Long COVID — i.e. instances of lingering symptoms from the virus — has been an aspect of COVID-19 that has puzzled and concerned doctors throughout the pandemic. And, with a laundry list of potential symptoms, it's to be expected that there are still so many unanswered questions about this condition. Now, a new scientific review shares insight into symptoms that people with long COVID are experiencing, including internal vibrations and buzzing sensations.
The review, which is pre-print and not peer-reviewed, details the symptoms of hundreds of people with long COVID who described having "vibrations and tremors" since testing positive for COVID-19. The review's researchers partnered with Survivor Corps, a grassroots COVID-19 patient advocacy group, to collect 140 emails and 450 Facebook comments from people who reported experiencing these symptoms.
The paper features some of the comments, and they're intense. "Sometimes my entire body feels like it's humming and trembling," one person wrote. "It's like I'm sitting on a huge speaker with the volume all the way up. Through the progression of the last few months, the complete body humming has slowed down, but still happens 5-8 times a month."
Another patient said they started feeling "internal vibrations" about three weeks after contracting COVID-19. "They started in my back and back of upper thighs," they wrote. "It felt like I was sitting on a vibration massage chair. They never went away but would vary in intensity. February 2021 I started having restless left arm at bedtime where my left arm would flap until I fell asleep. On [May 2021] it progressed to full body myoclonic movements lasting up to 30 minutes." (Myoclonic is a word used to describe quick, involuntary muscle jerks, according to the Mayo Clinic).
Some people also described having severe pain from these vibrations. "That week of unrelieved spasms [left] my body barely able to move. Like paralyzed," one person wrote. "I had three natural child births. I could not fake such 10/10 pain. I have never felt such intense pain, I thought my back would break and my right arm would be completely dislocated twisted out of socket." (Related: How Common Are the Long-Term Effects of COVID-19?)
Study co-author Harlan Krumholz, M.D., a cardiologist and professor of medicine at the Yale School of Medicine, says he and his fellow researchers decided to study these vibrations after Heidi Ferrer, a TV and film writer who experienced tremors after having COVID-19, died by suicide in May 2021. "It seems clear that there are a large group of people who are having these long-term symptoms after having been infected who are defying any pattern we've seen before and don't fit into any clear diagnosis that's been established," says Dr. Krumholz. "We needed to listen to them and try to organize the comments that they had."
These patients' "lives have been unraveled," says Dr. Krumholz. Many are now "terribly disabled" and "living through the most intensely difficult periods of their lives," he says. "They're seeking answers that don't currently exist," he continues. "We wanted to try to step in and see if we can help."
What is long COVID, again?
Long COVID, aka post-COVID conditions, is a term used to describe a wide range of new, returning, or ongoing health problems people can have four or more weeks after they were first infected with COVID-19, according to the Centers for Disease Control and Prevention (CDC). Symptoms of post-COVID conditions can vary, but they include difficulty breathing, fatigue, brain fog, cough, chest or stomach pain, or headaches, among other issues, according to the CDC. Worth noting, Post-COVID conditions is now considered a disability under the Americans with Disabilities Act.
Long COVID can be difficult to diagnosis, says Thomas Russo, M.D., professor and chief of infectious disease at the University at Buffalo in New York. "It's a diagnosis of exclusion," he says. Meaning, doctors are encouraged to test patients for a range of other health conditions to try to rule out other causes for their symptoms. "With all of long COVID symptoms, it's crucial to make sure that something else is not going on," says Dr. Russo.
Why are some people with long COVID having tremors and vibrations?
It's unclear why tremors may be a longterm effect of COVID-19, but there are a few theories, according to Dr. Krumholz. "One is that these people were never able to rid their bodies of that virus and maybe it's still causing mischief," he says. "Despite the fact that the acute, early period is over, it's continuing to cause damage." Another possible reason is that "over-exuberance of the immune system" is causing "friendly fire damage" that continues to cause these sensations, he says. (Related: Half of COVID-19 Patients Experience Lingering Symptoms for Six Months, Says Study)
The tremors and vibrations are "likely due to inflammation that is affecting the nervous system that may occur in a small amount of patients," says Amesh Adalja, M.D., a senior scholar at the Johns Hopkins Center for Health Security. This can happen with other viruses, including west Nile virus, Dr. Adalja says, but it's not common with respiratory infections.
Amit Sachdev, M.D., medical director in the department of neurology at Michigan State University, also cites inflammation as the reason for the tremors, noting that it can cause something that's called small fiber neuropathy where the smallest nerve endings in the skin become damaged or irritated. "In COVID-19, there are situations where the inflammation that the infection has brought on to the body causes these nerve endings to be damaged, and people will have tingly, vibrations, numbness, and many other body-wide sensations," he says. "I've seen about 150 of these cases."
Ultimately, though, no one really knows the cause of these sensations at this point, says Dr. Krumholz. "The people experiencing this are the real experts in this disease," he says. "They are the ones who are living with it day to day."
What kind of treatment is available for this?
Finding a way to treat the symptom may prove tricky. To find an effective treatment, it's often important to first understand what's behind a condition, says William Schaffner, M.D., an infectious disease specialist and professor at the Vanderbilt University School of Medicine. "Long COVID is real, but researchers are still trying to figure out how it is that a virus can cause these long-standing symptoms," he says. "It's not easy to investigate."
There's not really an obvious specialist in the medical system for these patients to see, says Dr. Krumholz. "Their symptoms aren't clearly neurologic, rheumatologic, or cardiovascular," he says. "These patients are too often dismissed because no one has ever seen this before." (Related: What Should You Do If You Have Asymptomatic COVID-19?)
Dr. Sachdev says he's noticed that patients he's seen with these sensations often get better with time. "These nerve endings are very sensitive to being injured due to inflammation but often can repair themselves," he says. "By six months to a year, a lot of patients are better." For people who are feeling sensations near the surface of their skin, he has recommended creams containing 1% lidocaine or capsaicin. "This prevents the skin nerves from creating sensations," he says.
For those who are experiencing deeper vibrations, Dr. Sachdev has recommended oral medications "that work on the brain," including gabapentin or duloxetine. "These sort of medications are often used for neuropathic pain," he says.
Dr. Krumholz and his research team are now working to try to create a community of people who are experiencing similar symptoms and analyze their immune systems for evidence of any abnormalities. Ultimately, though, Dr. Krumholz wants to get the word out that people are suffering with these symptoms, he says. "It's helpful for people who have this to know that they're not alone."