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My ME/CFS & Fibromyalgia Recovery Story

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Reprinted with the kind permission of Dan Neuffer and The Community of Hope for Recovery from M.E. / Chronic Fatigue Syndrome

A couple of years before my ME/ 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 ME/CFS symptoms appeared, which were extreme fatigue affecting my ability to walk.

My illness quickly morphed into a large range of classical ME/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 ME/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.

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 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.

After around four 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.

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 dedicated myself to stop reading about the usual ME/CFS info out there, to stop searching for other’s ME/CFS recovery stories (I never found any anyway) and to stop that roller coaster of hope and disappointment from 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.

Whilst my confidence in the validity of this explanation grew more and more over time, especially as I discovered other researchers who had similar views, 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 supplements to improve my metabolism, my detoxification, and to reduce the oxidative stress I was experiencing. I treated a variety of the common dysfunctions in ME/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 also used a range of other physical strategies as well as mind/body strategies to address what I believe to be the central cause of ME/CFS and Fibromyalgia. These might best be described as a combination of CBT, NLP and self-hypnosis.

But without a doubt, having a deeper understanding of how the illness really works was the absolute key to my recovery. That is why I usually 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 person experiencing the illness.

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 was often very disheartening. Now I have been recovered for around five years and frankly have no concerns about relapses, which was a big concern in the beginning given my experience of disappointments. My message to everyone is always that recovery is possible, but we really need to get beyond just treating and covering up symptoms!

Hope my journey inspires you all to follow in my footsteps!

_______________

Dan Neuffer, a former physicist, recovered from ME/CFS and Fibromyalgia after being ill for over 6 years, long after having given up on any hope for recovery. Based on years of research, Dan pieced together a hypothesis for the pathogenesis of these illnesses to answer all of his unanswered questions.

As a result of his research and recovery, he wrote and published the book CFS Unravelled – One man's search for the Cause of Fibromyalgia and Chronic Fatigue Syndrome and the Discovery Essential for You To Recover. His book shares an explanation that demystifies how people get ill in so many different ways and how people can recover. No magic cures, just science-based information to help people tailor a recovery plan.

Connect with Dan at cfsunravelled.com; Facebook; Twitter

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7 thoughts on “My ME/CFS & Fibromyalgia Recovery Story”

  1. IanH says:

    “mind/body strategies to address what I believe to be the central cause of ME/CFS and Fibromyalgia. These might best be described as a combination of CBT, NLP and self-hypnosis.”

    Makes none-sense of all the cell research that is occurring at the moment. Scientists are wasting their time.

    Recovery by mind-power! Oh if it were true!

    Sorry if I sound so cynical.

  2. richcarson says:

    Thank you very much for sharing your wonderful story. Your healing just goes to show MECFS patients that it is possible to get well, and that healing starts with following the single most important thing that any patient can do–become informed about their disease. Best wishes for a life filled with good health, and thanks for letting us know that it can be done.

  3. 35years says:

    have had Fibromyalgia for 35 yrs and now that I am 80 its worse than ever. Nice to hear that men get this as well because years ago they said that it rarely affects men. I certainly recognize all the symptoms because I have had them all for years. I am very glad that you have found a solution that works for you. Unfortunately it is not going to work for all people. I believe that my nervous system was severely damaged when I was a child in WW2 in England. We all learned how to face life with a stiff upper lip. Little did we know how our bodies were handling all the stress. Obviously it has morphed into something more. As I now have diabetes and osteo and rhuematoid arthritis I doubt anything else will work. I can manage my pain and diet but I am too tired these days to go to my warm water exercises which help so much. I do hope that sometime in the future someone comes up with a magic cure because there are millions of us who would send up a cheer. It will be too late for me, however I send out
    my sincere hope for everyone afflicted with this disabling illness

  4. kbavouset@gmail.com says:

    This article started off like we were going to be given some good information, perhaps how to start investigating common complaints; only to turn in to an advertisement for a book. I was quite disappointed.

