Our onsets were, at the time...odd. We never spiked fevers and had only “mild” lung symptoms. Our symptoms never fully announced themselves in the form of an acute illness but also took forever to go away. The flu is a thunderclap. This was more 2.5 months of daily gray, drizzle.
My husband’s illness began on March 22 with an upset stomach. Then, he started falling asleep for hours at a time in the middle of the day. At first, we thought it was a stomach bug. One day, he walked up a hill he‘s walked many times before. It winded him. His chest was tight.
Four days later, I, too, started falling asleep in the middle of the day. I was also sleeping more at night—ten hours to my usual eight. I would get tired after mild bouts of activity like walking downstairs to get something to drink, or having a few phone meetings.
The post-exertional symptoms were not the post-exertional malaise (PEM) of #MECFS. It wasn’t exactly fatigue, either. The closest word is “somnolence.” It was a feeling of suddenly passing out that I can only compare to the induction of anesthesia.
Then, after walking up a flight of stairs, I felt my lungs *burning*—a sensation I don’t think I have ever had before. It was something *like* what you might feel when you push yourself to the absolute extreme of your lung capacity during aerobic exercise, but 10X worse.
I ended up laying in bed for two or three days with a sore throat that would come and go. Almost any exertion made my lungs burn more. I could not sleep on my back. I would wake up feeling like I was suffocating or drowning. I spent a lot of time prone.
Slowly, the symptoms subsided. About three weeks in, I had gone three days in a row with no symptoms. I felt amazing! My husband had been symptom-free for a week. So, we decided to drive to Griffith Park and go for a walk.
We walked for maybe ten or fifteen minutes, on flat ground, rather than our usual, hour-long, hilly hike. We wanted to be conservative. When we got home, I walked upstairs to my bedroom. My lungs were BURNING. My sore throat came back. We both passed out within minutes. Whoops.
After that, we barely exerted ourselves for weeks. We knew we’d probably need to be “well” for much longer than three days before we could risk being active again.
We’d need to test the waters very slowly, walking half a block one day, resting and seeing what happened, then maybe a block the next, etc. We could do this! After all, I had been managing my activity quite strictly for 8+ years. We were already masters in this.
Turns out, I am a very slow learner. The next time I felt completely well, I put on one of my favorite songs and danced it out for 3+ minutes. Lungs burned, sore throat came back.
Rested for a few weeks. Felt great. Then, I did a bunch of squats in an attempt to troll my husband who is still, even all this time post-surgery, freaked out whenever I do anything remotely athletic. Lungs burned, sore throat came back.
Finally, I started realizing I was putting myself into real danger of developing long-term damage. No jokes, no dancing. I laid in bed and stayed there, only getting up to go to the bathroom or stand a few times a day: three months of near-bed bound convalescence.
I am pretty confident my viral symptoms are finally gone. My husband has been fully well for three or four weeks.
I’m pretty well-convinced that #COVID19 has, in me, caused new connective tissue damage. If true, it would align with my theories about why some people develop cervical instability and other neurosurgical problems after infections. link.medium.com/5A30PfjRt7
After the fever that triggered my #MECFS symptoms, I developed a sort of Grisel’s-like syndrome involving both craniocervical and atlantoaxial instability.
It went undiagnosed and untreated, worsening in tandem with a “tight filum”-style tethered spinal cord syndrome that I was very likely born with. (I've had extremely mild symptoms I didn't even notice my whole life.) me-pedia.org/wiki/Tethered_…
I suspect both pathologies were progressively worsened by a cycle of ongoing inflammation, mast cell activation, and connective tissue damage. Spinal stability and your filum terminale depend on healthy connective tissue. medium.com/@jenbrea/onset…
My PEM, #POTS, and nearly all my other #MECFS symptoms remitted following the craniocervical fusion and tethered cord surgeries I had last year––all but a greatly improved, still smoldering, #MCAS (mast cell activation syndrome). medium.com/@jenbrea/healt…
I have a range of mast cell stabilizers and antihistamines on hand. I take them only when needed, which since surgery is rarely. The "big guns" is a form of Benadryl (diphenydramine) that can be taken intramuscularly or intravenously.
Two, I came across several patients who said their mast cell meds were crucial for "surviving" their bouts with #COVID19. I shared this with some of my doctors, who then mentioned they had other patients with similar experiences.
So, after my first two days of proning, I reached for the injectable Benadryl. Immediately, the burning sensation in my lungs was gone, the whole-body inflammation, quieted. I spat up a large amount of mucous I had no idea was there because I never developed a cough.
I did this three or four times, and each time, the lung burning went away, the whole-body inflammation quieted down, and I coughed up a whole lot of mucous.
That was enough to make me go, "Hmm..." and so I went on my full cocktail of oral mast cell meds and kept taking Benadryl as needed.
I don't think either of these drugs had an effect on the length of my recovery, which was nearly identical to my husband's, but as someone with #MCAS, it made the symptoms *much* more bearable.
I forgot to mention! My husband and I also had intermittent loss of taste. We didn't have zero taste, it was more likely familiar foods would taste very odd to us, to the extent that I couldn't eat them.
