Fibro Friends

Personal Update

Dear Fibro Friends,

Over the past year and a half I have continued my search for effective therapies to help persons with chronic fatigue and fibromyalgia syndromes. You can trace this search by reading my blog posts on specific therapies and subjects, however I feel that now is a good time to write a summary of my recent health "adventures".

I spent the majority of last year exploring various forms of energy medicine that employ electricity to stimulate healing. The science behind these therapies is based on the principle that all living beings are primarily energetic and governed by electrical impulses. Specific frequencies and amplitudes of electricity have been found to promote healing at the cellular level and provide the catalyst for restoring balance in damaged molecular systems of the body. The field of modern energy medicine, which includes low level laser, microcurrent, pulsed electromagnetic field, and static electric field therapies is developing rapidly and provides effective nonpharmalogical treatments for many chronic conditions.

After reaching a plateau in my improvements with LENS (Low Energy Neurofeedback System) I started using NeuroField, a pulsed electromagnetic field therapy developed by Dr. Nicholas Dogris, which is used in conjunction with LENS treatments. This therapy involved commuting once a week for five months to Orinda, California to work with a wonderful therapist named Dr. Candia Smith. I made progress in my sense of well being, emotional stability and energy, however these combined treatments failed to improve my sleep or muscle condition. For more information on this and on energy medicine in general read my post "Energy Medicine of the Future". http://fibrofriends.typepad.com/fibro_friends/2011/03/energy-medicine-of-the-future.html 

In the spring of 2011 I was contacted  by Justin Brost who manufactures a static electrical field technology called the Energetic Fitness System. The unique aspect about this form of energy medicine is that rather than employing specific digital frequencies determined by a therapist to treat different conditions, the energy field creates analog harmonic frequency patterns that are rapidly changing and different for each person, theoretically providing the frequencies each person needs to heal and balance their body. Brost's business is located in Bellingham, Washington about and hour and a half drive north of Seattle. I traveled to Bellingham, Washington ten times to try this technology out and then purchased my own unit. Although I initially had a very good response to EFS over time I became reactive to it and it was no longer therapeutic. For more information on this read my post "The Energetic Fitness System" http://fibrofriends.typepad.com/fibro_friends/2011/07/energetic-fitness-system.html 

Then during the summer of 2011 I traveled twice to Portland, Oregon to try Frequency Specific Microcurrent with its developer Dr. Carolyn McMaken. McMaken uses specific frequencies that treat people with fibromaylgia caused by cervical spinal trauma. She insisted that I did not have any kind of fibromyalgia since my muscle pain is triggered almost entirely by physical exertion. McMaken treated me for a number of other conditions including concussion, liver toxicity, parasympathetic nervous system toxicity, and DOMS (Delayed Onset Muscle Soreness). Although I initially had a good response to FSM the effects were not long lasting. McMaken referred me to a neurogist in Durango, Colorado named Dr. Catherine Willner who uses FSM in her practice. Willner tried some additional FSM frequencies on me that were not helpful. For more on this read my post "Frequency Specific Microcurrent" http://fibrofriends.typepad.com/fibro_friends/2012/01/freq.html.

Although none of the forms of energy medicine that I explored resolved my remaining symptoms, I feel that my overall health is better than before I used them. There are many anecdotal accounts of healing in persons with chronic illness using these technologies and they are all safe so I encourage others to give them a try. My personal opinion is that these therapies are excellent for treating acute inflammation and muscular and skeletal injuries, however they are not as effective in resolving long term systemic conditions such as chronic fatigue and fibromyalgia syndromes.

In October of 2011 I discovered by chance how beneficial female hormone replacement therapy is for my particular situation. After eight years of taking Activella, a combination of a plant based estradial and progestin, I decided to decrease my dose by one half. One week later my muscle condition and sleep became dramatically worse and this persisted for two weeks until I figured out the connection. A week after I went back on my regular dose, my symptoms improved to the point where they were before the decrease in hormone replacement. I spent several months researching the possible connection between female hormone levels and fibromyagia. To read about this and the conclusions I reached read my post "Hormone Replacement Therapy - An Effective Adjunct Therapy forFibromyalgia".  http://fibrofriends.typepad.com/fibro_friends/2012/02/hormone-replacement-therapy-an-effective-adjunct-treatment-for-fibromyalgia-and-chronic-fatigue-synd.html  

