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When Retreat Means Advance: A Recovered Chronic Fatigue Syndrome/Fibromyalgia Patient Looks Back

  [ 31 votes ]   [ 5 Comments ]
By Dan Neuffer • www.ProHealth.com • September 26, 2016


When Retreat Means Advance: A Recovered Chronic Fatigue Syndrome/Fibromyalgia Patient Looks Back
Reprinted with the kind permission of Dan Neuffer and Health Rising.

By Dan Neuffer

A masterly retreat is in itself a victory.
Norman Vincent Peale

During my years with ME/CFS/Fibromyalgia, I had lots of unexpected experiences.  More bad experiences, more frustrations and more heart-breaking disappointments than I care to recall these days.

However, one very powerful instinct I experienced was firmly front of mind, and is being echoed over and over by others that also found a way to overcome ME/CFS/fibromyalgia. In fact, I hear it so often when people tell of their recovery from the illness, sometimes after years or even decades of being sick, that I felt compelled to explore if it’s more than an instinct, but perhaps an important strategy to help people with ME/CFS/Fibromyalgia get over their illness.

I suppose everyone describes it slightly differently, but as I look back, I struggle to find the words to REALLY represent what I was feeling with this POWERFUL instinct.  Because for me, it was much more than an instinct, it was more like a calling, or perhaps even a compulsion, a yearning if you like.  So here it is; I wanted to run away – to escape!

Okay, run is a strong word – stroll might be more appropriate given my pace during those years.  But what was it I wanted to get away from?

To be frank, it wasn’t really a well-considered thought, it was more like an urge.  I kept feeling like I MUST leave my home, my family, my life – leave everything and head out into the country, out into the wilderness to live in nature.

I wonder if that sounds weird to you if you have ME/CFS/Fibromyalgia, or perhaps you know exactly what I am talking about.  But I have to share how conflicted I felt about this, and yet how plagued I was by this urge for the last years of my experience with ME/CFS/Fibromyalgia.

It’s fair to say that I love nature – I have loved the forest since my childhood – I love the beach – I love the mountains.  But you know, I am not necessarily the camping guy – maybe a day or two and that’s always been my limit.

But my urge was to get away somewhere where there was no civilization. No people, no TV, no anything.  But besides the fact that I am married and have children, I was faced with the very stark reality that I would probably find it impossible to look after myself and provide for my basic needs.  And yet, this urge continued.

I would dream of literally just getting away to live in some cabin (camping in the wild wasn’t going to work for someone too sick to get out of bed a lot of the time).  Eventually, this urge was so powerful that my wife and I seriously discussed the possibility and considered our resources for me to hide away for a period of time.  How long?  Weeks?  A month or two?  Nothing was ever concrete, it was just an ongoing discussion about how this could become possible.

I never followed through with it, probably due to lack of resources and also due to fear.  Given that my symptoms were so severe, that even in the comfort of my home and with the support and care of my wife, coping was difficult – going solo in the wilderness seemed crazy.  But there was another fear.  The fear that this inexplicable urge to remove myself from the noise, the stress, the responsibilities of normal life and the desire to be alone in complete silence with nothing to do, could perhaps be somehow dangerous for me.  In fact, I felt that if I left, I might never come back, and so my love for my family prevented me from going.  If I had been single, I wonder what would have happened.

This whole urge is not something I have ever discussed much with others, not during my years of illness, not in the years since I managed to overcome ME/CFS/Fibromyalgia.  So why now?

Because I keep hearing others that got over the illness talk about this same urge in one way or another.  And many of them have actually followed through.  Not in the Grizzly Adams fashion that I kept envisaging, but in a more sensible and still supported manner.

And so I figured the question had to be asked – WHAT IS GOING ON HERE?  Is ME/CFS/Fibromyalgia the body’s way of prying us out of modern civilisation?   That just sounds weird!

Connecting the Urge for Respite in Nature to Overcoming ME/CFS/Fibromyalgia

In my life, a key question has always been; Why?

Why would people with such a severe physical illness, a syndrome that has dysfunctions in virtually every bodily system possible, want to seek being in nature?

What is it about nature that is calling them?  Is it the trees?  The air?  The smells – what?

Of course I cannot comment for everybody, but in my own experience is was probably more about REMOVING myself from the stresses and stimulation of modern life.  Not that I was in a bad environment or anything, the only bad thing about my environment was me and my suffering.

I didn’t want to have any responsibilities.  I didn’t want to have to talk to people, pretend to be fine when in reality I was suffering more than I felt I could handle.  I didn’t want the sounds, the noise, the TV, the computer.  I wanted simple.  I wanted …’nothingness’.  That’s the only way I can describe it.  I wanted not just to stop having to do things, I wanted to stop having to process things.  I wanted to stop thinking about things – I just wanted to BE.

So what does all this have to do ME/CFS/Fibromyalgia?  For years, I thought this whole thing was just some weird part of my life, but as I pieced together my views about the illness, overcame it and then saw many others also get over it, I started to see that this was connected to the illness.  Connected to some part deep inside of me, guiding me back towards health.

