My Chronic Fatigue Recovery
The Short Version: Reverse Therapy completely and fully worked, when nothing else did anything more than provide a temporary amelioration of symptoms. (In this post I outline specifically how RT worked for me.)
Now, because I know what happens when anyone suggests that Chronic Fatigue can be cured at all, much less cured by something that isn’t exclusively focused on physical systems (the standard dismissal is that the person never had chronic fatigue in the first place, because there is no way that mental processes can be causing it), here is the Longer Version, to assure you that I did indeed have chronic fatigue syndrome and that I tried very hard to get better with various approaches considered valid by the chronic fatigue community that I found at Phoenix Rising’s discussion boards (you can read the evolution of my illness there by searching my posts. I registered under the name Sueami):
My chronic fatigue and assorted health issues began in the fall of 2009 with a virus that I couldn’t fully recover from. After six months of lingering fatigue, cough and viral symptoms, I gradually improved and was taking jujitsu classes by the spring of 2011 with my daughter.
After a class in which I decided to run the full warm-up exercises with the rest of the students rather than sitting them out, I collapsed with an unholy exhaustion unlike anything I had ever experienced in my life and could barely drag myself up a half-flight of stairs into my house. I was dismissed by my family practitioner as just having tried to increase my activity levels too fast but the malaise continued every time I even tried to walk for exercise. A naturopath diagnosed me with adrenal exhaustion and after four months of sleeping 14 hours a day and resting for much of the rest of the day and taking various supplements, I again slowly recovered.
I began having increasingly severe gastrointestinal attacks and cut gluten out on the advice of my naturopath. His treatments seemed to improve things for a time, but I would have bouts of exhaustion, post-viral symptoms or digestive upset again and again. In early 2013 another attack of malaise, post-viral symptoms, brain fog, and fatigue struck.
Feeling that the naturopath’s supplements were a dead end, I went to a functional medicine clinic in April of 2013 and after a battery of tests was diagnosed with clinically low vitamin D, a severe candida intestinal overgrowth, and advised to begin a mostly paleo diet and supplement with prescription D and progesterone tablets.
I developed severe vertigo in May, shortly after starting the progesterone, and was diagnosed as having benign positional paroxysmal vertigo. Inner ear re-balancing postures helped resolve the worst of the vertigo so that I could function without wanting to throw up, but I had to constantly repeat them from first thing in the morning throughout the day, if I tilted my head.
Overdoing recovery efforts, like most everything else I overdid in my life, I pursued an even stricter candida protocol than my physician had prescribed, a zero-carb diet with a variety of anti-fungals and other supplements through the remainder of 2013. I also began sunbathing to restore Vitamin D levels, as they were barely budged by the 50,000 iu pill I had taken once a week in the spring.
I developed a squamous cell carcinoma, a type of skin cancer, on my leg in the fall of 2013 and had surgery in early 2014 to remove it. I had been fairly functional throughout 2013 but crashed hard at the end of the holidays and family birthday cycle in January 2014 and suffered unabated chronic fatigue from that point out, sleeping 10+ hours a night, waking exhausted and being hit by waves of unbearable fatigue throughout the day if I tried to do more than very basic self-care, cooking and cleaning. Among myriad other symptoms were significant brain fog, dry eyes and blurred vision.
About the same time my skin cancer was identified, a root-canaled tooth became terribly sensitive to heat and cold. After I healed from the skin cancer surgery, I had the tooth pulled in April 2014, in hopes that removing the decay present there might relieve the fatigue. I also did genetic testing to determine my methylation cycle polymorphisms and began supplementing to support methylation after reading about Fred D. Davis’ dramatic health improvements with folate and methylcobalamin on Phoenix Rising, an online chronic fatigue community.
I found an integrative physician who prescribed methyl b-12 shots for me and advised me to go off dairy and several other foods that might cross-react with gluten sensitivity. He was cautiously supportive of methylation supplementation and said he felt it could help recovery from chronic fatigue but he had never seen it be a cure-all. He was focused on healing the gut and improving absorption of nutrients.
I continued a one-step-forward-two-steps-back decline in the summer of 2014, experiencing chest pain, palpitations and breathlessness upon walking. I began Buteyko breathing exercises, which seemed to help, and I believed that chronic hyperventilation might be causing some symptoms.