At the recommendation of Dr. Willner I went through a series of tests at Swedish Neuro Sciences in Seattle, Washington to assess my muscle condition. About half the doctors I have consulted think that my muscle pain is a form of fibromyalgia while the other half insist that I don't have fibromyalgia. My personal opinion is that I do have fibromyalgia but because of all the improvements in other areas of my health due to the therapies I have pursued, specifically Oral Systemic Balance and LENS neurofeedback, I do not present myself as the typical fibromyalgia patient (no fatigue, brain fog or all body pain). I was willing to undergo this rather lengthy process of testing which involved blood tests, EMG muscle and nerve testing, and MRI and muscle biopsy to see if anything would turn up. Laboratory tests showed no sign of muscle disease however there was evidence of an old injury and nerve reinnervation. To read more about my personal understanding of the muscle dysfunction that I have and which I think is common to many people with FMS read my post: "Fibromyalgia - a Perspective on Muscle Dysfunction and Effective Treatments".  http://fibrofriends.typepad.com/fibro_friends/2011/10/f.html 

Most recently I embarked on a new therapy which appears at least in this early stage to be the missing piece of the puzzle for resolving my remaining health issues. I am working with a scientist who has developed a technology called Human Probiotics which reinstates beneficial human sourced probiotics or "vitamins" that are no longer produced by a person's microflora. The reintroduction of these microbes into a person's gastrointestional tract or gut repairs the immune system and "turns the genes back on" correcting methylation problems and restoring serotonin levels. The therapy involves monthly trips to the Boston area. So far my response has been excellent with consistently better sleep, muscle function and less reactivity to foods. I am optimistic that I am on the last stretch of recovery for which I  am extremely grateful. The therapy is a process and only time will tell how successful it will be for me as well as a few others I know who are also pursuing this. Stay tuned for a future post on this subject. The best way to do this is to subscribe to my blog which you can do by clicking "Subscribe to this blog's feed" which appears at the bottom of the "Categories" column on the left hand side of my blog: http://www.fibrofriends.typepad.com.  

Everyday I think about those suffering with chronic illness and how much courage and faith this takes. The support and friendship I recieve from my "fibro friends" is immeasurable and inspires me to move forward in my search for solutions to difficult health issues. It is my firm belief that chronic fatigue and fibromyagia syndromes are totally reversible conditions and that the treatments to do that have already been discovered, we just have to find them! To that end I continue to dedicate my personal search and this blog.

Sincerely yours, Darden

Fibromyalgia - A Perspective on Muscle Dysfunction and Effective Treatments

Fibromyalgia Syndrome remains a mysterious conglomeration of symptoms for which there is no definitive cause or treatment. The muscle condition characteristic of fibromyalgia is particularly poorly understood. To add to the confusion fibromyalgia patients are often referred to rheumatologists for diagnosis and treatment despite the fact that fibromyalgia is not an autoimmune disease. So what exactly is fibromyalgia?

“Fibro” refers to the fibers of the muscle tissue. “Myalgia” means pain in the soft or connective tissue of the muscles; tendons, which attach the muscles to the bones; and ligaments, which attach the bones to other bones. Myalgia is also referred to as “Soft Tissue Rheumatism”.  It is most commonly caused by the overuse or stretching of a specific muscle or group of muscles that occur in conditions such as tendinitis or carpal tunnel.  In the case of fibromyalgia syndrome the condition is systemic occurring on both sides of the body above and below the waist. The muscles in fibromyalgia patients are not able to recover adequately from everyday exertion. This results in pain, adhesion, and injury in the muscle tissue or fascia. When a person with fibromyalgia forces their muscles to work they develop sore spots called trigger or tender points. These points are felt as painful lumps or nodules that can be palpated by an experienced physical therapist or physician. A number of doctors who specialize in fibromyalgia believe that the cause of painful trigger points is metastatic calcium produced by chronically contracted muscles which cannot receive proper blood flow. The tissues become hypoxic (less than normal amounts of oxygen in the tissues) and contract further setting the calcium more permanently within the soft tissues.  Severely impaired fibromyalgia patients have large lumps of calcium deposits sometimes referred to as scar tissue at their trigger points. Rhematologists have identified 18 specific trigger or tender points that they use to diagnose fibromyalgia. According to The American College of Rheumatology a person should have pain in a least 11 of 18 tender points to be diagnosed with fibromyalgia while other doctors think one can have fewer points. The truth is that there is a lot of variation in the symptoms of fibromyalgia patients and in one patient from time to time as the severity of the condition fluctuates.

