The symptoms of Long-COVID can look different for everyone, in both severity and variety. But there are some consistent symptoms that are mentioned in several studies, including “Incidence, Co-Occurrence, and Evolution of Long-COVID Features.” The following symptoms were included in a list that they used to measure demographics of symptoms: Cognitive After fighting for his life in the hospital, Zach developed disturbing neurological symptoms in the weeks following his recovery. He lost track of time, couldn’t make sense of what people were saying, and truly believed he was in a dream. Zach recalls driving down the road thinking that the only way out of the dream was to die, and considered crashing his car into a tree to wake up. Thankfully he didn’t; but thoughts like this continued for about four weeks after his recovery. Brain fog is one of the most common Long-COVID symptoms that people struggle with, and it can vary from being a little forgetful, to dementia-like forgetfulness and confusion. “I don’t trust my brain anymore,” said Jen. “That’s really scary.” She recalls seeing words in her head and not being able to say them. After ruling out everything else, Jen’s doctors told her it was Long-COVID. Alexis was diagnosed with post-viral cognitive decline after testing positive for COVID-19. “Part of my identity was being sharp, being able to respond to things quickly, making insights, and all of a sudden I couldn’t remember the alphabet,” she said. The majority of people who contract COVID-19 list brain fog as one of the acute symptoms, however, many Long-Haulers continue to experience brain fog or other neurological symptoms long after recovering from the virus. Gena E. recalls that while sick, she didn’t watch TV because she couldn’t keep up with storylines or characters. In addition, she had to put her career on hold for 9 months because the brain fog was so severe, she could no longer write.
Using data from a hospital database, psychiatry and neurology experts led by Maxime Taquet conducted a six-month study including 236,379 survivors’ records. They included patients who had influenza or other respiratory tract infections during the same time as control groups. “Most diagnostic categories were more common in patients who had COVID-19 than those who had influenza,” Taquet wrote.
The experts found that 33.62% of the 236,379 patients who were diagnosed with COVID-19, went on to have neurological or psychiatric symptoms in the following six months. This alarming statistic caused the researchers to consider what the effect of this will be on society. They concluded, “Services need to be configured, and resourced to deal with this anticipated need.” They bring up a good point: companies need to prepare for a number of employees dealing with this debilitating symptom. Chest and throat Chest/throat pain was another symptom considered in the study. Four weeks after recovering from COVID-19, Courtney experienced a sensation that she had something stuck in her throat. She went to an Ear, Nose, and Throat doctor (ENT) who thought she had post viral thyroiditis, but her thyroid panel came back fine. Next she went to a different ENT who found that her throat was inflamed but it did not get better with steroids. Twelve weeks post-COVID it suddenly went away with no explanation. Andrew never had a cough or lung problems during the acute stage of the virus. He experienced brain fog, aches, chills, congestion, and fatigue. Many of his symptoms lingered for weeks, but eventually most of them went away. Over time he began to have chest pain, something he had no prior history of or had ever experienced while sick with COVID-19. He never found an explanation for it, and expressed that it was anxiety inducing to not know what was wrong. “The hard thing about it, too, it was like, it felt a little bit taboo to talk about it,” Andrew said. “And I don’t know if that was just like some of the circles I was in, but people were like, no, you can’t tell me you still have COVID symptoms. They’re going to think you’re going to get them sick.” Taste and smell Loss of taste and smell is a common and disturbing symptom but people expect to get it back after recovering from the virus. Gena P never got her taste and smell back at all. Keith had an interesting experience with this. He didn’t fully lose his taste and smell, but now he constantly has a distinct taste and smell of chemicals and raspberries. Gena E lost her taste and smell but it came back after four months. Courtney regained her sense of smell and sense of taste; however they are not the same. She is a nurse anesthetist and said that the anesthesia doesn’t smell like it should. Tremors There is a mysterious symptom not listed that needs to be addressed. A number of Long Haulers