Sometimes, we get a question in the A+ Advice box that seems like it would best be answered on our main site for the benefit of all our readers. This question came from an A+ member, but we know lots of our readers are now suffering from Long Covid, so we’ve moved it here. The question has been edited to remove any personal details in keeping with our A+ members’ expectations for privacy. Thank you to our A+ members for making the work we do here possible!
We received a question from an A+ member, which, because the A+ Advice box is normally behind the privacy of a paywall, we did not publish here. The member asked for resources in dealing with Long Covid, including symptoms their doctor is dismissing as unrelated. Because there is an overwhelming amount of information out there, the letter writer asked for resources on step-by-step instructions for managing Long Covid symptoms, especially info that has been vetted and won’t cause more harm than good.
Hello, my friend. I’m deeply sorry to hear that you’re living this Long Covid nightmare. I was on a virtual panel for the New York Public Library recently and so many people asked this same question, talking about how impossible it is to steer through so much disparate information, anecdotes, and suggestions — especially when your brain and body feel like they’re operating at about 20% of their pre-Covid capacity. When I got Long Covid, it didn’t even have a name yet, and there was no information, but after the NYPL panel I went looking to see what was out there these days, and even I got overwhelmed, despite the fact that I’ve spent much of the last three years writing about, doing advocacy for, and living with Long Covid. It’s too much! And a lot of it is, of course, charlatans trying to make a buck, or journalists and doctors saying it’s not real or “just asking questions” intended to make everyone doubt sufferers. So: scary and demoralizing on top of the overwhelm.
I wish I could give you a checklist of things to do and treatments to try, but unfortunately Long Covid is so many things, and it manifests differently in everyone. I have a dear friend who got Covid at the same time as me, and then developed Long Covid, and the only symptom we’ve had in common this whole time is fatigue. Isn’t that nuts? But what I can do is give you a list of more efficient ways to seek answers, and some ideas about how to manage while you look for them!
1. Finding the Right Doctors
I’m sure that every Long Covid support group is packed with panicked people trying everything under the sun right now. I, too, would find that impossible to navigate. But I think there are a couple of ways these groups can be really useful, even if you don’t have the energy and brainpower to read and digest every message. For starters, the Body Politic Long Covid group has a patient-sourced list of doctors from all over the world. Doctors who specialize in post-viral illness, generally; doctors who are specialists in their fields for things caused by Long Covid, who believe Long Covid patients, like cardiologists and pulmonologists; and primary care doctors who are learning to treat Long Covid patients with open hearts and minds. I’m not a doctor, of course, but to me, it sounds like you definitely could have Dysautonomia*, so you can also check out the Facebook group for Dysautonomia International in your area. Those groups are full of helpful information about Dysautonomia-literate medical professionals.
* The official way to test for POTS, which is the main type of Dysautonomia, is a tilt table test, but you can replicate that in your own home with what’s called a “poor man’s tilt table test.” Get a pulse oximeter for your finger, which you can find at most drug stores for like ten bucks. Lie down and put your finger in it. Once your pulse is steady, sit up, and then stand up. If your pulse jumps 30 beats per minute, or more, you have POTS. Record that on your phone, more than once, so you can show it to whatever doctor you decide to see. They might not even require a tilt table test if you have the video. If you do have POTS, you can find loads of information about how to manage it while you wait to see a doctor at Dysautonomia International. I’d start with electrolytes and compression gear.
2. Getting The Right Tests
Long Covid can be caused by so many different things that Covid can do to your body. It can be caused by the Covid virus still being active in your body, it can be caused by reactivated viruses like EBV, it can be caused by autoimmunity getting kicked on, it can be caused my microclots, it can be caused by your autonomic nervous system getting wrecked, it can be caused by brain changes, and so many other things doctors are still researching. When you find the right doctors, you’re going to want to both get to the bottom of what’s causing your symptoms, and get treatment for your symptoms. Some symptoms might even take time to fully develop.
