Experts Are Learning More About COVID-19 Long Haulers—Here's What They Are Saying

Nearly a year since the world first heard about the novel coronavirus, COVID-19, it seems as if there are still more outstanding questions than confirmed answers.

We still don’t know why some folks remain asymptomatic and others need hospital intervention. We’re still learning about the role of antibodies and T-cells and what all of that means for long-term immunity. We’re still hoping for a vaccine and searching for the right cocktail of medications to treat the sickest among us.

Where it seems the majority of questions remain is with respect to COVID “long haulers,” those folks who were infected with COVID and weeks — and in most cases, months — later are still suffering the effects of this dangerous virus.

Scary Mommy spoke with Dr. Noah Greenspan, DPT, founder of the Pulmonary Wellness Foundation’s COVID Rehab & Recovery Program at H&D Physical Therapy program to understand what we’ve learned about COVID long haulers so far and to make sense of the questions still left unanswered.

There are no finite characteristics that define long haul COVID, other than ongoing illness.

One of the most frightening aspects of COVID and long haul COVID is that there are more things that we don’t know than we do know, according to Dr. Greenspan. “More than any other condition I’ve ever seen in my twenty-eight year career, there’s so much variability from person to person and so much variability in the same person from day to day, even hour to hour, even minute to minute. So it’s so hard to categorize people at this moment.”

The defining characteristic for most patients is simply that the symptoms didn’t go away. He is seeing patients who have been dealing with COVID and the aftereffects of COVID since February—nearly nine months.

Likewise, the patients Dr. Greenspan sees span the range of COVID realities. Those who have the most severe case—requiring hospitalization, for example—are not necessarily those who become long haulers. At his practice, he sees patients who had a bad case of COVID that never went away, patients who had a mild case that then got worse, and also folks who had a mild case with some symptoms, but then developed new and different symptoms as the disease progressed.

More than 100 different symptoms have been linked to long haul COVID.

Grassroots surveys have found that the range of symptoms experienced by COVID long haulers is varied and often affects multiple systems of the body, including the cardiac, respiratory, and neurological systems.

In his practice, Dr. Greenspan has identified the eight symptoms that seem to have the most profound effect on his patients’ lives. They include:

1. Profound, generalized fatigue
2. Difficulty concentrating and/or focusing
3. Light headedness or dizziness due to fluctuating changes in blood pressure
4. Chest pain or chest pressure
5. Racing heart or high heart rate
6. Shortness of breath, whether at rest or while exercising
7. Muscle or body aches
8. Exercise intolerance

Jenny from Boston, a patient of Dr. Greenspan’s and participant in his COVID Bootcamp, gave Scary Mommy a firsthand account of her experience with long haul COVID and exercise intolerance. Prior to becoming infected with COVID, she used her Peloton on average four times a week and walked her dog for about an hour twice a week. Since COVID, even walking half a mile has left her with a racing heartbeat and an inability to get out of bed for the rest of the day. (Good news: she is slowly and surely getting her strength back at Dr. Greenspan’s COVID bootcamp.)

Dr. Greenspan has also seen a significant number of patients with autonomic dysfunction, wherein the nervous system is affected. This can present in a variety of ways, including seizures, tingling, tremors, and unexplained internal vibrations.

Since March, Jenny has experienced a variety of symptoms, including burning sensations in her forearms, one pupil growing larger than the other, splitting headaches, drooping eyelids, GI symptoms, and more. Doctors believe her symptoms are a result of inflammation in the brain stem.

Most of Dr. Greenspan’s patients are women in their 30s, 40s, or 50s.

Unlike with COVID, where older populations tend to be more susceptible to serious illness and to require hospitalization due to COVID than younger patients, and where men tend to fare worse than women, COVID longhaulers tend to be younger women, many with no pre-existing conditions.

The average age of a COVID long hauler, according to Dr. Greenspan, is 43, and 80% of the patients who reach out to him are women.

“COVID is a master of finding your weaknesses and exploiting them,” says Dr. Greenspan.

It’s still unclear exactly what is causing the symptoms of long haul COVID, though it is clear, according to Dr. Greenspan, that it’s an inflammatory condition. Researchers and healthcare officials still don’t know whether the symptoms of long COVID are caused by the disease or by the immune system’s response to the disease.

Dr. Greenspan provided the example of somebody who broke their ankle a decade ago and then became infected with COVID. In long haul COVID, that person may begin to experience sensations similar to the ones they felt a decade earlier.

We may not yet have the diagnostic tests necessary to diagnose long haul COVID.

In May, Jenny visited the ER twice due to low oxygen levels accompanied by shortness of breath and a racing heartbeat. All her diagnostic tests came back normal. Fortunately, for Jenny, the doctors in Boston were aware of how long haul COVID might present.

Many patients have a similar experience to Jenny’s. It’s common for patients with long haul COVID to experience symptoms and yet have normal cardiac and pulmonary diagnostic tests. Dr. Greenspan believes this may be a direct result of the fact that we don’t yet have the diagnostic tests necessary, which isn’t surprising. COVID is like nothing else any of us have yet seen.

Despite all the doom and gloom, Dr. Greenspan emphasizes that there is reason to hope.

For one, long haul COVID is now widely recognized. Patients who need care have resources and doctors to whom they can turn. And two, Dr. Greenspan and his team are beginning to see people heal and get their lives back—maybe not as quickly as they would like, but there is healing.

Answers are coming. Slowly but surely. And there is real reason to believe that long haulers will get better and feel better and begin again to feel like themselves. In the meantime, it’s important for all of us to continue to social distance, wash hands, and wear a mask.

Information about COVID-19 is rapidly changing, and Scary Mommy is committed to providing the most recent data in our coverage. With news being updated so frequently, some of the information in this story may have changed after publication. For this reason, we are encouraging readers to use online resources from local public health departments, the Centers for Disease Control, and the World Health Organization to remain as informed as possible.