My Story – Dan Neuffer’s ME/CFS Fibromyalgia POTS Recovery Story

I thought that the best way to start my ME/CFS/Fibro/POTS Recovery Story, was at the beginning.

A couple of years before my the illness started, I made a major career change from my science work as a physicist specialising in lasers and optical systems to a technical specialist in the financial services industry.  The change was driven by my decision to get married and start a family and not wanting to have to chase work interstate or overseas.

Then, following a very rough year during which I nearly lost my wife during the birth of our son, I was working hard on my career change and had also started another major undertaking outside of work.

When a colleague’s husband had come down with the chickenpox, I quickly organised a vaccination as time off sick was the last thing I needed.  However, within a week of receiving the vaccination, my first ME/CFS symptoms appeared, which were extreme fatigue affecting my ability to walk.

Dan’s Experience with ME/CFS/Fibromyalgia/POTS

My illness quickly morphed into a large range of classical ME/CFS symptoms.  I suffered from a staggering range of symptoms over the years, but my main ones included ongoing extreme fatigue not alleviated by rest, bouts of fever, pain 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 fibro fog.  My symptoms changed over the years and my fibromyalgia pain symptoms became more prominent during the second half of my illness.

Like many others, I soldiered on as best I could until eventually I had to work part-time and later on was unable to work at all for extended periods of time, especially during the later parts of my illness.

I often say – “Only a CFS/Fibro sufferer knows the feeling”.  That was probably one of the worst things besides the actual illness.  People often think they understand you because they have experienced exhaustion or fatigue, but ME/CFS 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.

It’s the same with pain, I was able to take it in my stride for the first 3 years, but in the fourth year when the pain became a daily experience outside of my flare-ups, coping with it became very difficult for me.

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 (& exhausting) investigations with multiple doctors that it was clear that I had ME/CFS.  Whilst I got some comfort from at least having a label, given the official lack of understanding and poor prognosis, it was a double-edged sword.

Coming into my 5th year of illness, I had managed to somewhat steady my cycle of symptom flare-ups and basically resigned myself to this being a lifelong condition. I just wanted to try to live with it as best as I could.  However my base-line, health had declined and Fibromyalgia and POTS had become part of my condition. Coming to accept this actually gave me some sort of peace, but then my health took a drastic turn for the worse, I was pushed towards my turning point.

Dan’s Recovery from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis/Fibromyalgia/POTS

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 is “get worse” over time, even though there were some moments of respite.

However, after my illness reached its low point, I had dedicated myself to stop reading about the usual CFS/Fibro/POTS info out there, to stop searching for other’s recovery stories and to stop that rollercoaster of hope and disappointment of trying treatments that had never worked out for me.  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 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 what goes on with ME/CFS, Fibromyalgia and POTS.

My confidence in the validity of this hypothesis grew more and more over time, especially as I discovered other researchers who had similar views on significant aspects of the explanation. However, I realised that translating this knowledge into a recovery was by no means certain.

My recovery was in stages and actually included many treatments that I had previously used without success.  I think the biggest realisation was the importance of having a comprehensive plan to see through to completion as opposed to the shotgun approach.

Initially I healed my gut and changed my diet under the guidance of a very skilled doctor.  I also used various supplementation to improve my metabolism, my detoxification, and to reduce the oxidative stress I was experiencing.  I treated a variety of the common dysfunction in CFS/Fibro/POTS using reasonably well-understood treatments, but my new understanding allowed me to avoid those that would be detrimental to my recovery.

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 additional brain-training strategies to address what I believe to be the central cause of Chronic Fatigue Syndrome, Fibromyalgia and POTS.

But without a doubt, having a deeper understanding of how Chronic Fatigue Syndrome, Fibromyalgia and POTS works was the absolute key to my recovery.  (You can get access to the Free Video Explanation HERE)  That is why I don’t always focus on talking about exactly what I did, because whilst much of it is very relevant to most people and already widely understood, I believe that the KEY TO RECOVERY is tailoring a plan that addresses the underlying triggers particular to each CFS sufferer.

All in all, my recovery started after being ill for 5 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 was often very disheartening.

Dan Now that he has recovered from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis/Fibromyalgia/POTS

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/POTS in over 6 years, I suddenly started to meet them all over the place.

I quickly realised that something so complicated needs a structured explanation – so I went to write a short book to explain my research to post somewhere on the internet.

However, trying to put it into words and finding the right way to share my understanding turned into a major project!  When the book was finally finished (CFS Unravelled), I realised that I had so much more to share, but it wasn’t easy.  At first, I tried sharing the book for free, but stopped when I realised that something given for free isn’t valued and often isn’t even read.  (that’s ignoring the fact that without spending the time/money to market the book, hardly anyone finds it anyway – it turns out a site on the internet really like finding a needle in a haystack!!).  So I have kept changing my strategy and continue to give it my best efforts to give others the same opportunity for recovery that I have had.

What is my life like now?  Busy!  But I have learned to live a balanced life and appreciate every day I have.  I am living a full life, working full time, but also enjoying time with my wife and 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 even enjoy a few glasses of wine with dinner or the occasional Octoberfest 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/Fibro/POTS sufferers is don’t lose hope – recovery is possible, even if not easy.  But stop looking for the magic bullet quick solution – you most likely won’t find one that will work for you.  My recovery was driven by my understanding and having a comprehensive plan, but whilst some understanding is critical, I realise that many others will take a different route.

If you have Chronic Fatigue Syndrom, Fibromyalgia or POTS – I wish you my kind of recovery.  Please always stay hopeful.  Because I realise the importance of hope, I will start to collect CFS/Fibro/POTS recovery stories to share with you.

Best wishes,

Dan