One thing that all fibromyalgia patients have in common is that when they push their muscles beyond a certain threshold their condition worsens. The threshold varies from patient to patient and day to day in an individual patient. A severely ill patient will aggravate their condition by trying to perform simple tasks such as walking, climbing stairs or doing light housework. A less severe patient may lead a relatively functional life but their condition is aggravated by more rigorous activities such as exercise or gardening. One of the major misnomers of fibromyalgia is that exercise is beneficial. A certain amount of movement helps with the condition because it increases blood flow to the damaged tissue however increasing the demands of muscles beyond a person’s threshold with weight bearing and repetitive activity will result in a relapse in muscle injury and pain. Persons with fibromyalgia refer to a relapse as a “flare” which can aggravate into full body pain lasting several days or weeks. Severely ill fibromyalgia patients are in a flare all the time or as they say “24/7”.

The pain caused by the muscle condition of fibromyalgia ranges from mild discomfort to severe pain depending on the individual. The pain does not respond to anti-inflammatory drugs and is only marginally treatable with narcotic painkillers. Unfortunately many fibromyalgia patients end up on an illusive course of taking increasing amounts of drugs for pain relief which have horrible side effects. The only sure way to limit the pain is to limit one’s activities and to give the muscles plenty of rest after exertion. Other palliative measures include cold and heat therapy and very gentle bodywork such as Feldenkrais, Myofascial Release and Bowen Work. When my fibromyalgia is bad I put ice packs on the muscles I use each day. I also take lots of alternating hot and cold showers. The relief is temporary but is a useful coping tool to manage my pain.  I also have adopted a lifestyle where I constantly rotate my activities, never using any one set of muscles for more than 15 minutes.

Some fibromyalgia patients respond to large doses of magnesium, which relax the muscles and counters their tendency to over contract. I have a friend who manages her condition quite well simply taking magnesium supplements. Trans dermal application of magnesium are thought to be even more effective. A good source for magnesium oil, gel, lotion and flakes that are absorbed through the skin is http://www.ancient-minerals.com. Fibromyalgia patients have also reported a benefit from taking vitamin D and amino acids (see my post "Protein Deficiency" fibrofriends.typepad.com/fibro_friends/2009/01/protein-deficiency-fibromyalgia.html ), which many people are deficient in and can contribute to muscle pain and weakness.

Dr. R. Paul St. Amand promotes the treatment of fibromyalgia with the expectorant guaifenesin commonly found in over the counter cold remedies. St. Amand  believes that the retention of calcium in the cells of fibromyalgia is a result of an inability to produce energy or ATP (adenosine triphospate - a biochemical term for cellular energy) and an abnormality in phosphate excretion. His protocol, which involves taking regular doses of guaifenesin and avoiding products that contain salicylates has been helpful for some fibromyalgia patients. For more information go to: www.fibromyalgiatreatment.com. An interesting article by Mark London that thoroughly researches the use of guaifenesin for fibromyalgia can by found at http://web.mit.edu/london/www/guai.html.  According to London’s research guaifenesin acts as a muscle relaxant by depressing transmission of nerve impulses in the central nervous system.

Dr. Samuel Yue, a medical doctor in Minnesota believes that fibromyalgia is caused by a systemic deficit of relaxin hormone or the inability of the body to utilize this hormone. This hormone, which is associated with pregnancy when it is produced in large amounts is necessary to maintain the integrity of collagen and connective tissues of the body. He prescribes the hormone relaxin, which has been helpful for some fibromyalgia patients in releasing sustained muscle contractions and the resolution of their tender points. The hormone is available in a supplement form called “Vitalaxin” developed by Dr. Yue and is available from numerous supplement supply companies.

I have personally tried taking large doses of magnesium and vitamin D, did the guaifenesin protocol for four months and took relaxin hormone both orally and by injection under Dr. Yue’s supervision. Unfortunately I did not experience any change or improvement with these treatments however I do not dismiss testimonials by others who have found them helpful.

There are several flawed theories on the cause of fibromyalgia. One is that fibromyalgia is caused by not getting adequate sleep particularly in the deep REM stage. It is true that most if not all fibromyalgia patients suffer from insomnia but disordered sleep in my opinion is just another symptom of a syndrome that affects many systems of the body. Many individuals suffer from insomnia but do not have fibromyalgia and those fibromyalgia patients who take medications to improve their sleep still suffer from the disorder. Other theories suggest that fibromyalgia is caused by toxins or gastrointestinal inflammation. It is also true that many fibromyalgia patients have gastrointestinal issues and an impaired ability to eliminate toxins (read my post "Detoxification" fibrofriends.typepad.com/fibro_friends/2009/05/detoxification.html). While this is an important component in fibromyalgia syndrome, it is unlikely that toxins directly cause the muscle dysfunction experienced in fibromyalgia. Another theory is that fibromyalgia sufferers have some kind of impaired or altered perception of pain as if somehow their pain is not real or that bad, they just perceive it to be so. This theory should be soundly debunked and is an insult to anyone suffering from fibromyalgia and skilled physical therapists that can observe the abnormal muscle tissue in painful areas of the disorder.