  5. scottyojai says:

    Shame on you ProHealth for yet another shameless ad for a book. The author of this book recovered in the well known 5 to 6 year time frame that many sufferers have the good fortune to make it out by. both my sisters got well in 5 years, not by anything they did. This is a common issue with this illness. I, on the other hand, did not get out, ever, and i’ve been severely ill for 25 years.
    My wife, sick for 29 years, also has not gotten well. (And yes, couples CAN both get ill from CFS/ME, no one know why)
    I will not buy this book, because i know there is nothing in it that will help me or my wife. You either get well within the 5 to 6 year time frame or you don’t, and most don’t. And when you don’t you are going to be sick for a long time. There is always a hope for a cure, and there are researchers working on it every day. But the cure is not here yet. i apologize for the harshness of this writing, but there are many more people on this list who are sick than there are people who are well. And they know what i am saying. My heart goes out to all of you.

  6. jlnhjm@sbcglobal.net says:

    It has been well over 20 years; however, it got worse as I made my way thru four cancers: losing my thyroid and a kidney. There are several supplements that ProHealth recommends and I have tried some of them, as well as others I have purchased elsewhere. Last year I began to add more greens to my diet, cut back on red meat. I have eaten sauerkraut and other fermented/pickled veggies my entire life; should have a good microbiome. However, I have also read that steroids can damage the biome, and all those antibiotics that I had as a child for constant ear infections. Strep infections too. Spontaneously resolved when I reached my mid 30s. H. Pylori about five years ago, knee replacement surgery two years ago – more antibiotics. I am reading Dr. Perlmutter’s book, can’t live without hope, cannot accept all these limitations.

    I have written about the trial in Sacramento, CA, am about 90 miles away, improvement would be worth the trip. There is also low dose naltrexone; unfortunately it requires dropping my pain meds and I cannot do that. I take very little; but if I do not take the edge off during the day, I cannot get off the couch. The lyrica which was very helpful ten years ago for the burning and electrical shocks has waned – or it is part and parcel of the worsening of my symptoms. The worse parts for me are the extreme fatigue and brain fog. If I can’t get my body back, I would definitely settle for getting my mind back!!!

    Long – but I am sure there is something here that most can relate to. I wish you all well, may the light of the universe bring you, and me, healing.

    Helen

    PS If the library has the book, I may look at it; however, I will not purchase it and I resent the constant commercials posing as informative articles.

  7. Sandy10m says:

    I was an Air Force test pilot and triathlete. Then ME/CFS came. I retired from the military and became a physicist. I figured the sedentary job would be okay, but the disease affects the brain too, so it makes even this job difficult. I am not cured, but I can function mostly normally. I did exactly the same thing about my own medical research and trying to figure out my disease for myself. I wanted to share what I learned in my 20 years of fighting this disease, in case it can help someone else.

    First, get off the carbs and grains, all of them. Very inflammatory. Eat a high-fat Paleo Caveman diet. Coconut oil and eggs are your best friends. Limit the red meat, but eat many veggies (no potatoes or soy), few fruits due to the sugar (eat mostly berries). Read “Grain Brain” for all the details.

    Take fish oil, 1000 mg 3 times per day with meals. Spectrum brand is great and does not have fish burps. I don’t own stock in Spectrum.

    Take Vitamin D3, lots of it. Be careful about fish-based vs. wool-based sources (some people are allergic to one or the other). If your body will allow 2000 IU twice a day, go for it. My body cannot tolerate much of it for some reason, as it causes migraines (another problem I developed).

    For energy and brain: NT Factor (2 capsules twice a day with food), Bio-PQQ 20 mg (1 with lunch), Brain Shield (1 with lunch)

    For sleep: GABA 1500 mg just before bedtime. Magnesium citrate 800 mg at dinner (also helps with constipation).

    For anti-viral (because we all have this problem): 2 capsules of Pure Planet Red Marine Algae in AM, Monolaurin twice a day with meals, L-Carnitine twice a day on empty stomach, L-Lysine twice a day on empty stomach.

    An anti-inflammatory that works really well for me is Samento extract. Expensive, but 40 drops twice a day rally helps with my pain and migraines. The fish oil is a wonderful anti-inflammatory too.

    I hope this helps someone out there. Good luck everyone, and let’s keep pushing for the CURE.

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