Maybe you thought you had COVID and never got tested because they weren’t available or accessible at the time. Or perhaps you brushed off initial symptoms as allergies, the common cold, or seasonal flu. Due to a variety of factors, there are many COVID survivors out there whose initial infections were never confirmed. And, unfortunately, many of them are still suffering health complications as a result.
Long hauler syndrome, formally known as Post-acute COVID syndrome (PACS), consists of men, women, and other gender identities of all ages who are still experiencing symptoms several weeks to months after their initial infections. Denyse Lutchmansingh, MD, clinical lead of the Post-Covid-19 Recovery Program at Yale Medicine, explains that while “symptom complexes vary from person-to-person” there are a few in particular to look out for. Read on to see what they are—and to ensure your health and the health of others, don’t miss these Sure Signs You’ve Already Had Coronavirus.
Shortness of breath is one of the most identifiable symptoms of an initial COVID-19 infection. And, Dr. Lutchmansingh points out, it is also one that continues on for long haulers. John Hopkins Medicine explains that shortness of breath is when you feel like you can’t get enough air or your chest is tight. With post-acute COVID syndrome, it can happen at any time, even while laying in bed or sitting on the couch.
Another common symptom of both COVID-19 and Post-acute COVID syndrome is fatigue, according to Dr. Lutchmansingh. According to one recent long hauler study, this type of extreme exhaustion is the most common reported by the group, experienced by 58 percent. “It is present even after 100 days of the first symptom of acute COVID-19,” the researchers explained. The symptoms observed in post-COVID-19 patients resemble chronic fatigue syndrome (CFS), “which includes the presence of severe incapacitating fatigue, pain, neurocognitive disability, compromised sleep, symptoms suggestive of autonomic dysfunction, and worsening of global symptoms following minor increases in physical and/or cognitive activity,” they explain.
Many long haulers experience “exercise intolerance,” per Dr. Lutchmansingh. These first three “are the most commonly reported and present significant obstacles to resuming usual activities,” she explains. This condition is also called polypnea, and the same survey reported that one out of five long haulers experience difficulty breathing after exertion.
Dr. Lutchmansingh points out that “Post-acute COVID syndrome symptoms are multisystemic and often include cardiovascular symptoms.” One of the most prominent is chest pain, experienced by 16 percent of long haulers per the survey. According to the Mayo Clinic, sudden, sharp chest pains—aka pleurisy—may indicate that the lung walls are inflamed. This can signal pneumonia or other types of infection.
Another cardiovascular symptom of long hauler syndrome is heart palpitations, reveals Dr. Lutchmansingh. The Mayo Clinic describes them as “feelings of having a fast-beating, fluttering or pounding heart.” Per the survey 11 percent of long haulers experience heart palpitations “Stress, exercise, medication or, rarely, a medical condition can trigger them,” they explain.
There are also a number of neurological symptoms that long haulers report. Dr. Lutchmansingh specifies that having trouble remembering is one of the biggest complaints.
Another neurological sign you might have already had COVID is if you are struggling to come up with the right words. The Mayo Clinic explains that the medical term for this is Aphasia, a condition that robs you of the ability to communicate. “It can affect your ability to speak, write and understand language, both verbal and written,” they write. While it typically occurs suddenly after a stroke or head injury, “it can also come on gradually from a slow-growing brain tumor or a disease that causes progressive, permanent damage (degenerative).”
If you are stuttering more than usual it could be a neurological manifestation of Post-acute COVID syndrome, says Dr. Lutchmansingh. Many long haulers report developing a new stutter.
Dr. Lutchmansingh highlights another neurological symptom present in both initial COVID-19 infections and Post-acute COVID syndrome: altered sense of taste and smell. According to some studies, some people still struggle with these senses several months after their initial infections.
If you are suffering from any of the above symptoms and believe you might be a long hauler, contact your primary care physician immediately. Keep in mind that many MDs still aren’t educated about Post-acute COVID syndrome, and you might have to advocate for your health. There are also post COVID clinics popping up around the country, staffed with specialists, so if your regular doctor won’t treat you, consider reaching out to those. Additionally, many long haulers have found solutions in online support groups, like Survivor Corps on Facebook, a group of over 153,000 people who identify as long haulers. And to get through this pandemic at your healthiest, don’t miss these 35 Places You’re Most Likely to Catch COVID.