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Symptoms increasing?

Posted by jeindc @jeindc, Nov 28, 2025

Oh this group is such a help and for it and to Mayo for it, thank you.

From the start (April 2023 after COVID early that month - and yes I was vaccinated and have kept up) my symptoms have come one or a few at a time over nearly 3 years. First a "rash" on the right inside of my mouth and lower jaw that persists; then a rash on my right inner thigh and right ankle inner side plus edema, diagnosed by 3 docs as lymphedema, by one as lipedema. (Prescribed wraps that did nothing. Finally found good compression socks I can pull on.)

Then musical tinnitus that preceded severe hearing loss 9 months in. More recently brain fog and extreme fatigue. The brain fog is scary - I can't remember words - so I have to search the concept to get the word - always one I know but can't. I have a terrible time knowing where I put stuff and time seems to have no meaning. (I was forced to retire in 12/24 because of pain from the rashes and inability to stand or walk well enough.) Time passes and I am unaware of it.

Have others had symptoms keep coming? Is there more I might expect, knowing we all are very different?

And to the person who answered my question about breast size change: I still have NO answers. I'm trying to get an endocrinologist appt. and it appears March is the earliest. My newly larger breast keeps growing; the smaller one shrinking. Bras are an interesting fit! If the left one didn't hurt (2 mammograms + ultrasound found nothing) maybe I could manage with loose clothing but it does hurt.)

Here's to all of us and someone believing what we are going through AND doing more than saying "hang in there; it's still being researched."
JE

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

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h2998sc | @h2998sc | Dec 2, 2025
In reply to @jeindc "@h2998sc - the number of experimental "tries" is overwhelming -- if we add ALL of ours..." + (show)
Profile picture for jeindc @jeindc

@h2998sc - the number of experimental "tries" is overwhelming -- if we add ALL of ours together, imagine the profits for pharma!!

I have awful upper gut pain. After lots of testing, it was attributed to my spinal stenosis and arthritis not to my gut or to long COVID. I've opted not to have surgery again. In '99 the first surgery on L4/5 resulted in a horrible blood infection for which I was in the hospital 10 days and it was similar to what a dear friend got from L/3-5 surgery and the infection resulted in paralysis from the waist down. All I know is that tho' my back pain flared again in 2015 and for which I am on pain medication, the gut issues NEVER happened before - just since COVID. It's so bad that I can barely walk when it's at its worst which makes spine v. gut the cause logical.

I will ask my many doctors about carafate - thanks for that. Do you take it with the omeprazole? I don't know either drug and will look them up.

Yeah, you too about staying positive. On days when I get so very down because this has upended my life - my symptoms are as noted, many - and I'd just like some of the "better" me back.

JE

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@jeindc You take omeprazole 1/2 hour before carafate or 1/2 hour after dosing with carafate.I also take NAC 3 times a week.Cq10 twice a week.Zinc(50 mg) twice a week at least.Liposomal Glutethione,e,and vitamin c together.Fish oil,B5 and B complex.Occasionally 25-50 mg's trazadone some days for anxiety.I drink lots of water.I'm 72,and intend to fully recover.With God's Help.

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rashida | @rashida | Dec 3, 2025
In reply to @jeindc "@rashida thank you. I thought I'd replied and hadn't .. or so it appears. I wonder..." + (show)
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@rashida thank you. I thought I'd replied and hadn't .. or so it appears.

I wonder if others are tracking this. I can sit and all of a sudden realize an hour or more has gone. I used to be so good about getting birthday cards and other notes in the mail, being really early for appointments, and now because I've no sense of months the cards remain on my desk and being ready on time to leave for anything is impossible. It is sad and frustrating. My COVID was late March/early April 2023. Fully vaxed with J&J (first) and then Pfizer, Moderna, and before this Fall, Novavax to which I had NO reaction but they were late in getting it out and could not find it locally when I went in Oct. and had Moderna, the one to which I have the greatest reaction. (Since I've had COVID, my reactions to vax have been stronger - puffy arm, feeling awful for at least 2 days.)

Oh how do we keep going without our wits about us?

Thanks.
JE

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@jeindc you could be talking about me!

