12. A viral long-hauler’s timeline, almost certainly COVID: March 2020 and onward

Self-identified COVID long-hauler here. March 2020 was life-changing for me, in that I believe it directly affected my health and well-being, and not in good ways. My illness wasn’t confirmed COVID, but I think the timing was just too suspicious. Around March 13, 2020, I went from about thirty years old and generally healthy to embarking on a diagnostic quest to identify what had become wrong with me, and then eventually considering myself a long-term sufferer of post-viral symptoms, even disabled in some situations. As I write now, I’m dealing with the following symptoms, the severity of which often varies with my activities:

• Fatigue
• Muscle weakness
• Brain fog
• Spleen pain
• Occasional shortness of breath
• Occasional dizziness

In this post I want to share my experience so far with my diagnostic journey and long-term symptoms, and maybe even inspire others with similar experiences to get the treatment and care they need. That being said, I’m only sharing my experience and some of the medical advice I’ve received personally for informational purposes – I’m not offering any sort of medical advice.

So what all has happened so far? Here’s my timeline.

Early March, 2020: Maybe coming down with a little something after my last flu

I had a brief flu-like illness sometime in February of 2020, but I thought that was over well before COVID “hit”. Early in the week of March 8, 2020, my coworker-neighbor and I talked about whether or not to carpool to work that Wednesday, since we both had scratchy throats. (We did carpool for the last time that week. Remember, this was a different era, when people routinely inhabited shared offices with the sniffles.) Then the news coverage and chatter started to pick up about a pandemic. Someone at work was particularly vocal, and we postponed a small dessert potluck we planned for that week. Following a meeting with several coworkers in a small office, my supervisor explained how our immediate management wasn’t in a position to change our existing illness protocols – they weren’t about to send people home over scratchy throats or anything like that. Maybe I was getting tired, too. It wasn’t until that Friday or so, 3/13, that I determined that I was actually sick again. As far as historical events in recent memory, it seems people are regarding that Friday the 13th as almost up there with 9/11.

Mid March, 2020: Why am I short of breath? And why does it hurt to laugh?

This seemed like just another flu – rest up, try to work from home, and take some time off if needed. But then it got different. And I don’t think it’s just because I was seeing COVID warning signs all over the internet. I would get winded, or short of breath, doing some really simple things, like folding laundry. And I then became alarmed when I noticed that it sometimes hurt to laugh or breathe too sharply, like I was breathing in too deeply too fast or something like that. It wasn’t symmetrical though, my sense was that something was going on mainly on my left side. After a few days and back and forth (apparently lots of people calling the doctor around that time), primary care sent me to get a chest x-ray to look for pneumonia. This came back normal, no pneumonia, which was a relief. But something was still wrong with me, and I was weeks and months from further clarity. Remember, at this time, COVID tests were only for the rich and famous (and those with confirmed exposures – which seemed kind of rare because they weren’t testing much of anyone). My sense of smell was also diminished for a while.

Spring and Summer 2020: Lingering and worsening pain on my left side

The flu symptoms went away, but pain on my left side and some fatigue lingered. Not trying for suspense here, but (now I know that) the pain was right where the spleen is. But at this point I developed a new working theory – that this pain in my upper left abdomen was something like a stomach ulcer. A few reasons for this, but most notably, I seemed to think it was associated with rich or spicy foods, and likely large meals. I started a prescription proton-pump inhibitor (PPI) drug (pantoprazole, generic for Protonix) to treat this. I also experimented with some new (I think pretty strict) diet rules – pretty much nothing remotely acidic, and eating many small meals instead of fewer bigger ones. As this progressed, I started dropping weight a bit quickly (though honestly that was probably long overdue). The lack of appealing food and getting used to smaller portions just made it that much easier, so I took advantage of the situation.

July 2020: Came down with a March-like illness again, COVID test negative

It was eerie, the way my flu-like illness came on in July so much like it did in March, and I had virtually the same symptoms. By this time, COVID testing was more widely accessible. Our primary care sent us for testing when they learned of our illness. The COVID tests were negative (apparently false negatives were quite common, but that’s another story). Then by having those negative results, we could get antibody tests.

