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.
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?
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.