How I Recovered from Post-viral Fatigue Syndrome (Chronic Fatigue Syndrome)

2021 update: If you are experiencing “long COVID” and your physician can’t find anything medically wrong, the information in this post may help you find the relief you’re seeking. Listen to this podcast with Nicole Sachs, LCSW, and see if it resonates. But first, read this post. 

On March 20, 2019, I woke up with a cold and some nausea. Although the congestion subsided within two days, I was left unable to walk more than a few feet. My legs burned with lactic acid as though I’d run a marathon. At times, it felt like I couldn’t breathe, and I couldn’t bend over without my heart rate skyrocketing. Lifting my arms was a Herculean effort.

My mind, too, was off. I felt as though I were underwater, and everything around me was moving at a different speed. I had trouble thinking, much less articulating, a coherent thought. I’d look at words, but if the meaning came at all, it often took several minutes to understand a single sentence. 

I could barely hold my phone, and I enabled predictive text because typing was far too taxing, mentally and physically. Forget cooking, doing laundry or washing dishes. Thankfully, I had friends who were able to come over and help with those things, as well as helping with cat care.

After a month of this, last March I was given a diagnosis of post-viral fatigue syndrome, which is both a catch-all for “we have no idea” and the preliminary diagnosis for myalgic encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). All told, more than 50 tests came back healthy (including adrenals, immune system and thyroid). The good news is that my body appeared to be healthier than ever. The bad news: My doctor said that he would order any tests I wanted, but otherwise, he couldn’t help me.

I have a great physiotherapist, though, and she assured me that I would recover. Stimulating muscle fibers was essential, she said. She started me with “exercises” like shoulder rolls and lifting my arms in front of my body. Her faith in my eventual recovery kept me going (along with the pressure of having a book on the way).

My condition went in waves for several months. When I felt better, I’d think, “FINALLY!” and I’d try to catch up my task list or walk a couple of blocks. That “push” was inevitably followed by a “crash,” a month of being virtually unable to leave my apartment. My cognition deteriorated to the point where I couldn’t hold a thought in my head (and not in the positive, meditative way!). All I could do was notice, lie on my office futon and stare out the window. Sometimes I wondered if this was what it felt like to watch yourself develop dementia.

I was also losing weight—a lot of weight—without trying, and I was starting to look like a completely different person. Another part of me just watched all this change. It became super-clear that the only true part of me, the only thing I can point to as a consistent “identity” among all the Sarah chapters since 1966, is the consciousness that witnesses all the changes.

The amygdala rebellion

At the same time, my sympathetic nervous system was activated 24/7. For most of us, the sympathetic nervous system is active when we’re awake, and it spikes when we experience fight-flight-freeze reactions (amygdala hijacks). But when we’re relaxed, meditating with fully closed eyes, or asleep, our parasympathetic nervous system—responsible for ‘rest and digest’—dominates. This automatic balancing act is a key part of what keeps our bodies and minds healthy.

My parasympathetic nervous system wasn’t kicking in at all, even when I was asleep. My ability to regulate my emotions was almost nonexistent. I had the executive functioning of a four-year-old. I was on edge all the time, yet exhausted. Sleep was disrupted and unrefreshing. 

My sense was that underlying this “PVFS” was an enormous energy block that I needed to clear, in order to become the person I need to be for this next chapter. 

Taking a mind-body approach with Curable

In June, I discovered Curable (okay, I’d been bombarded by Instagram ads for the app for a month, and I rage-tapped the ad). Curable is a physician-designed app that takes a mind-body approach to treating chronic pain through education, meditation, guided visualizations and brain retraining.

Our human brains, like all animal brains, are wired for survival, and therefore, easily conditioned to respond to perceived threats. Sometimes our brains continue to send the same danger signals (pain and/or fatigue) to distract us from emotional pain, old or new.  

Mine was a stereotypical “poor little rich girl” childhood. From a material perspective, I was showered with education, opportunities and privilege. It was the epitome (or close to it) of privilege. The paradox: From an emotional perspective, I experienced significant trauma and neglect, beginning at 18 months; it lasted throughout my childhood. In the 1970s, it wouldn’t have occurred to my teachers that a girl could have ADHD, and the framework of Aspergers hadn’t yet been identified. I was a puzzle to the people in charge of my care. Because I was perpendicular to my family, and nobody else understood how I experienced the world, I often felt gaslighted growing up. I learned that it was not safe to feel strong emotions, so they went underground. 

Although I’d spent 20 years in psychotherapy and a decade in deep contemplation, I’d never felt the trapped emotions. Curable helped me do that. (Please note: My understanding is that there are multiple causes of ME/CFS, and likely, PVFS as well. This is my experience, and I don’t mean to imply it’s the sole universal cause.)

Within a month of starting Curable, the near-daily migraines I’d experienced for 30 years were all but gone. Slowly, my physical strength began to return. I still had to lie down every 10 minutes, I still had weeks where I was mostly bedridden, and I still needed a lot of help with daily tasks, BUT I was making progress. 

Curable work can be hard. The education part (a podcast) is my favourite, and I like the meditations and guided visualizations. The expressive writing, though, opened an entire galaxy of deep, painful emotions [this isn’t the case for all Curable users!]. Pain and pain-equivalents are often displaced/somaticized emotions that the psyche deems too dangerous to allow into consciousness. For some people, just knowing that is enough. It wasn’t enough for me.

I didn’t want to rehash the stories from my childhood—I’d already spent 20+ years in therapy—but I did need to feel the feelings, which I’d never been able to access in therapy.

