Myalgic Encephalomyeletis, also known as Chronic Fatigue Syndrome, is marked by the failure to properly recover from exertion. Ironically, ‘graded exercise’ used to be a prescribed treatment for post-viral fatigue and ME/CFS. It was removed by the CDC as a potential treatment, after leading to bad results, thanks to experts speaking out.
At the age of 26, gradually increasing exercise each day helped me regain my strength after my lungs and body were greatly diminished after open heart surgery for a congenital condition. However, after I failed to recover from a virus at age 30, trying to do even do same activity as the day before often caused major setbacks or “crashes.”
I lost the ability to dance. For the first 2.5 years, my radius was my house and the grocery store on my street corner. I’d have better and worse days.
I’ll explain what movement “strategy” ultimately worked for me during my ME/CFS recovery.
Graded exercise, in itself, doesn’t factor in the following five drivers of ME/CFS I experienced:
1. Environmental stress (ex: mold, volatile organic compounds, other toxins)
Looking back, my energy threshold tanked on rainy and humid days. It was common for me to be at 30% capacity one day, and wake up on humid mornings and be at 10% with a much higher resting heart rate.
It wouldn’t be until over 2 years that I’d learn my house and body had extreme levels of a mold mycotoxin (and that I had a severe inflammatory response to it).
2. Mental stress
For me, mental stress build-up or a particularly mentally stressful event could have a direct impact on whether or not I was able to properly recover from physical exertion.
Continuing to resume even the same physical activity as the day prior, in light of additional mental stress, led to multiple crashes for me.
Research and my experience suggests ME/CFS is driven by a dialed-up flight-or-fight system. My brain perceived even the simplest activities as stressful. For instance, there were days staring at the screen was too exerting for my brain to process. Even during milder times, a simple deadline (like for the writing class I was taking) felt like a bear chasing me in the woods and would be enough to trigger a crash.
Reducing mental stress and stimulation helped me heal so I could handle it again in the future.
3. Emotional stress
This one took me a couple years to realize.
Much like mold used to, emotional stress activated the fight-or-flight center of my brain. Research shows an overactive limbic system can drive autonomic nervous system dysfunction linked to ME/CFS.
Seeing a mindset coach helped me identify my emotional triggers. A simple worksheet she gave me helped me identify two of these triggers including:
- Feeling pressure to go along with someone else when I wanted something different
- Feeling the need to prove myself (my argument, my value, my contribution)
She also explained to me the trauma traps of the rescuer, victim, and perpetrator. Being able to simply identify “my trauma center is being activated” didn’t immediately fix things, but it was the first step.
I realized emotional stress impaired my ability to recover from exertion.
To heal, I had to let go of my energy-zapping rescuer tendencies with other people, give up arguing online, pause my Internet activism, let go of the imagined ‘debates’ I’d have in my head to prove others wrong, and (probably the least easy thing) learn to redirect my downward thought spirals.
4. Pathogenic stress (examples: latent viral reactivations, parasites, candida, bacteria)
This is where things get complex, because my worst crashes would trigger EBV reactivations.
ME/CFS is a perpetuating cycle of dysfunction.
Flares of this and other pathogens, of course, also impacted my ability to recover from exertion.
That said, me trying to “kill the viruses” (etc.) as a primary strategy wasn’t ultimately helpful and I’d find supporting my nervous system to have the biggest impact to my immune system. (Not medical advice, just my personal experience.)
5. Gastrointestinal stress and dysbiosis
This overlaps somewhat with the previous one. When I was experiencing gut dysbiosis and severe IBS, my tolerance for exertion was at its low point.
Since a downstream effect of ME/CFS is gut sensitization and increased permeability, eating “triggering” foods could significantly impact my ability to recover from exertion.
This is one reason why, in the past, I’d crash almost every single time I ate out (which wasn’t often).
However, when I worked on my nervous system, over time, my gut health improved such that once triggering foods became totally fine.
My body’s recovery mechanisms didn’t differentiate between sources of stress.
People have vastly different ideas of what the same concept is (like ‘Graded’ or ‘Exercise’ or ‘Pacing’). I’ve learned that through a previous job overseeing hundreds of customer research surveys.
