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Finally: Diagnosis. Oddly: symptoms have come in stages. Others?

Posted by jeindc @jeindc, Apr 8 2:47pm

A long post in hopes of learning of others who have had symptoms that were not initially experienced but came on in waves. After reading this interview from the AMA (I have a google alert set for "Long COVID" and try to read much of what I receive) I thought I'd post again.
>>Long COVID 2025: Symptoms, diagnosis, post-COVID treatments and the latest long COVID research | AMA Update Video | AMA
https://www.ama-assn.org/delivering-care/public-health/long-covid-2025-symptoms-diagnosis-post-covid-treatments-and-latest
I've posted before, as each symptom arose. It began after what I think was my second round of COVID in late March/early April 2023. (I think I got it early on - a mild case - in early March 2020 before there were tests or vaccinations. I'd traveled to speak at a conference when it was thought contagious from touch v. airborne. I was on 4 long flights and two long airport layovers, plus with others at the conference.

It's taken me a long time to finally have the symptoms confirmed as long COVID. Other docs - even those who, affiliated with teaching hospitals, were considered COVID experts - decided different things were wrong with me and then chose to stop seeing me bec they didn't think it was LC.

Finally a different uni-affiliated med center infectious disease specialist said it was LC given the symptoms and when they began and the changing ones.

In order of appearance - just picture the curtain opening on my journey for each act, er symptom!
-initial rash right leg (thigh and ankle) continues - in a different form and far worse now.
-peeling bottoms of heels - blisters form (and I'm not walking more than 3-5 feet at a time now bec of exhaustion) and immediately post-COVID in '23, had just tested negative before going to ER for rash - and the blisters which were diagnosed by 2 diff ER docs and my dermatologist as .. well, they didn't know.
-"rash" in mouth - right side again - has never stopped and dentist has no idea. It is not triggered by any foods. It is not helped by anything even a special mouth rinse that just numbs it for a bit.
-severe dry mouth and raspy voice/sore throat - horrible for someone who teaches online. I often lose my voice if talking for more than 35 minutes. Not conducive to teaching a 3.5 hour class.
-edema in both legs and feet but worse on right where rash lives on thigh and lower leg
-excess mucus when eating anything
-burning feet and legs, mostly at night that wakes me up
-small spots of fungus on my left leg - they don't know if it's related but I didn't have it before.
-tinnitus and musical tinnitus, the latter so annoying and yet so fascinating - my 'channels' change and do not seem triggered by anything - not "ear worms"; just musical tinnitus.
-severe hearing loss and finally hearing aids that help.
-abdominal pain that with already diagnosed (before this) of spinal stenosis, makes walking even a few feet so painful.

The exhaustion didn't come on until much later - late '24/early '25. I am still working at almost 78 and I have days when showering and getting dressed enough to appear on Zoom is more than I can do. If I go out - which I rarely do - for any reason (frequent doc appts that will now be more frequent*, periodic haircuts, theatre now and then) - me in a wheelchair, husband pushing bec the exhaustion adds to the incredible discomfort and I just can't stand up.

We all ask "is it just me?" don't we?

Next up: echocardiogram recommended by the Infectious Disease Specialist and now a cardiology specialist.

*About the more frequent doc visits: If others are on Medicare, the new policy that went into effect 4/1/25 tho' has been extended until 'Sept. is that there are very very few exceptions for which Medicare will pay for televisits. It is absurd since Medicare negotiates the fees and they are greater for in-office than televisits. PLUS we are all more at risk in a medical setting since in the article I posted at the start and from my docs, getting this again (and friends till are) would no doubt "do me in." If you have a voting Representative and two Senators, WRITE about this - that the physical and mental and financial cost to GO to a med office is nuts when it's just to get rest results or check in.

Ta-dah. Done. Thanks, if you made it through this. If others are still getting symptoms it would be good to know. To those of you who've suffered for more than 2 years - some of you for 5 - my heartfelt sadness. At 2 years, I'm just ready to lie down and be done.

Joan

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

jimthescientist | @jimthescientist | 1 day ago

Histamine Food Intolerance
After my bout with COVID in March 2020, I began to notice random itching, primarily on my scalp and upper back along with an itchy nose. I would also get sporadic small skin eruptions which resemble hives on my upper back and scalp. I could go for weeks without itching and then all of a sudden, it was back. I had already given up gluten in March 2021 so I knew that gluten was not the cause. From trial and error, I found it was related to foods which cause histamine release. Histamine release causes itching! I had never had this response before COVID or been “allergic” to any foods.

