New Book Gets to the Underlying Cause of Fibromyalgia

New Book Gets to the Underlying Cause of Fibromyalgia

By Donna Gregory Burch.

In recent years, I’ve read several news articles about neuroplasticity and how brain training might be helpful for reducing the pain of fibromyalgia. Since I’m so logically minded, I’m fascinated by the idea that we might be able to somehow reset the brain so that it stops amplifying pain signals and other fibromyalgia-related symptoms.

Dan Neuffer

Last year, I learned about ANS REWIRE, a recovery program developed by Dan Neuffer for those with fibromyalgia, chronic fatigue and similar conditions. In the program, Dan shares the brain training techniques he used to recover his own health from fibromyalgia and ME/CFS.

As a follow up, Dan has published a new paperback version of his book, “CFS Unravelled: Get Well by Treating the Cause, Not Just the Symptoms of CFS, Fibromyalgia, POTS and Related Syndromes.” I recently had the chance to interview Dan about his recovery, his theory of what causes fibromyalgia and the release of his new book. I hope you enjoy our interview.

Can you share your journey of chronic illness?

I became ill shortly after an immunisation and had all the classic ME/CFS symptoms. My doctors were unable to identify anything wrong except for my blood test showing some mononucleosis (glandular fever) activity.

When I didn’t recover, it was suggested it was some unknown virus making me sick. I went on the usual journey of going from doctor to doctor with repeated tests that led nowhere. It was a very scary and confusing time.

My life deteriorated over time as my baseline health declined. More and more symptoms appeared over time, but when doctors finally identified CFS, I resisted this diagnosis because it sounded a bit vague and unhelpful. At the time it seemed like it was just a label when people don’t know what’s really wrong.

Pain was always there during flare-ups, but in my fourth year I started to experience full-blown fibromyalgia. I had also developed symptoms of POTS and the beginning signs of multiple chemical sensitivity (MCS), although the MCS thankfully never took full hold.

Are you recovered now? What were the therapies that helped you recover?

Yes, I consider myself to be fully recovered. My recovery took about 12-18 months once I had a clear direction. It resulted from a combination of physical treatments and nervous system training strategies.

The physical treatments included diet changes and a range of supplements to address my terrible gut function. I also used orthomolecular medicine to improve my metabolism and detoxification and to reduce oxidative stress.

The mind-body strategies included meditation and other brain-training strategies including a shift in how I engaged in physical activity and dealt with pain. Given the propensity for physical activity to lead to flare-ups and the severity of the pain, this was perhaps the most difficult aspect of my recovery journey.

Your book “CFS Unravelled” has several chapters on the physiological mechanisms of fibromyalgia. Why did you cover that topic in such detail?

During my years with ME/CFS and fibromyalgia, I had to ask myself, “Why are all these dysfunctions happening? Why don’t treatments have the same benefits for everyone?” The book was written to answer these and other key questions required for us to experience a change. I wanted the reader to understand how I arrived at my conclusions.

The reason for the technical information is to help connect the dots, but you don’t have to fully understand or remember everything. However, you do need to feel confident that the explanation offered is the right way forward for you. Without that strong confidence, your efforts to follow through and persist with a recovery action plan may waver, and you need to persist in order to recover.

My aim with the book is to help you realise that recovery is possible and to give you a framework for treatments and strategies to help you get there.

“CFS Unravelled” addresses a spectrum of conditions, including fibromyalgia, ME/CFS, MCS, POTS and others. Why did you lump all of those together?  

My own experience of having the symptoms of multiple conditions certainly made me think of it as one illness. However, it was my research that led me to bundle all these conditions together because I believe they all have the same root underlying cause.

What do you believe is the root cause of fibromyalgia?

It’s my strong view that the root cause is dysautonomia, which is the dysfunction of the autonomic nervous system (ANS). The key fact to understand is that the ANS is like the CPU of our bodily systems, including our heart, breathing, sleep, digestion, immune system and many other bodily functions. It regulates our ‘rest and digest’ and ‘fight or flight’ responses, ensuring our bodies respond appropriately to exercise, infection, injury and other stressors. When you look at this in detail, it soon becomes clear how a malfunctioning ANS can cause so many different symptoms.

What causes ANS dysfunction? And how does that lead to fibromyalgia?

The list of triggers of onset is perhaps as long as the symptom list. Some common ones include physical accidents, surgery, childbirth, immunisation, a severe infection, toxic exposure and even things like being under severe psychological stress. All of these physical things placing pressure on the body are all stressors as are other things such as inadequate sleep, over-exercise and arguably even a bad diet.

In my experience, most people who experience fibromyalgia actually have multiple stressors, often both physiological and psychological in nature (but sometimes only one type).

