What is Long COVID?

Long COVID is a disease that develops after contracting COVID or after receiving the vaccination.

Long COVID manifests differently for each person. There are people with experiences similar to mine where you get severely sick with the initial COVID infection and then you just don’t get better. It can look like my kids and husband’s experiences where people describe their initial COVID infection is mild, flu-like, then think they’ve recovered. You can even be asymptomatic. The way Long COVID manifests for them is that days, weeks, months, even years later symptoms start showing up. They can come and go, being an annoyance more than anything, all the way to extreme suffering and causing profound disability.

How is Long COVID diagnosed? 

Long COVID isn’t difficult to diagnose but often goes undiagnosed for several reasons. The first two are really the biggest obstacles. 

  1. We have a medical system that is based on patriarchal thinking and values. I have a longer article I’m working on to talk about this but many medical professionals value and protect their own power and egos over caring for people. Many doctors approach their patients with distrust and don’t listen. They don’t believe the patient’s experience, rather the patient’s experience has to be validated by authority, meaning someone with a title they grant authority to within the system and a test they also grant authority to. Like I said, it’s a very patriarchal way of approaching health. Within this system you have to get the person in authority to believe you in order to receive any help. This is a relatively new disease and while the symptoms are obvious we haven’t figured out how to accurately test for the havoc Long COVID is wreaking on our bodies and we have a patriarchal medical system obsessed with tests, not for helping, to determine whether or not the patient should be believed.

  2. Most people want to move on from the pandemic, they don’t want to think that anyone was injured from COVID and that large numbers of people are continuing to be injured and develop Long COVID. Most people are especially in denial that children and young, healthy people could have their bodies completely broken by this disease. I have so many personal anecdotes to tell with regard to this but generally people are shocked when they find out that my kids and I have been disabled by Long COVID. Privileged people talk about the pandemic in the past tense and don’t want to be challenged that there is still a health risk but those of us that are still affected by it don’t. It’s not over for us. 

  3. There are over 200 symptoms that people with Long COVID experience. Some people can have one symptom and others with many. My current number of symptoms is close to 100. The huge range in symptoms, the varying degree of severity from person to person, even the varying degree of severity that someone with Long COVID can experience just one of their symptoms is huge. Fatigue can range from feeling weak to almost comatose from person to person and even within one person. We want things to be measurable in true metrics and absolutes: I experience such and such this way, at this time, this number of times per week. None of my symptoms are like that. Just this morning I had a symptom that manifested differently from its latest pattern. One of my symptoms is neck swelling and spasm (my neck gets large and my neck muscles harden like a rock) used to be there everyday all day long, then it would come and go when triggered by certain things, then this morning it happened for no apparent reason. I was sitting in my bed and my neck swelled up and turned hard as a rock. 

How many people have Long COVID?

It’s unknown. The numbers I’ve seen are all over the place and the reluctance or refusal to believe and diagnose people with Long COVID makes this even more difficult to know. I’ve read everything from 6% to 85% of people who get COVID develop at least one Long COVID symptom. This is from Nature:

“More than three years after SARS-CoV-2 began its global spread, an estimated 65 million or more people1 are still living with the often devastating effects of long COVID — and scientists are still struggling to understand this complex condition.”

What causes Long COVID?

It’s not known but there are some ideas and it may differ from person to person. What is clear is that every organ system in the body is affected by COVID: the Central Nervous System, Peripheral Nervous System, GI tract, brain, eyes, liver, kidneys, immune system, lungs, skin, etc. COVID affects every part of our bodies.

  1. Viral persistence: we are not clearing the virus all the way from our body and it continues to persist and they have found the virus in brains and eyeballs and tissues and lungs. When they study the bodies of people who have died from long COVID, they find the virus everywhere. So they’re finding brain cells that no longer function the same way that healthy brain cells do.

  2. The triggering of latent infections like Epstein-Barr Virus (EBV)

  3. Damage from initial infection: tissue and organ damage, microclotting, they’re also finding that it alters the cells and the way that cells function.

  4. Auto-immunity being triggered

  5. Dysbiosis of microbiome

What are some of the symptoms of Long COVID?

It is such a long list and covers pretty much everything because COVID can affect everything. These are just some of them:

  • Rashes sometimes that doctors sometimes can’t figure out what they are. They haven’t seen that kind of skin condition before.
  • Strokes
  • New allergic reactions
  • Small fiber neuropathy
  • Palpitations
  • Frequent episodes of proximal motor loss
  • Spontaneous bruises
  • Tachycardia
  • Dry mouth
  • Ear pain
  • Sore throat
  • Sore tongue
  • Tinnitus
  • Abdominal pain, abdominal inflammation, abdomen tender to touch
  • Nausea
  • Chemical sensitivity 
  • Chills, shivering
  • Dizziness
  • Fatigue
  • Heat/cold intolerance
  • Hot flushes
  • Joint pain
  • Muscle weakness
  • Sweats
  • Swelling of hands and feet
  • Swollen and painful lymph nodes, Secondary lymph swelling
  • Hair loss
  • Itching
  • Bone pain
  • Heavy legs/swelling of the legs
  • Feet and legs turning purple
  • Muscle aches
  • Neck pain and neck muscle spasms
  • Balance disorder and loss of coordination
  • Brain fog
  • Confusion
  • Difficulty concentrating
  • Headache
  • Insomnia
  • Neck stiffness
  • PENE (post extensional neuroimmune exhaustion)
  • Poor memory
  • Tremoring and convulsions
  • Word finding problems
  • Blurred vision
  • Dry eyes
  • Shortness of breath
  • Back pain
  • Sciatica
  • Dry skin
  • Costal pain and inflammation
  • Sharp sudden pain, chest burns
  • Lung damage from COVID - Breathing problems, lung inflammation and slight burning at times 
  • Migraines (up to 20/month)
  • Head and brain pressure
  • Difficulty walking
  • Muscle weakness
  • PEM
  • Body coating pain, feels like she was dipped in acid
  • Muscle pain
  • Bone pain
  • Joint pain
  • Recurring fevers
  • Low blood oxygen levels - drops down to 75% at times
  • Difficulty with temperature regulation
  • Very affected by air quality
  • Sensitivity to light and sound
  • Impaired liver and kidney function
  • Poor circulation and blood flow

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