Every time I took Benadryl, in addition to the lung burning subsiding and the coughing up of mucous, I would feel the entire right side of my tongue tingle in the most bizarre way. I wondered if that sensation and my intermittent loss of taste might have been related?
Many weeks into being sick, I started having what I soon realized were probably vascular symptoms. My husband had reported similar symptoms a week earlier than me, in particular a feeling that his extremities "weren't quite there."
I've had neurological reasons in the past for feeling odd sensations in my extremities but this wasn't numbness. If I touched my hands, the skin sensation was normal, and yet...my perception of my hands and feet were that there were less "there" than they should be.
Other days, I would wake up and it would feel like I had *too much blood* in my veins. This was right around the time people were starting to talk more about vasculitis and blood clotting.
I took aspirin because that's what I had on hand (also a mast cell stabilizer, I later learned). It helped with the weird blood sensations, which the mast cell meds didn't touch.
So, I was taking an obscene number of medications just to get by for the better part of almost three months, all while deconditioning in bed so my lungs didn't burn, which was *necessary* but isn't great, even for a healthy person.
For me, with my spinal surgeries, my history of 8 years of deconditioning due to #MECFS, and the dural "blebs" that were found last year in my lumbar spine, which make me prone to spinal fluid leaks...💥
A part of why I tried so hard to tamp down the inflammation I was experiencing due to #COVID19––other than a desire to get some symptom relief––is that I believe my own hypothesis, at least as applies to my case.
That it was the acute inflammation during my first viral infection in 2011, and the cycle of ongoing inflammation and mast cell activation it triggered, that further damaged my connective tissue and led to worse and worse CCI and tethered cord syndrome symptoms.
I have two titanium rods and six screws in my skull, C1 and C2. My filum terminale has been snipped. I am very unlikely to ever develop CCI or TC again, absent major injury. So, I am also unlikely to develop PEM or POTS, unless through some other pathway or form of damage.
And that's the thing that still worries me about infection in general––the propensity of my own immune system to wreak havoc on my body. That hasn't gone away.
Mast cells are resident in connective tissue throughout the body. What most people don't realize is that your dura, the "skin" that wraps your brain and spinal cord and keeps the spinal fluid in, is connective tissue, and it is full of mast cells.
In people with #MCAS, mast cells can degranulate and cause symptoms in response to all kinds of triggers: sunlight, vibration, mold, chemicals, foods, pain, spinal subluxation, infection.
But, even the most diligent prevention is not 100% fullproof. My husband probably caught it on a grocery run, and gave it to me. He was wearing a mask, but no one else was. It was when the CDC and the WHO were still on the fence. Thanks, guys. It's been a fun three months.
So, it's June 20th. My #COVID19 symptoms are well and gone. No more sore throat, no more lung burning. If I take Benadryl, the right side of my tongue doesn't go numb and I don't spit up mucous anymore. My extremities are neither "not there" nor my veins "too full."
I've stopped passing out from exertion. The whole-body inflammation has all but completely quieted down. My #MCAS is worse than it was before, but I think eventually, it will improve.
All is almost well––except that, as I predicted, I am getting constant spinal fluid leaks. 🤦🏽♀️
All is almost well––except that, as I predicted, I am getting constant spinal fluid leaks. 🤦🏽♀️
I can't know why that is, but I suspect the three months of #COVID19 and mast cell activation weakened my dura.
Deconditioning, of course, doesn't help, but I am getting my strength back quickly. Yet, very minor asymmetric movements, sometimes even just the act of walking, and I immediately start leaking.
There's a neurologist who likens the duras of patients like me to "old pantyhose." That was true even before #COVID19. Now? I think cheesecloth is a better analogy. Poor dura. 😢
And so I am now in a constant cycle of reconditioning, trying not to spring a leak in the process, miscalculating, laying flat for days, trying again. I've been here before. This is not a likely outcome for anyone who isn't already prone to this problem, but––
I am also an advocate because right now, the best non-surgical treatments we have are some pretty common-sense preventative measures that include anti-microbials, anti-inflammatories, and bed rest.
PS––so much of what we first thought the symptoms of SARS-Co-V2 were “supposed” to be and the problems #COVID19 “can” cause proved to be wrong. A lot of patients were harmed by the literalness with which some primary care doctors interpreted early guidelines.
This included telling patients it was impossible to still be sick due to #COVID19 after so many weeks.
The only reason medical guidelines have changed so quickly, and continue to change, is that #COVID19 is a pandemic being experienced by millions of people at once, with tens of thousands of doctors and scientists actually paying attention.
I know to some people it feels frustrating to have the science seemingly "change," so quickly, so often. What you are watching is a totally normal process that usually advances at the pace of a tortoise unfold in hummingbird time.
The same sh** happens in other disease spaces all of the time. It is part of the process.
In normal/tortoise time, it can take decades for new discoveries to be made, replicated, challenged, and then eventually incorporated into clinical practice.
In normal/tortoise time, it can take decades for new discoveries to be made, replicated, challenged, and then eventually incorporated into clinical practice.