August 2020: Antibody test negative, continuing left side pain, GI barium swallow

The antibody tests were also negative. Though from March they could have disappeared, and if it was actually a new infection in July, they may not have been present yet. Primary care also did a bunch of blood tests, nothing interesting. The left side pain continued. After trying to nurse myself with a bland diet in addition to the PPI (acid suppression) medication from primary care, I went to (virtually) see a gastroenterologist. During our initial telehealth appointment, my answers to the standard questions didn’t suggest any standard diagnosis. The initial bid from the gastroenterologist was to do an upper endoscopy (i.e., put me out and snake down a thin camera on a tube). Per my request, we tried a barium swallow x-ray first, as something much less invasive. It came back completely normal. I asked if they were sure the x-ray would have picked up ulcers. Yes. But now we need to look for issues with other abdominal organs.

September 2020: Abdominal CT scan

At this point I was almost convinced I had a bad gallbladder. It made sense with the rich food and digestion-related suspicions I had before. But that would have meant that my gallbladder was on the wrong side (very unlikely). It could have also been my pancreas – that spans the middle of the abdomen. And at this point I don’t think the spleen was much on my radar. If I thought that was a possibility, I wouldn’t have precariously roller skated on concrete so much that summer (good indoor exercise at the time, but I wouldn’t attempt such an intense activity now).

The CT scan didn’t find anything wrong. The universe had to be joking. The gastroenterologist was done with me – they don’t manage gallstones, or nerve pain, or whatever else it might be. I thought I could have small gallstones, though – too small for a CT, but ones like an ultrasound would find? I proceeded to persuade primary care to refer me for an abdominal ultrasound. And by persuade, I mean practically demand. I was frustrated with primary care not taking me seriously. Apparently my normal results up to this point should have put my mind at ease. But I had persistent abdominal pain and fatigue, and I wanted to know why.

October 2020: Abdominal ultrasound + got my flu and tetanus shots at the same time + worsening fatigue and brain fog

The ultrasound didn’t find anything interesting, which was great to hear. My left side hurt after, though, from all the prodding during the imaging. I started to think it was a pinched nerve or something on my left side. But then in October the fatigue and brain fog got way worse, and I started needing naps in the middle of the day. In hindsight, after talking to the COVID clinic doctor (January 2021), I shouldn’t have received both of those shots at the same time – they seem to have overexcited my already-on-edge immune system.

November 2020: Saw rheumatologist and started naps

A rheumatologist seemed like the right place for someone with a lingering viral illness. But not when you don’t test positive for anything they can diagnose. Competent and compassionate, but I didn’t fit into any of the “boxes.” It wasn’t lupus. It could potentially turn into lupus, though, and I could return in a year to test for that again.

Around this time I started to notice work getting especially stressful for me. Sure, there were always ups and downs. But I realized I was feeling unreasonably stressed considering what was actually going on. Looking back, this is a prime example of brain fog, especially as it interacted with fatigue. Thankfully I’ve had lots of flexibility and support at work, and could take regular naps in the middle of the day, and basically rest as needed. I continued to listen to my body as it got more demanding about rest.

There’s a condition called CFS/ME (chronic fatigue syndrome/myalgic encephalomyelitis), and at this point it was the best guess I had for what I could someday be diagnosed with. I reached out to other medical offices around this time as well, including an immunologist, pain and spine, and complementary/alternative, but none were in a good position to address my concerns.

January 2021: Saw a COVID clinic doctor

A doctor through a university COVID research and treatment clinic was one of the most helpful people I’ve spoken to. Broadly, I was advised to treat it like a post-viral syndrome. Rest a lot, eat whole foods, take physical activity very easy and slow. Do only 75% of my capacity without crashing, then slowly work up if I can. Also to take this seriously because I could end up with organ damage (especially kidneys or heart) if I have too much chronic inflammation. Dietary changes and supplements like turmeric could help. Take OTC pain reliever for the left-side pain when it becomes a nuisance.

