A few months into the pandemic, researchers learned that some patients—now dubbed “long-haulers”—were reporting that symptoms like shortness of breath, brain fog, diabetes and heart problems that persisted long after they’d tested negative for COVID-19.
When COVID-19 first emerged, doctors identified it as a respiratory virus—one that primarily affects the nose, throat and lungs, causing coughing and shortness of breath. Over time, physicians found that the virus seemed to produce many other symptoms not at all associated with breathing: patients had blood clots; they had diarrhea; their blood sugar was out of control; their blood pressure rose; they were confused.
Then, patients like Amanda, founder of the COVID-19 Long Haulers Discussion Group on Facebook, started reporting that the symptoms of group members continued, or even emerged, long after they tested negative for the disease. Dubbed “long COVID” or “long-hauler syndrome,” researchers are finding more and more patients who experience symptoms for months or even a year after they had recovered from the virus. Many patients had severe cases of the illness, leading to hospital stays, but some didn’t know they had it until the longer-term symptoms emerged.
“I didn’t realize for a while,” says MedShadow reader Margo, who had a severe case of COVID. At first, she thought she had made a full recovery. “It took a while for the odd symptoms to show up. I had long COVID for over a year, just about exactly a year, and I don’t have it anymore.”
Symptoms of long COVID are just as diverse as symptoms of the initial disease. Patients report kidney and heart problems, diabetes, muscle and joint pain, extreme fatigue and brain fog. Some say they have gastrointestinal disorders and dermatological ailments.
Realizing that treating the syndrome would take coordination of many specialist doctors, clinics around the country have brought together teams of physicians at specialized long COVID clinics.
“Since there is no single unifying cause for the variety of symptoms, there is no one specific treatment, and accordingly, we target the treatments based on what symptoms or health effects a particular person has,” says John Baratta, MD, a founder of the COVID Recovery Clinic at the University of North Carolina. “We do see a number of more frequent types of effects, and those often will include fatigue, shortness of breath or discomfort when breathing, cognitive difficulties, which a lot of people call brain fog, headaches, and joint, muscle and nerve pains.”
MedShadow reached out to our readers to talk about some of the most common long COVID symptoms they are experiencing as well as what has helped them and what hasn’t. We’ve also spoken with two physicians who are focused on treating long COVID patients.
Lungs and Heart
Symptoms: Second to your nose and mouth, your lungs are one of the first areas that COVID-19 is likely to affect. Many patients find that their lungs take a long time to heal from the damage the virus causes. “I could barely walk four or five steps, and I had to stop,” says Margo. It’s not as bad as it used to be, but, she adds, “I still get short of breath sooner than I’d like.”
The virus is also known to damage blood vessels and can invade the heart. “Many people with long Covid have heart-rate issues,” says Baratta.
In Feb of 2022, researchers published a study of 150,000 patients in the Veteran’s Affairs database showing that individuals who recovered from Covid were at substantially higher risk for 20 different types of heart disease for at least a year than those who were not infected. The increased risk remained even in patients without other risk factors for cardiovascular disease like obesity or diabetes.
Treatments patients have used: After years of suffering from asthma, Amanda says her usual rescue inhalers didn’t help at all to relieve shortness of breath, following her bout with COVID-19. Eventually, she found that a different type of inhaler helped. “Advair was my game changer,” she adds. Advair contains an airway-relaxing beta-2 agonist commonly used to treat asthma plus a corticosteroid to target inflammation.
Thelma, a MedShadow reader, explains that her pulmonologist told her that her lungs were clear, but did prescribe Symbicort, another type of inhaler that uses two active ingredients to relax airways and reduce inflammation. “I felt it helped some,” she says. “I didn’t notice any side effects.”
What doctors say: David Putrino, PhD, a specialist in rehabilitative medicine at Mount Sinai’s Center for Post-COVID Care, says that for some patients who still have coughs that produce mucus, “We may consider prescribing inhalers.”
If a person is experiencing elevated blood pressure, her doctor might prescribe beta blockers.
Brain Fog, Depression (Neurological)
Symptoms: “[I] don’t remember what all happened this summer. I haven’t driven since May. I can’t tell you how many times I was so dizzy I couldn’t even walk to the bathroom,” says Amanda.
