Why have I never felt the same since covid?

You may have heard of people who have lingering symptoms after covid.  People don’t talk about it much, as it can be hard to describe exactly what has changed. Long COVID, also called Long Haul Covid, Chronic Covid, Post Acute Sequelae of COVID (PASC), or Post Covid-19 Condition, is a condition that can happen after catching COVID that causes unpleasant symptoms. But most people, and even most doctors, still know little about it. 

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The symptoms that can result from long COVID are an endless list, as it can affect any part of the body.  Some of the most common long COVID symptoms are fatigue, brain fog, dizziness, early waking, digestive issues, headache, hot or cold intolerance, hormone changes, random pains, and intense fatigue after exercise.  Sometimes only a single symptom is present.  I have had long COVID patients who only had low back pain as a symptom, but had major digestive and immune problems show up on blood tests. 

You may be thinking “well I didn’t catch COVID when my fatigue started, so I can’t have long COVID.”   Not so fast.  In one study over half of people who caught COVID didn’t know they had, mostly because they didn’t have symptoms [1].  And in another study an astonishing 1 in 3 long COVID patients were asymptomatic during their initial infection [2].  You read that right, 1 in 3 people with long COVID didn’t have any initial symptoms of COVID, but weeks later developed mysterious symptoms like brain fog and dizziness. 

So could your fatigue be long COVID? Could your pains, your diarrhea, or your dizziness be long COVID? How does someone find out if they have long COVID?  Unfortunately it takes expert care, as there isn’t just one test to determine if someone has long COVID.  This is because long COVID isn’t just one disease, it is a category of diseases that can be caused from a COVID infection. Extensive testing, questions, and physical exams from an experienced doctor are needed to determine if someone has long COVID, and if so, what kind of long COVID. 

Most of the diseases that can be caused by COVID can be split into four main categories. Many patients fit into more than one category. 

  1. Chronic COVID viral infection.  Though initially it was believed that the virus is always cleared from the body, by 2021 scientists discovered that in some people the virus can hide out in the brain, gut, or elsewhere for months or even years. A patient will no longer test positive on a nasal swab test, but the virus has only moved, not gone away. 
  1. Other chronic infections.  The COVID virus can harm our immune system, particularly our macrophages and natural killer cells.  These are cells that are particularly good at fighting viruses.  Think of it as a defense mechanism that COVID uses to protect itself from our immune system.  Even when our immune system beats COVID, it can be left weaker against other viruses, especially Epstein-Barr Virus (EBV), also known as mono.
  1. Autoimmune diseases. Because of the changes to our immune system that COVID can cause, our immune system can become imbalanced and start to attack our healthy cells.  When our immune cells cause harm to our healthy cells, this is known as an autoimmune disease.  Long COVID can manifest as almost any autoimmune disease, including Lupus, Reactive Arthritis, Hashimoto’s Thyroiditis, Eczema, and more.  Sometimes these get better a few months after the COVID infection is gone.  Sometimes they are lifelong.  
  1. Organ Damage. COVID can damage the lungs, heart, brain, peripheral nerves, and more. This typically happens in hospitalized patients, but rarely can happen in even mild cases of COVID. Usually the damage gradually heals over the course of a year, but often it can take some nutrient assistance to heal. In really severe cases it can be beyond repair.   

References:

  1. https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2795246
  2. https://www.medrxiv.org/content/10.1101/2021.03.03.21252086v1.full

6 responses to “Why have I never felt the same since covid?”

  1. I’ve given up trying to persuade medical professionals my condition is real and debilitating. It’s not worth the adverse impact on my mental health. I was medically diagnosed by a combination of senior consultants specialising in neurology, infectious diseases and cardiology but that’s not enough. The diagnosis was one of the early ones: October 2020 for LC. I was first infected on my then ward in April 2020. Since then it’s been a constant round of disbelief and dismissal. Despite clinging on to work, I’m told I’m malingering and looking for time off work
    I keep shouting into the void, few listen: https://stoneheadcroft.com/2025/04/08/awake-with-pain/

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    1. Keep shouting! People have written whole guides on how to talk to a health care provider about long covid, dancing around either misinformation, big egos, or lack of time with the provider in order to reduce the odds of being dismissed. But overall it’s best to either stick to specialists who are knowledgeable of long covid, or just discuss and learn (and shout) with the long covid community.

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  2. The Long Covid consultant (a specialist in rehabilitation medicine) has been one of the worst for being dismissive. He attributed my condition to anxiety and past trauma – even though I’ve never been screened for mental health issues. I don’t believe I have anxiety – and when I told my Charge Nurse she snorted and said “you’re the least anxious person I’ve worked with”. To add insult to injury, five minutes after deciding I had anxiety the LC consultant, going through my file, said an MRI showed left sided neuropathy. He quickly added that this didn’t make my condition physiological. I’m in a couple of support groups and the consultant is well known to members.

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    1. That’s so frustrating! I’ve heard of that a few times, were even the so-called specialist is dismissive. I’ve seen hundreds of long covid or long covid adjacent patients and not one were just anxiety or depression. In fact anxiety and depression don’t look that similar to long covid, so that shouldn’t be misattributed so much.

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  3. hi, how are you able to help with long covid/CFS?

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    1. A plan to address long covid is generally many steps, based on the individual and their type of long covid, and involves diet, exercise, nutritional supplements, herbal supplements, occasionally medications (although only a handful such as beta blockers or histamine blockers may help). I’ll have to do a post going into more detail soon!

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