The World Health Organisation (WHO) long ago classified ME/CFS as a neurological illness.  And whilst long ago Fibromyalgia was thrown into the realm of rheumatology, even the American College of Rheumatology now recognises the vast number of neurological symptoms including the central sensitisation involved in this pain syndrome.

Health Rising has shared many articles about research demonstrating dysautonomia in the illness, but regardless of whether you recognise autonomic nervous system dysfunction as the root problem of ME/CFS/Fibromyalgia, the point is that there is a fair amount of consensus that the illness is neurological in nature.  After all, we all experience many neurological symptoms, from pain and sensitivities to light, sound and touch –  to brain fog, mood alteration and sleep dysfunction.

Clearly the nervous system in ME/CFS/Fibromyalgia is having difficulties processing sensory input appropriately, and so what would make more sense, than reducing the onslaught of information that we simply cannot tolerate?

Brain wave activity in Fibromyalgia and ME/CFS is clearly disturbed both in the waking and sleeping state.  A recent study compared the sleeping brainwaves of people with and without fibromyalgia, and detected alpha waves during sleep in people experiencing fibromyalgia, something that normally only occurs in the waking states. (No wonder we feel like we didn’t sleep when waking in the morning.)

And EEG studies of the waking ME/CFS brain also show significant differences.

So arousal levels, the way our brains are working and nerves are firing, is clearly abnormal both during the day and the night. (One must ask, do we really need research to ‘prove’ this? Most people with ME/CFS/Fibromyalgia experience brain fog or sleep disturbance!)

Is a Health Retreat An Important Strategy in Overcoming ME/CFS/Fibromyalgia?

Surely that would be a stretch of the imagination.  I seriously doubt that if I had holed myself away in the woods that I would have recovered from ME/CFS/Fibromyalgia without all the other things I did to recover.

Would it have helped?  Maybe, who can tell?

But when I look at the strategies that I did use, they perhaps reflect many of the experiences that such a retreat would have offered.

When I came to the conclusion that autonomic nervous system dysfunction is central to the illness causing the immune dysfunction and an extensive list of symptoms and further dysfunctions, my research and instinct identified that meditation would likely have a strong benefit.  I wasn’t drawn to the process; frankly my brain felt too fried to really make any progress with such brain training exercises, and yet in my state of desperation, I persisted.

Of course, it wasn’t a magic bullet, meditation was one of many brain training and other physical strategies and treatments that eventually allowed me to make a full recovery after nearly 7 years of severe illness.  However, to this day I strongly advocate this as an important foundation strategy to help people overcome Fibromyalgia and ME/CFS.

How Meditation Affects the Brain

Given that brain waves are abnormal in people with Fibromyalgia and ME/CFS, we can ask: “What can we do to help normalise our brain function?”

One obvious candidate is neurofeedback, where a number of electrodes are placed on our head to measure our brain activity, and some kind of feedback is given to us (most likely visually), to allow us to train our brain to produce more favourable brain waves.  But let’s first look at what we are talking about with these brain waves.  Here is a graphic showing the various frequencies:



Another common brain training modality used to affect our brain wave activity, is mindfulness meditation.  EEG studies indicate that our brain wave frequencies slow down when we engage in mindfulness meditation.  Plus, the different parts of the brain synchronize better together. (Many brain disorders are characterized not by damage to a part of the brain but by poor brain synchronization.) So it isn’t just about frequency and arousal, but also about what areas of the brain are active and how they interact.  It is about a change in function!

One study found that meditators showed stronger activations in the rostral anterior cingulate cortex and the dorsal medial prefrontal cortex bilaterally, compared to controls. Both of these areas have been implicated in ME/CFS and fibromyalgia.  These are areas involved in autonomic function, emotional regulation, cognitive function and memory processing as well as pain processing.

So it should be no surprise that meditation has long been used to help chronic pain sufferers reduce their experience of pain and to help people experiencing a high degree of stress to cope better.  Given the severity of the illness and the large range of symptoms that we experience, clearly there is much scope for people with ME/CFS/Fibromyalgia to experience benefits.

So What is the Connection Between that ‘Call to Nature’ and Improving One’s Health?

It strikes me that most people that experience the illness, soon come to recognize an aversion to stimuli and an intolerance to stress. Symptoms like sensitivity to light, sound, touch (like allodynia) and even our heightened sensitivity to pain all point to highly aroused overly sensitized brains.

Meditation and focus on the breath has been shown to slow down the frequencies of brain waves.  So if meditation can be used to train our brain to be less reactive, and to express more usual and healthy arousal levels during our waking and sleeping states, it would seem to be a good idea for people experiencing ME/CFS/FM. People can also use neural entrainment music (also known as brainwave entrainment), to alter the brainwaves their brains are producing (as measured by EEGs).

But what does being in nature have to do with altering brain wave patterns?

Well, it should be no surprise that many guided meditations also include sounds of nature.  Sounds like chirping birds, lapping waves at the beach, trickling of water or the sound of trees swaying in the wind.  These are all low frequency sounds, gentle sounds that have a soothing effect on the nervous system.

