My Story – Dan Neuffer’s CFS Recovery Story

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

A couple of years before my CFS 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 CFS symptoms appeared, which were extreme fatigue affecting my ability to walk.  (see more in my video here).

Dan’s Experience of Having Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis /Fibromyalgia

My illness quickly morphed into a large range of classical CFS symptoms.  I suffered with a staggering range of symptoms over the years, but my 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 fibro fog.  My symptoms changed over the years and my fibromyalgia pain symptoms became more prominent during the second half of my 6 year 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 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.

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 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.

After around 4 years of illness, I had managed to somewhat steady my cycle of symptom flare ups and basically resigned myself to this being a lifelong condition and to just try 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 which was my turning point.

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

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 info out there, to stop searching for other’s CFS 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 CFS.

Whilst 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, 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 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 other strategies to address what I believe to be the central cause of Chronic Fatigue Syndrome and Fibromyalgia.

But without a doubt, having a deeper understanding of how Chronic Fatigue Syndrome and Fibromyalgia 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

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 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 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 Syndrome or Fibromyalgia – I wish you my kind of CFS recovery.  Please always stay hopeful.  Because I realise the importance of hope, I will start to collect CFS recovery stories to share with you.

Best wishes,

Dan

Share the Hope!
October 20, 2012

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14 Comments on "My Story – Dan Neuffer’s CFS Recovery Story"

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Carol Marie Groen
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Words can’t express my feelings! For someone to offer those with the same illness, a free book on how to heal ourselves! You’re right! Only someone with CFS/Fibro etc can understand. Our financial resources are drained. In my case, with 4 of my kids still at home and still relatively young. Its not possible for anyone to understand the stress we live with, and the sacrifices we have to make, just to survive – in our case, just to have the very absolute basics/necessities. I so look forward to your book, and i hope in all my ‘fibro-fogginess’ that i… Read more »
Dan
Guest

Thank you for your kind words – it is a difficult road travelled with this illness, but there definitely is hope for recovery.

Just realise that there is no magic cure – so the book offers an understanding and framework, but it is always your personal responsibilty to take the action and follow through. Ultimately, you should get help from various professionals.

Best of luck, the book should go free in hours from now!

Sincerely

Dan

Sandra
Guest
Got ME 42 years ago. Severe IBS. Recently I had crashed, (was in hospital last year, gall bladder probs, on antiobitics for 15 days, off for 4 weeks, then back on 10days, I know this has destroyed my gut again, why now I’m crashing. Took me years to get it right, and when I did, began to recover) and was unable to pick up any email or go online even – too much energy needed. I therefore missed out on the book. I cannot watch video, I don’t have enough broadband for that, as I live on a tiny pension,… Read more »
Marina
Guest
Thank you for your comprehensive video. You have obviously given this a great deal of thought and walked around it from all angles. My experience is one where without help I don’t think I would have been able to figure out my personal triggers. It was similar to yours in a sense that it was caused by a vaccination. The vaccination was from childhood though and it was a virus in the vaccine, not one that the vaccination was used for, that ultimately led to CFS for me. With menopause, CFS hit me hard. Though it was written off to… Read more »
Dan
Guest

Thanks for your comment Marina, it’s great to hear that you are on your way towards recovery. Yes, it is a challenge to get through this without some help, I was lucky to be able to do that. Having somebody experienced in CFS/FMS help you identify where you are at and what you are doing is very valuable. Few people can evaluate themselves and their experience objectively and see what is happening and how to move forward. Thank you for sharing the name of one person that may be able to help.

D. Joseph Meyer
Guest

As a physician and researcher interested in chronic pain disorders, I am very interested in hearing from people who have overcome various types of chronic pain conditions. Along with two colleagues, I am currently conducting a study of individuals who feel they have overcome their chronic pain. A detailed description of our study can be found at studychronicpain.com.

If you or any of your readers would like to participate in the study, please contact us at our website and we would be delighted to interview you.

Thank you,

D. Joseph Meyer, MD PhD

Stephanie
Guest
I to have Fibromyalgia and CFS, I’m still battling fatigue but I can say I’ve been Fibro flare free for 3 months now. I know that isn’t long but its very encouraging and I’ve been treating it naturally. My life experience can’t be compared to most people with CFS/Fibromyalgia, I’m only 24, but I believe my first Fibromyalgia flare happened when I was only 15 years old, I didn’t even know what it was. Unfortunately through my journey doctors haven’t been so helpful, it wasn’t until I was in a walk-in clinic once that a doctor mentioned CFS and I… Read more »
Dan
Guest

Hi Stephanie,

It strikes me that your instinct has led you on the right track.

Hopefully you will find the video explanation and other resources helpful.

Warm wishes,

Dan

Stathi
Guest

Dan just a quick question, it could be addressed to anyone who has recovered from CFS/ME. When you conducted all of these tests were your EBV/CMV levels high positive? I do believe that there is some sort of viral proponent, but I am just interested to see if anyone with high viral loads for these fatigue based virus’s has recovered. Thank you.

Dan
Guest

Hi Stathi
Many people have all sorts of infections – basically you name it, we get it. Because the system is so compromised in ME/CFS/Fibro, the body becomes a playground for infectious agents.
Yes, the EBV virus is very common and I have seen people recover when they had this. However, I am not convinced it even triggered their illness, often it is just latent and comes out when the immune system crashes. In my view, whilst certainly a big stressor, it is parallel to the illness.
So yes, recovery is possible.
Dan

Josephine
Guest
I love to learn about people and you sir are very interesting now that I have seen into a part of your life. First, God Bless that you are healthy today and can enjoy your wife and children. I commented on one of your many videos on youtube and you replied. So after I replied to your comment I noticed your linked and because I truly believe the world would be better if we all just communicated and shared the important things. So here I am reading all these stories of people who have made it out of the misery… Read more »
Miriam
Guest
Hi Dan, I have CFS since a couple of months and I am looking for some advice. All doctors I have seen have no idea how to treat this and this is very depressing. I bought your book and found it interesting. I changed my eating habits trying to eat lots of vegetables, fish and poultry. I am still working but it seems still ok. But at home. I am a single mother and I try to do only the minimum (cooking, small cleaning things, ironing) but then I get lots of pain. I have got a lot of acidity… Read more »
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