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Long Covid relapse advice
I got sick in Feb of this year with what Drs are now saying was prob Covid (although hospital never tested me), which led into double pneumonia. I had to go off work for 5 months as I was very sick and after months could not drive or walk steadily on my own without a cane. I did 2 months of physio twice a week which was physically exhausting in order to get me back to work. I started back to work and it took about a month to build up my endurance to even walk a regular pace (even though my job requires a lot of sitting). I would work and then come home and sleep or lay down the entire night until the next work day. Zero energy to even want to cook/eat a meal. I slowly felt the extreme exhaustion build up and my walking slowing down to the point where I feel the need to hold onto something while I walk because I don’t feel the strength to keep myself up fully. I am now back off work with what they are thinking is a long Covid relapse. One Dr says to get more exercise to build up my energy, one nurse practitioner says to rest as much as need. Has anyone has this experience? I was never prescribed any medicine, only supplements & vitamins. My immune system is working but I do have DARC (Duffy antigen receptor for chemokines) so my immune system takes forever to fight off illnesses. It seems like I don’t get any suggestions from Dr other than to pace myself and eat healthy and exercise. All I want to do is sleep/lay down. Even thinking too much is exhausting. I’m at the point where bathing is now down to once a week because it burns so much energy and makes me more exhausted. I am looking for anyone who has experienced relapses and what suggestions you have to not get worse, or anything that will help improve this constant feeling of exhaustion. I could sleep most of the entire day and when I wake up I feel no real refreshment of energy.
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I forgot to mention that my pneumonia has almost completely cleared months ago. Drs still hear a bit of repair that needs to fix itself but all tests show that it’s cleared and that I just need to naturally build up my lungs which I feel that I have. Now if I try to do a few light stretches I sweat immediately and my body starts to shake with weakness like I can’t hold myself up.
It’s very frustrating when doctors give conflicting directions.
Post-exertional malaise, Chronic Fatigue Syndrome (CFS) and Exercise Intolerance are very real.
I showed my neurologist some of my research (below) and she referred to Allergy and Immunology, who is now referring me to a Immunology Specialist. I started getting a gut feeling that my root cause was "cell level". Also, I learned Immunology does a different set of Lab Blood Work.
I feel the following are related to what you are going through -
Jarred Younger PhD – University of Alabama at Birmingham
070 - Why ME/CFS "fatigue" is not normal fatigue
066 - New paper: The top treatments for ME/CFS and Long-COVID
Paper - Patient-reported treatment outcomes in ME/CFS and long COVID (Very informative Charts)
https://pubmed.ncbi.nlm.nih.gov/40627388/
(Check out his other videos for areas of interest)
IMPORTANT - I share this with my doctors to help them understand what I’m going through.
UT Health Austin Michael Brode, MD Dec 20, 2023
Long COVID Treatment Explained: A Comprehensive Patient Guide
Understanding Long COVID: What Every Patient Needs to Know
I found Akiko Iwasaki PhD, Yale University - School of Medicine - Sterling Professor of Immunobiology and Professor of Dermatology and of Molecular, Cellular, and Developmental Biology and Epidemiology (Microbial Diseases) https://medicine.yale.edu/profile/akiko-iwasaki/
Akiko gives me hope for the future.
Paper -Immune markers of post-vaccination syndrome indicate future research directions
https://news.yale.edu/2025/02/19/immune-markers-post-vaccination-syndrome-indicate-future-research-directions
“Some of the most common chronic symptoms of PVS include exercise intolerance, excessive fatigue, brain fog, insomnia, and dizziness.” Many wonderful links inside this paper.
I recently found Polybio.
“The Long COVID Research Consortium has established a comprehensive research program on Long COVID disease mechanisms, with a focus on viral reservoir. The program includes scientists and clinicians from institutions including Harvard Medical School, University of California San Francisco, the J. Craig Venter Institute, Johns Hopkins, University of Pennsylvania, the Icahn School of Medicine at Mount Sinai, Cardiff University and Yale University.”
They have a "consortium-project-explorer" (Screenshot below c-p-e 1), click on body part and it shows links where you can click to see full study.
https://polybio.org/consortium-project-explorer/
Note: First time - walks thru the Intro to Polybio and "how to use" explorer, later you can Skip Intro
It's been a journey, Best wishes on your journey
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2 ReactionsThank you SO much for all that you have shared with me. I feel like I’m on an island all alone where no one seems to understand what I’m feeling and what to recommend. At most I feel like people think I am ‘faking’ this to get out of work or to sleep all day. I can’t tell you how alone you feel when no one seems to understand especially when it comes to the medical field where I live. I kept going to a ‘Dr’ and they kept sending me home saying if I didn’t have any pain then why am I coming to see them? I since have given up on seeing a Dr and only now have a nurse practitioner trying to help my situation. I basically am told to go home and rest and take supplements and vitamins. I struggled for 7-8 months in bed because rest never improved anything. Thank you for all that you’ve sent me, I appreciate anything I can lesrn for myself.
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1 ReactionSorry you're going through this. When my covid was at it's worst with respiratory issues, I believe that fresh pineapple saved my life. It broke down the congestion in my lungs like no medicine ever has. You could try that or supplements of bromelain.