feel tremors, vibrations, or spasms throughout their body that can’t be explained through tests. It greatly affects sleep, mobility, and mental health. It can also be quite painful. In May of 2021, Dawson Creek’s writer Heidi Ferrer committed suicide after many months of battling Long-COVID. Her husband, Nick Guthe, after her death continued to fight through research and talking to many other Long-Haulers. He posted her Eulogy to Heidi on her blog and recalls the tremors and vibrations. “The tremors started in your hands. Small at first. You told me other people in your groups were getting them too. I’ll never forget you literally collapsing in my arms as your whole body shook, but only lasting for a minute or two, they seemed manageable. But then the vibrations started in your chest every night, robbing you of your sleep almost immediately,” he wrote. After his wife’s death, Guthe set out to discover what these symptoms meant and why so many Long-Haulers experience them. He reached out to Survivor Corps, a nonprofit movement educating COVID-19 survivors and advocating for them. Some top doctors at Yale School of Medicine co-authored a study called “Internal Tremors and Vibration Symptoms Among People with Post-Acute Sequelae of SARS-CoV-2: A Narrative Review of Patient Reports.”They wanted this research to be from the perspective of patients instead of doctors. Many aspects of Long-COVID that are still being discovered, so they collected patient stories about this symptom which has yet to be explained by medicine. Survivor Corps posted on their online support groups a message from Guthe, and received 140 emails and 450 Facebook comments of Long-Haulers experiencing very similar tremors and vibrations. The doctors from Guthe’s study with Yale organized all of their responses into seven domains and twenty-two themes, along with word clouds from the Facebook comments. The word cloud revealed, that along with the buzzing and vibrating sensation, many people were also experiencing burning and shooting pain. The study anonymously shared some of the comments that they received. Individually, it would be easy for people to dismiss these symptoms, but after seeing the numerous testimonies, side by side, there is no denying the validity of their pain. One anonymous Long-Hauler said that the spasms cause pain worse than childbirth and that laryngeal spasms cause her to have trouble breathing. Some could see the spasms under their skin and others couldn't. Several describe the sensation like sitting on a speaker with the volume all the way up. A couple of people said that they even feel the vibrations in their brain.
The study also addressed how this symptom affects mental health. One suicidal participant said that they had not slept for fifteen days due to the tremors. Another described it as “internal torture.” Unfortunately the study didn’t offer any medical answers or remedies, but it did show that this symptom isn’t just one person making it up or in somebody’s head. There were nearly six hundred responses included. This is incredibly validating for those six hundred people, but also tragic that so many people are experiencing this unexplainable symptom. Nataly is a twenty-five year old graduate student whose life was forever changed in June of 2020. She and her roommate contracted COVID-19 at the same time with very similar, moderate symptoms, but never had to be hospitalized. They were both healthy and active prior to testing positive for the virus. By the end of the two weeks, her roommate was recovering, but Nataly wasn’t. She was expected to return to work by the third week. That’s when things went downhill for Nataly. She began falling frequently and went to the emergency room to get checked out. They tested her for a stroke, but eventually told her that her muscles were deconditioned from COVID. The next day, she began shaking all over randomly and within days couldn’t walk anymore. For months, she was dismissed by doctors, and told it was no big deal. Her tests were negative for seizures or heart problems, so the doctors told her it must be a psychiatric condition. The therapists Nataly was sent to said her condition wasn’t caused by anxiety or depression, though it did cause her to become anxious and depressed because of how her symptoms affected her life. She stated that she had to beg doctors to keep looking while many of them told her it was all in her head, despite witnessing her episodes firsthand. Flash forward nine months, Nataly has been diagnosed with Chronic Fatigue Syndrome as a result of Long-COVID. She doesn’t have as many shaking episodes anymore and is slowly building her strength back up. Her roommate has become her official caretaker and she’s in the process of applying for disability