What You Should Know about Long-Haul Covid

Bit by bit, we’re learning the Greek alphabet. For the last few years, the World Health Organization has named new COVID-19 variants for Greek letters—alpha, beta, delta, and so on.

It seemed unimaginable we’d be halfway through the alphabet (skipping nu and xi), but we are. For some with long-haul Covid, the passage of time is all too real.

Let’s look at what long-haul Covid is, who gets it, its symptoms from head to toe, the prognosis, and steps to prevent it. We’ll also look at treatment and how to find the lowest prescription prices or over-the-counter medication prices.

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What is long-haul Covid?

Long-haul Covid is a constellation of your health problems after infection with COVID-19 (coronavirus disease 2019). COVID-19 is technically a SARS-CoV-2 virus. SARS-CoV-2 stands for severe acute respiratory syndrome coronavirus 2. (Now you know why we'll continue calling it COVID-19.)

All new variants of Covid-19—alpha, beta, delta, omicron—can cause long-haul Covid.

Long-haul Covid has a few other names: long Covid, post-acute COVID-19, chronic Covid, and post-acute Covid syndrome.

The Centers for Disease Control and Prevention (CDC) says you have long-haul Covid if after four or more weeks you:

• Still have the original symptoms of your COVID-19 infection or
• Have symptoms that come and go
• Develop new symptoms

You must also have clinical evidence of the disease.

Causes of long-haul Covid

What causes long-haul Covid in one person may not be what causes it in another. Research is ongoing, but the leading ideas on the causes of long-haul Covid are:

• Tiny blood clots that plug up blood vessels cause brain, lung, heart, and kidney problems
• Lingering Covid viruses that park in the brain, lungs, gut, and muscle and re-emerge causing symptoms of long-haul Covid
• Your body attacking normal cells or overreacting when removing the virus

A combination of any or all three may be the cause, too. Studies continue to look for causes.

Who gets long-haul Covid?

Anything that increases your risk of getting Covid will increase the chance you get long-haul Covid. This includes:

• Being unvaccinated
• Having chronic health conditions
• Not having access to medical care

Anywhere from 10 to 30% of people who get a COVID-19 infection will end up with long-haul Covid. Six out of ten people with long-haul Covid are women. People of advanced age and active smokers are at a higher risk, too.

Long-haul Covid is more common in people with severe Covid infections, but even people with very mild or no symptoms with the original infection can get long-haul Covid. You may not realize you’ve had Covid until you have long-haul symptoms.

Long-haul Covid in minority groups

Different minority groups may be more susceptible as well. Native Americans and Alaska Natives are three times more likely to be hospitalized for health issues related to an initial COVID-19 infection. Blacks, African Americans, Hispanics, and Latinos are more than twice as likely to need care in a hospital due to an acute COVID-19 infection than White people.

Whether racial differences increase the chances of long-haul Covid is unknown. Still, the National Institutes of Health is actively seeking people of all races and ethnicities to participate in their studies on long-haul Covid. The study is called RECOVER—Researching Covid to Enhance Recovery.

Symptoms of long-haul Covid from head to toe

Long-haul Covid symptoms are different for everyone and can affect you from head to toe. Although people with long-haul Covid have reported over 200 different symptoms, these are the most common:

• Brain fog—trouble thinking, making decisions, remembering
• Mood swings
• Post-traumatic stress disorder (PTSD) with anxiety, depression, nightmares, aggression, irritability, etc.
• Headaches
• Dizziness
• Fatigue
• Post-exertional malaise—prolonged fatigue caused by physical or mental activity
• Fever
• Lost sense of smell or taste
• Coughing
• Shortness of breath
• Chest pain
• Rapid or irregular heartbeats
• Stomach pain
• Diarrhea
• Change in the menstrual cycle
• Muscle and joint pain
• Numbness and tingling in your arms, legs, hands, or feet

Brain fog, muscle weakness, joint pain, and PTSD often follow a prolonged hospitalization with the primary Covid infection. These symptoms are particularly apparent after a stay in the intensive care unit.

Multisystem Inflammatory Syndrome in Children and Adults

Long-haul Covid can also stem from your body’s immune response to the initial Covid infection. Your body may go overboard fighting the Covid virus or start attacking itself.

For anyone younger than 21, this process is called Multisystem Inflammatory Syndrome in Children (MIS-C). Not surprisingly, for those 21 and older, it’s called Multisystem Inflammatory Syndrome in Adults (MIS-A).

MIS-C and MIS-A occur days to weeks after the initial COVID-19 infection. Since the immune system is more active in children and young adults, the syndrome is more common in younger people. Fever is a universal symptom of both MIS-C and MIS-A. Other symptoms include:

• Confusion
• Dizziness, passing out, or trouble staying awake
• Bloodshot eyes
• Trouble breathing
• Blue, gray, or pale lips, fingertips, or nail beds
• Chest pressure
• Stomach pain
• Vomiting
• Diarrhea
• Skin rash

If you or your child have been exposed to someone with COVID-19 up to six weeks ago and you notice these symptoms, contact your healthcare provider immediately.