Throughout the fall I was semi-functional. I was tested and cleared for lyme disease, lupus and celiac disease by my regular health-insurance funded doctor, who also ordered an echocardiogram to make sure that cardiac problems weren’t at play. I began restricting my diet even further to an auto-immune protocol, out of desperation cutting out all nuts, grains, citrus, gluten, dairy, eggs and any other possible food trigger.
I finally completely crashed to bedbound after overdoing hosting duties at a party for my daughter’s teen friends at winter solstice. I spent Christmas morning flat out in a recliner, with barely enough energy to open presents.
At a loss for any other solution, I followed some advice from a poster on Phoenix Rising who speculated that extreme rest might allow the mitochondrial energy production systems to renew and rebuild. I followed a plan of no more than 4 hours a day of being upright and doing any mental activity, for no more than 20 minutes per “active” session. My husband made most of my meals for me and the kids took care of themselves, and I tried to meditate or just rest for 40 minutes of every hour.
I also began following a well known ME specialist, Dr. Myhill’s supplementation protocol for ME/CFS.
By the beginning of February, I began to feel a bit more energy and could be up and about without debilitating fatigue or weakness. On a day when I felt almost normal, I did two 10 minute bouts of sweeping, once in the morning and once in the afternoon, just to feel like I could be of help, and walked down the street a few houses and back with my family that evening. Within two hours, I was completely flattened by a post-exertional malaise and had to crawl to bed.
From that point on, I had significant autonomic disregulation. I could not sit up in bed without my heart rate shooting up to 120 bpm and skipping beats many times a minute. Walking slowly to the bathroom or kitchen would send it up to 135 or more, with more chest pains and arrhythmias, and the word from various CFS sufferers on Phoenix Rising was that we needed to keep our heart rates below anaerobic levels or we would further damage the mitochondria (and with CFS we went into anaerobic functioning at a much lower level than healthy people, they said), so I spent my entire day laying flat in bed.
The advice was also to limit mental activity as well, as too much talking or thinking could cause some people to crash as well. I spent day after day laying flat on my back in bed, allowing myself short bouts of time on the internet and chats and snuggles with my kids that I timed to keep under 20 minutes.
I laid flat on my back for the next three weeks, unable to focus on anything for more than 10 or 15 minutes at a time, my sleep becoming more and more disregulated. I wouldn’t be able to fall asleep until 12 or 1 or 2 am, but would wake with the sun at 7 am and the fatigue and exhaustion would become even more overwhelming. Panic attacks became increasingly frequent, and I deeply regretted not having gone to see a Chronic Fatigue specialist while I was still well enough to travel (the nearest recognized specialist was in Northern California and I am in Colorado).
I had put off a regularly scheduled follow-up visit with my integrative physician for two months due to my increasing debilitation, and I was too ill to come to his office for the hour-plus visit that he wanted before he would adjust my supplement regimen.
Worried about how much I had declined, my physician agreed to consult with me via the phone, as I was unable to leave the house without my legs giving way and my heart rate sky rocketing and wildly irregular heartbeats. He asked me to get an array of blood work done first, and after three weeks in bed, I felt I could risk the ride into town. I lay reclined in the car seat while my husband drove me to a blood draw site where I had to use a wheelchair to get from the car to the lab and back. (That blood work came back almost completely normal, with the exception of low magnesium.)
During our phone consultation, Dr. Henke told me he did not understand how I could be so ill when I was doing everything right and the blood work looked so solid. He urged me to stop nearly all of my dozens of supplements (and to ratchet back on the potassium and magnesium I was taking in large doses because they were the only things that seemed to help my heart arrhythmia.) I was taking several dozen types of supplements each day, each added in as I tried a new protocol or heard of a new possible avenue for reducing symptoms, and he felt they were disregulating my digestion to the point I was unable to absorb proper nutrition.
He also suggested I read a book, The Last Best Cure, written by a science journalist with multiple diagnosed chronic illnesses who tracked her progress with her Mayo Clinic physician and found a roughly 70 percent improvement in her various conditions and overall quality of life over the course of a year by adding mind-body practices such as meditation, yoga, acupuncture and talk therapy.