In 1994 researchers at the University of Texas discovered an elevation in the level of the neurotransmitter Substance P in the spinal fluid of patients suffering from FMS. Substance P is a 11-amnio acid neuropeptide that is distributed throughout the peripheral and central nervous systems and is localized in the primary sensory neurons and the neurons intrinsic to the gastrointestinal tract. Researchers at Viral Immune Pathology (www.vipdx.com) have developed a test for cerebral spinal fluid which measures the amount of Substance P in patients and is a reliable diagnostic marker to differentiate between CFS and FMS. 

A 2002 study by a team of researchers at Oregon Health and Science University led by Robert Bennett, MD found that persons with fibromyalgia have an inability to secrete growth hormone during exercise. They surmised that another hypothalamic hormone – somatostatin – was probably blocking the release of growth hormone. This is a manifestation of a disordered hypothalamic-pituitary-adrenal (HPA) axis found in persons with Chronic Fatigue and Fibromyalgia Syndromes. Treatment with daily Human Growth Hormone injections is expensive but has been reported to improve quality of life and energy level, reduce pain, and improve exercise capacity and muscle strength. An inexpensive, safe alternative to HGH injections is a homeopathic HGH spray reported by some to have positive results. Go to: www.drmaxpowers.com.

A couple of interesting scientific studies were conducted on the muscle; and collagen and muscle pathology in fibromyalgia patients by the Parker Institue, Department of Rheumatolgy and the Danish National Library of Science and Medicine in Copenhagen, Denmark. They found that fibromyalgia patients had a significantly lower amount of intramuscular collagen that may lower the threshold for muscle micro-injury and thereby result in nonspecific signs of muscle pathology. Studies on muscle metabolism in fibromyalgia patients showed that there is a defect that is not seen at rest and when the patient is working at a submaximal load, but is seen under maximal loading and under static contraction. Blood flow did not increase as the load increased indicating a disturbed local regulation of microcirculation; lower levels of ATP and phosphocreatine were found in muscle biopsies of fibromyalgia patients; and fibromyalgia patients had EMG activity between muscle contractions indicating a prolonged relaxation or recovery time in patients withfibromyalgia.  http://rheumatology.oxfordjournals.org/content/43/1/27

It is my personal opinion that the muscle condition of fibromyalgia is a symptom of dysfunction in the Central Nervous System resulting from a protective response of the brain to physical stress and trauma. In my case this was due to the prolonged stress of living with an obstructive breathing disorder that became increasingly difficult to compensate for and eventually lead to a state of neurological exhaustion. The actual tipping point for me was rehearsing a very difficult piano piece on a poor instrument which set in motion some sort of trauma to my neuromuscular system. This incident occurred after I had struggled with chronic fatigue for 28 years, was functionally hypothyroid and had just entered menopause. Others develop fibromyalgia after some traumatic event such as a car accident, surgery, childbirth, toxic exposure or physical abuse. When confronted with severe trauma the brain “shuts down” and becomes less flexible and more reactive. It is important to note that the mechanisms and triggers for pain are not the same in all patients with fibromyalgia however all share in common a state of central sensitization. 

Dr. Paul Whitcomb whom I have written extensively about in my blog was able to help many fibromyalgia patients at his clinic by doing frequent adjustments to the top vertebrae of the spine, which resulted in dampening the agitated nervous system. For a fortunate few the results were long lasting. For others including myself the relief was temporary. Check my post “Paul Whitcomb – Friend or Foe” http://fibrofriends.typepad.com/fibro_friends/2008/08/paul-whitcomb---friend-or-foe-1.html.  I have since discovered a gentle movement employed by Bowen Work and cranial sacral therapists at the base of the head that calms the nerves to the peripheral muscles, basically accomplishing the same thing that Whitcomb did with a lot less force and without hurting the neck. However as with Whitcomb's technique the effects are temporary. 

In 2007 I was diagnosed with an obstructive breathing problem by Dr. Farrand Robson and began treatment for that with Oral Systemic Balance a therapy that uses oral appliances or mouth pieces to facilitate ease of breathing. To read more about that go to my post http://fibrofriends.typepad.com/fibro_friends/2010/02/oral-systemic-b.html. At the time my fibromyalgia was quite severe causing me to be in pain most of the time and making it difficult for me to drive a car, carry grocery bags or walk more than one block.  Although I experienced dramatic improvements in my health with OSB and a resolution of the underlying stressor that led me to develop chronic fatigue syndrome, many symptoms including my fibromyalgia muscle condition did not go away. This I believed was the result of traumatic injury to my nervous system after years of living with profound physical. Recovery required me to find additional therapies to reverse these dysfunctions.  