All kinds of old pain arose in me–situations and emotions I hadn’t even thought about in more than a decade. In fact, I’d believed they’d all been lifted by grace. Now it seemed as though a massive tangle of rage and emotional anguish from childhood was thrust back onto me in one fell swoop. 

I poured rage onto the pages of journals. I screamed and sobbed. I bought a giant Nerf bat and pounded the crap out of soft objects. I felt different parts of me, different ages, come forward to be heard. The energy needed to leave my body. And as it left, my body gained more mobility. I was able to walk, as long as I lay down on benches every 20 minutes. I experienced moments of joy; I became more animated, more myself. More neurodivergent, for sure, but a self that, for the first time, felt like it contained all the multitudes of my life experiences.

At the same time, I was taking a course called Awakening Through the Pain Body*. I was awed by the similarities to Curable. Different language, and different ways of releasing energy (I highly recommend dancing like Elaine from Seinfeld), yet the foundational concepts were almost identical. Curable has no innate spiritual perspective, and Kim Eng’s course didn’t dive deeply into neuroscience. Still, they worked beautifully together. It reminded me of how all mystical paths point to the same experience with slightly different words, based on regional culture and language.

My cognition returned more slowly and erratically. My reading comprehension was shot. Writing so much as an email took exponentially more time. Even with the understanding that only exists as a human construct, well, I didn’t have time.

Neuromodulation: Everything old is new again

In October, with a depleted savings account and a signed book contract in hand, I needed to be able to function professionally ASAP. I have no doubt that Curable would have brought me back to 100% (or better) eventually; I just needed, like, a quantum leap. 

I sought out neurofeedback, and the practitioner recommended a different form of neuromodulation, transcranial electrical stimulation, which can help brain regions re-learn how to communicate (among many other things).

tES is a safe, non-invasive approach that’s been around for 50 years, but it’s often overlooked in favour of Big Pharma. (In my previous 22-year journey through 18 medications, not a single healthcare provider mentioned it as an option.) Two electrodes are placed on the scalp (one anode, one cathode), and a very gentle electrical current (less than 2 milliamps, or 1/1000th of the current used for ECT) is introduced. It feels like a very gentle scalp massage, and the effects are noticeable immediately. During the first session, I felt a wave of calm ripple down my neck to the rest of my body.

After two tES treatments, I was back to full physical mobility, though not full strength. Within six weeks (12 treatments), my cognition had improved significantly. Once I came out of dissociation, though, I began to feel the extreme anxiety that my brain had been trying to protect me from by creating exhaustion and weakness. A slew of spontaneous memories arose. I hadn’t forgotten those events, exactly; I just hadn’t thought about them in 10, 20, 30, 40 years. 

Today, my body is mostly back up to speed, though a year without my usual level of exercise left me seriously deconditioned. I’m at about 90% with the exception of my short-term memory. Not ideal, but I can (mostly) function. The anxiety can be very intense, and I still experience flashes of reactivity, though many fewer than last year. I found out that my doctor hadn’t expected me to recover at all. So many experiences in my life meet the criteria for “miracle” and this is one. I feel immensely grateful for my health and for the modalities that enabled me to heal. I continue to use Curable, as well as Nicole Sachs, LCSW’s JournalSpeak and occasionally, CES (cranial electrotherapy stimulation).

The issue was all in my brain, but it wasn’t imaginary. The exhaustion and pain were measurable and demonstrable. The interplay between mind and body goes so much deeper than we realize. 

Dissociation, grace, or spiritual bypassing? Yes.

When I had a “bliss experience” in 2010, I now believe that, on a psychological level, I structurally dissociated from some old parts (in the language of Internal Family Systems). Not fully—I still knew the facts of my previous life, I still communicated with my sisters and a few others, but the preceding years all folded into a timeline that someone else had lived. A half-developed Polaroid. 

Because I’d dissociated from all my old pain, I had no longer projected fear onto everyone and everything around me. Without fear, I’d been able to see clearly for the first time. The view was spectacular. 

At the same time, I believe that bliss episode was also an act of grace. Had I not dissociated, I wouldn’t have been able to receive many of the insights that came in over the following seven years. 

The phrase “taking a spiritual bypass” means that a person avoids their pain through spiritual lingo or practices (only talking about love, all the time, and refusing to acknowledge any “negative” emotions). I didn’t intentionally take a spiritual bypass: I had plenty of challenges during that decade (just read this blog!), and I was most certainly not all peace and love all the time (LOL). I didn’t even realize that some parts of me had dissociated.

However, without any conscious decision on my part, some younger parts of me did bypass most of the 2010s, and I’m still coming to terms with that. The story I’ve decided to believe is this: The experience in 2010 was both a dissociation (on the physical level) and an act of grace (on the spiritual level).

Yet the dissociated parts also contained a number of skills I needed in order to launch P.S. I Love You More Than Tuna. Self-parts, like entire humans, are package deals. With the skills came the anxiety, the hypervigilance, the Type A drive—all of which I know from experience are ego strategies for dealing with perceived threats outside my comfort zone. And even though I’m working with a publisher that shares much of my worldview, launching a book is suuuuuper-way-outside my comfort zone!

Or at least, it was. To my surprise, I’m now eight months out from the launch and not nearly as freaked out as I was a year ago. Back then, the future was just a thought. As with everything thus far, I can handle whatever is here in this moment. The challenge is to remember that. 

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Photo credit: Gunn Shots (On and off these days) on VisualHunt / CC BY