What Causes Chronic Fatigue and Fibromyalgia Syndromes?

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 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, physical trauma and injury, impaired detoxification and liver function, traumatic injury to the hypothalamus-pituitary-adrenal axis, heart dysfunction or low cardiac output, conditioned trauma in the amygdala part of the brain, chronic infections including Lyme disease, intestinal parasites, mycoplasma and the XMRV retro virus, low levels of serotonin, hyper elastic connective tissue, vagus nerve dysfunction, low levels of acetylcholine, heavy metal and other chemical toxicities, chronic mast cell activation (MCAS), small intestinal bacterial overgrowth (SIBO), magnetic or electron deficiency, lymphatic dysfunction, problems with methylation, protein or amino acid deficiencies, 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 syndrome 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 body 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. Typically persons with CFS have low blood pressure, low blood volume, a low body temperature and a slow pulse.  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 or the straw that breaks the camels back. 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. It is important to note that this particular response of down regulating physical functions is unique to persons with CFS and FMS and may be genetic in origin.

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, nutritional deficiencies, impaired breathing, toxic exposure, physical abuse and injury, 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. Some researchers describe CFS as a post-viral infectious disorder.

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 helped 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 an 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 are slow to hell from exertion which has 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 evening out my energy and emotional responses. EMG biofeedback training, Low Intensity Laser Therapy, and Whole Body Cryotherapy have helped my muscle condition but only paliatively. (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.) 

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 whole body cryotherapy and LENS neurofeedback can provide 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, mycoplasma fermentans, 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.

Comments

[Daniel]

It all comes down to having a good diet, lacking in the essential minerals and vitamins made me very sick with both fibro and CFS, now I take a fruit cocktail, and I am cured.

[Darden Burns]

A good diet, which I list as number one in "Strategies for Healing" is essential to recovery from CFS and FMS. Unfortunately for most people it is not enough to provide significant improvement. Other issues that may need to be addressed include breathing problems, cellular oxygen depletion, endocrine imbalances and dysfunctions of the Central Nervous System. Each person is unique and needs to find their own combination of strategies to heal.

[Supra Shoes]

Your article is wonderful,can you tell me how did you do it?

[Darden Burns]

I have spent over 30 years exploring treatments to improve my health. The majority of treatments and therapies that I tried were not helpful however eventually I found treatments that helped reverse CFS and FMS for me. My tenacious will to get better combined with my ability to explore every lead has resulted in an understanding of CFS and FMS that is slightly ahead of those in the medical profession.

[Chronic Fatigue]

Chronic Fatigue is one of the conditions i've come across recently and i've been struggling to fully understand the problem and been searching for blogs related to it.http://www.youtube.com/watch?v=vrSTQDVc0tc Came across yours and it's really helpful.

[arginine]

It is very easy to become confused about what is a healthy diet when there are so many opinions on what we should be eating, in what quantities and when.

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[windshield repair]

That is a good information for us to know. Coz sometimes we don't know that we are already over stressed.

[Carol]

Quite a long read but very informational indeed. The article is of very good use to people like me. Thanks a lot.

[Rebuilt caterpillar engines]

Each personal is unique and needs to find their own combination of methods to treat.

[check here]

Due to poor understanding of the phenomenon and due to over promotion of various unfunded theories on fibromyalgia, many people have assimilated denatured ideas regarding the disorder. There are many myths and misconceptions surrounding the concept of fibromyalgia and it is very important to separate them from the actual truth.

[Bren]

Although the exact cause of a fibromyalgia condition is still unknown, it was said that some sufferers of the condition are genetically predisposed to it.

http://whatcausesfibromyalgia.org

[Darden Burns]

I suspect that the tendency to develop chronic fatigue and fibromyalgia syndromes is genetic. The specific response to physical stress that results in the body down regulating its physiology is most likely triggered by an inherited gene.