Dr. Eleanor Stein's Story
Falling Ill during My Residency at Age 25
As a child and teen, I was healthy and active, but I always suspected something was off. I got dizzy and motion sick often, and I couldn’t do anaerobic exercise to save my life. I needed more sleep than most of my friends. In medical school and my internship, I sensed it was harder for me to work a 36-hour shift than it was for my colleagues. It was hard to know what exactly was off, but I had felt that I was weak or that there was something wrong with me.
I developed a flu-like illness in the second year of my psychiatry residency, but the flu never fully developed, nor did I recover. I was unable to continue my residency training and, a few months later, was given time off. I consulted a specialist who told me that I was suffering from depression. Antidepressants were prescribed. Being a psychiatry resident, I sensed that my experience was different than what my patients with depression described to me. I didn’t have the language to accurately describe what I was experiencing or other people with whom to compare notes, so I couldn’t be certain.
The next 8 years of my life were horrible! I often slept 16 to 20 hours a day and woke unrefreshed. My cognitive function was so poor that I couldn’t do my taxes even though I only had one line item: my residency income! I felt dizzy, and my heart raced whenever I sat or stood. I frequently fainted, taking days to recover. I had developed severe abdominal pain and diarrhea in response to eating and/or exercise. I had always been somewhat sensitive to smells and chemicals, but it worsened. I felt extremely unwell in most settings outside of where I lived. I had had chronic widespread pain since my teen years, and that increased to the point where any repetitive activity became excruciating and exhausting.
From Hopelessness to Self-Management for ME/CFS and FM
I became ill before there were any experts in these conditions. Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) had been defined only the year before, but everything I read about it was discouraging — full of statements that questioned the existence of the disease. Fibromyalgia (FM) was also considered suspect by many health care professionals.
I had no idea what was going on with me, nobody who could help me, and had no effective management strategies. I felt hopeless.
In 1997, 8 years after becoming ill, a colleague left a magazine article on my desk about a physician in Calgary, Canada, who seemed to know something about chronic fatigue syndrome. I immediately called her and asked if I could come to Calgary for a few weeks to sit in and learn from her. She generously agreed, and I spent 3 weeks in her office listening to patient after patient describing symptoms and experiences that were similar mine.
By the end of that time, I knew what I had. This physician, also a woman with lived experience, was a bit ahead of me in her learning, and she gave me some very useful tips. I began taking medication to raise my blood pressure and volume. I started a low dose sleep medication, and I learned the basics of pacing. Things started improving.
When I felt well enough to work overseas, I got a contract as a child and adolescent psychiatrist in Australia. While there, I connected with Christine Hunter, the mother of a severely ill daughter, Allison, who subsequently died from Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). Christine kindly introduced me to her circle of biomedical researchers, and I learned that there were objective findings. Beyond a shadow of a doubt, ME/CFS and related disorders were valid biomedical conditions.
Back in Canada, I decided to devote my career to helping people like me with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), fibromyalgia (FM), and environmental sensitivities (ES). I dove into the medical literature and absorbed everything I could find. I studied environmental and functional medicine. I visited many experienced practitioners to learn their protocols. I did hundreds of functional medicine tests and tried dozens of protocols. Although some of the protocols helped a bit, temporarily, none were game changers. Most benefits were modest at best and wore off after a few months.
Through trial and error, I learned how to fine-tune my self-management to optimize my health and my ability to function. I remained unable to work full time, however. My cognitive window was from about 11 a.m. to 6 p.m. Then I had to rest. I continued to feel miserable most of the time and often wondered on bad days if I could keep up even this part-time pace.
Neuroplasticity as a Tool for Recovery
Years later, I heard about emerging programs focusing on neuroplasticity as a tool for recovery. I mistakenly confused neuroplasticity with psychological causation, and I dismissed these programs.
Nevertheless, in 2014, I desperately wanted to take a trip to Africa and had no idea how I would manage with all the chemicals and fragrances I would be exposed to. I registered for a neuroplasticity-based program, followed the instructions to a T, and was able to increase my exposure with no symptoms. When I went to Africa 6 months later, I had no issues with the many exposures to chemicals and fragrances. Since then, I’ve continued to work on multiple chemical sensitivity (MCS) symptoms, and now consider myself 100% recovered. I can go anywhere without any worries.
This experience encouraged me to learn more about how neuroplasticity could help people with a wider range of symptoms. I began offering groups in my medical practice using the strategies I was learning from multiple neuroplasticity authors and online coaches. People began making remarkable recoveries even after decades of severe, unremitting pain, chemical sensitivity, and depression.
These recoveries made me a true believer that we have more control and influence over our biology and physiology than medical school teaches. In medical school, self-management strategies were barely mentioned and, if mentioned, were an afterthought to the use of so-called “legitimate interventions” like medications.
Hopefulness: A Breakthrough at Last!
In September 2017, after 27 years of disabling fatigue, I all of a sudden realized that my health had improved. I was waking up earlier, working more hours in the day, enjoying activities in the evenings, and going to bed after 9 p.m. My cognitive function improved, my sleep was more restorative, and I was able to increase my physical activities without triggering post-exertional malaise.
I was not doing any fancy protocols, taking any new supplements or IV treatments or trying any new medications. What was striking was that, at the time, I was paying close attention to self-management, fine-tuning my diet, and committing to a daily neuroplasticity practice. I realized that what I had been reading about the power of self-management was true — at least in my case.
I began changing the language I used with my patients. Instead of agreeing with them that they were unlikely to get better, I began challenging this belief using my own experience as an example. I began emphasizing the power of lifestyle choices like diet, pacing, sleep regimes, and mindset. I began teaching my patients strategies to calm the nervous system and rewire their brains. Patients, who had been plateaued for years, began to improve. People began reporting better sleep; more energy; fewer crashes; less pain; less sensitivity to chemicals, light, and sound; and an improved mood and outlook. I observed that what I had been learning seemed to be working for many, many people and not only for me.
Hope for Others: Recovery is Possible
I’ve spent 33 of my 35 years of medical and psychiatric practice living with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), fibromyalgia (FM), multiple chemical sensitivities (MCS), and several related conditions. Now you can see why I’ve spent the last 23 years devoted to helping people with chronic and complex diseases.
It took me 27 years to substantially recover from my severe symptoms. My goal is simple: to help people improve their health much more quickly. I’ve put all of what I’ve learned into my online courses.
Hundreds of people have participated in these courses, and they too are reporting significant improvements in health and function. It’s so gratifying to be able to share what I’ve learned with others, to provide them with the tools they need to improve their health and enjoy life more.