- After recovering from COVID-19, individuals in the United States have been experiencing long-term side effects such as respiratory issues, fatigue, shortness of breath, heart failure, and neurological issues.
- The Mira Research team conducted a study in order to understand the symptoms experienced by long-haulers. We also interviewed Allie Iamonaco, a coronavirus long-hauler, to understand what it feels like to have long-term COVID-19 symptoms.
- If you are feeling sick or had exposure to someone who has COVID-19, you may want to get a COVID-19 test. A membership with Mira will get you a home-delivered PCR swab test for free.
Coronavirus COVID-19 causes long-term symptoms in many COVID survivors
Long-term effects are health issues that are caused by an illness, disease, or treatment that lasts for several months or years after infection. Long-term effects can be physical, mental, or emotional and can occur even if the initial illness or disease is no longer present in the body.
Individuals who have been experiencing long-term effects from coronavirus are identifying themselves as coronavirus long-haulers or long-termers. There is no conclusive research pointing to reasons why some people experience long-term effects. Long-haulers may experience long-term effects on their cardiovascular, respiratory, nervous, digestive, endocrine, and integumentary systems.
Coronavirus symptoms can last between 14 days and several months
According to the Confirmed Case Long-Hauler Survey, 82% of respondents reported symptoms lasting over two months, 41.9% of respondents experienced symptoms for over three months and 12.5% of respondents experienced symptoms for over four months.
The duration of COVID-19 varies depending on the case. COVID-19 patients with a mild case may experience fever, fatigue, loss of smell, or a cough. They will likely recover in about 14 days after exposure. However, those with more severe cases may experience symptoms for several months.
The long term effects of COVID-19 include respiratory issues, heart issues, fatigue, blood clots, and muscle aches
After making a recovery from coronavirus COVID-19, many individuals still experience long term side health consequences from the virus. It is uncertain who will experience long-term effects from coronavirus and the duration of these side effects. Therefore, it is important to continue wearing a mask and practicing social distancing to avoid potential long-term effects from the virus.
Older people and people with many serious medical conditions are the most likely to experience lingering COVID-19 symptoms, but even young, otherwise healthy people can feel unwell for weeks to months after infection. The most common signs and symptoms that linger over time include:
- Shortness of breath
- Joint pain
- Chest pain
Other long-term signs and symptoms may include:
- Muscle pain or headache
- Fast or pounding heartbeat
- Loss of smell or taste
- Memory, concentration, or sleep problems
- Rash or hair loss
Note: many of these are preliminary studies where data was collected in the form of surveys. Most publications on this matter have not been peer-reviewed yet.
Results of a survey done by Mira: sample size 57 (methods employed are explained above)
Post-COVID Fatigue Syndrome
According to the survey done by Indiana University School of Medicine, the most common long-hauler symptom is fatigue. Additionally, 91% of respondents in the Confirmed Case Long-Hauler Survey of 1,500 individuals reported that they experienced extreme and chronic fatigue.
The Centers for Disease Control and Prevention (CDC) refers to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as a significantly lowered ability to do activities that were usual before the illness. Many individuals with ME/CFS also experience sleep issues and problems with thinking and memory.
Muscle and Body Pains
According to the survey done by Indiana University School of Medicine, the second most common long-hauler symptom was muscle or body aches. Some individuals report that this pain occurs in the lower back and is usually sharp. These body aches can be differentiated from an injury in that they are typically accompanied by fatigue and other symptoms.
A survey done by Indiana University School of Medicine reveals that the third most common long-hauler symptom is shortness of breath or difficulty breathing. In our survey, over 60% of respondents reported respiratory issues. According to Johns Hopkins Medicine, COVID-19 results in initial damage to the lungs and scarring.
The damage to the lungs caused by infection with COVID-19 can take between 3 months and 12 months to heal. This may result in compromised respiratory function during this period of time. The severity of the disease, pre-existing health conditions, and treatment all affect the extent of lung damage.
Many individuals who had COVID-19 and recovered have been experiencing heart-related complications. Allie Iamonaco, a coronavirus survivor, notes that her worst ongoing symptom is chest pain and tachycardia. She explains that “with light activity, my heart rate will soar to 160-170 and usually trigger shortness of breath and fatigue as a result.”
Johns Hopkins Medicine explains that heart damage from COVID-19 can occur due to a lack of oxygen, inflammation of the heart (myocarditis), or stress cardiomyopathy. Based on a study done at University Hospital Frankfurt in Germany, it appears as if heart damage is independent of the severity of the COVID-19 case.
Post-Intensive Care Syndrome
Individuals who were hospitalized in an Intensive Care Unit from any disease, including COVID-19, are at higher risk for delirium, or confusion, problems paying attention, and issues with concentration.