Diagnosing long-haul Covid

No Food and Drug Administration (FDA)-approved blood test currently exists to diagnose long-haul Covid. Having a previous Covid-19 infection, a positive Covid test in the past, or exposure to an infected person plus symptoms of long-haul Covid point to you having the disease.

Your healthcare provider will probably make sure your symptoms aren’t related to an acute COVID-19 infection or a new, non-Covid, medical problem.

You may have blood tests to look for diabetes, kidney disease, an infection, or inflammation. With breathing difficulties, you may have a chest x-ray or lung function test. Your doctor may order an ultrasound looking for blood clots and an echocardiogram (heart ultrasound) and electrocardiogram (ECG) to look for problems with your heart. You may undergo cognitive testing to determine your ability to think and remember.

Treatment options

Currently, there is no FDA-approved treatment for long-haul Covid. The difficulty in finding a treatment lies in the fact that long-haul Covid may have more than one cause. Frustration mounts for those with long-haul Covid, and the wait seems interminable.

Research and drug testing aimed at treating long-haul Covid’s causes are underway, and your participation in studies can help.

Meanwhile, ask your healthcare provider about using over-of-the-counter medications for joint and muscle pains:

• Ibuprofen (Motrin, Aleve)
• Acetaminophen (Tylenol)
• Naproxen (Naprosyn)

Studies with several other medications for long-haul Covid are in the works.

Paxlovid combines two anti-viral medications, nirmatrelvir, and ritonavir, in one tablet. Although not FDA-approved, this medication reduces the severity of Covid-19 infections. Recently, Paxlovid has been used for long-haul Covid with good results.

A report on two patients noted diphenhydramine (Benadryl) effectively reduced symptoms of long-haul Covid. Even though this isn’t a formal study, you may want to discuss taking diphenhydramine with your healthcare provider.

Finally, studies have found that vaccinated people were less likely to develop long-haul Covid than unvaccinated people. Studies also provide evidence that unvaccinated people with long-haul Covid had improved their symptoms after receiving the Covid vaccine.

Getting the lowest prescription price

It doesn’t take long for your out-of-pocket expenses to add up when you have long-haul Covid. You may be taking over-the-counter medications for symptom relief, anti-viral medication, or medications for chronic conditions associated with long-haul Covid (Type II diabetes, insomnia, anxiety, for example).

With ScriptSave^® WellRx, you have several ways to save on over-the-counter and prescription medications. You can compare prescription prices in pharmacies near you. You can clip virtual coupons for medications. You can also print out or receive a free prescription discount card via text or email. Show the discount Rx card at the pharmacy counter for on-the-spot savings.

For more information on how prescription savings cards work, visit WellRx.

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Managing your symptoms

To improve your overall well-being, your healthcare provider will recommend you get plenty of rest, eat a healthy diet, stop smoking, and limit alcohol consumption. You may notice worsening symptoms with certain triggers, such as stress or a poor night’s sleep, and can fine-tune your lifestyle based on your findings.

Support groups and post-Covid care centers can offer advice on the best ways to manage your symptoms and keep you up-to-date on treatment options.

The prognosis

Long-haul Covid takes weeks to months to resolve, perhaps even years. Some people will make a complete or nearly complete recovery. Others will develop chronic health conditions after long-haul Covid, including diabetes, heart disease, and nervous system disease.

You may be protected under the American Disabilities Act if you have one or more symptoms that limit your activities.

Preventing long-haul Covid

Protecting yourself against Covid is the mainstay in preventing long-haul Covid. If you’ve chosen to be vaccinated and received boosters, your chance of getting a Covid-19 infection and long-haul Covid is reduced.

If you are unable or have chosen not to get vaccinated, you may lessen your chance of getting COVID-19 and long-haul Covid by:

• Avoiding anyone with a suspected or known COVID-19 infection
• Social distancing
• Avoiding crowded or poorly ventilated spaces
• Thoroughly washing your hands or using hand sanitizer containing at least 60% alcohol
• Wearing a mask over your nose and mouth

Teresa Otto, MD, is a freelance medical writer on a mission to inform readers about the positive impact of good nutrition and a healthy lifestyle. She is a retired anesthesiologist who practiced in Billings, Montana, for most of her career. She graduated from the University of Washington School of Medicine in Seattle and did her anesthesia residency and fellowship at New York University and Columbia-Presbyterian in New York.

Resources:

1. https://www.who.int/en/activities/tracking-SARS-CoV-2-variants/
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7. https://ukhsa.koha-ptfs.co.uk/cgi-bin/koha/opac-retrieve-file.pl?id=fe4f10cd3cd509fe045ad4f72ae0dfff
8. https://recovercovid.org/long-covid
9. https://www.cdc.gov/mis/about.html
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11. https://www.cdc.gov/me-cfs/healthcare-providers/clinical-care-patients-mecfs/treating-most-disruptive-symptoms.html#:~:text=Post-exertional%20malaise%20%28PEM%29%20is%20the%20worsening%20of%20symptoms,and%20illness%20relapses%20by%20balancing%20rest%20and%20activity.
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13. https://www.hhs.gov/civil-rights/for-providers/civil-rights-covid19/guidance-long-covid-disability/index.html#:~:text=Can%20long%20COVID%20be%20a,or%20more%20major%20life%20activities.
14. https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick/prevention.html