The book was in many ways too vague a prescription but it did lead me to start considering nurturing my mental health and not being afraid to add in a few low-impact, fun things to my day (letting myself surf more on the Kindle tablet or watch a cartoon with my daughter), and my energy levels started to improve enough that I could search up chronic fatigue recovery stories episodically on the kindle. I began finding a number of stories in which people had recovered fully and completely, something that was deemed impossible at Phoenix Rising.
Some people had recovered by throwing themselves into yoga, one young woman had left a career she disliked and following a childhood dream and found a full recovery, and a number of people had posted on youtube and on blogs about recovering via Reverse Therapy, which I had read about the previous summer. At the time, I had asked about it on Phoenix Rising’s discussion boards.
Reverse Therapy, Mickel’s Therapy and any other process (such as yoga or a mysterious treatment called Lightning Process) by which some individuals had recovered completely from CFS were thoroughly derided and dismissed by longtime CFS sufferers at Phoenix Rising, who felt they were either scams or trying to portray chronic fatigue as entirely a mental problem. People who testified that they had recovered fully were deemed never to have truly had chronic fatigue by the most vocal posters at Phoenix Rising, who were the only people I knew who had chronic fatigue, so I took their word for it. I had to become completely non-functional before I was willing to consider such an “alternative approach” (though I look back at all the things I did try and find them to be vastly more speculative, costly and alternative that Reverse Therapy).
I was so desperate and so encouraged by these testimonials that I contacted a practitioner in England named Lyn White and she sent me the e-book. I read it through in a day and began trying to implement the basic advice. I saw immediate and dramatic improvements. After a week, I was able to go out of the house for a drive with my family, to enjoy a slow, short walk by a lake and to eat fries at a nearby diner.
I deeply regret losing those months of my life and descending into sheer hell before I was ill enough to be willing to make an appointment with Lyn, a former nurse who was stricken by ME and eventually recovered through Reverse Therapy and retrained as a practitioner.
I hope that my story will help give other sufferers the encouragement to give Reverse Therapy a try. (I suspect Mickel’s Therapy would work as well, and perhaps even what is known as Lightning Process, which certainly has its share of strong testimonials, despite the bizarre secrecy around the details of the process.)
Over the course of the next five months I had five or six coaching sessions with Lyn via Skype and returned to my full activity levels. I can now exercise aerobically, drink moderate amounts of alcohol again (for the last several years, even a few sips of wine would quickly make me feel almost poisoned) and I am active all day, gardening, eating whatever I like (I’ve gained back the 25 pounds I lost over the last several years, but I don’t mind at the moment, it is such a joy to have a normal relationship with food again.)
It was a straightforward process but difficult sometimes to muster the willpower to follow it. It also took me a couple of months to reset my central nervous system and turn off my chronically triggered sympathetic nervous system and during that time I had to switch up my activities frequently between various pleasant and stimulating activities, and to sit in a body-focused meditation when symptoms arose, to see what was triggering them.
Reverse Therapy’s basic tenet is that our illnesses and symptoms are a result of a chronic over-firing of the sympathetic nervous system, the fight-or-flight response, until it gets stuck in the on position and begins disregulating various other endocrine systems.
It all starts when we override our deeper needs, interests and desires, in the name of filling a particular role (nurturing mother, good wife, good child, standout employee) or making sure people like us, or feeling forced to tolerate ill treatment from others, a job, or other circumstance in our life that is not in our best interest.
The older, deeper part of our brain, tasked with keeping us safe and urging us to realize our full potential, is able to communicate with us only via emotions and hormone systems. It is governed by the hypothalamus, which sends alarm signals that our frontal cortex, the thinking mind and the part of our brains that absorbs cultural and social conditioning on how we should behave, insists are meaningless and should be ignored. For months and years we persist in tolerating various behaviors, beliefs and activities that are not serving us or that at some level feel unsafe to us, and the hypothalamus ratchets up the symptoms higher and higher until they are impossible to ignore and are disregulating various systems of the body.
We might have overextended ourselves and ignored our own needs because we felt we had to fulfill a particular role in a particular way or because we feared rejection from family or friends. The reasons that we have a chronically on fight/flight/freeze response vary from person to person but fall into broad patterns that are outlined in the Reverse Therapy ebook.
