My symptom expression, a timeline

Symptom (in order of appearance 2017-2021)Speculated Cause
Outsized positive training sensation, followed by weeks of fatigue in training (acute)Non-functional training overreach, under-recovery
Reduced ability to adapt to training, increased susceptibility to illness (chronic)Chronic physical and emotional stress left my body few resources to do anything “extra”
Sleep disturbance, heart rate suppression, reduced heart rate variability, heart palpitations (chronic)Nervous system on high alert, sending erratic electrical signals to cardiac tissue, attempting to limit further aerobic stress, inability to switch out of “fight or flight” (sympathetic activation)
Fatigue, inability to perform in competition, evolving to energy crashes (chronic)The culmination of all of the above
Hives and rashes (acute, recurring)Mast cell activation caused by pathogens
No evidence of mitochondrial recovery after 12 months sedentary rest (chronic)Mast cells release mitochondrial DNA fragments, causing mitochondrial autoimmunity (body attacks its own mitochondria)
Severe back spasms resulting in temporary inability to breathe or moveTension Myositis: severe pain caused by suppressed emotional disturbance, CNS distress
Vitamin deficiencies, new food intolerances including gluten, sugar, berries, and citrus (chronic)Malabsorption of nutrients due to inflammation of the digestive track, caused by hypersensitivity of the vagus nerve
Glossitis and canker sores (acute, recurring)Food intolerances and Vitamin B12 deficiency
“Immune activation,” the sensation that I’m about to get sick or am sick, lasting for 1-3 weeks, including swollen lymph nodes, feeling feverish, sore throat, headache, body aches (acute, recurring)Weakened immune system attempting to fight off the pathogens now circulating unchecked in my body
Foul-smelling urine, nitrites, leukocytes, and protein in urine (acute, recurring)Body attempting to rid itself of pathogens
Severe reaction to routine vaccine (acute)Aluminum toxicity, immune reaction to aluminum conjugate in vaccine
Brain fog, reduced capacity to focus (at times too severe to spell or drive) (chronic)Brain inflammation, Dorsal-Vagal Freeze (Polyvagal theory)
Air Hunger, a similar sensation to anaerobic glycolysis or “keto flu” (chronic)Cell-danger response not letting oxygen into cells, increased reliance on anaerobic energy production
Chronically high ferritin despite normal iron levels (chronic)Blood produces ferritin to absorbed oxidized iron resulting from cell danger response oxidative buffer
Temperature dysregulation, spontaneous hypothermia (acute, recurring)Lack of aerobic energy production means less heat produced as a byproduct
Orthostatic intolerance (feeling dizzy upon changing position, heart either racing or slowly pounding,) syncope (acute, recurring)Inadequate energy and incorrect signaling by CNS to heart to change blood pressure in response to change of body position
Loss of spatial awareness in limbs (acute, recurring)Dorsal-Vagal Freeze response: CNS shutting off connection between brain and parts of the body

I think of my symptoms more or less in two categories: nervous system symptoms and immune symptoms. The crippling fatigue, cardiac and blood pressure issues, and brain fog strike me as problems mainly stemming from my CNS, while the symptoms that seem more like a viral infection are related to immune system activity.

There were two distinct periods where I had severe expression of most of these symptoms simultaneously, but in particular the nervous system symptoms. I call those “crashes.” Each was about 6 week in duration. The CNS symptoms produce a fatigue so profound. It is nothing at all like the fatigue experienced after a hard workout or night of no sleep, or even during the flu, nor does it respond to rest. On the worst days of my crashes, I could do very little for myself; I was mostly bed-bound. On an average day in a crash, I could walk around my apartment as needed for basic tasks, though carefully, because loss of consciousness was common. I pared my workload down to a bare minimum and utilized most of my available energy fighting to make enough money to continue paying rent.

During non-crash periods, I could work from my computer for several hours a day. I limited any in-person work to the absolute necessities, and only when my energy felt up for it. I could do chores around the house if I was careful. I still experienced immune activations throughout these non-crash periods, but the fatigue was that of a normal bout of flu, or only slightly worse: generally not bad enough to prevent me from completing the most essential tasks. During the past year and a half, I have felt like I have a cold or the flu about 75% of the time. I have gotten so used to it that if my nervous system symptoms are manageable, I can present as almost normal.

On the very best days of the past three years, I could exercise, but not much, not hard, and for the most part, my body was not adapting to training, it was just tolerating it.

Within the realm of ME/CFS, my symptoms would classify as “mild to moderate.” For the vast majority of my experience, I could drive, work enough to sustain my business, and very occasionally recreate, though I often paid for such recreation later in the form of pain and intense fatigue. In my crashes, my symptoms were generally moderate: I was bed or couch-bound, but had periods where I could think, work from my laptop, or sometimes walk short distances. Moderate to severe CFS leaves individuals completely bed-bound, often too sensitive to light or sound to interact with the world around them.

I shared my experience of OTS candidly from the beginning. When it became clear I was dealing with something beyond OTS, I shared the beginning of that story. During 2020 and 2021 when I experienced the worst of my symptoms, I mainly tried to hide my experience, interacting minimally and only when I was well enough to fake health. Through a combination of extremely careful schedule management, cancelling work where it would be least noticeable, and sheer timing luck, I hid my most severe symptoms from almost everyone.