A few months into the pandemic, researchers learned that some patients were reporting that some of their Covid symptoms, like shortness of breath, brain fog, diabetes, and heart problems, persisted long after they’d tested negative for COVID-19. A doctor in Italy was the first to use the term, “long Covid” when she described the disease as cyclical, progressive, and multiphasic.
When COVID-19 first emerged, doctors identified it only 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 which she launched in June 2020, started reporting that the symptoms of group members continued, or even emerged, long after the virus seemed to have left their bodies. Long Haul Covid is probably the first disease identified by patients finding each other through social media.
Researchers are finding more and more patients who experience symptoms for months or even a year after they have recovered from the virus. Many patients had severe cases of the syndrome, leading to hospital stays, but some didn’t know they had Covid 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.
What is Long Covid?
“It took a while for the odd symptoms to show up,” Margo said. “I had long Covid for over a year, just about exactly a year, and I don’t have it anymore.”
Doctors have divided long Covid into three categories:
- people whose symptoms of Covid never fully recovered
- people who have symptoms related to having stayed in a hospital bed for weeks while recovering
- people like Margo, who seemingly recovered from Covid, to find new symptoms emerging later.
Covid symptoms are wide-ranging. Doctors suspect they’re caused by chronic inflammation, newly-triggered autoimmune conditions, and a reactivation of latent virus (which happens with some viruses like Epstein Barr.)
Symptoms of Long Covid are just as diverse as symptoms of the initial disease. Patients have reported hundreds of different symptoms, but some of the most common are:
- kidney and heart problems
- muscle pain
- joint pain
- extreme fatigue
- brain fog
Some say they have gastrointestinal disorders and dermatological ailments.
Treating Long Covid
The symptoms of long Covid affect a variety of body systems requiring multiple specialists for each patient. Responding to this unique problem, 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.”
In addition to medications, Baratta says much of the treatment clinics offer consists of rehabilitation therapies including physical, occupational and speech therapy.
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 to answer some of your most pressing questions about the condition.
This article was originally published in March of 2022, but has been updated with additional experiences and quotes as of January 2023 and additional research as of May 2023.
How Long Does Long COVID Last?
Precise definitions of long COVID vary slightly, but Baratta says, “for patients who are having ongoing health issues or symptoms after more than four weeks, I would encourage them to seek out the care of their primary care provider and have an initial medical workup and evaluation.”
The World Health Organization (WHO) defines long Covid as symptoms that continue for three months or disappear but return three months after your initial infection. If you have a mild or moderate case, acute symptoms typically last one to two weeks.
Anyone can get long Covid, even if you were asymptomatic or had a mild case of the disease. However, those who were not hospitalized during the initial infection are likely to recover from long Covid symptoms within a year, according to a study of Israeli medical records published in November of 2022.
“We’re seeing some patients who had long COVID for multiple years,” Baratta added in 2023, but, “I do still find that the majority of patients that I care for have substantial improvements. And, I still think that is [a result of] a combination of their body’s natural healing ability over time, as well as treatments that can be instituted to manage and reduce symptoms.”
The rates of people who currently report having long Covid are started to decrease, suggesting that many are recovering, according to an analysis published by the Kaiser Family Foundation in January 2023.
Who Is Most Likely to Get Long Covid?
According to the CDC’s Household Pulse surveys, about 15.5% of all adults say they’ve had long Covid as of April 10, 2023. That’s up from 14.8% on March 13, 2023. However, the number of participants who say they still have long Covid has decreased, offering hope that people are recovering over time. In April, 5.7% reported ongoing symptoms, compared to 6.7% in March.
Women and people over the age of 40 were more likely to report Covid symptoms that lasted more than two months, according to an October 2022 study in JAMA. People who had received at least two doses of the vaccine prior to their infections were less likely to report long Covid symptoms. A March 2023 analysis reiterated those findings. In addition to age and gender, people who smoke, who had obesity, or who had been hospitalized prior to infection were also at higher risk of developing long Covid. Being vaccinated reduced the risk, even in people who had other risk factors.
In November, 2022, a large Veterans Affairs study (which has not yet been peer reviewed) found that individuals treated with the antiviral Paxlovid during their infection were less likely to develop long Covid than those who didn’t receive the drug.
Impacts of Long Covid
Lungs and Heart
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.
One MedShadow reader, Sara Anaya, says her heart rate would “jump to 120 while I was just sitting down,” making her feel like she might faint. She also experienced shortness of breath.
In February of 2022, researchers published a study of 150,000 patients in the Veterans 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, a patient named 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 (fluticasone/salmetrol) 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 (budesonide/formoterol), 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.”
Another reader with long Covid impact, Sara, says that taking Pepcid (famotidine) daily has helped with her shortness of breath.
