This is a question I’ve been asked fairly often throughout the pandemic, as awareness of long COVID increased, and as more people caught COVID. The past few months it’s been coming up more and more often. Now that I’m getting this question sometimes several times in a day, as well as getting lots of questions about pacing and brainfog (3 times in the past 24 hours!!), I’ve decided I really need to collect the resources I most recommend in places where they are easy for people to find and share.
This first post in this new series will focus on what we know or suspect about how to avoid having COVID turn into Long COVID. I’ve been waiting a long time for something official about this, but there isn’t a lot. There’s a lot of news articles, a little bit of research looking at the differences between people who develop Long COVID and those who don’t, and an enormous amount of discussion in the many patient support groups. I made a little infographic, and will discuss the high points in the rest of this post. (NOTE: I’m not this kind of artist, so please be kind, and feel free to make your own. I just did this because I hadn’t found anything else that does this.) FYI, I’m making the infographic open access and open source — make suggestions for updates and changes in comments to this blogpost, but if you want to modify the infographic, make a copy of the Google file. Also, remember, I’m a medical librarian and an emerging trends and technologies informationist, I am not a doctor (#IANAD).
Most Important Tip to Avoid Long COVID
The truth is that there is no way to really avoid getting Long COVID except by not getting COVID-19 in the first place. Everything else is about reducing the risk. So, trust me, you don’t want this, what can you do? Protect yourself, protect others, get vaccinated and mask up. Note also, that being vaccinated helps protect you from dying of COVID-19 or being hospitalized for it, but it doesn’t stop you from getting COVID or from getting Long COVID. It helps to reduce the risk, it is not a guarantee of safety. There is also an assumption in the general public and media that Long COVID mostly happens to “old folk,” but the data seems to show that this happens quite a bit in young folk. Not to mention that if you had COVID once, did not get Long COVID, that doesn’t mean you’re free now. If you catch COVID again (and again), each time you catch it, the risk of developing Long COVID goes up, and up. So, whoever you are, there is nothing that says you can’t get Long COVID.
The Riskiest Time for Triggering Long COVID
To be honest (again), we probably don’t actually know, but what the research articles discuss is usually three months. That may be simply because that’s a time period researchers like to measure. The idea seems to be that some people recover almost completely almost immediately. Other people recover , more slowly, but they do recover. There are different definitions of what counts as Long COVID depending on where you are in the world and who counts as your authority. Here in the USA, the magic line is three months. What this means is that. you can possibly be described as having Long COVID:
- if you had COVID and never got better, OR
- if you had COVID and recovered mostly but some symptoms lingered on, OR
- if you had COVID and recovered, but developed new symptoms and health problems soon afterwards, OR
- if you had COVID and recovered, were fine for a couple months, and then BAM, new health problems happened, OR
- if you aren’t sure if you had COVID and didn’t have a positive test (because you weren’t tested), but had something maybe like it, and after that find that now you are really sick all the time …
It’s messy. It’s complicated. But the simplest way to explain this has two main parts:
- 1. the longer it takes you to recover, the less likely you are to recover fully, and
- 2. right after you first ‘recover’ (as in finish the acute phase of the disease) you’re at the greatest risk of doing more damage to your body.
What to do, Part 1: Radical Rest
This deserves a whole post and a deep dive, so I’m going to keep this simple for now. The single most important thing to do after having COVID is to rest. The phrase is RADICAL REST, because this isn’t as simple as just lay on the couch and watch TV. That’s actually too hard for many people, and will make them more fatigued. Also, different groups use the phrase “radical rest” to mean different things, but for people just starting out it’s probably enough to keep in mind that whatever you think resting is, do more.
Rest extra for the first 3 months after having COVID. Rest lying down, with eyes closed, in a quiet place. Rest whenever you feel tired or fatigued. Rest whenever your symptoms get worse or stronger. If your symptoms went away, and came back that’s especially important to notice, and rest. Rest if you feel weepy or angry or extra emotional. Rest if you have trouble finding the words, remembering things you know. Rest if you feel confused or have brainfog. Rest if you feel anxious, depressed, or stressed. These are all ways your body and mind are telling you to slow down, they need a little extra time to heal. Resting tells your body/mind that you are listening, you are paying attention, it can feel safe and trust you to take good care of yourself while focusing on healing.
REST!!! If you’re lucky, it won’t be forever, just a few months.
What to do, Part 2: Fluids
Please check with your doctor or healthcare provider for this part. Some people have been instructed by their doctors to limit fluid intake or salt intake. There are health risks associated with too much of either of these. You want to be sure that what you are doing isn’t going to make things worse, so check with your clinic.
Now, why push fluids? Why electrolytes, why add salt? A significant portion of people with Long Covid (#pwLC) are being diagnosed with dysautonomia and/or POTS (postural orthostatic tachycardia syndrome). There are pretty standard ways to treat this, and they work really for for many people. The main points are to push fluids, add extra salt (either in your diet or by drinking electrolytes), and wear compression garments. Also, be careful about exercise, and consider staying laying down for your workouts. If you are just starting your Long COVID journal, you hopefully haven’t yet gotten to the point where you would need this diagnosis. The idea here is that if you try some of these strategies a little early, maybe it won’t get as bad? As far as I know, there isn’t anything testing this idea, of trying POTS strategies as prevention, but you hear it a lot in the patient support groups, people share these tips, and many (not all) find them helpful whether or not they have a dysautonomia or POTS diagnosis. Yes, it’s anecdotal, but if it’s low risk for you, then consider whether it’s worth trying.
