Finally: Diagnosis. Oddly: symptoms have come in stages. Others?
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.
Here are some resources sent to me through the organization listed at the bottom of this pasted email.
Long COVID Resources
A Comprehensive Guide for COVID-19 Longhaulers and Physicians
COVID Competent Health Care Providers*
Post Covid Care Centers List*
White House Reports on Long COVID Resources:
Caregiving, Family Support
Child Care, Early Childhood Development, Education
Community Services, Supports
Education Supports
Food and Nutrition Supports
Health Care Coverage and Access
Housing
Income, Financial Assistance
Job Assistance
Know Your Rights
Finding support
Covid-19 Long Haulers and The Americans With Disabilities Act (JAN): https://askjan.org/blogs/jan/2021/03/covid-19-long-haulers-and-the-americans-with-disabilities-act.cfm
Resources for People with Long COVID | ACL Administration for Community Living: https://acl.gov/covid19/resources-people-experiencing-long-covid
COVID-19 Insurance Denial Guidebook: https://www.kantorlaw.net/documents/K-K-Covid-Guidebook.pdf
Find Help (Find food assistance, help paying bills, and other free or reduced cost programs, including new programs for the COVID-19 pandemic): https://www.findhelp.org/
Navigating Career & Life Transitions with Long-COVID (webinar): https://www.youtube.com/watch?v=2cCTaPxKJ_Y
Long Covid Does Not Have To Be A Life Sentence: https://longevitylive.com/wellness/long-covid-does-not-have-to-be-a-life-sentence/
Finding community
Long COVID Support Groups: https://longcovidalliance.org/support-groups-and-mental-health-resources/
List of state-specific facebook groups: https://docs.google.com/spreadsheets/d/1vMNCrONg1oTy5QPzajNUJffu0gk4eBR4o585NosVgsk/edit#gid=0
Provider Education Resources
CDC Interim Guidance for Long COVID: https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/post-covid-index.html
WHO clinical case definition: https://www.who.int/publications/i/item/WHO-2019-nCoV-Post_COVID-19_condition-Clinical_case_definition-2021.1
ICD-10 CM Code for Post-Acute Sequelae of COVID-19: https://www.icd10data.com/ICD10CM/Codes/U00-U85/U00-U49/U09-/U09.9
If you are experiencing a mental health crisis, you can call 988 to immediately be connected to a mental health counselor for free and receive referrals for whatever resources you need, available 24/7 year-round.
The Alliance is a collaborative network of patients, organizations, providers, and scientists working together to advocate and educate about Long COVID. You can get involved with the Alliance here, to connect with our community of patients, researchers, organizations, and clinicians, and to stay up to date on our open meetings and updates about resources, research, and advocacy: https://docs.google.com/forms/d/e/1FAIpQLSdst1Ou3Wtyc3pSt3jBPhH3_gckX4dUbUio-XTlQmpahkW0mA/viewform?pli=1
Kind Regards,
Monique Wike
Executive and Advocacy Manager (She/Her)
Solve M.E.
mwike@solvecfs.org
http://www.solveme.org
I drink 16 ounces of water first thing in the morning, lie down for twenty minutes to allow the water to be absorbed, and then start my day. It does give a little more time to stay standing than if I don't follow that routine. A doctor at Mayo recommended this.
My experience has been very similar to yours. 2922 covid then three more times same time of year each time. Long covid 3 years now. Symptoms very similar. I’ve been on LDN for one year. Helps some mostly headaches but brain fog, fatigue, body pain, and awful head rumblings persist. I accept this all as chronic and forever. Many endure far worse. Good luck to all!
2022*
I agree, water is so important!