How to Manage Long Covid-19 Symptoms and Fatigue
Covid-19 is new, but the ME/CFS community has dealt with long-haul-like symptoms for years. Here’s how they cope.
As the pandemic has progressed, it has become clear that a good chunk of Covid-19 patients suffer symptoms for weeks, even months, after first getting sick. Many of them deal with fatigue, muscle and body aches, difficulty breathing and concentrating, and other issues that make “normal life” feel out of reach.
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While SARS-CoV-2 is new, the problem of long-term symptoms after an infection isn’t. Many in the chronic illness community, particularly those affected by myalgic encephalomyelitis (ME), understand some of what the long-haulers are going through. ME, sometimes referred to as chronic fatigue syndrome, is a complex, multisystemic neuroimmune disease affecting 15 million to 30 million people worldwide. While there’s been increasing speculation about the possibility that some with long Covid-19 will eventually be diagnosed with ME, it’s too soon to know with certainty; many will either slowly recover or have their symptoms rooted in other things, like lung damage, heart damage, or something else.
At the same time, members of the ME community have spent years — for some, decades — honing their skills for conserving energy, improving sleep, and finding hope even through difficult and sometimes debilitating symptoms. I should know, because I’m one of them. While we’re still looking for answers ourselves, given how historically underfunded ME research has been, we do have a few tips to share in the hopes that they help long-haulers find ways to live a more comfortable and functional life as they continue on the slow path to recovery.
Members of the ME community have spent years — for some, decades — honing their skills for conserving energy, improving sleep, and finding hope even through difficult and sometimes debilitating symptoms.
Like people with ME, Covid-19 long-haulers have a “smaller energy window,” says Dayna McCarthy, a rehabilitative medicine physician who helps long-haulers at the Center for Post-Covid Care at Mount Sinai in New York. “It’s a completely different ballgame now.”
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Here are a few ideas for managing it all, sourced from experts, members of the ME community, the Workwell Foundation (a nonprofit group of exercise physiologists who specialize in fatigue-related illnesses), and my own experience.
Managing your energy
In short: Do less than you think you can, and rest more than you think you need. “I wish I had known this sooner. It’s been a game changer for me,” says Kate Eden-King, 46, a communications director in Gloucester, U.K., who has been sick with Covid-19 since mid-March. “In the early months, like many, I had no idea what I was dealing with. Covid did not follow the pattern of any other illness I’d had before. So I didn’t know I was making myself worse by trying to work or exercise and carry on as normal with life.”
The first five months of Eden-King’s illness were a repetitive cycle of doing too much, getting worse, resting, feeling better, and doing too much again. Eventually she discovered “pacing,” a strategy of conserving and better distributing one’s energy. McCarthy confirms: Pacing is a “tool for [long-haulers] to manage their symptoms.”
There are a few elements of pacing. Two are aggressive rest (lying still, eyes closed, and doing nothing, rather than listening to music, watching a movie, or looking at your phone) and preemptive rest (planned rest periods incorporated into your schedule to help prevent symptom flares). “Doing that even for as little as 10 minutes really helps me,” says Eden-King, who schedules regular rest breaks into her day, even if she thinks she feels fine.
“I take exercise off the table. You first have to optimize the energy window your body has right now.”
Heart rate monitoring is also an important part of pacing, since it’s a concrete way to ensure you aren’t pushing yourself too hard. Experts recommend using a chest strap monitor, determining your stabilized resting heart rate, and staying within 15 beats per minute (bpm) of that number to start. If you do any activity and your heart rate doesn’t reset to its normal baseline but instead remains at least 10 bpm higher or lower, “that’s an indication you’ve not recovered. That’s instability,” says Staci Stevens, an exercise physiologist and founder and director of Workwell Foundation. Stevens has served on the Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee and as co-vice president of the International Association of ME/CFS. You can read more about heart rate monitoring, and determining your anaerobic threshold, an important marker of how much energy you’re using, as well as a few other tips and hacks, here:
Advice for Long-Haulers, from the Life-Longers
What the ME community can teach Covid long-haulers
In general, manage your expectations: This is a time to prioritize, keeping only errands and activities that are necessary or uplift your mood and ditching the rest. Delegate what you can, if you have someone to help you. Break up longer activities into smaller units; for example, load the washing machine in the morning, put the clothes in the dryer in the afternoon, then put things away the next day. And if you have a major activity, such as a doctor’s appointment, build in lots of rest both before and after.