benefits. Chronic Fatigue Syndrome Almost every Long-Hauler included in this project has, or still does experience an unusual level of fatigue. Some of them get better over time, but others develop Chronic Fatigue Syndrome (CFS). Timothy L. Wong and Danielle J. Weitzer wrote a review of numerous early studies of Long-COVID patients who develop Chronic Fatigue Syndrome. While some of the studies conducted in 2020 may be outdated now, (2022), the scientific research describing CFS, and why many Long-COVID patients develop it, was very informative. Due to the fact that there aren’t diagnostic tests or treatments for this illness yet, there is a stigma attached to CFS that it’s just people trying to get out of their job responsibilities or being lazy. According to the review, CFS patients react to stressors, even as simple as waking up in the morning, with a rise in heart rate and serum cortisol. These are physical signs that there is something wrong and that the body is going through something very real. The Institute of Medicine redefined CFS as “systemic exertion intolerance disease.” According to Wong and Weitzer, the criteria is: “a patient must have significant impairment in the ability to engage in pre-illness levels of educational, occupational, personal, or social activities.” The fatigue must last at least six months and the patient must have unrefreshing sleep and post-exertional malaise. Another key symptom is that they have orthostatic intolerance and/or cognitive decline. Many people with CFS also experience chronic pain. Wong and Weitzer write that the Epstein-Barr Virus (EBV) has been detected in roughly thirty-eight to-fifty-five percent of patients with CFS and is also associated with autoimmune diseases. “One of the most prominent potential causes of chronic fatigue syndrome includes infection with EBV, being highly studied in this setting,” (Wong and Weitzer 418). Epstein-Barr activation The association between Epstein-Barr Virus, Chronic Fatigue Syndrome, and also Long-COVID in general, is so common that it warranted more research. The scientific study entitled, “Investigation of Long COVID Prevalence and its Relationship to Epstein-Barr Virus Reactivation,” set out to discover if there was a connection between the Epstein-Barr virus and Long-COVID symptoms. The Epstein-Barr virus affects ninety-five percent of healthy adults and is mostly latent until an outside infection like COVID-19 reactivates it. The symptoms that determined whether a subject qualified for the study included: fatigue, insomnia, headaches, myalgia, confusion/brain fog, weakness, rash, pharyngitis, abdominal pain, tinnitus, fever, enlargement of cervical lymph nodes, and hearing loss. This blind study split its participants into four groups. The “long-term Long-COVID group” was made up of thirty patients who tested positive at least ninety days prior and had at least one Long-COVID symptom. This group tested 66.7% (20/30) positive for the Epstein-Barr virus, (EBV). The “long-term control group” had twenty participants who also met that criteria, but did not have any Long-COVID symptoms. Only ten percent (2/20) of subjects tested positive for it. Researchers did a similar pairing with short term groups. The “short-term Long-COVID group” had nine subjects who had tested positive at twenty-one to ninety days prior and had at least one Long-COVID symptom. They too, tested 66.7% (6/9) positive for EBV, as opposed to the short term control group, which only tested 11.1% positive. Every participant, both short and long term, reported similar symptoms: fatigue, insomnia, headaches, myalgia, and brain fog. Some also experienced tinnitus and skin rashes. Two developed Raynaud’s Phenomenon at four and nine months after testing positive for COVID-19. Raynaud’s Phenomenon is a condition which makes part of the body, oftentimes the hands and feet, turn blue or white and go numb due to lack of oxygen. It’s a common symptom among Epstein-Barr viruses in general, so its manifestation in Long-COVID patients makes sense. Those who experienced it without knowing the term, have referred to it as “covid toes.” An important thing to know about the Epstein-Barr virus, is that if one has genetic markers for autoimmune diseases, a reactivated EBV can allow the dormant autoimmune diseases to develop. For example, a perfectly healthy adult who has a latent EBV, can contract COVID-19, which then reactivates it, and before long they have Lupus or Hashimoto's. Alexis had Mononucleosis (Mono) as a teenager, and found in the process of searching for a diagnosis, that the Epstein-Barr virus had been reactivated. Her doctors suspected that she developed an autoimmune disease, as utilizing the autoimmune diet was one of the only things that helped her symptoms.