Up from the Ashes: James’s Severe ME/CFS Recovery/Recovering Story

My illness started in 2009 at the end of my Residency medical training as an emergency room doctor. I worked as a California Board Certified E.R. Doctor before I collapsed at work in 2015 and ended up bedridden and incapacitated.

Prior to becoming ill, I was in excellent shape. Pre-med school, I worked 50 hours a week training clients as a fitness trainer. My own personal activities included hitting the gym, alpine and cross country skiing, long mountain hikes, beach jogs and swims, rollerblading, and mountain biking. I helped pay my way through medical school as a professional model. I was the picture of health. Nobody, including me, would have ever thought that I, of all people, could ever have become so ill.

 

I can identify with what Whitney Dafoe and others are going through on a very real and deep human level: I was mostly bedbound for almost 6 years, clinically declining all the time, wearing earplugs constantly to block all sounds and a black T-shirt over my eyes because I could not tolerate light or visual stimulation. I could only wear shorts because my body was so painful to touch/pressure. I could only whisper to my mom that I was “dying,” and I used hand gestures for things I needed.

If I pushed myself too much during the day, I would enter a state I called my “energy crashes.” I attempted to explain through scribbling to my mom that this was known as post-exertional malaise and it would take me at least 2 to 3 days to recover. Living within such an extremely limited envelope of energy and functionality was beyond challenging and overwhelming — it was pure suffering.

I endured massive digestive issues, food and chemical sensitivities, and many other symptoms including fatigue, weakness, aches, muscle cramps, joint pain, unusual pain, ice pick pain, headache, red eyes, blurred vision, tearing, sinus problems, cough, shortness of breath, abdominal pain, diarrhea, morning stiffness, memory, focus, concentration, word-finding issues and confusion, disorientation, skin sensitivity, mood swings, sweats (esp. night sweats), temperature regulation problems, excessive thirst, static shocks, numbness and tingling, vertigo, metallic taste, and tremors. At the age of 43, my formerly brown hair started turning gray and white. I dropped from a fit 220lbs to 149lbs. My mother’s living room became a makeshift hospital.

Thinking was such a huge issue. I had to apply my meditation techniques and just focus
on my breath throughout the day and night just to slow my mind down and conserve energy. My breathing techniques were also a small escape from the sick feeling I experienced constantly.

Over time, I have visited with over 42 physicians, including 2 affiliated with Stanford, who specialized in CFS/complex diseases. I have undergone every sophisticated test in the world: my blood was sent to Germany; I’ve had surgical procedures; stellate ganglion blocks; IVs; central lines; ketamine injections; MRIs of the brain and CTs of the body; numerous trial medications (Abilify, hydrocortisone, and others), many supplements and IVs. The list goes on and on.
 

Either the treatments made me worse or had no effect.. Attempts to treat inflammation with Abilify, or my extremely low cortisol levels with hydrocortisone, for instance, made me worse. No etiology of my “root” problem was ever found. All I was left with was the term “ME/CFS” – a term, it ended up, that helped me not at all.

I needed a totally new approach to my health. Thankfully, I found it and that made all the difference.

Continued...