By Dan Neuffer, Buzzworthy Blogs
The year before my Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis) and Fibromyalgia started, was a very rough year, during which I nearly lost my wife to childbirth. I was hard at work and also working on a side project at home, all whilst undertaking an intense exercise program when things first started to go wrong.
When a colleague’s husband came down with the chickenpox, I quickly organised a vaccination, because getting sick was the last thing I needed. However, within a week of receiving the vaccination, my first CFS/ME symptoms appeared, which were extreme fatigue that affected my ability to walk.
Fibromyalgia and ME/CFS Symptoms
As time went on, my list of symptoms grew to a staggering range of classic ME/CFS symptoms. The main ones included ongoing extreme fatigue not alleviated by rest, bouts of fever and other flu-like symptoms, gastrointestinal symptoms as well as night sweats, cardiac symptoms, orthostatic hypotension, allodynia, excessive urination at night, salt cravings, and neurological symptoms such as brain fog. These symptoms changed over the years and my fibromyalgia pain became more prominent during the second half of my six-and-a-half-year illness.
Like many others, I soldiered on as best I could until eventually I had to work part-time. For extended periods of time, especially during the later stages of my illness, I was unable to work at all.
I often say, “Only a CFS/ME/Fibro sufferer knows the feeling.” This is probably one of the worst things besides the actual illness. People often think they understand you because they have experienced exhaustion or fatigue, but CFS/ME/Fibro takes it to a whole new level. And like any chronic illness, over the years it can become difficult to cope with all the challenges that brings.
But it wasn’t just the illness that was a problem for me; one of the worst things was not knowing why I was ill or what was causing the problems. For several years I thought it was some mystery virus or some other sort of illness. It was only after numerous exhaustive (and exhausting) investigations with multiple doctors that it was clear that I had CFS/ME/Fibro. Whilst I got some comfort from at least having a label, given the official lack of understanding and poor prognosis, the diagnosis was a double-edged sword.
By year four, I managed to somewhat steady my cycle of symptom flare ups and basically resigned myself to having a lifelong condition and I tried to live with it as best as I could. Coming to accept this actually gave me some sort of peace, but then my health took a drastic turn for the worse. This was my turning point.
I have heard it said that things have to get worse before they get better. Well, there was no “getting better” in sight and all I managed to do was “get worse” over time, even though there were some moments of respite.
However, after my illness reached its low point, I disciplined myself to stop reading about the usual CFS/ME/Fibro information out there and to stop that rollercoaster of hope and disappointment by trying treatments that never worked out for me. I had tried everything from antibiotics, anti-Candida, anti-parasite, anti-inflammatories and anti-virals to treatments by alternative health care practitioners such as acupuncture, supplements, and some treatments that I don’t even care to mention. Instead, I wanted to try to find out what was really going on, what was driving the illness. So I started my own research project by collating commonalities and differences amongst sufferers, and by investigating what could be causing some of the measurable physical changes.
Given that I don’t have a background in medicine or biology, and that I was still very ill and had some difficulty concentrating for any period of time, this was a difficult and frustrating journey for me. However, soon, more and more pieces of the puzzle started to fall in place until I started to form a clearer picture of this illness. I came to the conclusion that the only thing that could be causing ALL the symptoms, was a disturbance to the Autonomic Nervous System (ANS) which acts as the control system of the body affecting everything from heart rate, digestion and breathing rates to salivation and perspiration.
Whilst my confidence in the validity of this hypothesis grew more and more over time as I linked the classic ME/CFS & Fibromyalgia symptoms to the ANS, especially as I discovered other researchers who had similar views on significant aspects, I realized that translating this knowledge into my recovery was by no means certain. I was certain that the ANS dysfunction was the root mechanism for the illness, but because I had not heard of anyone else making recoveries at that time, I wasn’t sure if all this understanding could translate from theory to practice.
My recovery came in stages and actually included many treatments that I had previously used without success. I think the biggest realization was the importance of having a comprehensive plan as opposed to the shotgun approach. Also, I recognized that persisting with the strategies until I actually recovered was absolutely critical. It is so easy to give up when you have setbacks or simply don’t see the progress.
Initially I healed my gut under the guidance of an integrative doctor with a range of specific probiotics that I was missing and a range of other specific supplements including digestive enzymes, Phosphatidylcholine, and L-Glutamine. But most importantly, there were very significant changes to my diet to eliminate irritating foods such as grain products (wheat, rye and barley in particular) and dairy products. My digestion improved in a matter of months, but full function didn’t return until I made a full recovery due to the ANS connection.
I also used various supplementation to improve my metabolism such as the B vitamins, CoQ10, and a range of trace minerals that I was deficient in, plus of course significant amounts of magnesium. All this also helped with my detoxification and reduced the oxidative stress I was experiencing. I treated a variety of the common dysfunction from CFS using reasonably well-understood treatments, but my new understanding allowed me to avoid those that I believed would be detrimental to my recovery such as aggressive hormone treatments or the taking of stimulants.
One of the key things for me was also creating a healing environment. I made lifestyle changes and meditation also played a big part during my recovery. As I progressed, I used a range of other strategies to address the ANS dysfunction (you can access my Free Video Explanation of the central mechanism I describe here. It was a two-step approach, which was made up of first drastically reducing the triggers on the ANS and then taking advantage of neural plasticity to “rewire the system” to bring back normal functioning. Besides all the physical treatments and lifestyle and dietary changes, I used a variety of mental techniques that can help influence the nervous system.
All in all, my recovery started after being ill for five years and took me around 18 months. I made some very significant progress in a matter of weeks but other improvements took many months— and of course, there were setbacks along the way, which were often very disheartening.
My plan initially was just to get back to my life and do some catching up on all aspects of my life. But after not having met a single other person with CFS/Fibromyalgia in over six years, I suddenly started to meet them all over the place.
I quickly realized that something so complicated needs a structured explanation—so I decided to write a short book to explain my research. I believe that the key to recovery is tailoring a plan that addresses the underlying triggers particular to each person experiencing ME/CFS/Fibromyalgia.
What is my life like now? Busy! But I have learned to live a balanced life and I appreciate every day I have. I am living a full life, working full time, but I am also enjoying time with my wife and our two small children (those trips to the park or the beach have taken on a whole new feel since my recovery). And I am exercising again—never thought I would see the day.
Goodness, I can even enjoy a few glasses of wine with dinner or the occasional Oktoberfest again—who would have thought that after years of barely being able to take a sip of alcohol without falling into a deep hole, that this was possible?
My message to all CFS/ME/Fibro sufferers is don’t lose hope—recovery is possible, even if not easy.
Because I realize the importance of hope, I also share ME/CFS/Fibro recovery stories including interviews. You can read more about my journey on my website CFSUnravelled.
In CFS Unravelled he shares an explanation that demystifies how people get ill in so many different ways and how people recover. The book shares a message of hope for people with this illness by sharing a deeper understanding that brings the great work of medical experts from around the world together into a practical framework that the layperson can understand. It explores what people that recover have in common and how you can seek effective help from various medical professionals to maximise your efforts towards recovery. There are no guarantees for recovery, but recovery is possible.
Submit your story or essay to Buzzworthy Blogs.
- 13 Banned Foods Still Allowed In The U.S.
- A Scary Look Inside The McRib
- Dangerously High Pesticide Levels In Brand Name Tea
- ‘Natural Flavor’ Comes From A Beaver’s Butt
- 8 Foods People Think Are Healthy (But Aren’t)