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How Dan Neuffer’s got well from ME/CFS and Fibromyalgia.

Amazing how everything in life can be fine and we think bad stuff only happens to other people, and then suddenly, bam – everything changes and you soon think you will never get well again.

That’s what getting ME/CFS and Fibromyalgia Syndrome was like for me.

All was fine and we were enjoying my busy life and working hard when suddenly the unexpected happened, I got ill!

The husband of one of my colleagues had chickenpox, and so I organised a vaccination for myself because I didn’t think I had one before. That week, after I had the vaccination, I started to experience some extreme changes in my body. I felt fatigued and it got so severe that I was not able to walk. I didn’t know what was happening in my body, nor what was causing this to happen. The symptoms got worse as days went by, the most notable symptoms to me included fatigue that could not even be reduced by resting, fever and flu-like symptoms, orthostatic hypotension, cardiac symptoms, gastrointestinal symptoms, excessive urination during nights, allodynia which is pain due to stimulus but usually does not provoke pain, neurological symptoms such as brain fog, salt cravings, and night sweats. The symptoms kept on mutating and year on year, they got worse. I soldiered on even though this clearly wasn’t sustainable. Eventually, I had to reduce the number of hours I worked and at times, I had to completely stay off work for a long period of time.

Most people who haven’t suffered from the condition wouldn’t have an idea how it feels and most of them assume it just like a normal fatigue or exhaustion, but in reality, CFS/ME/Fibro takes it to a whole new level. I would occasionally say “Only a CFS/ME or Fibromyalgia Syndrome (FMS) sufferers knows the feeling”. CFS/ME/Fibro just like any other chronic disease, it becomes tough to manage it as time goes by because of the difficulties it brings.

The worst thing about the whole of this is that I didn’t know what was causing this and for years I kept on asking myself what it could be, and after several attempts to find out, and exhaustive and countless trips to the doctors, it became evident it was CFS/ME/Fibromyalgia Syndrome. Knowing the illness I was suffering from was some relief, despite the fact that the condition still remained a mystery to researchers given that there was a poor prognosis.

For four years, I studied my symptoms and somehow I would manage them. I had tried as much as possible to focus on my condition and try to live with it as best as I could manage. Accepting my condition gave me some peace but it didn’t last long as my condition got worse, which was the straw that broke the camel’s back.

Whilst trying to remain hopeful, I felt hopeless because as much as I tried to manage my illness, things went from bad to worse over time despite the short periods of some relief in between.

When I hit my low point, I stopped reading the CFS/ME/Fibro information and decided to do my own research. I researched for deeper answers regarding what might be the driving force behind ME/CFS and Fibromyalgia. One of the first areas of research for me was comparing what the sufferers experienced and what could trigger such symptoms and dysfunctions.

I was a man on a mission but it was never an easy affair since I had no medical or biology background and my condition was still poor making it difficult for me to concentrate for any period of time. As time went I was getting answers to some of my questions. I began having an idea of what was happening and was able to hypothesize on what was driving the illness. In my research I was able to find several secondary dysfunctions such as hormone, detox, mitochondrial dysfunctions and problems with biochemical processes such as methylation. I was sure that there is a driving force behind all these dysfunctions and I concluded that the Autonomic Nervous System (ANS) could be the reason.

I connected all my findings and everything fell into place including answers to the worrying symptoms that were a mystery previously.

The more research I did, the greater my confidence regarding the root mechanism behind the illness. Soon everything made sense, including all the unexplained aspects of individual experience, variability in onset, recovery and symptoms. Meanwhile I was using my insights and again using many of the treatment I had tried previously, but this time with more success. I came to realise a comprehensive plan focusing on the whole person and focusing on the driving mechanism is better than just treating symptoms.

So whilst I first healed my gut and changed my diet whilst using several supplements to improve the body metabolism, reduce oxidative stress and detoxification, I was also focusing on new and critical areas of my health.

These areas included lifestyle changes and specific strategies to take advantage of the magic of neuroplasticity.

Unbelievably I was able to regain my health in a period of 12-18 months and since then I have put all my regained energy into helping others find their own journey to recovery and giving them hope that recovery is possible.

I know every journey is different but if you understand the illness, then there is a possibility that you can get well from ME/CFS and Fibromyalgia again. You can watch and listen to stories of other people who recovered here.

After I recovered, I started meeting other people with ME/CFS/Fibromyalgia which hadn’t happened in my life for over 6 years. I decided to write a book about my research which later turned into a major project. When I finished writing the book “CFS Unravelled” it became evident that I had so much more to share and it was wonderful helping others to find answers.

Now my life is back to normal. My main message for people with ME/CFS or Fibromyalgia Syndrome is that despite what you might hear, you can actually get well again. It may not be easy and there is no magic cure, but a dedicated plan based on a deeper understanding can certainly get you there.

Dan is a former physicist, recovered from ME/CFS and Fibromyalgia after over 6 years of illness and has published his major work: CFS Unravelled-One’s man search for the cause of Fibromyalgia.

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