These symptoms typically last for 3-9 months after spending time in the hospital. Many patients described issues with short-term memory, learning new information, and comprehension.
A study published in April 2020 found that of 184 ICU patients with COVID-19 induced pneumonia, 31% had thrombotic complications, where blood clots create blockages in veins and arteries.
According to Weill Cornell Medicine, ICU patients who have been given blood thinners continued to develop blood clots that included Deep Vein Thrombosis (DVT), clots in the legs, lungs, and cerebral arteries. Doctors are currently working on alternative treatments for these blood clots.
A study led by Patient-Led Research Group characterized over 200 total symptoms related to hormonal changes in a survey of 640 long-term coronavirus patients. These symptoms include testicular pain, urinary problems, erectile dysfunction, and menstrual changes.
Symptoms of this nature may arise due to low hormone levels (estrogen and testosterone) caused by long-term COVID. Estrogen plays a key role in regulating women’s health, and having abnormally low levels can lead to infertility, osteoporosis (low bone density), lack of sex drive, and depression. Similarly, testosterone is a key regulator in men’s health with low testosterone being associated with low sperm count, erectile dysfunction, and poor immune response among other symptoms.
Loss of smell and taste
An estimated 80% of people with COVID-19 experience a loss of smell, and many more experience a disruption or loss of taste as well. In several patients, these symptoms have persisted long after recovery from the disease itself.
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The research reported by Scientific American reports that the coronavirus uses the ACE2 receptors to enter cells. Among these cells are olfactory cells that support the sensation of smell in important ways. Therefore, disruption of these cells may lead to the loss of olfactory sensation in some coronavirus patients.
Similarly, taste receptors on the tongue carry the ACE2 receptor that COVID-19 uses to enter cells. If these cells are disrupted by infection, then it may offer some insight as to why coronavirus patients lose their sense of taste.
What Does it Feel Like to Have Long-Term Side Effects From COVID-19? An Interview With A Coronavirus Survivor
Below is a Question and Answer with Allie Iamonaco where she explains her experience with COVID-19.
Q: How long ago did you have coronavirus and how long did your symptoms last?
A: “I got COVID on March 22nd when I had to fly home from my study abroad because the US was closing the border. I started experiencing symptoms on March 31st, and I am still experiencing symptoms 114 days later.”
Q: Did you get tested and what type of test did you get?
A: “At the time I couldn't get a test because they weren't readily available but my doctor diagnosed me with Covid due to all my symptoms matching it. Approximately 3 weeks later I was able to get tested and tested negative but was told that was likely the result because the test was so far removed from initial symptoms. I got a nasal swab test."
Q: What effects did you experience or are you currently experiencing?
A: “My initial symptoms were a fever of about 100-101, chills, crazy fatigue (sleep 14+ hours then need a nap in the day, unable to do much but lie in bed), shortness of breath (had to take breaths in the middle of sentences), intense chest pain, tachycardia (heart rate over 140 when standing/ doing the light activity), nausea, lack of appetite, lack of smell, muscle and joint pain, brain fog/confusion, migraine.
Now, over 100 days later my main issues are: still having a fever of about 100 now for 100 days, though it only spikes a few times a day now rather than being constant. My worst ongoing symptom is chest pain and tachycardia, still with light activity my heart rate will soar to 160-170 and usually trigger shortness of breath and fatigue as a result.
A strange and annoying ongoing symptom is the brain fog - when I‚m talking I have trouble finding the word I mean to say - like everything is on the tip of my tongue which gets frustrating. I still get migraines and some other pain but the only ongoing symptoms that really still affect me are fever and heart-related issues.
Most doctor's appointments have concluded that this is just Post Covid Syndrome or Covid running its course but I had some bloodwork showed a high ANA level which usually indicates an autoimmune disease so I went for additional tests to see if Covid triggered autoimmune disease. I haven't gotten the results back yet.”
Q: What advice would you give to people who have not gotten coronavirus?
A: “Before Covid, I was a healthy 21-year-old with no underlying issues, and extensive testing after the fact has not detected an underlying problem that is causing these extensive complications from Covid. So this could happen to anyone. I urge everyone - especially young people - to take this as seriously as possible. I am so thankful to be seeing improvements and to never have needed extensive hospital care/ventilation etc. so I think I'm still a mild/moderate case.
But this is not something you're guaranteed to bounce back quickly from just because you're young and healthy, this disease has completely incapacitated me for almost 4 months, and has had me feeling like each system in my body is shutting down with symptoms ranging from neurological to gastrointestinal.
This completely took me out‚ there were nights where I was so scared to fall asleep because all I felt was pain, and my parents would walk by my room as I was sleeping to check I was still ok.
Even if your state is opening, take any precautions possible to protect yourself from this because trust me, you do not want to experience it. Wear a mask, minimize the number of people you come in contact with, and avoid putting yourself in unessential danger.