Mine had to do with pushing myself constantly in ways large and small, to do things completely, as big as possible, and perfectly, and all by myself. I didn’t ask for help enough, I threw myself into my parenting role with too much energy and not enough self-care, I didn’t ask for help or appreciation or pampering, I took on responsibility for other people’s emotional reactions, and I denied my own desires and wishes (because my kids’ came first or we didn’t have enough money or I wasn’t working so I shouldn’t spend) until I had no idea what made me happy, what sparked joy for me anymore. I was too tired and ill to reach out to others socially and all my attempts to get well, from resting to dietary restrictions, only removed the last remaining sources of joy and pleasure from my life. No wonder I declined as precipitously and completely as I did.
I now feel virtually normal. I do have small flutters of a remaining symptom, a heart palpitation of sorts, and an occasional sense of the deep fatigue that once plagued me. They arise when I get too caught up in mental stories or reactivity, or am pushing myself in some way I haven’t yet become self-aware about.
I am still working on recognizing and changing old behaviors; I will find myself pushing to do more than I want to do, or trying too hard to please my family or guests, or just waiting for my kids to need something from me instead of going out and doing something that feels fun or challenging to me. These are old habits and I am confident that I will be able to rewire them. My remaining symptoms are now just a light reminder that I am falling into a habit pattern and need to wake up.
I plant to return to work soon, though I may wait until after the holidays, as we have all four of the birthdays in our family, both grandmothers birthdays and thanksgiving and Christmas holidays with the extended family to navigate over the next few months.
I used to think I suffered from Seasonal Affective Disorder or low vitamin D because my symptoms usually flared in winter. Now I realize I was felled by all the extra stress I put on myself to make everyone’s birthdays and Christmas perfect for them. I’m still working on releasing that sense of obligation to make the holidays happen for extended family and make them exactly what everyone wants here, but I fully expect to have a lovely winter for the first time in six years.
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I am so incredibly grateful that many dozens of other sufferers were willing to post their stories of recovering from chronic fatigue, that I knew I wanted to do the same, as soon as I felt well enough to revisit the awful months and years that I spent descending further and further into unreal exhaustion, autonomic dysfunction and myriad other symptoms that chronic fatigue syndrome encompasses. I wanted to encourage others who share my symptoms to dive into the therapy through which I recovered, or any of several similar therapies that I expect function in a similar way.
I have written a second blog post here that is a more detailed account of my Reverse Therapy experiences and I will soon post a compilation of recovery stories that helped me decide to give RT a try.
I will offer a bit more background about myself. I am a 50-year-old homeschooling mother of two teenagers. In my life pre-kids, I was a daily newspaper reporter for nine years and my beats included education, the environment and health. I then became a university spokeswoman for another five years, until I had my first child.
Over those 14 years, I had walked away from a high stress career for more sustainable employment, began a fairly regular yoga practice, became a Vipassana meditation practitioner and delved into the voluntary simplicity movement with my husband, where we consciously considered and shaped our spending and earning decisions to maximize our time with the two children to come and all that felt most meaningful to us.
I looked like a very self-aware, balanced, mindful person, acquiring tools to maintain my physical, psychological and spiritual health and shaping my life to be meaningful and self-sustaining. I was completely oblivious to other mental and physical habit patterns that were slowly but steadily eroding my resilience and energy levels.
For now, I am not enabling comments on this blog. I have no desire to argue with other CFS suffers about whether I had chronic fatigue or whether I really recovered. My first posts at Phoenix Rising about my recovery taught me what response I might expect. I do plan to compile a list of the many examples of chronic fatigue recovery stories out there, to encourage other sufferers to pursue their own cures.
John Eaton, the psychologist who created the Reverse Therapy process, has made available a free e-book detailing the process. Here is one place it can be downloaded in PDF form, for you to understand the theory and methodology.
I wish everyone reading this the courage to explore a recovery therapy that embraces the mind-body connection, and I wish you all a return of abundant health and a fulfilling, joyful life.
PS. A note about the dates on this blog: WordPress has a ridiculous flaw that won’t let you order your posts in anything but reverse chronological. Their only suggestion is to change the publication dates post-publishing to change the sort order. So while it now looks like I wrote this entire blog over a week in September 2016, in fact, I wrote the first five posts of this blog in October, November, and December of 2015, and in January and June of 2016.