Although l tried to reintroduce the following foods, one at a time, each time that I did, the itching returned. I therefore don’t eat: Tomatoes or salsa, Peanuts, Pistachio Nuts, Spring Mix, or Yogurt. I also avoid chickpeas. I continue to use pea protein as my gluten free protein source. My two go-to pea protein foods are Vega Protein + Greens Vanilla and Veggipasta (Rotini). The Veggipasta is not available from my local grocery. It is a made in U.S.A. product, from AGT Foods and I get it from Amazon. It’s a little “Chewy” so after cooking (12 minutes) on sub-boil, I throw it in the food processor and “pulse it” into small pieces. My daily “pasta lunch” includes the cooked rotini, one ounce of organic pumpkin seeds, (turned to a powder in the coffee grinder), and organic riced broccoli cauliflower with a little olive oil.

REPLY
1 reply
cpivyca | @cpivyca | 1 day ago
In reply to @jeindc "Thanks, @cpivyca. I guess what I call a 'rash' is more like little canker sores that..." + (show)
@jeindc

Thanks, @cpivyca. I guess what I call a 'rash' is more like little canker sores that yes, come and go tho' are mostly present and have been now for 2 years. Painful when they are 'full blown'; tolerable when not.

I'll look into Propolis. Thank you.

I work in a home office and have days when just getting dressed and to my desk by noon is a big deal. I try to schedule no Zoom meetings or other things before then. THIS from someone who until my 70s loved early mornings - would be up and doing by 7 - fully showered and dressed. This noon thing is annoying but it just takes me forever to even get the energy (mental and physical) to do so. Yes, muscle pain too. I was doing a great job of tracking symptoms daily and then THAT got to be too much of a task.

My heart goes to you too. We are like a secret society, aren't we? Each with different symptoms, sharing some (which is a gift of this site to know from others), and managing responses to those who say "I got COVID and I'm fine - what's wrong with you?" or how others tell us we look great as noted by others and we try to explain and they don't want to acknowledge it's real.

One day, they will know. I hope we manage until then and are the first helped.

Joan

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Propolis is a bee product so I don't think it will hurt if it doesn't help. You can get it at a health food store or Amazon. It stings at first but really helps. It stains so be careful. I read about it somewhere so not a doctor's advice! Good luck!

REPLY
diverdown1 | @diverdown1 | 1 day ago
In reply to @jeindc "Thanks, @cpivyca. I guess what I call a 'rash' is more like little canker sores that..." + (show)
@jeindc

Thanks, @cpivyca. I guess what I call a 'rash' is more like little canker sores that yes, come and go tho' are mostly present and have been now for 2 years. Painful when they are 'full blown'; tolerable when not.

I'll look into Propolis. Thank you.

I work in a home office and have days when just getting dressed and to my desk by noon is a big deal. I try to schedule no Zoom meetings or other things before then. THIS from someone who until my 70s loved early mornings - would be up and doing by 7 - fully showered and dressed. This noon thing is annoying but it just takes me forever to even get the energy (mental and physical) to do so. Yes, muscle pain too. I was doing a great job of tracking symptoms daily and then THAT got to be too much of a task.

My heart goes to you too. We are like a secret society, aren't we? Each with different symptoms, sharing some (which is a gift of this site to know from others), and managing responses to those who say "I got COVID and I'm fine - what's wrong with you?" or how others tell us we look great as noted by others and we try to explain and they don't want to acknowledge it's real.

One day, they will know. I hope we manage until then and are the first helped.

Joan

Jump to this post

Just curious, did your blood work show a reactivation for Epstein Barr virus?

REPLY
elliep | @elliep | 4 hours ago
In reply to @jimthescientist "Histamine Food Intolerance After my bout with COVID in March 2020, I began to notice random..." + (show)
@jimthescientist

Histamine Food Intolerance
After my bout with COVID in March 2020, I began to notice random itching, primarily on my scalp and upper back along with an itchy nose. I would also get sporadic small skin eruptions which resemble hives on my upper back and scalp. I could go for weeks without itching and then all of a sudden, it was back. I had already given up gluten in March 2021 so I knew that gluten was not the cause. From trial and error, I found it was related to foods which cause histamine release. Histamine release causes itching! I had never had this response before COVID or been “allergic” to any foods.

Although l tried to reintroduce the following foods, one at a time, each time that I did, the itching returned. I therefore don’t eat: Tomatoes or salsa, Peanuts, Pistachio Nuts, Spring Mix, or Yogurt. I also avoid chickpeas. I continue to use pea protein as my gluten free protein source. My two go-to pea protein foods are Vega Protein + Greens Vanilla and Veggipasta (Rotini). The Veggipasta is not available from my local grocery. It is a made in U.S.A. product, from AGT Foods and I get it from Amazon. It’s a little “Chewy” so after cooking (12 minutes) on sub-boil, I throw it in the food processor and “pulse it” into small pieces. My daily “pasta lunch” includes the cooked rotini, one ounce of organic pumpkin seeds, (turned to a powder in the coffee grinder), and organic riced broccoli cauliflower with a little olive oil.

Jump to this post

i don’t have quite the same reactions as you. but in the ballpark.
i am taking antihistamines which seem to be working.
you might try topical .025% capsaicin. it helps me
both came from my LC dr.

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