McCarthy confirms that finding ways to do what you need to do without pushing yourself is key: “I take exercise off the table. You first have to optimize the energy window your body has right now.”
Cooking and meal preparation
Healthy eating is critical for well-being, but all the shopping, cooking, and cleaning up can be an enormous drain. If you can, have groceries delivered. When they arrive, put the perishables away and leave the rest to put away later, after you rest. Opt for convenience foods: precut veggies, precooked food you can just heat up, easy-to-eat packaged snacks. When possible, spread out food preparation instead of doing it all in one go: Think 10-minute intervals of gathering ingredients, chopping and dicing, measuring, and the like. Use a slow cooker, if you have one, to make larger batches of meals to freeze and eat later. Bring a stool into your kitchen so you can sit while you prepare food, or slice and dice at the table instead of standing at the counter. If you’re using the stove or oven, make sure to set a timer so you can reduce the mental strain of trying to remember when to remove your dish.
If possible, reduce your intake of sugar, processed foods, alcohol, and other food triggers. A generally anti-inflammatory diet with a variety of “rainbow foods” isn’t a bad idea, suggests Nancy Klimas, MD, director of the Institute for Neuro-Immune Medicine at Nova Southeastern University, in a helpful YouTube video about post-Covid-19 care.
Work and communication
If you’re able to take a reduced schedule or leave of absence, you may want to consider it. Either way, have conversations with your manager about expectations and accommodations. “I originally thought that I could work throughout long Covid, because I was mostly sitting at home doing Zooms and emails, but then getting confused about why I was crashing so hard each day,” says Amy Hesse Siniscalchi, 45, a nonprofit executive in New York who has had long Covid-19 for seven months. Whether it be working or just watching TV, reading, or looking at your phone, engaging your brain takes energy.
Patricia F. Anderson, 64, who has been sick with Covid-19 since mid-March, learned this the hard way. It was only three months ago that she finally found her baseline. Balancing the physical and mental load was crucial for her. “If I had a particularly intense mental day, I would not try to do the physical stuff,” says Anderson, an emerging technologies informationist at the University of Michigan’s Taubman Health Sciences Library. “If I have a hard day with a lot of meetings at work, that’s not a day to try to walk around the block.”
This is a time to prioritize, keeping only errands and activities that are necessary or uplift your mood and ditching the rest.
Whether at work or in your personal life, learn to say no—or “not right now”—and learn to say yes to help. Use memory aids like calendars, lists, and Post-it Notes; set alarms on your phone with reminders. Let phone calls go to voicemail; call back when you can, if you must. Put an away message on your email so you feel less pressure to respond quickly.
Comfort, sleep, and hygiene
Ergonomics are extra-important, because the unnecessary muscle tension that comes from poor posture drains energy, said Stevens in a recent webinar about energy management in chronic illness. Consider getting a zero-gravity chair to rest in, bring screens up to eye level, and sleep with a supportive cervical pillow for better neck alignment.
To ensure you get the sleep you need, reduce screen time before bed (and in general), and put filters on your computer and phone to get rid of the blue light, particularly in the evening. (Yes, there are apps for that.) Try a weighted blanket, which can help to calm the nervous system, and lower the temperature in your bedroom.
As you move around your home, keep essentials (phone, charger, lip balm, water, snacks, meds) in a small tote bag so they are always within arm’s reach. Use a laundry hamper on wheels. If your heart rate shoots up when standing, compression stockings are a good way to help prevent blood from pooling in the legs; if you have trouble getting them on and off, try some with zippers. If your home or building has stairs, leave a small chair on each landing, if possible, so you can take breaks as you go up or down.
You may also want to consider a mobility aid, like a cane, scooter (especially at the grocery store), or wheelchair. Don’t like the idea of using a mobility aid? Jazz it up, says Teona Studemire, 23, a writer and college student in Florida who was diagnosed with ME a year ago: Bicycle shops can paint the frame and add colorful tires to wheelchairs.