Most often Pepcid and other famotidine drugs are prescribed for stomach ulcers, heartburn or acid indigestion, and GERD (gastroesophageal reflux disease). So why would an antacid help with shortness of breath? Scientists believe Pepcid may help patients by dampening inflammation. High doses of famotidine have been tested in patients who are currently infected and hospitalized with Covid. It seems to reduce recovery time, but trials haven’t yet shown whether or not it can help long Covid.
Sara also changed her diet, cutting out sugar, dairy, and gluten, in hopes of reducing inflammation throughout her body. Three months ago, a new doctor suggested treating her symptoms more aggressively and prescribed her an antiviral HIV medication off-label, an anti-inflammatory drug, and a statin.
“It seems to be helping,” she says of the combination.
What Doctors Say
David Putrino, PhD, a specialist in rehabilitative medicine at Mount Sinai’s Center for Post-COVID Care, said in 2022 that for some patients who still have coughs that produce mucus, “We may consider prescribing inhalers.”
If a person is experiencing elevated blood pressure, a doctor might prescribe beta blockers.
Additionally, some doctors are prescribing heart failure medications. These have been tested in people who have POTS (Postural Orthostatic Tachycardia Syndrome) a syndrome in which your heart rate tends to race when you switch from sitting or lying down to standing up. It can also cause side effects, such as headaches, nausea, and more.
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Brain Fog, Depression (Neurological)
“[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 Facebook Group leader, Amanda.
Brain fog is one of the most often cited long-term effects of COVID-19. Doctors say that people with long Covid need to be screened for new and worsening mental health conditions such as depression, anxiety and PTSD.
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,” said Margo. “It was not fun.”
Two years after her initial infection, Sara says she’s still struggling with brain fog.
“I still can’t give you directions to my house,” she said for example. She sometimes gets flustered and forgets questions she’s trying to answer.
Some of Sara’s other neurological symptoms have improved with time. For example, she also experienced chorea, a disorder in which you start moving your arms and legs involuntarily.
“My arms would do these crazy dance-like movements and my legs too,” said Sara. “My kids would say that I would look like those blowup things at the U.S. car dealerships.” Thankfully, she said, that symptom has abated.
Research published in 2021 found evidence that the virus invades blood vessels in the brain. Autopsies of people who died with long Covid may help explain why symptoms are so diverse. They’ve shown a variety of different types of damage. Some people had signs of the virus persisting in the brain, others had damage to the blood vessels that carry blood and oxygen throughout the brain, and some had swelling. Animal studies suggest that long Covid may involve damage to the myelin sheaths that surround neuronal connections like insulation around a wire. This type of damage slows communication between brain cells.
Antipsychotics, Anticonvulsants, and Mood Stabilizers
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 of that study, which analyzed medical records, do not recommend that anyone should stop taking their prescribed psychotropic medications, but rather be aware that their prescriptions could increase their risk of these long-term negative outcomes. 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 better. Several patients said that, after six months to a year, the brain fog finally seems to be lifting on its own.
At one point, Sara’s chorea was so bad that she couldn’t stop moving her arms and legs. She was on vacation but had to go to the emergency room.
“They gave me an IV with Benadryl, and it stopped,” she says. For her fatigue, she says glutathione, an antioxidant supplement, has been helpful.
What Doctors Say
In early 2022, doctors said that they had few treatments for brain fog. Putrino said then that, at his clinic, doctors weren’t prescribing any medication for cognitive issues.
“Although brain fog is one of the longest lasting symptoms,” he said they do see improvement over time with rehabilitation instead of medications.
While Baratta said his clinic might occasionally prescribe Ritalin (methylphenidate) or recommend caffeine, they mostly just waited for people’s concentration and focus to improve over time, as well.
Baratta warns that stimulants like Ritalin 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, too. 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,” Baratta says.
When MedShadow spoke with Baratta again in 2023, he told us he has found that speech therapy has been particularly helpful for patients with brain fog. He also says the clinic has started using low-dose naltrexone to treat both chronic pain and brain fog in some patients. Over the past decade or so, doctors have started prescribing low doses of the drug off-label to treat inflammatory autoimmune diseases, obesity, and more conditions.
One of those off-label uses for long Covid patients is treating chronic pain, but, he says, “it also seems to potentially be beneficial for brain fog and fatigue.” A small study on the side effects of low-dose naltrexone found that nearly 40% had no side effects. The same amount (41%) had neurological complaints such as headaches and fatigue, and 26% had gastrointestinal side effects such as nausea and vomiting. The side effects cleared up quickly in a third of those experiencing them, but 27% stopped using naltrexone because the side effects were too severe. Higher doses of the drug have a wide range of side effects and can cause liver damage and nausea.
Caffeine has been used by long Covid patients to try to increase focus. Putrino tells patients to be very cautious with use of caffeine.
“We found that 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.”
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Extreme fatigue is a common complaint after having had COVID-19. Patients report being unable to walk more than a few steps. The exhaustion 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.
“It was not just being tired,” said Sara. “It was like having sandbags on top of you, and like there is a magnet that is pulling you to your bed. You cannot pull your head from the pillow.”