The COVID doctor sent me for blood tests. Nothing interesting, except my iron got low again, so I went back on an iron supplement. If it was anemia all along, I should have recovered in the coming weeks. Not quite.

April 2021: First COVID vaccine, GP thinks it’s my spleen, end of regular naps

My experience with the first COVID vaccine wasn’t very remarkable, maybe I felt a bit more fatigued right after, and a bit better over the coming weeks. It was Moderna, by the way.

I had my first in-office visit with primary care for more than a year. My GP’s latest thoughts were that perhaps my condition has been not unlike the lingering symptoms of someone who had mono. Apparently if it’s like that, it will clear up eventually. And they expressed that the pain on my left side has probably been my spleen this entire time. Not enlarged or lacerated (or other things a CT scan with contrast would have picked up), but just sore. Until I got sick, I was barely aware I had a spleen. I’ve considered the possibility it’s a mesentery (abdominal injury), maybe from coughing or something in March 2020. But unlike someone I know with that type of injury, I couldn’t trace it back to a specific incident like lifting something. The location matching the spleen is suspicious, and remains my latest working theory.

Apparently by taking regular naps I was sort of setting myself up for “failure”, by training my body to expect rest every day around noon. I started focusing more on “sleep hygiene”, getting 10+ hours a night as needed. I also started a relationship with melatonin supplements (helpful on the whole, I think). Not eating or drinking much before bed has also helped.

May 2021: Sick after second Moderna COVID vaccine, not the magic long-hauler cure we hoped for

In the grand scheme of things, getting flu-sick after my second COVID vaccine is hardly worth mentioning. A lot of us, at work and in my personal life, were hoping the second shot would relieve me of my long-hauler syndrome, perhaps sort of resetting my immune system. Unfortunately it wasn’t like that, despite me seeing glimmers of it after my first shot. My body pretty much just chugged along. My spouse and I hosted family over Memorial Day weekend – it was a lovely visit and they helped us lots with outdoor work, but I was exhausted (including overexerted) from basic hosting tasks, including meal preparation and cleanup.

July and August 2021: Need to take a few steps back…again, and measuring my exertion

I’m now aware of a bunch of new rules and quirks my body has. Despite my improved behavior, I’m still disabled. And apparently lately I haven’t been ready to regularly work my eight-hours-five-days-a-week desk job, even working remotely and with zero commuting.

This summer we hosted and socialized with company. Like the spring entertaining, I was looking forward to the visit, and did enjoy it. I made a point of going easier on myself, including more takeout and rest in the middle of the day as needed. But at the same time, both of the visits knocked the stuffing out of me.

Stepping back over a long weekend, I realized that, once again, I’ve been less okay than I thought I was. And once again, reflecting on how if the way I made a living depended on physical work, I’d be dead or out of work.

Through other long-haulers, I learned that an elevated heart rate (e.g., tachycardia, POTS) can be an issue following COVID. At this point I knew my stamina was low and I’d get winded doing simple things around the house, but I didn’t know if my heart was behaving inappropriately. Enter my new heart rate monitor, the MyZone MZ-3 belt (purchased less expensively secondhand) and MyZone tracking app. Though my “workouts” (time tracking various activities during the day) are less than impressive by the usual standards, it’s been extremely helpful real-time feedback, and helps me quantify how hard my body’s been working any given day (holding me accountable for each time I do physical chores around the house – also – who would have known that preparing muffins elevated my heart rate more than going on a walk did?). Neat and relevant data for me to have!

My spouse has encouraged us to embrace qigong as gentle restorative exercise. A relative credits qigong with restoring their health after being hospitalized with a viral illness (probable COVID, early on in the pandemic). I love the idea of regularly doing qigong, but sometimes I have difficulty mustering the patience to do it. But I do think it helps, in between my bouts of overdoing it (most recently, my legs were unhappy because I took some things to the basement, several trips up and down the stairs, and I hung a picture up). I’m hoping this leads to bigger and better things.

