Long-term effects of COVID-19 appear in people who recover from the disease only to be saddled with lingering, often mysterious physical symptoms. These “long haulers” are people struggling with long COVID, defined by the CDC as symptoms people experience four weeks or longer after the original viral infection.

Many long COVID patients face an array of physical challenges encompassing chronic fatigue; shortness of breath; brain fog; and nerve, joint and muscle pain, just to name a few. These are often tied to mental health challenges, including anxiety, depression, mood disorders, and post-traumatic stress disorder (PTSD).

Patients battling the physical and emotional toll of long COVID benefit from multidisciplinary care, which is available at the UCHealth Post-COVID Clinic. As part of an ongoing series on long COVID and its treatments, UCHealth Today spoke with Dr. William Niehaus, assistant professor of Physical Medicine and Rehabilitation at the University of Colorado School of Medicine. Niehaus treats long COVID patients at the UCHealth Rehabilitation Unit – University of Colorado Hospital.

In addition to patients who had lengthy ICU stays, are you seeing patients with long COVID who had only moderate or mild symptoms but need physical rehabilitation?

Yes. “We have had patients who did not need ICU care, but still need oxygen, have shortness of breath and are weaker because of deconditioning,” Niehaus said.

What are the most common long COVID physical challenges you treat?

“The biggest issue is fatigue,” Niehaus said. That includes loss of strength and stamina and cognitive decline. “People feel like the tank is empty all the time,” he said.

How do you help long COVID patients handle their fatigue productively?

Niehaus said he tries to “empower” patients to “take control” of their situation. For example, he asks them to think of their daily energy level as they would a battery. “They have total control over how that battery gets spent,” he said.

For example, a patient may set a return to walking regularly as a top commitment, or “anchor goal,” Niehaus said. But making that effort may be very taxing and leave the patient without the energy to do anything else. The key, he said, is to recognize the toll it takes and plan accordingly.

“Even an hour of walking might drain that battery for the whole day,” Niehaus said. “The patient just has to be conscious that they are doing that. So if you plan to go to the doctor or talk to a friend you haven’t seen in a while, it might not be the best idea to do that walking or an aggressive strength-building routine.”

Are physical medicine and rehabilitation specialists and other providers developing specific strategies for helping long COVID patients with chronic fatigue?

Yes. Niehaus co-authored a “consensus guidance statement” that offers guidelines for treatment of chronic fatigue. For example, the authors encourage providers to address its underlying sources, like inadequate sleep and nutrition; infectious and autoimmune diseases; and heart, lung and nerve disorders. They also recommend developing strategies to help patients return to activity gradually; conserve their energy; eat healthy foods; stay hydrated; and follow, if necessary, a regimen of medications and herbal and vitamin supplements.

Niehaus noted that clinical specialists have also developed multidisciplinary guidelines for treating pulmonary symptoms and cognition problems in long COVID patients. Another that addresses neurological issues is in the works, he added.

Are there other common issues you see in patients with long COVID?

“Yes. Sleep problems and neuropathic [nerve] pain are also challenges,” Niehaus said. Nerve issues also include numbness, tingling and muscle weakness. “Nerve pain is hard to deal with in general,” Niehaus said. “When you combine that with sleep loss and fatigue, people feel like they aren’t getting enough wind in their sails to make progress.”

How do you approach treating these overlapping problems?

Niehaus noted the benefit of working with the UCHealth Post-COVID Clinic, directed by Dr. Sarah Jolley, assistant professor of Pulmonary Sciences & Critical Care Medicine at the University of Colorado School of Medicine. Patients see Jolley and other specialists for lengthy initial visits and receive an individualized treatment plan, based on their health issues.

“It’s nice to have a collaborative approach,” Niehaus said. “It helps the care we provide even more.” For example, he said, a patient struggling with insomnia might get a referral for a sleep study, while another battling nerve pain could get neurodiagnostic tests in conjunction with their physical rehabilitation. This care supplements work by rehabilitation specialists to rebuild lost muscle mass and stamina.

What important lessons have you learned about treating long COVID patients?

For physical challenges, “I try to walk a fine line of providing hope that things will get better while at the same trying to instill some resilience in patients I’m treating because the recovery is not always fast,” Niehaus said.

“The thing I find really helpful is to recognize that patients have clear goals that they want to get back to,” he said. “And that can be anything. The athlete might want to get back into the mountains and start riding their bike again. Or it might be being able to play with their grandkids like they used to.”

A slow recovery can be difficult for patients to accept, Niehaus acknowledged. “Inherently we get locked into only looking forward and being frustrated that we can’t do that thing that we want to be able to do as opposed to actually looking back at where things were when we first got sick. Where were things when I was in the hospital? Where were things when I left the hospital? How have the last few months been? How much ground have I actually made? Inevitably when you reframe it that way, people say, ‘You know, I really have come a long way.’”

Has your understanding of the condition we call long COVID changed since you began treating it?

Yes, but much remains to be learned, Niehaus said. The “general consensus” is that long COVID is a “constellation” of three to five different problems, he said. These encompass pulmonology, cardiology, neurology and endocrinology, as well as physical medicine and rehabilitation. Physical symptoms can also become entangled with mental health issues. Chronic fatigue is a good example of that.

“We don’t know enough to parse all of it out,” Niehaus said. “It’s not clear if some of these problems go together or if they are their own entities. Or are they all one thing? We just don’t know if there are different flavors [of long COVID] that will be helped with this intervention vs. that kind of intervention. We just aren’t there yet.”

What have you learned about the mental toll of living with long COVID?

“After going through COVID-19, a lot of patients are fearful of getting it again,” Niehaus said. “Long haulers specifically don’t want to go through the problems again or make them any worse than they already are. That’s leading to a whole host of other problems, including strains on their personal relationships and family.”

How can you help patients deal with the fears surrounding long COVID?

Niehaus said he doesn’t prescribe anything specifically but rather tries to help patients develop their own plan and explore their options. For example, someone who wants to see their two-year-old grandchild but fears getting reinfected could wear a mask, meet outside or ensure the contact is in a space with good ventilation. If they haven’t done so already, they could consider vaccination.

“I try to be a whiteboard that they draw their own conclusions on,” Niehaus said. “I’m there as a resource to help them along that path toward their decision.”

Are there misconceptions about long COVID that need to be addressed?

Niehaus echoes a theme that often comes up in discussions with providers who treat COVID long haulers. Its range of symptoms, unpredictability and possible connections with other conditions can make the causes of long COVID difficult to uncover. That can lead people – including providers – to question its validity.

“One of the problems I see patients facing is getting buy-in and finding people who are comfortable treating symptoms that may be a bit more diffuse, vague and hard to pinpoint,” Niehaus said. “We don’t have a lot of x-y-z options that will make you get better. Providers may be a bit more guarded in their recommendations.”

The result may be a provider inadvertently suggesting to patients that the problems they feel so acutely are all in the head, Niehaus added. “That doesn’t lead to a good therapeutic relationship or to good outcomes. And it can create distrust in the medical system. Patients need to see providers who take long COVID seriously.”