For me, my Long Covid is caused by several things: 1) Dysautonomia, meaning my parasympathetic nervous system stopped operating normally. 2) Mast Cell Activation Syndrome, which began as huge rashes surrounding my entire face right after my initial Covid infection was over, and ended up affecting mostly my lungs, meaning that without Mast Cell inhibitors, I can’t breathe normally. 3) Autoimmunity, specifically in my digestive tract, which no longer produces intrinsic factor, which means my body can’t absorb B12 from food or drinks, which means it can’t make red blood cells anymore. 4) Some as-yet unknown thing that has affected my brain’s speech abilities.
Because of this, you can either start with a more general type of doctor like an immunologist or PCP who treats Long Covid, who will order comprehensive blood work to check for reactivated viruses, vitamin deficiencies, likelihood of blood clots, etc.; and who will likely want to get some images of your chest and lungs. And from there, they can refer you to specialists to deal with your specific needs. Or! You can contact the specialist for the thing you want to pull the thread on first. That’s what I did. I started with a cardiologist who specializes in Dysautonomia, and then worked backward to find another, more generalized doctor who could help me by looking at all my bloodwork and picking it apart. That worked great for me because my POTS was so bad I couldn’t walk up the one flight of stairs in my house. Once I got that under control, it made just going to the doctor easier because I could walk more than 20 steps at a time.
3. Trial and Error
One of the most frustrating things about chronic illnesses is that there’s not a one-size-fits-all solution. You’ve already discovered this by reading The Great Vagus Nerve Stimulation Debate. Loads of people swear that stimulating their vagus nerve got their Dysautonomia under control. It didn’t help me one bit, and I cannot begin to tell you how many freezing cold showers I took trying to will it to do something. In the beginning, I tried everything everyone suggested. This soup all the people in my Long Covid group swore by, going gluten-free, a low histamine diet, every kind of electrolyte under the sun (hoping to find just the right one to get rid of all my symptoms), dozens of supplements and blended drink concoctions. Some things work for some people and other things work for other people; things that work at first might stop working later; things that don’t work now could suddenly be really useful down the road. There’s just no way to know without trying, which can be frustrating and really expensive! Unfortunately that’s just part of the process.
This is actually another great thing about support groups. Because everyone’s trying everything, there are almost always people looking to pass on what didn’t work for them, from expensive compression gear to protein powder to vitamins. In my early days of Covid, someone in my group bought and then gave away one of those weightless things you hang upside down on, like Batman. It didn’t work for him, but somehow it worked for the person he gave it to! There’s a camaraderie in those spaces for the success, the failures, and the absurdity of it all.
When I first got Long Covid, it was the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) community that I really believe saved my life. People have been getting ME/CFS from viruses for over a century now; there’s plenty of evidence for it, but there’s so much stigma around “fatigue” that — until now — research has been almost nonexistent. So the community has had to do it by themselves. They were on high alert when Covid started and the main message they had was: PACE YOURSELF. Pacing is actually an ME/CFS strategy to keep patients from pushing and crashing and getting worse over time. Pacing — staying inside my “energy envelope” — is the first thing I learned to do, and I firmly believe that I have made this much progress in my journey because of that, more than anything else. You can read all about it here, where all the original documentation lives. I cannot recommend it highly enough. Every person I know with ME/CFS says that if they’d known about pacing earlier, they really believe it would have kept them from doing irreversible long term damage to their body. So if you’re looking for a place to start with trial and error, I heartily recommend you start with pacing.
There aren’t many books about Long Covid at this point. The book I worked on, The Long Covid Survival Guide, is the one I’d recommend most, of course! It’s peer-to-peer advice from 20 people with Long Covid, and it’s broken down into easily digestible chapters with brain fog in mind. It deals with the medical stuff, the social stuff, the financial stuff. It’s really comprehensive and I am so proud to have been a part of it. The only other Long Covid book I can recommend for sure is CNN journalist Ryan Prior’s The Long Haul, because he worked closely with the Long Covid community to write it, and it has the stamp of approval of many people I know and trust. Not specifically Long Covid, but I also found Tricia Hersey’s Rest Is Resistance completely life-changing and essential, and all of Toni Bernhard’s work on chronic illness. I wish I had more resources to offer you, but it’s still early days.
Most of all, I just want you to know that I am standing in solidarity with you and sending you love and hope for full healing.