Following a recent trip to visit family (one I had been saving energy for for weeks), I came down with some sort of bug (we think possibly Delta, possibly even from a vaccinated relative with allergy symptoms), and my spouse came down with it shortly after. We had flu symptoms and were extra tired. During this time, I made a point to go extra easy on myself, hardly exerting my body physically. Despite the lingering flu symptoms and getting tired much faster than usual, I started to feel a lot like I used to, what I’d call feeling like a normal person. It’s been difficult accepting these physical limitations as a new reality, but perhaps the less I fight, the better I may actually heal. Or at least feel more like a normal person, because that counts for something.

Where do we go from here?

Take COVID and the new Delta seriously, for sure. That shouldn’t need to be said, and basic precautions shouldn’t be a political issue, but here we are. Hopefully humanity does better with this moving forward. I was looking forward to another trip this summer, but it looks like that’s on hold indefinitely. Compared to a year ago, long COVID is getting a lot more attention in journalism and on social media. With any luck there will be some serious progress on treatments. But that being said, sometimes viruses do weird things to people, and for at least some of us, perhaps this will be a lifelong thing. For example, I know of someone who was left with vertigo after being ill with a virus decades ago.

My spouse has had similar experiences, but different in some ways

My spouse got sick around the same time in March 2020, and has also had lingering fatigue and other issues. His food sensitivities also seemed to worsen. He has noted distinct 3-4 month cycles, as far as crashes or flare-ups. We’ve heard that this is apparently a common experience for long-haulers, regular flare-up cycles, and even feeling like it’s a new infection. He’s generally been less affected than I have, but he did get full-blown sick with a fever for more than a week after trimming hedges this fall. He also got pretty sick after the second vaccine, and had a lot of fatigue issues after I brought home something like Delta.

Connections to ibuprofen, age, and vitamin D?

A few interesting points…

I was taking ibuprofen like candy in the weeks leading up to my March illness. Apparently ibuprofen was associated with worse infections, and not advised to be taken to treat symptoms (at least around March 2020).

There was a cluster of us who fell ill or under the weather around the same time. I’m the youngest of all of them (about thirty when I got sick) – by at least seven years or so for those outside our household. My spouse is about three years older than me, and has had long-term issues as well, but perhaps on the whole, not as severe.

In the comprehensive blood tests I got around July 2020, I was found to have low vitamin D (just short of a clinical deficiency). Apparently those with low vitamin D have been found to have especially severe illnesses (example source?). I’d suggest the reverse could also be happening – that the COVID illness somehow depletes vitamin D levels.

My latest guiding principles for well-being, as well as I can articulate them

Initially I glossed over something important about my personality – I’m very much a doer. Right now, I can’t do what I used to physically, at least not without consequences (fatigue crash, sore muscles, insomnia, etc.). I often ask myself if I’m weak because I’m not doing anything, or not doing anything because I’m weak. I definitely keep trying to stay on top of things, like weeding around our house. The hope is that those experiences would make me stronger, but instead my body keeps telling me they’re too much. Slow and steady is what I need, and for my personality, it can be easier said than done.

• Rest as much as possible.
  • Ideally get 10+ hours of sleep per night
  • Recognize when I’m feeling physically tired or suffering from brain fog, and make a point to get extra rest
  • Prioritize tasks, and lower my standards for tidiness at home and other activities as appropriate
• Embrace gentle exercise like qigong to build up stamina
• No schlepping – lifting and exerting my core seems to upset my spleen
• Minimize strain on muscles. For example, my leg muscles frequently complain about squatting and bending over. My arms hurt from holding up a lawn seed/feed spreader for a period of time.
• Maybe only indirectly related, but really, watch those portion sizes (maybe strain on the spleen directly with stomach pressure or indirectly with having to work harder)
• Avoid excess sugar or raw vegetables (I believe I read about the spleen not liking these). Who would have thought raw vegetables could be an issue?

In sum: Listen to your body, and be the biggest advocate you can for your health, mental and physical.