ANS dysfunction creates symptoms both directly as well as indirectly. The symptoms of fatigue and pain are often given simplistic causal explanations; however, in my view they are more complex than that. Fatigue has multiple factors including cellular dysfunction, hormonal dysfunction and also nervous system dysfunction – all three are controlled and influenced by the ANS.

Regarding pain, whilst it is widely recognised now that central sensitisation is involved, I don’t fully agree with the determination that “all chronic pain is in the brain” as many researchers/academics advocate. Reason being, that when we look at people experiencing pain with this syndrome, the dysfunctions and the experience of pain actually vary significantly. It’s my view that the ANS dysfunction not only leads to central sensitisation, but also creates a lack of homeostasis in the body where perpetual muscle tension and inflammation can trigger pain.

It is the same with all the other symptoms of the syndrome. Either they are caused directly by the ANS dysfunction or by the secondary dysfunctions that are created. It was my repeated arrival at the nervous system when investigating the different symptoms and dysfunctions that ultimately convinced me of this being central.

How can we break the cycle of ANS dysfunction?

That’s right – it is a cycle. In simplistic terms, there are two factors that perpetuate the syndrome: the ANS dysfunction and the triggers of the ANS dysfunction.

The constant triggering of the ANS dysfunction, which leads to flare ups and symptom exacerbation, sensitises the ANS to keep it from returning to normal functioning. Reducing triggers certainly can reduce symptoms and create a better environment for ANS normalisation.

But reducing flare-ups and trigger exposures alone is usually not enough. We need to seek normalisation of the brain and ANS function, which in medicine is termed neuroplasticity. This can be achieved through a variety of brain training methods.

Last year, you launched the ANS REWIRE program. What is that? And how might it benefit someone with fibromyalgia or similar conditions? 

The ANS REWIRE program is a recovery program for people who experience this syndrome. It is an educational and virtual coaching program to help people understand the condition and this explanation in greater depth so they can customise a recovery action plan.

The program also teaches a large range of strategies for symptom reduction and helps you partner with your doctor and other healthcare professionals for more effective symptom treatment.

The core of the program focuses on teaching brain-training techniques for ANS normalisation.

People enrolling in the program are reporting lots of great benefits, including feeling more at ease and less frustrated with the illness, feeling calmer and happier, having their health improve and symptoms reduce, and being able to fully engage in life again. It’s important to realise, of course, that the program isn’t some sort of magic cure, but that it requires a full commitment to engage in the strategies and treatments and to build recovery momentum. However, I think the effort is well worth it.

Where can people learn more about you, your book and the ANS REWIRE course? 

People can go to cfsunravelled.com to learn more about me, the book and to listen to many interviews with recovered people.

The best way to learn more about the ANS REWIRE program is to visit ansrewire.com and watch the four free introductory lessons that explain things in more detail.

Donna Gregory Burch

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.

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Authored by: Donna Gregory Burch

There are 9 comments for this article
  1. Dan Neuffer at 3:01 pm

    Hi Laura,

    Thank you for your comment – I strongly agree with you.

    It seems silly that some people are still suggesting the illness is imagined or that it is depression or something like that.

    The abnormalities in mitochondrial function are just one of many physical issues that can be observed and have been proven by research!

    However, some of these dysfunctions vary between people, so it is important that people work closely with their MD and be appropriately investigated to identify the specific dysfunctions that they are experiencing and that they get treatment to address these.

    Yes, some people do well with mind/body method on their own, but that’s simply not enough for many people. That’s why I am a strong advocate for a multilateral approach.

  2. Laura P Schulman, M.D. at 10:05 pm

    Current research suggests that CFS and FM are due to abnormalities in mitochondrial function.
    https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-016-0771-6

    As much as I am a believer in mind/body medicine I’d like to offer this to the more than 60% of CFS/FM sufferers who will try very hard to self-help with mind/body methods and get little relief.

    IT’S NOT IN YOUR HEADS. IT’S IN YOUR CELLS.

    While self-help programs like this can be empowering for people with normal mitochondria who have similar symptoms, for those who have mitochondrial dysfunction, it may be a disappointing exercise in futility.

    The good news is that if you do have mitochondrial disease, you can stop blaming yourself right now!

  3. Dan Neuffer at 7:24 pm

    It appears I cannot reply to individual comments – so I will try to keep it brief in one comment.

    Jeremy: Thanks for your positive comment – I agree with the influences that can lead to or contribute to dysautonomia as you describe. In fact if we look at the locus coeruleus, which does not fully develop until later in life, some of these connections can be explained.

