Chronic Fatigue and Fibromyalgia Syndromes are complex overlapping health conditions for which there is currently no medical consensus on their causes or treatment. Each person with these syndromes presents a unique set of symptoms and complications that include but are not limited to severe fatigue, headaches, disordered sleep, chronic flu-like symptoms, muscle aches, gastrointestinal problems, cognitive issues also known as brain or fibro fog, night sweats, dry mouth and eyes, visual disturbances, allergies and hypersensitivities. These symptoms present clues to what is contributing to the poor health of individual sufferers but to understand the entire puzzle one must view the syndromes as a whole.
When I think about the majority of health professionals who study and treat chronic fatigue and fibromyalgia I am reminded of the story of the blind men and an elephant. In this tale, which originated in India, a group of blind men touch an elephant to learn what it is like. Each one touches a different part. When they compare notes on what they felt they are in complete disagreement. The man who feels a leg says the elephant is like a pillar; the one who feels the tail says the elephant is like a rope; the one who feels the trunk says the elephant is like a tree branch; the one who feels the tusk says the elephant is like a solid pipe; the one who feels the ear says the elephant is like a hand fan; and the one who feels the belly says the elephant is like a wall. A wise man explains to them that they are all right and that the reason every one is arriving at a different conclusion is because each one has touched a different part of the elephant.
Likewise in chronic fatigue and fibromyalgia syndromes, there are many theories about these conditions based on the particularly symptoms that one is focused on. Some of the possible causes that are attributed to these syndromes are: damage to the mitochondria, gastrointestinal issues including leaky gut syndrome, upper spinal cervical stenosis, glutathione deficiency, impaired detoxification and liver function, traumatic injury to the hypothalamus-pituitary-adrenal axis, conditioned trauma in the amygdala part of the brain, chronic infections including Lyme disease, intestinal parasites, and the XMRV retro virus, heavy metal and other chemical toxicities, lymphatic dysfunctions, adrenal exhaustion, and thyroid dysfunction. It is true that all these things are part of the “elephant”, just like the blind men correctly described the part of the elephant that they felt, but to really understand what is going on one must look at the elephant as a whole.
It is my opinion that there is no single cause of chronic fatigue and fibromyalgia syndromes. These disorders are manifestations of a body that has been stressed by a number of causes and reaches a point at which it can no longer accommodate for them. The brain responds to this crisis by downgrading functions to conserve energy, which can affect nearly every organ and system of the body and results in profound fatigue that is not relieved by rest. In his book The Tipping Point Malcolm Gladwell describes how contrary to what most people think, change in health, nature, technology and society often happens not gradually but quickly at one dramatic moment and that little causes can have big effects. The “Tipping Point” is the moment of critical mass, the threshold or boiling point when sudden change occurs. When a person becomes ill with CFS or FMS the individual causes may have been present or accumulating for some time, but the onset of the condition is usually sudden.
Dr. Jacob Teitelbaum, a specialist in Chronic Fatigue and Fibromyalgia, uses an analogy of a blown fuse to describe the tipping point in these conditions. He states: “If the demands on your body are more than it can meet your body ‘blows a fuse’. The ensuing fatigue forces you to use less energy, protecting you from harm. On the other hand, although a circuit breaker may protect the circuitry in the home, it does little good if you do not know how to turn it back on or that it even exists.”
Some of the stressors that can potentially combine to cause a person to develop CFS and FMS are viral infections, accidents and physical injuries, impaired breathing, toxic exposure, physical abuse, acute psychological stress and alcohol. In order to recover one needs to identify the particular stressors that lead to the crisis and find effective strategies to treat them. However recovery is much more complex than addressing the individual causes because the syndromes set into play a vicious cycle of exhaustion and sympathetic nervous system stimulation that is difficult to reverse.
The Tipping Point for me happened in the fall of 1973 when I was a sophomore at Carleton College and had one alcoholic beverage at a dorm room party. The next day I woke up with a hangover and flu like symptoms that persisted for months. This was not a particularly stressful time of my life. I was taking a moderate course load of subjects I enjoyed, played music and exercised everyday, got plenty of sleep and ate healthy foods. I was never one who could “burn the candle at both ends”, stay up late at night, avoid meals or misuse my body. I had adopted healthy habits and routines that had thus far worked quite well for me. It came as a complete surprise when I became chronically ill and even more shocking that the medical profession had absolutely no idea what was wrong with me.