This is why it’s important to ask, or even better – observe – what people actually do.
And why it’s important for doctors not to casually write ‘try graded exercise’ in a chart, like one did for me (thankfully, I didn’t read until faxing records to another doctor 2 years later).
Is this 1% is this 2% is this 10 is this 20%? Each week? Month? (Totally unclear.) And should we all be doing the same percents? (No.) And do our needs change depending on what else is going on in our life (Yes.)
Note: This blog is about about Chronic Fatigue Syndrome, also known as Myalgic Encephalomyeletis, defined by the post-exertional “crash.”
Words don’t matter, it’s what you actually do, when you do it, and how you do it.
I don’t believe any interpretation of a word is good or bad. What I will say, based on my observations meeting others with ME/CFS, the more type-A someone tends to be, the gentler they probably need to be with themselves. (Why it’s no surprise many with severe ME/CFS were former athletes or extreme exercisers.)
Any movement strategy should depend on the person and where they’re at along their recovery journey. Movement was a positive part of my recovery journey, when done in the right amount, at the right time.
I’ll provide more details about my movement strategy (…if I could even call it that) next.
Here’s what movement “strategy” helped me:
1. Going easy
How I did more: by doing less!
Reducing physical and mental exertion and relaxing more were a necessary part of my healing.
Unfortunately, resting was something I avoided in the beginning (which set my recovery back considerably). I soon realized overdoing it was out of the question. But I also had to learn that progress wasn’t linear, to listen to my body, and that trying to hit 99% or even close to it wasn’t a smart strategy either.
I’ll share in a future post my 5 pacing pitfalls (you can subscribe to my newsletter to stay updated).
I ultimately learned to rest and really pull back in all areas of my life, after countless setbacks trying to keep up. It didn’t require just a better strategy though, it required a complete mindset shift. Here’s how an imaginary permission slip was a gamechanger for my health.
As my ability to recover from exertion expanded because of the 10 things I mentioned in the next section, I could only then begin to increase my physical activity. This wasn’t advice I was given by a doctor – it was something that I had to discover myself.
2. A recovery mindset that I’d one day heal
My recovery required mental toughness and lots of self-love. Thinking I was “broken” (even if it felt that way) and going down the rabbit hole of my fears and who was to blame (for a crash or for getting ME/CFS in the first place) only added to the stress that was blocking my body from healing.
I had to learn to talk to myself like my own best friend and believe in my ability to bounce back.
Even though pulling back was helpful to me, I found it empowering to avoid using limiting language around my capacity in conversations with others. This helped me avoid reinforcing trauma loops. Here’s a funny cartoon example I made.
In real life, I had to cancel on my friend Ann who invited me to “Beginner’s Yoga” at least four times. I realized I didn’t need to expend energy describing how bad ME/CFS is to get my needs met or change plans.
3. Breaking things up
Breaking things up not only helped me stay in my health zone, but also really helped with my lymph flow (the fluid that transports our white blood cells which relies on muscle contractions to flow).
For me, sitting or lying in one spot for too long didn’t make me feel great. Movies and longer drives were out of the question. In fact, the lymph nodes under my arms were so swollen, I couldn’t wear a bra. I found it helpful to avoid long periods of stillness, while respecting my energy levels.
In an upcoming post, I’ll share more about things I did to improve my lymph flow during my recovery, including my friendly 20 minute post-it system.
And in the next section, I’ll share more specifics about what helped increase my ability to recover from physical exertion.
4. Prioritizing physical activity over things that drained energy
– Quit working in a job side gigs I didn’t enjoy.
– Stop mindless Internet use (I had a digital detox window 90 minutes in morning and after dinner). I got rid of social media apps on phone.
– Cutting off Twitter (on any platform), Internet forums, and Internet activism.
– Stop using extra energy to do more chores (I had to let go of the guilt and pressure I put on myself to “make up for my laziness” on the good days).
I had to take my body to a calmer environment (inside and out) before I could really increase my movement. It’s a long list y’all!
