinking about planning a trip, I am on day 2 of severe headaches/increased tremors/tics, fatigue, fear, can’t get out of bed….ad nauseum. I hate this illness. It tricks you and then sucker punches you. The good news is that I start the RECOVER-VITAL Paxlovid study very soon.

Jump to this post

I am so sorry. That is pretty much in it a nut shell. That is it. My brain is shutting down.
Rest.

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1 reply
klh1979 | @klh1979 | Mar 21 9:03pm
In reply to @barbarabell "I’m so sorry…mine is about 2.5 hours away. They do Televisits as well; in fact, some..." + (show)
@barbarabell

I’m so sorry…mine is about 2.5 hours away. They do Televisits as well; in fact, some clinics never see you in person. Your primary refers you, the LC clinic has a televisit with you (it’s pretty long and they decide whether you need to be seen in person). I have to go in person but many don’t. If they don’t see you in person, they make recommendations/therapy, treatment plan that is implemented by your primary.

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Thank You! If I can convince my Primary (or find a new one) that I'm not just making stuff up or if she's learned more about Long Covid, perhaps she would refer me to a place that can do televisits? I've begun to feel like giving up but I keep hearing of people dealing with LC and so far I don't feel like it's going away anytime soon! Thank you again for your suggestions.

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1 reply
Bsquared | @barbarabell | Mar 22 9:52am
In reply to @whoesonfirst "I am so sorry. That is pretty much in it a nut shell. That is it...." + (show)
@whoesonfirst

I am so sorry. That is pretty much in it a nut shell. That is it. My brain is shutting down.
Rest.

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Better today. Human ping-pong ball.

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