I have had a chronic health condition for a quarter of a century that, due to lack of research, continues to be shrouded in mystery.
Chronic fatigue syndrome (CFS) is one of its foolish names, a wastebasket diagnosis that some doctors hand out when they don't know what's wrong. And some toss this label your way when they don't care to take the time to try to find out.
Myalgic encephalomyelitis (ME) is another name, which may or may not apply to me.
The condition is often referred to by an acronym of the mashup of these two names which is ME/CFS.
For years, there has been ongoing controversy and attempts to settle on a name that properly acknowledges the severity of this condition. As with everything else that remains unresolved concerning this illness ... we cannot even get a name that works.
Because there is so little known due to a pitiful lack of research, and because my symptoms did not show up in my pristine test results, it's a moot point as to what I call it. I'm really only interested in being rid of it.
The couple of times I tried the pharmaceutical approach, the drugs were either useless or made my health worse.
And with so many question marks as to my (non)diagnosis, it seemed like folly to me to throw drugs at it. If we don't know what is the matter, how dangerous could it be to medicate like throwing darts blindfolded.
If you have been diagnosed with ME, CFS or ME/CFS, and your experience is different from mine, or your conclusions differ, I wouldn't worry about it. Who knows whether we actually have the same illness?
All I can tell you about is my own ME/CFS experience. And my experience was that conventional medicine has been a complete failure for me.
I had gone for many rounds of different tests to a variety of specialists, all of whom found no problems. I had CT scans and an MRI, I went for an EEG and an EKG. I saw a couple of neurologists.
I had an interesting appointment with an ophthalmologist. He found nothing wrong with my eyes, but suggested I do some research on the word "proprioception," which has to do with the body's awareness of its position, motion, and equilibrium — all of which were malfunctioning for me.
He had scathing words for my lackluster family doctor. The ophthalmologist told me that even a child could see that my problems were neurological, and he wrote my GP a letter spelling it out for him.
The only things that have helped me on my road to recovery have come from the arena of alternative medicine. If not for alternative medicine, I would not be writing this article, I would not be writing at all. I also would not be walking and talking like a normal person.
I went low-carb in 2002 and that was life-changing for me. Within weeks my sensation of vibrating had diminished, my head fog had decreased, my sense of panic and anxiety became manageable, and my stamina had increased.
Added bonus — I dropped 50 pounds I most assuredly did not want over the next few years, without ever going hungry.
But the change in diet only took me so far, and in fact by 2004 I began to develop some new and nasty symptoms. Severe vertigo made its appearance on my 25th wedding anniversary with such force, I thought I was having a stroke.
I was subject to constant sore throats and earaches. Pain, swelling and weakness attacked muscles and joints without warning, leaving me incapacitated for months at a time. My hands hurt so badly I couldn't take the lid off a jar or hold a pen.
I could not stay on my feet for more than a few minutes at a time. I had a chair that would recline, and I'd collapse in it if I had to be up for more than a couple of minutes, and pant for air for half an hour or more while I tried to recover from the exertion.
I had to be alone most of the time because audio and visual sensory overload would hit within minutes. At my worst, I spent up to 14 hours a day in bed.
I saw a naturopath, Dr. Kelly Upcott, from 2007 to 2015 who introduced me to things I'd never heard of before. Some things were for a period of time, and others I continue to this day.
She was not concerned about what we should or should not call my condition. She just started working on the worst of my symptoms and rebuilding my broken health.
Vitamin B12, vitamin D, omega-3 oil and a tincture she called Deep Immune became supplements that I would choose over food if I had to, because taking them on an ongoing basis seems to make such a difference in my stamina, balance, cognitive ability and overall well-being.
Other treatments were extremely helpful for a period of time. Acupuncture kept a chronically inflamed arm functioning from month to month. Castor oil applied to affected areas keeps me from being crippled as long and as frequently as I used to be.
I tried an array of nutritional supplements, used ear seeds and acupressure, and juiced vegetables. I drank liquid chlorophyll, and assorted types of teas.
Several weeks of nasal lavage removed the last vestiges of the vertigo that had caused such limitations for five or six years. I no longer felt like I was going to bump into things, no longer felt like I was vibrating. Visually, the walls and floors no longer seemed to threaten to move in and rise up on me. My ability to concentrate and comprehend rose significantly.
I saw several chiropractors, each of whom had different methods, and found that chiropractic was often a quick and effective treatment for the debilitating inflammation that could cripple me for months at a time.
Staying on a low-carb diet, avoiding sugar and grains in particular, has helped to prevent a resurgence of debilitating symptoms such as cognitive fog, parasthesia (fancy name for mysterious physical sensations), weakness, fatigue, anxiety and panic attacks. I don't feel like I am starved for oxygen and don't have to suck in great gusts of air anymore.
I no longer felt like I had brain damage. No, let me correct that. I felt like I had less brain damage than previously. I can't say that this sensation is completely gone. But my cognitive difficulties have shrunk to a much more manageable size, and it's much easier to work around it than it used to be.
Life was fragile, precarious and terrifying at the time I first went to Dr. Upcott. And I am here to tell you that within six months I was experiencing a taste of normalcy. The only changes in my life were my naturopathic treatments.
Improvement was not orderly, and did not continue in a progressive pattern. For every step forward out of ME/CFS, it seemed like there was too often a couple of steps backward. But as I persisted with my treatments, I continued to slowly get better.
And I am still recovering.
I don't know what happened to me 25 years ago, but I'm thankful to have reclaimed as much as I have. Ten years back, I was convinced that my chances for a decent life were over. As time goes on, I'm still regaining ground that I lost so long ago.
If it had not been for Dr. Upcott and alternative medicine, I don't know where I would be now. I am convinced I wouldn't be writing the story of my experience now. I'd probably be in bed.