1. Healthy diet
Taking my gut to calmer waters (avoiding caffeine, added sugar, gluten, cheese, alcohol, and artificial ingredients), enjoying foods that my body could best metabolize (for me in the first two years that was a mostly Paleo diet, my diet is now mixed), chosing foods that made me stronger and weakened pathogens, and fortifying with healthy nutrients to support my mitochondria, microbiome, and my immune system, was helpful. (Note: I am no longer on any supplements except daily Magnesium and Vitamin D in winter, and I currently eat chocolate and cheese and occasionally have a latte.)
2. Reducing mental stress
I had to quit my job (which I held on to part-time for waaay too long), stop side projects (like the time I tried to restart an old startup with a nonprofit angle or the time I tried to take down a Facebook scam ring), and Internet activism.
All of these things set back my recovery. Unfortunately no one ever showed me a chart of how much I’d ultimately lose because I was afraid of seeming lazy.
Today, I’m able to give more to the world, sharing my truth with love to support those on the road to recovery, because I allowed my body and brain to heal.
3. Creating calmness
Keeping my brain calm supported my resilience to all forms of stress and exertion.
I did this through twice daily meditation, avoiding all Internet and TV news and high-adrenaline shows (no more Handmaid’s Tale), and unplugging (my healthy morning routine and nightly routine were key).
4. Fixing my sleep
Improving my sleep (where our repair happens) quality by getting into a healthy circadian rhythm was essential for my recovery. I thought I was doing everything right with black out blinds, screen dimmers, and all. It turns out there were a few important things I wasn’t doing.
I wrote an article about how I fixed my sleep. I found the book Sleep Smarter very helpful.
5. Having help
I can’t underestimate how helpful it was to have help. For me that was my saintly husband. It also involved asking for help. I learned to let him take over most chores. When he wasn’t away at work or traveling, he’d give me a “tush push” up our stairs or a “back push” up our sidewalk incline to catch some sunlight on our street corner.
6. Setting healthy boundaries
Letting my body know I was looking out it by setting healthy boundaries (or “conditions to facilitate thriving” as I like to call them) which included learning to say “goodbye,” a no excuses needed mindset, and setting my own pace. Here are 9 healthy boundaries I set to live my best life.
7. Moving to a healthy home
Early on, it was helpful for me to switch to green cleaning products and use HEPA air filters to be able to function and breathe more easily.
Over 2 years in, I’d discover I had extreme inflammation in my body caused by a very extreme level of a mold mycotoxin thanks to extensive testing by an ME/CFS specialist. (The tests that caught this were the C4a inflammation test, TGF-Beta, and the Great Plains Lab mold mycotoxin panel.)
Moving out of our water-damaged 105 year old bungalow and into a sunnier. healthier 5-year old home was helpful.
8. Getting out toxins
Getting out the toxins, like the mold and mercury found my body, in a gentle way my body could easily handle at the time, was essential for my recovery. I chose the sauna at a local tanning salon.
9. Getting into nature
Over Christmas 2018, I went to the desert (a much shorter trip than flying home) and unplugged. I was hoping to jumpstart healing by relaxing in the calmness of the desert with a funny book.
Arriving in the desert where the healing really started to happen.
When I went to the desert, I actually was just coming out of a bad crash and viral relapse triggered by minor mold exposure and physical exertion. I knew I didn’t want to have to avoid these things and need airport wheelchair assist for the rest of my life.
Though I wasn’t back at Square 1 (I knew many things by then how to support my body’s ability to recover), there was still some element missing. Then I found the missing puzzle piece.
10. Healing my brain’s fight-or-flight response through neuroplasticity
While meditation helped a lot, my brain needed the extra boost of neuroplasticity to fully heal.
Doing steps 1-9 first made this have much more impact for me.
I believe my body knew on a cellular level it was finally in “healthy soil” and could now thrive.
Soon after arriving in the desert, I stumbled upon an online neuroplasticity program. The program explained how long term mold exposure, trauma, and other stressors can injure the brain’s limbic system, driving chronic illness. It clicked for me. My brain’s fight-or-flight center felt it was dialed up to level 10.
It’s more simple that it sounds. The program involved using healthy visualizations to calm my brain’s overactive lymbic system and generate new, healthy neural pathways.
More than positive thinking, it involved positive feeling.