In order for us to respond appropriately to mental demands, our brains modulate activity and arousal in line with the environment and task at hand.  If we need to be alert, beta waves are helpful; if we’re in high response or learning environments, gamma waves are likely to be ideal.  If we want to experience sleep, theta and delta wave activity is required.

A brain that doesn’t follow these normal patterns in response to cues leads to inefficiency and frustration when we wish to perform mentally and/or when we wish to sleep.

So a normal functioning brain needs to be able to respond appropriately.  Clearly just lowering our arousal, especially if we are already under-aroused, isn’t likely to be the complete answer.  Which is why meditation alone isn’t the ‘cure’ for the illness.

It also makes sense to train the brain to respond appropriately when it is called into action and an increase in arousal is required.  Being able to tolerate external stimuli and maintain homeostasis and a healing state without extreme shifts in arousal is critical.  And so removing ourselves from stimuli that feel uncomfortable and trigger flare-ups surely must be as important as encouraging a reduction in brain arousal levels.

Perhaps the seemingly odd compulsion to get away from all stimuli and to experience the rhythms at frequencies associated with lower arousal and parasympathetic activity actually makes a whole lot of sense.  Perhaps, we should all listen more to our instincts!?

Have you ever felt a compulsion to get away from it all?


Dan Neuffer’s six-year story with chronic fatigue syndrome (ME/CFS) / fibromyalgia began with an abrupt onset triggered by a vaccination. His symptoms included extreme fatigue not alleviated by rest, bouts of fever and other flu-like symptoms, gastrointestinal symptoms, night sweats, orthostatic hypotension, allodynia, excessive urination at night, salt cravings, pain and fibro fog.

After  fruitlessly seeing dozens of doctors, Dan took matters into his own hands and found a pathway to recovery. He believes that autonomic nervous system dysregulation plays a fundamental role in these illnesses, and that a comprehensive treatment approach is critical; when he found the right approach, treatments that hadn’t worked for him before began to work.

Since Dan recovered he has written two books, CFS Unravelled and Discover Hope and created an online recovery program for ME/CFS/Fibromyalgia called ANS REWIRE. Check out his blogs on Health Rising here and his website here.



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Article Comments Post a Comment

Get away from it all
Posted by: FMpharmacist
Oct 18, 2016
This is the first post of yours that I have read. I found it quite interesting. It had never occurred to me before that my strong desire to get away was my body's wisdom in trying to heal itself. I did not want to go camping or hiking because I knew I did not have the strength to do those activities. The thought of sleeping on the ground was more than I could bear!! (eventhough I had been a hiker and mountain climber in the past.) I really wanted to do a long wellness retreat. My focus was on wanting beauty, quiet and serene surroundings where someone else prepared extremely healthy food for me. (LOL! That still appeals to me!)

During the long darkness of my illness, we were not able to take any vacations because I was not able to work. We tried to do local vacations, but we were never really able to get away from it all. This will probably sound weird to some people, but the place where I can get away has for years now been my car. I can blast the heater, or the air conditioner, or play any kind of music I want. I can talk to someone, or turn my phone totally off. I can change the view by parking in a grocery store parking lot or at a local playground. In a world ravaged by something I can't fix (FM), I have total control when I am in my car.
Reply Reply

 
Get away from it all
Posted by: DanNeuffer
Oct 19, 2016
Hi FMpharmacist - well I know exactly what you mean. Retreating away in your car is quite clever really, an environment where you can control stimulation from the external world. Probably not quite as restful as being in nature, but hey, it's about being practical right!?

Glad the article resonated with you! :)

 


I was already doing before I knew why. I am HAPPY but still in pain
Posted by: CanBrit
Oct 19, 2016
We live in the country, actually outside of the country. I always gravitated to the outskirts but this was the outskirts of a 500 population village.

Before I became ill, I revelled in the birds singing, the geese overhead indicating a season had changed. Then I had a virus that turned into sacroiliitis which led to the diagnosis of FM in 3 months. My Dr thought I had bone cancer.
Three more years later, I was still in a high powered job but needed 1 or 2 days a month to recoup. 1998. Hit on the head with ice and snow from a three storey building....ouch. Next CFS, and on, and on, etc.

My haven has become my prison.

Who knew?
Reply Reply

 
Finding a way to change how you look at things
Posted by: DanNeuffer
Oct 19, 2016
I get where you are coming from.

It's so tough dealing with this illness, that simply coping with it all becomes as big a challenge as the illness itself. I think finding ways of changing that is really important to give yourself a greater capacity to take positive steps forward.

Hope you find ways of connecting with respite.

 


Retreat
Posted by: Yana74
Dec 23, 2017
I would LOVE to go on a health retreat for several weeks! Be fed, have massages, rest. Like you say, have no responsibilities and just be cared for by someone other than family so there’s no guilt or resentment. I remember a few years ago I strongly felt I needed this but my own father made me feel very ashamed for wanting this, he suggested I go camping with my husband and kids instead. ??
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