Brain fog is one of the most often cited long-term effects of COVID-19. Some research has found evidence that the virus invades blood vessels in the brain. Depression, anxiety and post-traumatic stress disorder (PTSD) can also emerge after a hospital stay for any reason.
Amanda says one member of her group discovered she had had two small strokes without knowing it. Margo says she spent entire days unable to finish a single sentence. She adds that she has experienced depression and anxiety attacks. “I’d never had them before. It was not fun.”
A study published on March 18, 2022 suggested that patients 65 and older, who had been using certain psychotropic medications were nearly three times as likely as their counterparts who were not prescribed the drugs (24% compared to 9%) to experience post-Covid dementia a year after being hospitalized with the disease. The authors, who used medical records to conduct the study, do not recommend that anyone should stop taking their prescribed psychotropic medications, but rather be aware that their prescriptions could increase their risk of this long-term outcome. Those prescribed antipsychotics, anticonvulsants and mood stabilizers had the highest risk.
Treatments patients have used: Thelma says nothing she tried made much of a difference, though virtual meditation classes may have helped her focus a little bit. Several patients said that after six months to a year, the brain fog finally seems to be lifting on its own.
What doctors say: Baratta has, in some instances, prescribed stimulants like Ritalin to help people with severe brain fog, but, he warns, that these are only useful for a select few patients. He says, “We use medicines as a last resort,” for brain fog. Other long-hauler symptoms might limit the drug options you have. For example, many long COVID patients experience elevated and irregular heart rates and are prescribed beta blockers to slow them down. “The stimulant [Ritalin] could counteract the effect of the beta blocker,” he says.
Putrino says that at his clinic, doctors aren’t prescribing any medication for the cognitive issues. “Although brain fog is one of the longest lasting symptoms,” he says they do see improvement over time with rehabilitation instead.
Caffeine has been used by long haulers to try to increase focus. Putrino tells patients to be very cautious with use of caffeine. “We found that some people need it. Some people need it to increase their energy levels to reduce their levels of fatigue, and they notice an improvement in their cognitive function.” But for others, he adds, “It can trigger a dysautonomic attack [which can lead to fainting or cardiovascular and breathing problems] very, very severely.”
Symptoms: Extreme fatigue is a common complaint after having had COVID-19. Patients report being unable to walk more than a few steps, but it’s not just physical. It often gets worse after both physical and mental activity. “I find that if I’ve invested too much of myself, even if I have been sitting in bed all day, I’ve invested too much [in] one day. I’m probably going to feel it the next,” says Amanda.
Treatments patients have used: In addition to making both physical and mental rest a major priority, Amanda says taking a Hydroxycut supplement made her feel more energetic. She says she gave it a try, knowing “it was crazy,” but now “I can actually get up and function.” She emphasizes the importance of keeping your healthcare providers in the loop about any supplements you try out. “I’ve been talking to researchers about it,” she adds.
MedShadow reader, Anna ended up turning to a community project to help motivate her to get her mind and body moving. She says, “Get involved! I became involved with a clean-up project near our vacation home. . . Involvement keeps one moving and connected to progress.”
What doctors say:
In August, the American Academy of Physical Medicine and Rehabilitation, an organization to which Baratta belongs, published guidelines for managing post-COVID fatigue.
One of the most important things patients do is learn how to conserve their energy. Many patients experience post-exertional malaise. Essentially, if they push themselves mentally or physically, they may find it especially difficult to bounce back. “They’ll have that experience of [the] symptom worsening afterwards,” says Putrino. Engaging in very gradual physical and occupational therapy can help people regain strength and energy.
Baratta emphasizes that it’s also important to rule out any other causes of fatigue, which may or may not be related to COVID recovery. Your physician should do blood and thyroid tests. He or she should assess your sleep as many patients are having difficulty sleeping. “Additionally, we look at mood,” he says. “Depression, for example, can also lead to poor energy.”
Symptoms: Margo and Thelma both described joint and muscle pain. Margo, who had already been diagnosed with arthritis prior to contracting COVID, says, “The aching all over, the pain [affecting] all your joints and muscles…I didn’t realize at the time how bad COVID reacted with the arthritis. It just accelerated.”