A big part of it involved making happy memories and future dream vacations come fully alive in my imagination. I also benefited from the lifestyle advice, loved the complementary meditations, and found the structure of it very helpful for me. With the pieces in place, my capacity really began to expand.
Note: There are other neuroplasticity programs, too. My personal advice is to make it fun and always do them at a pace that’s easy (i.e. perhaps you need to break up watching the videos which can be stimulating for the brain).
These 10 pieces above did not all come together for me, until 2.5 years in.
What movement looked like in my upward trajectory:
My brain and body finally began to heal. I had all the pieces together, and I saw my physical capacity and ability to recover expand.
Even then, I wouldn’t have called what I did for the first four months of my final upward trajectory “exercise” (I’d call it more so increased physical activity).
For the most part, it was leisurely walking, and longer walks starting to become easier and easier. When it became easy, I’d pump my arms up and down during my walks. I eventually took up swimming again and eased into light weights.
It also wasn’t ‘do a little more every single day’ (what ‘graded exercise’ means to me). I adjusted in light of the five sources of stress mentioned in the first section, and dealt with effects when I failed to.
I had a couple bumps along the way, but I knew by then the recipe for bouncing back from them.
On a leisurely walk in the desert
Eventually, by May 2019, 3 years post-onset and 6 months into my final upward trajectory, I was I fully back and in even better shape than pre-illness levels.
Because I’m human, I had a “blip” very shortly after reaching peak health while planning for my July wedding (I stopped the neuroplasticity practice, had emotional stress, and continued to up my exercise). However, I was able to dance the night away at my wedding, recommitted to my neuroplasticity practice and morning/nightly routine, bounced all the way back, and have continued to be in full health since.
I’ll share specific insights for people who reach over 80% capacity and how I continue to enjoy 100% health in my next post.
James, who recovered from severe ME/Chronic Fatigue Syndrome and related issues, explains why you can’t exercise your way out.
James’ videos have been a huge source of inspiration for my own recovery, particularly his insights on sleep, self-compassion, and unplugging. I think you’ll really enjoy this video:
He explains why “graded exercise” is particularly dangerous and demoralizing for all-or-nothing people who try to push through the pain. He explains how resting, avoiding stimulation, along with several other factors helped his body heal.
Vera, who recovered from severe ME/CFS, explains what two major things she had fully resolve before she could begin to exercise (…and I couldn’t agree more):
Here’s how Raelan, who fully recovered from ME/CFS after ten years, set her life up in a way to support exercise, after trying and crashing for many years:
Raelan has other insightful videos on what lifestyle factors she made and how she ultimately built up her strength on her YouTube channel.
I hope you’ll see the common themes in our experiences, while doing what’s right for you.
We don’t swing an arm when it’s first broken. We rest and protect it, then work to strengthen it, and then step back in the ring.
I had to take my body to calmer waters inside and out before I could actually “swim.” Doing so helped my capacity naturally expand.
And now I’m swimming….and dancing…once again.
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Last Saturday night. Just sharing a moment of fun. [updated ] Dancing around my house (apartment, dorm room) is something I’ve done for most of my adult life. When the music plays my body shimmies to the rhythm. Then #MECFS came along. For 3 years, after an initial rougher patch, I had the stamina to “dad dance.” Shifting my weight back and forth on each foot. There were a few times I fully Liz-danced, but you can imagine what had to do to “prepare” myself for that and what happened after. When I knew I was better was when I could dance again, my body feeling so light and easy shaking to the beat and feeling great the next day. Maybe for you, your thing is biking. Or Running. Or swimming. For me, it’s dancing to Bruce Springsteen. You can’t start a fire Sittin’ ’round cryin’ over a broken heart This gun’s for hire Even if we’re just dancin’ in the dark You can’t start a fire Worryin’ about your little world fallin’ apart This gun’s for hire Even if we’re just dancin’ in the dark #mecfsrecovery #healthrecovery #dnrs #shimmy #dancevideo #mecfs #chronicillness #hope #joy #healingjourney #brucespringsteen #dancinginthedark #cfs #mcs #recoveryjourney
Summary: I didn’t merely exercise my way out of ME/CFS, and today I can exercise.