Treatments Patients Have Used
In addition to making both physical and mental rest a major priority, Amanda says taking a Hydroxycut supplement, typically used for weight loss, 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.
[Editor’s note: Hydroxycut is a supplement not required to be reviewed or approved by the FDA. It contains high amounts of caffeine (more than two cups of coffee), and ingredients thought to reduce anxiety and lower pain.]
One of Sara’s most debilitating symptoms is difficulty walking. Her doctors suggested she try physical therapy, but that “put me back in bed for days,” she says.
The post-exertional fatigue outweighed any positive effects the physical therapy may have had. Her doctors also prescribed Luvox (fluvoxamine), an antidepressant, but she says that gave her flu-like symptoms. Time has helped, and today she can take walks, as long as they aren’t too long or strenuous.
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
One of the most important things patients can 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.”
In 2023, he added that “many people meet the criteria for ME/CFS (myalgic encephalomyelitis chronic fatigue syndrome) a separate but related disorder.”
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.
Patients in certain states may not have an option for medical marijuana, which commonly contains both CBD and THC. Other states, that have not approved the medical use of marijuana, often still allow CBD products to be sold, as they do not contain THC. For more information on your state’s regulations and requirements for such a treatment, visit this Pro/Con.org map.
“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.”
In early 2023, Baratta says that he’s found that anti-inflammatories such as NSAIDs and corticosteroids can be helpful for long COVID pain, but typically the effect wears off after time.
“They only provide a temporary benefit and not long-lasting relief,” he says. He’s started prescribing low-dose naltrexone to treat chronic pain in some of his patients.
Over the past decade or so, doctors have been prescribing low doses of the drug (which, in higher doses is used to treat substance use disorders) to treat inflammatory autoimmune diseases, obesity and more. As previously noted, about 40% of those taking low-dose naltrexone had no side effects (see Brain Fog, Depression, above, for more detail), but higher doses of the drug can cause liver damage and nausea.
What Research is Being Done on Long Covid?
Scientists have come a long way in understanding how long Covid affects the entire body, but there’s still a lot to learn, especially about which treatments can help patients. The NIH has launched its RECOVER initiative, a group of studies aimed at finding solutions for long Covid patients. The trials take place at various sites across the U.S., and have enrolled over 10,000 adults, 1,200 of whom are pregnant and more than 2,000 that are children. Learn more about the research here.
“I’m excited about the NIH RECOVER trial, which is just beginning. Hopefully later this year, in 2023, we’ll have the results of the trial and some actionable plan on whether or not it is reasonable to move forward with medicines like Paxlovid for the treatment of lung COVID,” says Baratta.
When Can I Start Exercising After Covid?
At this point, Sara says she can walk short distances and has the energy for work and daily activities, but that walking long distances or partaking in more athletic endeavors is not yet something she can do.
Experts say that after Covid, you should ease back into any physical activity very slowly, even if your symptoms are gone. Once you’ve fully recovered—and spent a few days resting—consider trying a workout about half the length of what you did before you tested positive.
Gradually build up from there. And if you start to feel chest pain, lightheadedness, shortness of breath (beyond what’s typical during your workout), or irregular heartbeats, you should try to see a cardiologist before continuing to exercise.
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A Note About Ivermectin
After about a year of experiencing long COVID, Margo asked her physician to prescribe ivermectin. After taking the drug, she says, her symptoms rapidly improved. Sara also took ivermectin, though she says it didn’t help.
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 1,400 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. The study, an outcome of the TOGETHER trial, was later published in the New England Journal of Medicine.
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.
Sara’s been to multiple doctors and multiple long Covid clinics. She has found some wonderful doctors, but simultaneously, she says, “I’ve also met a lot of very unhelpful doctors.
“I’ve cried a lot of tears,” said Sara. “There have been a lot of doctors who’ve dismissed my symptoms, who didn’t care to listen or who were too busy to listen.”
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?’
Resources You Can Take to Your Primary Care Physician
Unfortunately, with the massive number of people (up to 7% of adults in the U.S.) currently experiencing long Covid, there are not enough specialists to treat everyone.
“The care will frequently fall to a primary care provider, who I believe can be very well equipped to address many of the common concerns,” says Baratta.
The American Academy of Physical Medicine and Rehabilitation (AAPM&R) has published management guidance for cardiovascular symptoms, breathing problems, fatigue, autonomic dysfunction (which causes symptoms such as dizziness and fainting) and cognitive symptoms. It also offers guidance for treating children. You can print these documents and bring them with you to your physician.
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 long Covid is running out of money, says Amanda, who in 2022 was living 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.
“It’s not just the medical harm,” she tells MedShadow.here can be very real financial harm.”
Despite all the frustrations, Sara advocates for doing your best to remain positive.
“There’s a lot of things that I can no longer do,” she says. “But there’s a lot of things that I can still do. I can still watch a movie with my kids, and I can still sit and drink a cup of tea and talk with a friend. I can focus on the joys of what I can still do.”