Hope for COVID Long-Haulers

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COVID-19 "long-haulers" (the term given to patients suffering long past their acute illness with significant and lingering symptoms) are feeling lost right now. Sufferers often believe there are no guidelines to follow, no treatments proven to help, and ultimately little that can be done to restore lost functioning.

Fortunately, we now know that this is not the case. It is well-established that other viral conditions—with similar symptom profiles—have benefited from targeted rehabilitation and a bio-psycho-social approach to treatment. And now, this approach is being used with COVID-19 long-haulers.

For many years, rehabilitation hospitals have helped people recover from serious viral, bacterial, and autoimmune conditions, such as SARS, Guillain-Barré syndrome, West Nile virus, and Lyme disease. Each of these conditions can leave patients with a constellation of symptoms—and no two patients are alike. Some have cognitive impairments, others respiratory difficulties, while still others experience insomnia, fatigue, and muscle weakness. Those suffering from COVID-19 complications are similar—no two individuals are the same.

The Rehabilitation Approach

The varying symptoms that long-haulers exhibit are sometimes viewed as barriers to successful treatment. This makes the comprehensive nature of rehabilitation a particularly good fit; physical therapy, occupational therapy, speech therapy, psychological services, rehabilitation medicine, neuropsychological rehab, respiratory therapy, and recreational therapy cover many areas of recovery potential.

What's more, treating each person as an individual—with unique backgrounds, symptom presentation, and strengths—is fundamental to rehabilitation. Therefore, having varied or unusual symptoms is not a problem; it's expected.

Unfortunately, when COVID-19 long-haulers only utilize the standard medical model of treatment, recovery of function is not emphasized or even addressed. Rather, to treat symptoms of dysfunction for these patients, medications such as opioids and benzodiazepines are being prescribed at ever-increasing rates. This often provides little to no benefit to the patient’s recovery and, what's worse, greatly increases the risk of addiction, dependence, and overdose.

Evidence-based programs that outline exactly how best to treat those with COVID-19 complications are not yet available. Yet, rehabilitation programs like those at the Mary Free Bed Rehabilitation Hospital in Michigan have been tackling challenging recovery cases for years. Gleaned from these experiences, the same effective recovery principles are now being applied to COVID-19 long-haulers with success.

Finding What Works

There are two fundamental principles of rehabilitation. First, rehabilitation services need to be targeted to very specific physical and cognitive deficits. By focusing on lost mental or physical function, new skills and abilities can be taught, practiced, and permanently recovered. This includes recovering from brain fog, confusion, dysautonomia, dizziness, tremors, and lost muscle strength and control.

The second key principle of rehabilitation is carefully considering all biological, social, and psychological factors that might contribute to a person’s impairment. By examining how a person thinks, responds to life challenges, interacts with others, and faces their physical health crisis, strategies to help people become emotionally and physically stronger can be found. Skills can be learned to help foster the mind-body connection, build better support, and calm down overactive nervous systems.

Learn Lessons From Chronic Pain

One common problem seen in long-haulers is very similar to individuals with chronic pain: the tendency to reduce activity as a means of coping. I call this response to discomfort the "protection cycle." Here’s how the protection cycle works:

1. Our brain cautions us to stop. Because of discomfort, confusion, fatigue, and pain, we hear our brain telling us to sit or lie down and be still.
2. The reduction of activity leads to deconditioning. Once we spend significant time in bed, on the couch, or in the reclining chair, we rapidly lose muscle tone, flexibility, strength, range of motion, and stability.
3. Deconditioning makes movement uncomfortable. Deconditioning can begin in as little as a few days; lengthening periods of inactivity quickly make everyday activities difficult. Walking up a flight of stairs, vacuuming, and grocery shopping become exhausting.
4. Deconditioning leads to muscle and nervous system dysfunction as well as cardiovascular system weakness. Atrophying muscles will complain—loudly—when they are used. Spasms, cramps, twitches, and electric-shock sensations are felt when trying to carry on even simple movements. What's more, being in a horizontal or reclined position weakens the cardiovascular system and challenges blood pressure regulation, leading to dizziness—further impeding movement.
5. Joints, ligaments, and tendons become stiff. Without regular motion and conditioning, blood flow is reduced throughout the body, and the health of joints and connective tissue suffers. This leads to increased pain, even when a person is not physically active. Even simple movements become uncomfortable, further trapping a person in the protection cycle.

If you are a long-hauler, consider being your own health care advocate! Build a medical team that supports the rehabilitation process. Targeting your specific symptoms and finding the right type of practitioners—therapists, medical doctors, psychologists, and nutritionists—will set you on a path toward health and steer you away from dysfunction.

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Don’t underestimate the impact that stress-related anxiety and depression can have on your physical condition. Talk with a mental health professional about the pressure you are under and how you can manage it effectively. Focus on the functions you long to recover and then never stop working toward regaining what you have lost.

Remember—your brain prepares for what is anticipated. Anticipating a good future will get you halfway there.