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jeindc | @jeindc | Dec 3, 2025
In reply to @h2998sc "@jeindc You take omeprazole 1/2 hour before carafate or 1/2 hour after dosing with carafate.I also..." + (show)
Profile picture for h2998sc @h2998sc

@jeindc You take omeprazole 1/2 hour before carafate or 1/2 hour after dosing with carafate.I also take NAC 3 times a week.Cq10 twice a week.Zinc(50 mg) twice a week at least.Liposomal Glutethione,e,and vitamin c together.Fish oil,B5 and B complex.Occasionally 25-50 mg's trazadone some days for anxiety.I drink lots of water.I'm 72,and intend to fully recover.With God's Help.

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@h2998sc Thank you for the information. I've passed it along to my many doctors. I hope you fully recover as well. I hope we all recover or at least have some semblance of the 'life before'. My hearing will not return so that's one I know about. As long as hearing aids work and I can afford new ones when needed, that will be one thing managed!

To us all .. respect for an illness that is not visible or understood and strength to manage its many disparities.
JE

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jeindc | @jeindc | Dec 3, 2025
In reply to @janetbender "Different symptoms with long covid that were misdiagnosed for a few years. I was dizzy and..." + (show)
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Different symptoms with long covid that were misdiagnosed for a few years.
I was dizzy and my balance was getting worse. Falling. None of the meds helped.
Bloodwork, X-rays, etc were normal. I thought they’d label me a hypochondriac.
I thought ET,(chronic leukemia) and POTS were all my diagnoses…

Finally I saw a neurologist and had an mri.
I learned another new medical condition…. NPH Normal Pressure Hydrocephalus. Leaking fluid on the brain.
A neurosurgeon will place a shunt in the brain to drain fluid.
Now I have something in common with Billy Joel - and it’s not singing!

Don’t give up trying yo find out what’s wrong with your body. Many conditions are difficult to diagnose.
It’s very discouraging when you’re told every test is normal…. But keep going. Good luck.

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@janetbender , thanks so much for this. You may THINK you don't have a Billy Joel voice but I say TRY IT once the stent is in - you never know.

I did more research and was astounded to see how this is named more often than I'd have thought. I had an MRI recently for cervical spine (an issue apart from COVID) and earlier this Fall, a CT and an MRI that included my head. I just sent your note to our care coordinator asking if the MRI and CT could be read again looking for this. I'm guessing that unless it's looked for, it may not be seen. I've asked her to find out more.

So appreciate your posting this. It's like all the others - we are supporting and providing our doctors with more information. It may not be what we need; it does add to the awareness of "something else" to consider.

You too, Janet. Thanks! We expect your first singing engagement dates posted soon!

Joan

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jeindc | @jeindc | Dec 4, 2025
In reply to @taunya6543 "@jeindc Both my GP and Heart Doctor (because everyone said shortness of breath and fatigue were..." + (show)
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@jeindc Both my GP and Heart Doctor (because everyone said shortness of breath and fatigue were my heart..not so!) told me no more vaccines because they could just make me more sick...I stay home alot now anyway

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@taunya6543 I had heart tests and it's healthy. The whole vaccine safety or not .. I was a polio pioneer in the '50s and have kept up with all vaccinations, even getting MMR again because of the outbreaks around the US. All the docs I see (and there are a ton and adding more all bec of LC) tell me to be vaccinated AND to mask if I'm out. EVEN if we need people to fix something in our apt. we ask them to mask. My immune system is shot - from previous cancer and this. Do as you think best. And try to not limit your life so much. I am because of pain and even w/ hearing aids (hearing loss from COVID) it's tough for a conversation in a restaurant or outside. Just try to be as well as you can.
Joan

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taunya6543 | @taunya6543 | Dec 4, 2025
In reply to @jeindc "@taunya6543 I had heart tests and it's healthy. The whole vaccine safety or not .. I..." + (show)
Profile picture for jeindc @jeindc

@taunya6543 I had heart tests and it's healthy. The whole vaccine safety or not .. I was a polio pioneer in the '50s and have kept up with all vaccinations, even getting MMR again because of the outbreaks around the US. All the docs I see (and there are a ton and adding more all bec of LC) tell me to be vaccinated AND to mask if I'm out. EVEN if we need people to fix something in our apt. we ask them to mask. My immune system is shot - from previous cancer and this. Do as you think best. And try to not limit your life so much. I am because of pain and even w/ hearing aids (hearing loss from COVID) it's tough for a conversation in a restaurant or outside. Just try to be as well as you can.
Joan

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@jeindc Thank you Joan for your kind words and the wisdom you share. I take each day as it comes and don't get upset if nothing much gets done...maybe down the road someone will find some answers..fatigue is the worst..take care

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