New Guidance Focuses on Neurological Symptoms for Long COVID Patients

Long COVID has disrupted the daily lives of millions of people and even disabled some. A medical society representing physicians and others who work with people with disabilities, the American Academy of Physical Medicine and Rehabilitation, published a guidance statement Tuesday on what clinicians should look out for when screening and treating patients with long COVID, specifically in terms of their neurological conditions. 

The guidance, which is part of a multidisciplinary series on other types of long COVID symptoms, such as fatigue and breathing problems, takes aim at earlier evaluation, diagnosis and management in order to improve outcomes for patients. The authors also lay out some neurological “red flags” that draw an important distinction between common long COVID-19 symptoms like headaches and brain fog, and medical emergencies that require immediate attention. (In addition to “long COVID,” the medical community now sometimes refers to the condition as “post-acute sequelae of SARS-CoV-2 infection,” or PASC for short.) 

The guidance statement from the AAPMR doesn’t appear to break any new major research into medical treatments or completely new symptoms of long COVID that haven’t already been noted by medical organizations like the US Centers for Disease Control and Prevention or research on causes of long COVID outlined in science journals, such as the hefty review published in Nature Reviews Microbiology earlier this year. But the AAPMR statement does call for a careful look into how clinicians and doctors should be screening patients, so as not to brush a serious neurological sign under the rug as a “typical” long COVID symptom. 

It also draws on existing information that there’s no single test for long COVID, and that it depends instead on a holistic view of your health pre- and post-COVID-19.

Sleep problems, headaches and other common neurological symptoms

Research has shown that the neurological and cognitive symptoms of COVID-19 are among the most common patients deal with, and they can affect the way people are able to get through daily life. Some of the common neurological symptoms doctors are still seeing in 2023, outlined in AAPMR guidance statement, are: 

• Impact to cranial nerves (nerves that help you taste, smell, see and more) 
• Headaches 
• Neuropathic pain or neuropathies (numbness, tingling, etc.) 
• Sleep disturbances 
• Muscular pain, weakness and tremors 

In a media briefing Tuesday, physician and co-author in the guidance Dr. Monica Verduzco–Gutierrez called COVID-19 “ignitor fluid” for other things that may have been going on in your body pre-COVID-19. This can be true for sleep disturbances, she said, causing a baseline sleep issue (like trouble falling asleep at night) to become much worse and warrant a sleep study. 

The authors of the guidance note that symptoms of a disrupted sleep cycle overlaps with common cognitive symptoms long COVID patients often report, including having a hard time concentrating or problems with memory. Similar to the other neurological symptoms outlined in the guidance, patients with long COVID or COVID-19 should be given a detailed sleep screening and follow up with the appropriate treatment, some of which is also outlined in the guidance.

Read more: The Stages of Sleep Deprivation and the Warning Signs You Need to Look Out For

Spotting a ‘red flag’ long COVID symptom

Drawling a line between “red flag” long COVID symptoms (which are really symptoms that require immediate medical attention) and common long COVID symptoms is especially important given the vagueness of long COVID as a disease and the prevalence of medical gaslighting among the people who suffer from it.

For example, headaches may be one of the most common neurological symptoms of long COVID patients, but a severe or “thunderclap” headache that comes on suddenly means you should seek medical care immediately.

“Identifying patients with progressive or ominous ‘red flag’ neurological symptoms is essential for emergent triaging,” Dr. Leslie Rydberg, co-author of the guidance statement, said in a news release Tuesday. “These symptoms may be due to long COVID versus another medical condition, but a history and physical examination is essential.” 

Below are a few neurological “red flags” that require attention, according to the guidance. Keep in mind that these are only neurological warning signs, and that you should seek medical care any time something feels concerning or out of the ordinary.

• Progressive weakness: Some people have experienced numbness or tingling from COVID-19, but weakness in your body that’s getting worse (especially if it’s getting worse fast) could be a sign of a stroke or health condition. Strokes are medical emergencies; learn the signs of a stroke here. 
• Sensory changes, like changes to your smell or taste suddenly, can be signs of a stroke and require attention. 
• Impaired bowel or bladder control: Unexplained incontinence, or even constipation, can be a sign something is impacting the brain or spinal cord, per the guidance. 
• Loss of consciousness may mean you’re experiencing a seizure or there’s another cause that requires follow-up. This is different from feelings of fatigue people many people with long COVID experience.
• Hallucinations or reduced awareness are some neuropsychiatric symptoms that require medical attention.
• Extreme headaches that feel like the worst of your life or come on suddenly can signal a problem in the brain. 
• Other symptoms like pathologic reflexes or your pupils dilating suddenly. Unexpected dilated pupils can be a sign of something more serious and you should seek care.