When it comes to hygiene, skip elaborate routines: Use a shower chair, shower less often, take baths instead, or use water wipes to quickly refresh. Use dry shampoo, wash your hair less often, cut it short, or wash it while seated in the bath or on a shower chair. Brush your teeth in the shower or bath, use an electric toothbrush, or brush your teeth while walking slowly down your hallway — this will help prevent blood from pooling in your legs while you stand still. Don’t shower close to when you eat: Your stomach will need energy and blood flow to digest food, and showering takes energy, and if the water is hot, it will divert that much-needed blood supply to the surface of your skin, Stevens says. Consider using cooler water to help minimize elevated heart rate. And dry off by simply putting on a terry cloth robe instead of using a heavy towel, or get lightweight microfiber towels.
Like too many folks in the ME community, Covid-19 long-haulers have reported discrimination and gaslighting in medical settings.
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Remember that you can ask for a patient advocate to accompany you to doctor appointments. Hospitals always have them available, but you may want to consider hiring an independent advocate. Come to the appointment prepared, suggests David Kaufman, an internal medicine specialist at the Center for Complex Diseases and a member of the U.S. ME/CFS Clinician Coalition who understands how difficult it can be for patients with chronic illness to get doctors to take them seriously. Bring concrete data to your appointment, he says: Do your own at-home lean test to track how your heart rate (and blood pressure, if you have a home monitor) changes, so you can come prepared with specific numbers. Describe your symptoms in clear terms, with concrete examples to demonstrate: When you say “brain fog,” what do you mean? When you say “pain,” what is the quality of the pain, and does it change with position, activity, etc.? Compare current functionality to your pre-Covid-19 status: “Before I used to be able to… Now I can only…”
Of course, coming armed with data doesn’t always get a warm reception from doctors. “The risk is that if you go to a physician with a review of symptoms that’s extremely positive [meaning you have lots of symptoms in lots of categories], most physicians are going to roll their eyes and say, ‘Oh my god, I can’t deal with this,’” says Kaufman. How you present the information can, unfortunately, be important. Keep it succinct and simple: Can you capture the most important data and organize it into bullet points of one sentence each? Can you rate your symptoms on different days with a number scale as a quick snapshot of severity and how it fluctuates? And remember: You don’t have to stick with a doctor who dismisses you.
If you’re part of a marginalized group, you already know experiences with the medical system can be incredibly draining. Prepare for doctor’s appointments by planning ahead how you want to respond to anything racist, sexist, homophobic, or ableist, suggests Jemel Aguilar, 50, an associate professor of social work at Southern Connecticut State University who’s had ME for 20 years. “The easiest thing to say is ‘Thank you for your thoughts,’ and then leave and post your experience on Healthgrades,” he said. “As sick folks, there is no sense arguing with racism, because we have more important things to take care of, like our health.”
And don’t neglect your mental health. Depression and anxiety do not cause long Covid-19, but it is a depressing and anxiety-producing situation. Consider finding a mental health practitioner to work with who understands chronic illness and medical trauma; many such providers are now offering telehealth appointments.
Leisure time and finding joy
Now may not be the time to try to read all the classics or binge-watch the latest highbrow drama. Try to enjoy things you’re already familiar with so you don’t expend mental effort following new plotlines. Reread beloved books and rewatch movies you could quote by heart. Light and easy is good: “I don’t even really like romance novels that much, but my brain can handle that,” Anderson says. “I’m reading lots of mentally lightweight stuff.” If reading text is too difficult, try listening to familiar audiobooks, a podcast, or classical music instead. And remember that if you want to spend your downtime simply resting, that’s okay — it’s what your body and brain need right now.
Remember, too, that you don’t have to figure this all out alone. Join an online Covid-19 support group. Covid-19 is disproportionately affecting communities of color — if you’re in that cohort, seek out BIPOC-specific support groups, Studemire suggests.
Refuse to settle for an existence as opposed to a life.
In general, give yourself permission to rest and heal. There are no “shoulds” right now; you’re allowed to mourn. This is not your fault, reminds Wilhelmina Jenkins, 70, a longtime activist who lives in Atlanta and has been sick with ME since 1983.
“Refuse to settle for an existence as opposed to a life. You are more than your illness. Don’t wait to recover to resume living,” says Maggie McReynolds, 60, a book-writing coach in Colorado who had already been sick with ME for 30 years when she became a Covid-19 long-hauler seven months ago.
“When you can’t go big, go small, go tiny. Find beauty in the view from your bed, in the dust motes dancing in the sunshine, in the sound of a loved one’s voice on the phone. Keep your heart and your mind open when everything conspires to shut you down, including your own thoughts,” McReynolds says.
“Love yourself fiercely. You are still here. You are still you.”