My personal experience of living with Chronic Fatigue Syndrome was one of being besieged by one challenging set of symptoms that due to my persistence would eventually resolve only to have another set become problematic. At the beginning of my illness I suffered from severe tension headaches, which eventually resolved doing EMG biofeedback, Feldenkrais training and strict avoidance of all stimulants; and blurred vision, which improved with vision training. The next thing that dominated my condition was chronic viral infections, which I resolved through a detoxification regime that included fasting with colonics. Then I was overwhelmed for ten years with horrific night sweats, which I learned to control using a biofeedback skill called Hand Warming. In 2001 I developed fibromyalgia muscle pain which is now resolving with EMG biofeedback training. Thyroid issues and symptoms related to a low body temperature became a significant problem resulting in another huge search for solutions that resolved through taking compounded T3 according to the Wilson's Syndrome protocol. Throughout all of this fatigue persisted and was the common denominator. I always had an intuition that these diverse symptoms were part of the same disorder. It was as if I was struggling to hold back a dam of water. Sometimes water would escape through one hole and I would plug it up and then it would come through another hole.
Finally in 2007 the underlying source of stress on my body was diagnosed as restricted breathing due to the fact that I have a large tongue for the size of my mouth. Once I resolved this problem with Oral Systemic Balance, the wall of water that I had been struggling to hold back finally went away and I stopped acquiring new symptoms. (To read more about this go to my post on Oral Systemic Balance at fibrofriends.typepad.com/fibro_friends/2010/02/oral-systemic-b.html .) In retrospect I realize that I was born with compromised breathing due to the anatomy of my tongue and mouth. I was able to accommodate for that with thumb sucking as a child and as an adolescent by my healthy lifestyle and management of stress. It was only at the age of 19 when certain other stressors – a flu virus and alcohol came together and tipped me over the edge to a crisis that manifested itself as Chronic Fatigue Syndrome.
Not all of my symptoms went away with Oral Systemic Balance. I still had very disturbed sleep, hyper-reactions to foods and drugs and my muscles continued to be hyper-toned which prevented me from returning to an active lifestyle even though I no longer had fatigue. My intuition was that although I had resolved the key stressor that lead me to develop CFS and FMS I had a lot of collateral damage to my nervous system after 35 years of living in an exhaustive, survival state. After another period of search, I found a modality of healing called Low Energy Neurofeedback System or LENS that is particularly effective in treating trauma both physical and emotional. LENS took another layer of stress off of my body, evened out my energy and emotional responses. Then I discovered a combination of EMG biofeedback training and Low Intensity Laser Therapy that successfully reversed my hyper toned muscles. (For more information on LENS and EMG biofeedback go to my post on "Biofeedback Therapies for Chronic Fatigue and Fibromyalgia Syndromes" at fibrofriends.typepad.com/fibro_friends/2010/05/biofeedback-therapies-for-cfs-fms.html .) At present I am pursuing a therapy called Exercise with Oxygen Therapy, a treatment that increases the availability of oxygen at the cellular level and is contributing further to my recovery.
Some prominent physicians in the holistic and environmental medicine describe persons with chronic fatigue and fibromyalgia as “canaries”. This expression originates from the practice in early coalmines that did not have ventilation systems of bringing canaries into new coal seams. Canaries are especially sensitive to methane and carbon monoxide, which make them ideal for detecting any dangerous gas build-ups. As long as the canary kept singing, the miners knew their air supply was safe. A dead canary signaled an immediate evacuation of the coalmine. People with CFS and FMS are particularly sensitive to toxins so they serve as a warning to the effects of living in our increasingly toxic environment. Dr. Majid Ali attributes the symptoms of fibromyalgia and chronic fatigue syndromes to cellular oxygen deprivation and Dr. Dietrich Klinghardt believes that persons with these syndromes have poor detox genes. But could it be that the persons susceptible to these health problems simply do not breath as well as healthy individuals due to the structural anatomy of their mouth, tongue and throat? I personally think that improving oral function through the use of oral appliances is one of the biggest developing health sciences of our time and that in the future it will prevent and reverse many chronic illnesses; and in conjunction with other therapies particularly Exercise with Oxygen Therapy can provide full recovery for many individuals.