What to do, Part 3: Pacing
The basic idea behind pacing is to not just rest, but to be able to know when rest is most important. #MEAction created a campaign to try to help people recovering from COVID or who newly have Long COVID to learn how best to do this. Their campaign is called “Stop. Rest. Pace.” That’s the simplest way to explain the idea of pacing. Many people recommend keeping a diary of both your activities and your symptoms, and then looking for patterns. Of course, this isn’t going to make it easy for you, by having your symptoms worsen immediately after you do something that makes you worse. It’s complicated by the worsening often happening with a delay, anywhere from a few hours to a few days. Like with the section on rest, this deserves a deep dive and it’s own blogpost, so for now, here are a few resources just to help you get started.
#MEAction has a Pacing and Management Guide for ME/CFS which is very helpful also for people with Long COVID. The Bateman Horne Center (famous for their research on and treatment of fatiguing illnesses) has a ME/CFS Crash Survival Guide. It’s big and long, and hard to read if you’re in the middle of a crash, but there are a lot of useful tips and tools, including flashcards for when you are too tired to explain what kind of help you need. The idea is not that you would pick up and choose a card and wave it someone for help. The idea is that someone who is around you a lot would know about these, show them to you, and you can signal which is the right kind of help for right now. Yes, things do get that bad, where you can’t talk, can’t say the words you’re thinking, can’t think.
What to do, Part 4 & 5: Do (Eat Healthy) & Don’t (Push)
It would seem like eating healthy is an obvious thing to do when you’re recovering from an illness, but of course, COVID-19 is going to make it complicated. It’s not just “eat healthy.” They’ve been finding that people tend to recover better by including high quality protein in their diet. Some people start to react to certain foods, and find it helps to eat an anti-inflammatory diet. Some people find that having sweets or alcohol or caffeine or (God forbid!) chocolate can trigger a crash or relapse. Many of us are reacting to gluten or dairy. Better to give things that can cause problems a break for a few weeks or months rather than have it be for a long time or forever. “Eating healthy” while recovering from COVID-19 is both eating things that are healthy for your body, and also not eating (or drinking) things that can make your worse.
In the Long COVID support groups, we’ve noticed that many of the people were those who either couldn’t or didn’t know how to take a break, people who have become experts in pushing through tough times and doing whatever it was that needed to be done. This includes Type-A personalities, athletes, people who work in essential worker and manual labor types of jobs, parents of young children, caregivers of any sort, people who work multiple jobs to break even, and so forth. If you are tempted to say, “But I can’t take a break!” or “I can’t afford to rest,” stop. Stop right there, and think for a moment. What’s the worst thing that will happen if you don’t rest now? What’s the worst thing that will happen if you find yourself having to rest almost constantly for the next 900 days or so (like me)? Please, try to find a way to let yourself rest. Don’t push yourself. Don’t push through the warning signs. Pay attention. Listen to your body. If you have trouble taking breaks ask people around you to help you remember. If someone offers you a chance to sit down for a minute, take it. If people want to help, let them. This is not the time to prove how tough you are.
I want to say thank you to all the many people in the #MEAction Long COVID-19 Group on Facebook who helped review early versions of the infographic, and suggest updates, clarifications, and corrections. Any remaining errors or confusions are my own responsibility.
Sources Listed in the Infographic
- Barrea et al. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8954128/
- CDC: https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html
- DeCary et al. https://www.jospt.org/doi/10.2519/jospt.2021.0106
- Long COVID Physio https://longcovid.physio/resources
- #MEAction https://www.meaction.net/stoprestpace/
- The Century Foundation https://tcf.org/content/commentary/rest-may-be-the-best-treatment-for-long-covid-our-disability-policies-should-reflect-that/?agreed=1
- UpToDate https://www.uptodate.com/contents/recovery-after-covid-19-the-basics
- Bed https://commons.wikimedia.org/wiki/File:Bed.svg
- Calendar https://upload.wikimedia.org/wikipedia/commons/thumb/4/4c/Calendar_Noun_project_1194.svg/88px-Calendar_Noun_project_1194.svg.png
- Chest https://commons.wikimedia.org/wiki/File:X-rays_chest_icon.svg
- Confusion https://commons.wikimedia.org/wiki/File:Noun_disorientation_Nithinan_2452297.svg
- Cough https://commons.wikimedia.org/wiki/File:Medicon_cough.svg
- Drop https://openclipart.org/detail/220847/drop-lineart
- Egg https://commons.wikimedia.org/wiki/File:Kitchen-egg.svg
- Pain https://upload.wikimedia.org/wikipedia/commons/c/c6/Wong-Baker_scale_with_emoji.png
- Plus https://openclipart.org/detail/90739/newplus
- Push https://commons.wikimedia.org/wiki/File:Icon-push-object-3194184.svg
- Salt shaker https://commons.wikimedia.org/wiki/File:Salt_shaker_on_white_background.jpg
- Sick face https://thenounproject.com/icon/sick-face-emoji-2816990/
- Tired https://openclipart.org/detail/91513/al-tired