Last November our family, along with millions of others, went through yet another bout of Covid. It was normal-awful, not hospital-awful, but I fretted through the fevers and fatigue about my chances of developing long Covid. With a one-in-three chance of getting it, would this be the time that got me? It’s a hard thing to fathom when you’re running a business and raising a young child. But no. We recovered and went about our lives. For about a week.
Then out of nowhere I developed anaphylaxis. I treated it with Benadryl, called the CrowdHealth urgent-care doctor, who made reassuring noises, and went about my day. The next day, though, debilitating stomach cramps sent me to the emergency room. The day after that I developed head-to-toe hives that no medicine would touch.
I called the urgent-care back, and got an MD who said my symptoms were pretty classic for mast-cell activation syndrome (MCAS), made worse by a bout of Covid. There it was. I had pulled the winning ticket. Long Covid!
From the American Academy of Allergy, Asthma and Immunology:
Mast-cell activation syndrome “is a condition in which the patient experiences repeated episodes of the symptoms of anaphylaxis — allergic symptoms such as hives, swelling, low blood pressure, difficulty breathing and severe diarrhea. …. The episodes are called ‘idiopathic,’ which means that the mechanism is unknown, i.e. not caused by allergic antibody or secondary to other known conditions that activate normal mast cells.”
Except it isn’t, quite
But as I read up on MCAS, I realized that I had probably had it close to my entire life. The rashes I had as a baby; the asthma as a runner in high school that to this day shows up on X-rays, the bouts of stomach issues I’d had for years. Most strikingly, when I started taking the medicine to manage hives-stomach-pain-anaphylaxis, the brain fog and fatigue I didn’t know I had lifted entirely.
Though I was still covered in demonically itchy hives, this was nothing short of an unanticipated miracle. Suddenly I could do things without budgeting energy for them. Was this how normal people lived? I liked it! And all I had to do was collapse my diet to five non-histamine containing things (shout out to chicken, carrots, onions, apples and rice), work on my stress, eat handfuls of antihistamines, and I too could be a superhero!
I texted my friend Theresa Winn about my newfound identity as an MCAS sufferer.
“I think it’s all TMS,” she wrote back flatly. Tension Myoneural Syndrome, also known as mind-body syndrome, posits that your brain tells your body to have symptoms. As Theresa knew, I’ve had TMS, and I’ve used the techniques outlined by the doctors who work with the syndrome to vanquish back and knee pain. So I knew, from personal experience, that this was definitely not TMS.
“Do you mean to minimize what I’m going through?” I wrote back. Of course she didn’t, she replied. But it was all so classic, and she’d been through this herself already.
I was, to put it mildly, maximally fit-to-be-tied by this, so much so that I spent the next several days more or less obsessing on how very annoyed I was.
But then, not three days later, another friend who has been dealing with MCAS-type symptoms for a long time sent me a text. “I find this guy very helpful for dealing with all sorts of symptoms. He talks about pain, but I sub in whatever symptom I’m having. Youtube.com/@PainFreeYou.”
I’ve known this woman for eight years and have watched her and her kids struggle on special diets. She had never once brought up TMS or mind-body anything, really. The timing was really something. More than something. Ergo: click, the pieces fell into place. I was annoyed no more.
At this point, what should have been a months-long odyssey to diagnose MCAS had already happened in the space of days. What should have taken me years to figure out — that my post-Covid MCAS could be treated using mind-body techniques — had come to pass in the space of weeks.
The trick with treating TMS is to let your body know that you’re onto it. This means stopping treatment to whatever extent is safe and possible (I’m still taking antihistamines, for example), and resuming normal activities. That can be tricky with MCAS. The rashes and other symptoms appear when your body has maxed out on histamine and other mast-cell goodies. It does seem that it’s best to drive down the histamine load before safely going back to digging into a shrimp-and-avocado salad and washing it down with a nice merlot.
The other part, though, that your symptoms are an invitation to self-examination, still very much applies.
Post-Covid is hazardous territory for the kind of brain that tends to TMS symptoms. At present it dwells strongly in the national imagination, and in harboring that fear I probably signaled to my brain that I would be vulnerable to a volley of symptoms if they looked post-Covid-y.
A physician’s experience
Dr. Michael Donnino, a doctor and researcher with board certifications in emergency and critical care, took care of patients on ventilators during the peak of the pandemic. Later he began to notice a different kind of post-Covid patient.
“People who were not in that category, who had mild Covid or were asymptomatic, never hospitalized, ... had all sorts of symptoms: headaches, chest pain, shortness of breath, and back pain,” he said in a recent podcast. “I actually pulled up a whole group of symptoms, and I showed this to somebody and they said, ‘Wow this is long Covid, this is exactly what I’m experiencing.’ And I said, ‘Well that’s interesting, these symptoms were pulled from an article on post-traumatic stress disorder in soldiers from about fifty years ago.’ All of these things may be manifestations of the mind-body syndrome.”
Having completed pilot studies Dr. Donnino is putting together larger three-group blind studies to investigate mind-body interventions for back pain and long Covid using all the typical rigor of modern research. Other studies may follow. Initial results have been very encouraging. Compared to the novel drugs he’s tested, mind-body medicine delivered results for the most participants, with more than half reporting substantial relief of symptoms.
“I have a hypothesis that the mast cells are released as part of the psychophysiologic process, on the list of things to test in the future, hopefully. If true, you might see some response with MCAS protocol, but you could see resolution by treating the underlying process,” he wrote on Twitter.
And how, Dr. Donnino!
These days my friend Theresa, who fought her way back from IBS, chronic pain and fibromyalgia, helps other women do the same through her coaching practice.
“I spent so many years chasing symptoms and diagnosis,” Theresa told me. “The TMS approach has been the only thing that has brought lasting relief.”