At the risk of being another blind man observing the elephant from my own experience I need to state that the treatments that helped me get better may not be applicable to everyone with CFS and FMS. Each person with these conditions had a unique set of stressors that caused their illness and has a unique set of circumstances that perpetuate it. Dr. Joseph Teitelbaum, the medical director of the Fibromyalgia and Fatigue Centers ( www.fibroandfatigue.com ) overcame Chronic Fatigue Syndrome himself doing a variety of treatments that generally fall into the category of naturopathic medicine. He got CFS after a period of significant stress when he was taking a double load of courses in medical school, not sleeping much and eating very poorly. I am sure that the protocols that helped him get better and that he continues to research and develop work for some people, especially those whose illnesses were precipitated by a period of physical abuse. To read more about Teitelbaum's protocols go to my post “Treating CFS & FMS with Naturopathic Medicine" at: fibrofriends.typepad.com/fibro_friends/2010/05/treating-cfs-fms-with-naturopathic-medicine.html .
Ashok Gupta recovered from CFS using a combination of techniques that derive from mind/body therapies including Neuro-Linguistic Programming and meditation, which he refined and developed into a program called “Gupta Amygdala Retraining” ( www.cfsrecovery.com ). Gupta attributes the major symptoms of CFS to a vicious cycle of overactive sympathetic stimulation triggered initially by a period of acute psychological and physical stress often accompanied by a virus or toxic exposure. The amygdala is the subconscious part of the brain that responds to danger and produces a fear response also known as the “fight or flight” response. According to Gupta’s hypothesis of CFS the symptoms are perpetuated by the amygdala’s response to those symptoms. His program aims at breaking this cycle with specific conscious techniques. Gupta’s research on CFS is thorough and his hypothesis is compelling. I am sure that his program is helpful for many people however I think do not think it adequately explains everything that is going on with all persons with CFS and FMS. Unlike Gupta my illness was not precipitated by a period of psychological or physical stress. Yes there were periods of my life when I was really scared about what was happening to me physically and I worried if I was ever going to get well but I faced those fears, calmed the anxieties through counseling and soul searching and practiced meditation and biofeedback self-regulation skills. The stress of my condition continued because it was perpetuated not by my unconscious thoughts but by a very real physical stressor - an inadequate air supply.
There are many people with CFS and FMS who suffer from chronic infections that are contributing to their illnesses. Treating these infections which include chronic Lyme disease, viruses, Candida, intestinal parasites, etc. can be an important part of a recovery program but the cause of CFS and FMS cannot be attributed to them solely. To read about Chronic Lyme disease and the XMRV retro-virus and my personal opinion on the significance of these infections go to: fibrofriends.typepad.com/fibro_friends/2010/03/chronic-lyme-disease-an-overlapping-condition.html and fibrofriends.typepad.com/fibro_friends/2009/11/retrovirus-linked-to-chronic-fatigue-syndrome.html .
In conclusion there is no single cause of chronic fatigue and fibromyalgia or single treatment that is helpful for everyone. These syndromes occur when a body reaches a tipping point caused by a unique set of stressors for which it can no longer accommodate. In response to this crisis the brain downgrades functions to many systems and organs of the body to conserve energy. The resulting exhaustive state triggers the sympathetic nervous system to become chronically agitated. Recovery requires treating the underlying stressors that precipitated the illness and healing the trauma to the brain that ensues from living with these conditions. Unfortunately there is no one place or medical profession that understands or can treat the entire “elephant”. This leaves the exhaustive task of pursuing effective treatments and coordinating one’s care to the individual. I believe that both chronic fatigue and fibromyalgia are reversible syndromes and that the treatments to facilitate recovery have already been discovered. It is my goal in this blog to share information about these treatments and to shed light on the whole elephant that each of us with these conditions lives with.