    Steve: Totally understand scepticism. The fact is there is no one fits all ‘cure’ – I explain why this is in the book. Appreciate the comment about Jobs – desperation can drive us to unreasonable outcomes.

    Eric: I agree that it’s total nonsense to suggest the condition is something mental. I am not suggesting that at all (I think we have all had enough of that sort of thing).

    Paulette: Hope the book resonates with you. The science on inflammation and pain perception is fairly well established, I imagine that your experience will be well reflected.

    HJ: Well, it depends what experts you ask. Most experts are NOT experts on Fibromyalgia/CFS, but rather in their field and look at the research from that angle. Yes, I know it’s tough to deal with the financial side of things on top of the illness. I think most of us get pretty jaded spending what feels like a small fortune on treatments that have limited impact at best. It’s my view the illness has a single cause, but that this cause is triggered in many many different ways. That’s why people get ill following such different experiences.

  4. HJ at 8:23 am

    The cost of the intervention puts treatment out of reach. I have multiple health issues. I may check out the book, but I feel skeptical, particularly of anyone who proclaims to know the cause when experts don’t.

    I congratulate him on his recovery. My gut feeling is that CFS and Fibro have multiple causes. It also makes me suspicious that CFS and Fibro seem to be treated the same by the author. I’m sure there’s a benefit — but “cure” goes too far for my tastes.

    One has to be skeptical with these diseases, otherwise, desperation would lead to an empty pocketbook. I’m already contemplating bankruptcy and that’s because my cognitive issues contributed to my use of credit cards when I couldn’t remember my bank balance… and cognitive issues and fatigue meant that I wasn’t good at “paying back” the credit card. That, and the costs of medication, deductibles and my CPAP machine for sleep apnea.

    Getting diagnoses and care and the delay in identifying the issue has hit my financial state so hard that I face depression and had thoughts of suicide, but I talked to a financial counselor and I’m trying to get the balances paid off. I’m sure I’m not the only one in such a state.

  5. Paulette Diana Wright at 6:49 pm

    Interested in your bok. Have studied Fibromyalgia since 1995 when I was diagnosed. Being a RN FNP/PA Family practice. I kept working and dove into why I got this awful painful, fatigue, debilitating condition. Then I went to work in Rheumatology, and Pain management, and ran a support group weekly for 2 years. I will see if you concluded some of my findings I found from my patients.

  6. Jeremy Goodwin, MS, MD at 2:04 pm

    As an addendum to my earlier comment, while the role of an unbalanced autonomic nervous system may well explain some of the phenomena we can identify and partially manage in these disorders, the CAUSE of such an imbalance may be the key to better success via prevention and when necessary, intervention. Epigenetic changes as a result of adverse childhood or adulthood experience can set in motion these problems. And that extends to addiction disorders and emotional ones. It is the mechanism that links the effects of nurture on nature or mind on body; abuse, trauma and neglect….

    Steve from Massachusetts is, I believe, correct.

  7. Eric at 9:24 am

    I think this is total nonsense and a complete business that perpetuates the notion that these conditions are something mental and we need to change the way we think. I think it is wrong to take advantage of physically sick people and sell them on a cure that is [edit].

  8. StevefromMA at 6:21 am

    Maybe. Thanks for doing the interview, Donna. Why is it that we are all skeptical when someone cures our disorders, then sells books, courses, or expensive supplements ( like the “cured” chiropractor) to help cure us? When someone online gets cured, everyone’s first thought also is, “he really didn’t have xyz disorder” because we’ve tried everything. This is like Jobs inventing Apple in his garage. Did it happen, yes. Does it happen often, and with a complex system like us…IDK. Did Salk profit from the polio vaccine…nope. Are CFS, FM, POTs, etc., that similar in etiology and pathology…maybe. Most of us agree with ANS problems being part of FM but self cure…maybe. I’ll look at it but I’m in the Epicgenetics trial and putting my hope in Dr. Gillis. I’ll look at Dan’s book, though, of course.

  9. Jeremy Goodwin, MS, MD at 4:32 am

    The last two thirds of this article are really interesting. I have treated in depth as many patients with this spectrum of disorders as all but a handful of practitioners in four states. I am aware of the ANS’s partial role (as in PTSD signs and symptoms) but the author centralizes it more and that may be very reasonable. Somewhere around 10m in the USA alone suffer fibromyalgia. Read the article. The book may be very useful although I have yet to read it. I must. It is important and yet another medical condition diagnosed in women more often than men. That is changing as we now know that the diagnostic criteria of 11/18 widespread tender points, along with an appropriate history, biases the diagnosis toward women. Many have dropped that part of the exam or its weight in the diagnosis in order to better reflect the epidemiology of the disorder.

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