[6 min read]
In this article:
- Long COVID is identifiable at four weeks post-infection with COVID-19 and it manifests in a wide range of symptoms and conditions.
- It’s important to consult with a clinician if you think you are experiencing long COVID because the symptoms can significantly impact your daily life.
- To prepare for a discussion about long COVID with your doctor, document your experience with both COVID-19 and long COVID to make sure all of your symptoms are addressed.
What we know about long COVID
The COVID-19 pandemic has made a lasting mark on the world, and navigating the aftermath of the virus can be tough and bewildering for those who experience “long COVID”. It leaves many people grappling with persistent symptoms like pain, fatigue and brain fog for months or even years after their initial recovery from the virus.
In the first months of the pandemic, patients coined the term “long COVID” to describe the complex post-infection phase of infection with SARS-CoV-2 virus. Within months it was adopted by clinicians and researchers who were hearing from patients who felt like they were not returning to “normal.”
“At the very beginning of the pandemic we presumed that like other similar respiratory viruses, the symptoms associated with COVID-19 would go away once the body had fought off the infection,” says Jason D. Goldman, M.D., M.P.H., an infectious disease doctor and organ transplant specialist at Swedish. “But we began getting calls from patients who were previously healthy telling us that they were not feeling better weeks after they were thought to have recovered.”
When does COVID-19 become long COVID?
According to the U.S. Centers for Disease Control and Prevention (CDC), long COVID refers to the lingering effects experienced by people who have been infected with SARS-CoV-2, the virus causing COVID-19. It encompasses a broad spectrum of signs, symptoms and conditions that persist or develop after the acute phase of a COVID-19 infection.
Most people recover from COVID-19 within weeks, making it possible to identify long COVID starting at four weeks after infection. It can affect anyone, regardless of the severity of the initial infection, and sometimes symptoms emerge even when individuals are unaware of their initial infection. It typically manifests as a diverse range of new, returning or persistent health problems.
How is long COVID diagnosed?
There is no specific test for Long COVID, so diagnosing it can be a challenge. To make a diagnosis, health care providers rely on a patient’s health history, including a positive COVID-19 test, symptoms or exposure, coupled with a thorough examination.
Long COVID symptoms
Long COVID can also be difficult to diagnose because of its diverse and ever-evolving range of symptoms, which may last for weeks, months or even years, sometimes recurring intermittently. Unlike the acute phase of COVID-19, where symptoms like fever and respiratory issues are prominent, people may experience long COVID in a myriad of ways. Common long COVID symptoms include:
- Cognitive dysfunction or brain fog.
- Digestive problems.
- Neurological issues.
- Post-exertional malaise.
- Respiratory and heart symptoms.
- Other symptoms that are hard to explain or manage.
These symptoms can significantly impact daily life and, in some cases, result in disability, but they can be difficult to pinpoint and determine whether they are solely the result of long COVID. “The common issues we hear about from many patients with long COVID are exercise fatigue and brain fog,” says Dr. Goldman. “But the symptoms of the syndrome are very diverse, and many symptoms do not fall within those two categories. Patients often see more than one provider prior to confirming a long COVID diagnosis because they’ve been addressing individual symptoms one at a time.”
“The good news is that long COVID does go away for the majority of people who experience it. And because the pandemic was a huge infection event with so many people around the world infected with COVID-19 over such a short period of time, we are gaining a clearer picture of the virus and its impact more quickly than we have with past outbreaks.”
How to talk to your doctor about long COVID
Talking to your primary care provider is the first step in determining if the symptoms you are experiencing are related to long COVID. To help your provider make an accurate diagnosis, be ready to share as full of a picture of your health as possible.
Document your experience with COVID-19 by making notes that include information like:
- The date you first felt sick and the date you tested positive for COVID-19.
- When you first noticed long COVID symptoms.
- Any prior treatments or tests for long COVID.
- What makes your long COVID symptoms worse.
- How your symptoms affect your daily activities.
- How frequently you experience symptoms.
“At Swedish, we want to hear the full scope of each patient’s long COVID journey, and taking the time to listen to them describe their experience is the first step towards a diagnosis,” says Dr. Goldman.
Does long COVID have lasting effects?
Long COVID may lead to the development of new health conditions. Some patients report experiencing multiorgan effects and autoimmune conditions. Other chronic conditions such as diabetes, heart issues, blood clots and neurological problems may arise.
We have done research here at Swedish to identify factors that make certain people more susceptible to Long COVID. Studies suggest that those who experienced severe COVID-19, had underlying health conditions or did not receive a COVID-19 vaccine may be at higher risk. Health inequities may also contribute to long COVID, particularly in vulnerable populations.
“The good news is that long COVID does go away for the majority of people who experience it,” says Dr. Goldman. “And because the pandemic was a huge infection event with so many people around the world infected with COVID-19 over such a short period of time, we are gaining a clearer picture of the virus and its impact more quickly than we have with past outbreaks.”
Living with long COVID
Living with long COVID can be challenging, especially given the lack of immediate answers or solutions. Seeking care from health care providers to develop a personalized medical management plan is crucial. Support groups and resources are available to help patients and caregivers cope with the long-term effects of COVID-19.
“Long COVID patients can also consider enrolling in clinical trials,” says Dr. Goldman. “There are well-designed trials coming online that have a potential to benefit people if the intervention works, and by participating in studies patients can contribute to the greater good as we work to better understand and support patients who are living with this condition.”
One such trial is the RECOVER-VITAL trial, which is studying whether the antiviral drug Paxlovid, used to treat mild-to-moderate COVID infections, can be used to treat long COVID, too.
“We also want patients with long COVID to know that we hear you, we know what you’ve been dealing with, and are going through even to get a diagnosis,” says Dr. Goldman. “We believe you, and we know that long COVID is impacting your quality of life.”
Preventing long COVID
The most effective way to prevent long COVID is to protect yourself and others from the COVID-19 virus. This includes staying up to date on the COVID-19 vaccination, getting tested when necessary and seeking recommended treatment if you do get sick with COVID-19. If you are a Swedish patient and you are experiencing long COVID symptoms, see your primary care doctor.
Learn more and find a practitioner
Whether you require an in-person visit or want to consult a doctor virtually, you have options. Contact Swedish Primary Care to schedule an appointment with a primary care provider. You can also connect virtually with your provider to review your symptoms, provide instruction and follow up as needed. And with Swedish ExpressCare Virtual you can receive treatment in minutes for common conditions such as colds, flu, urinary tract infections, and more. You can use our provider directory to find a specialist or primary care physician near you.
This information is not intended as a substitute for professional medical care. Always follow your health care professional’s instructions.