Treatments patients have used: For Thelma, yoga, when she had the energy for it, did help lessen some of the muscular pain. For Margo, anything that reduced inflammation seemed to help, at least temporarily. She received cortisone shots and a prescription for meloxicam, a long-acting NSAID. On her own, Margo also tried a supplement, methylsulfonylmethane (MSM), which she says helped “for a while,” but eventually stopped working for her.
What doctors say: Inflammation is thought to be one of the driving factors of long COVID pain, and supplements may play a role in dampening it. Putrino suggests using cannabidiol (CBD) and tetrahydrocannabinol (THC) products may help some patients. “That’s a supplement we’re starting to collect some data around,” says Putrino. “Magnesium is another one that can help with pain or discomfort,” says Baratta. Both doctors urged patients first to discuss any supplements they want to take with their healthcare providers.
“There could be interactions [between supplements and your medicines] or adverse effects from the supplement,” says Baratta. “Secondly, I do have hesitation with supplements because they do not have the same type of regulations as prescribed medications do. And there can be significant variability in the type and quantity of active ingredients.
A Note About Ivermectin
About a year of experiencing long COVID, Margo asked her physician to prescribe ivermectin. After taking the drug, she says, her symptoms rapidly improved. Baratta says that many of his own patients have tried the drug, and that “most have not seen any notable improvements [from it].” He emphasizes that the Food and Drug Administration (FDA), the Centers for Disease Control and Prevention (CDC) and its manufacturer, Merck, do not recommend using the drug to treat long COVID. “At this time, there is not sufficient evidence to show that it is helpful,” he says.
On March 18, 2022, the Wall Street Journal reported that a study of 1400 at-risk individuals demonstrated that taking ivermectin after infection did not impact their outcomes. They were no less likely than patients at a similar level of risk who did not use the drug to end up hospitalized.
Tips for Finding Doctors and Support
Use only a doctor you feel comfortable talking with and who listens.
Margo postponed treatment because her local doctor didn’t appear interested in hearing about her symptoms. “She rolls her eyes when you mention long-haulers,” recounts Margo.
Amanda recommends asking other people with long COVID in support groups or through friends for referrals to doctors who they’ve found helpful. Amanda adds, “Don’t just go look at a list of post-COVID clinics online. Talk with people and ask them, ‘What kind of luck did you have with this doctor?’”
Write Down Your Symptoms
“A lot of times when people come into the clinic and start trying to talk about the symptoms they’re experiencing with long COVID, they can become overwhelmed because there are so many different dimensions of the syndrome,” says Baratta. Plus, brain fog is one of the more common symptoms, and “that can affect the person’s ability to relay this picture of the problem to the provider.” Writing down your symptoms can help ensure you don’t skip over any, and your provider is likely to understand what you’re going through.
Putrino adds that this habit can be useful at any checkup, not just the initial exam. Long COVID symptoms are often “invisible,” meaning that they are “happening in spite of normal-seeming physiological testing.” That means that having a detailed description of symptoms, and even having a good understanding of things that make symptoms better or worse, can go a long way toward helping your physician build you a personalized care management plan.
Try One Thing at a Time
If you sample different supplements or even test out lifestyle changes, try one thing at a time, explains Amanda. That way, you’ll be able to tell what’s helping and what isn’t. “It’s hard to tease out what is genuinely helping versus what might be a placebo effect or just being taken in combination with five or 10 other therapies, and therefore [discover] that something’s working, but we don’t know what,” says Putrino.
Join a Support Group
Along with emotional help, a support group is a great way to get information about healthcare providers in your area and also resources that might be available to help you pay for treatment. “There are a lot of people throughout the country who are experiencing similar symptoms,” says Baratta. “Getting connected with the support groups, such as Survivor Corps, is a good way to find out about resources in your area for long COVID treatment, as well as ways to manage the symptoms, to some degree, on your own at home.”
A Note About Finances
One of the biggest risks of having ong COVID is running out of money, says Amanda, who now lives in a tent at a campsite because she can’t afford a permanent home. Her group has scraped together funds in the past to help patients pay for their medicines, but, she says, some have died while waiting for Medicaid to approve disability payments. Others have had to ration insulin, even when COVID can trigger or exacerbate diabetes. Amanda’s support groups include researchers who moderate discussions in an effort to “do no harm.” Part of that includes removing posts from people trying to sell unproven treatments. She tells MedShadow, “It’s not just the medical harm, there can be very real financial harm.”