I know we all want life to go back to normal to see and hug our friends, but putting your social life semi-on hold may be the thing that saves you from this. So please, consider it. And stock up on vitamins!”
Where can I find support for dealing with COVID-19 side effects?
Extended periods of social distancing and physical isolation caused by the COVID-19 pandemic can all put strains on our mental and emotional wellbeing. According to the U.S. Department of Health and Human Services, the stress of a pandemic can result in negative effects on mental health. Some people have reported difficulty with concentration, irregular sleep patterns, heightened stress, worsening of preexisting chronic and mental health problems, and fear about getting ill.
Below are tips for maintaining mental health, adapted from a video talk with Gordon, The National Institute of Mental Health.
- Avoid using alcohol and drugs as coping mechanisms
- Maintain routines in terms of diet, meals, and exercise. Check out our article on how to stay active during quarantine
- Explore yoga, meditation, breathing exercises, and other wellness activities
- Stay connected with friends and family by talking on the phone, getting together outside at 6 feet apart, and joining large zoom gatherings
- Don‚t hesitate to seek help if you are having trouble coping with the changes brought about by COVID-19
- The Disaster Distress Hotline provides support for people dealing with emotional distress from a disaster.
- Call 1-800-985-5990
- Text TalkWithUs to 66746
- National Suicide Prevention Hotline assists people who are worried about a friend, family member or thinking about suicide
- Call 1-800-273-8255
- NYC Well connects individuals with a free mental health counselor
- Call 1-844-863-9314
- Text WELL to 65173
- Facebook groups: These groups aim to provide resources and support for coronavirus survivors. Survivors are able to post about shared experiences, get resources, and ask for advice.
- Survivor Corps is a public Facebook group with about 85.5k members.
- CORONAVIRUS SURVIVOR CORPS is a private Facebook group with about 8k members.
Source: National Institute of Mental Health (adapted from https://www.nogalesinternational.com)
How to avoid getting the virus
Since there is so much unknown information regarding the long-term implications of COVID-19, it is advised that you continue to take precautionary measures to minimize risk factors and your chances of contracting the virus.
Wear a mask: The director of the CDC recently noted that if everyone wears a mask, the spread of the virus can be controlled within a matter of several weeks. In general, you should wear a cloth face covering when indoors and in outdoor settings where social distancing is not possible. For more on what type of mask is best for you, when you should wear a mask, and the science behind wearing masks, see our article here
Avoid large gatherings - especially indoors: Large gatherings have been deemed super spreader events - where one individual infects a disproportionately large number of people with coronavirus. In one case, a single individual infected 52 others at a 2.5-hour gathering in Washington.
Additionally, indoor gatherings with poor air ventilation are conducive to the spread of the virus. A study in Japan found that individuals were 18 times more likely to contract the virus in an indoor environment. As the number of people at a gathering increases, so does the likelihood of contracting COVID-19.
Wash your hands: Washing your hands with soap and water for 20 seconds or using hand sanitizer with at least 60% alcohol may reduce the spread of COVID-19.
You should wash your hands after returning home from a public place, after shaking hands with others, after using the bathroom, before eating, and after coughing or sneezing. This is not a comprehensive list of all times you should wash your hands, but general guidelines in light of the pandemic. In addition, taking vitamins and regular exercise can help boost your immune system.
Research We Collected for This Article
Our Research: The research team at Mira conducted a poll in a Facebook group titled CORONAVIRUS SURVIVOR CORPS, which is a platform for those who have been impacted by COVID-19 to share their experiences. The question in the poll was “Which of the following best describes any side effects you have experienced after recovering from COVID-19?”
Respondents were able to add options to the poll and check off multiple options that describe their symptoms. Data was recorded after about 48 hours. The survey had 57 respondents and the results are summarized in a graphic featured in this article.
Other Research: This article also delves into the results of several other public health surveys on coronavirus survivors. A study titled COVID-19 Long Hauler‚ Symptoms Survey Report, conducted by Dr. Natalie Lampert and Indiana University School of Medicine was referenced in this article.
This study surveyed over 1,567 individuals in a Facebook group titled Survivor Corps, which connects and educates patients, doctors, and researchers impacted by COVID-19. The question in the poll was “If you consider yourself a Long Hauler, please let us know which symptoms you have experienced/are experiencing”.
Additionally, data from a study titled Confirmed Case Long-Hauler Only Survey, conducted by Karyn Bishof - B.S. in Exercise Science and Health Promotion, was used in our review. This study surveyed 1,500 individuals who identify as COVID-19 Long Haulers.
Interview: We also conducted research by interviewing Allie Iamonaco, age 21, who was diagnosed with coronavirus and is still experiencing symptoms after testing negative for the virus.