The field of neurofeedback specifically addresses dysfunction of the Central Nervous System and offers a lot of promise for those suffering from fibromyalgia as well as many other chronic disorders. Some people have reported good results from doing programs of EEG biofeedback or neurofeedback training. The patient sits in a comfortable chair with sensors placed on either side of the scalp, which are attached to a computer that picks up brain wave activity. Feedback is produced through visualization on a computer monitor and sound and is monitored by a neurofeedback technician. The patient receives positive feedback when it moves towards a more balanced and flexible pattern. I did over 50 sessions of Zengar neurofeedback training and although I made progress in each session, they did not results in improvements in my health. I think this was because my dysfunctional brain patterns were very entrenched.

I then learned about an entirely different form of neurofeedback called “Low Energy Neurofeedback Systems or LENS, which has been helpful for people who do not respond to neurofeedback training and achieves results in less time.  A LENS session lasts only seconds as opposed to a neurofeedback training session, which typically lasts around 45 minutes. During a LENS a person receives feedback of its own dominant brain wave frequency at a slight offset. The brain recognizes its own pattern and shifts away from it. What is unique about LENS is that the shifts are permanent and the brain reintegrates healing on its own. I experienced moderate improvements in many symptoms with LENS but my muscle condition did not improve. For more information go to: www.ochslabs.com. 

In the book "The Healing Power of Neurofeedback" by Stephen Larsen there are references to the additional benefits of surface EMG biofeedback training for fibromyalgia patients doing LENS. An electromyograph (EMG) is an instrument that uses surface electrodes to detect muscle contraction using one or more active electrodes that are placed over a target muscle and actively record the muscle tone in microvolts. Paying attention to this feedback one can manipulate and decrease agitated muscle contractions. I found an inexpensive home unit on the Internet manufactured in England by Verity Medical Let and distributed by Win Health at www.win-health.com/neurotrac_simplex.html. I began practicing for a half hour once or twice a day, training my muscles tone to decrease. Within several weeks I noticed an improvement in my muscle tone resulting in an increase in the amount of physical activity I could "get away with". Doing daily biofeedback training provides a valuable tool to help my muscles recover more quickly after exertion but it does not prevent injury from reoccuring. To read more about various forms of biofeedback and neurofeedback and my experience with them read my post "Biofeedback Therapies for CFS & FMS"  http://fibrofriends.typepad.com/fibro_friends/2010/05/biofeedback-therapies-for-cfs-fms.html 

Low Intenstiy/Level or "Cold" Laser Therapy is a treatment that is helpful for treating pain in some people with fibromyalgia. It involves the application of red to near infrared light produced by Low Level Lasers Diodes (LLLD) and/or Superluminous Diodes (SLD) over the skin which results in a healing response of the tissues. This healing response includes increased production of ATP, RNA and DNA synthesis, serotonin and endorphins, collagen synthesis, growth hormone and improved lymphatic drainage. I explored a form of Low Intensity Laser Therapy manufactured by a company called MediTech used by my chiropractor. The pain relief was moderate and not long lasting. For more information on light therapies and my personal experience read my post "Phototherapy - Healing with Light".  http://fibrofriends.typepad.com/fibro_friends/2010/07/phototherapy-healing-with-light.html 

The developing fields of energy medicine which employ various forms of electrical current to help the body heal are also helpful in the treatment of fibromyalgia. These therapies employ non-invasive devices that generate low levels of electrical energy to stimulate cellular repair. Cell membranes vibrate at specific frequencies and diseased cells have weaker amplitudes and unbalanced electronic charges in the molecules often referred to as free radical damage. The therapies work by re-charging the damaged molecular systems and thus restoring balance and increased energy into body systems. Studies have demonstrated their effectiveness in healing soft tissue wounds, aiding in bone growth and repair, suppressing inflammatory responses at the cell membrane level and alleviating pain.

Dr. Carol McMakin is a chiropractor in Portland, Oregon who specializes in a treatment called Frequency Specific Microcurrent, which employs microamperage current and the resonance effects of specific frequencies on tissues and conditions to create beneficial changes in symptoms and health. FSM is effective at treating nerve and muscle pain, inflammation and scar tissue. McMakin has developed one frequency combination that has been observed to eliminate severe all body pain in fibromyalgia associated with spine trauma.  She reports success treating hundreds of fibromyalgia patients with this protocol. For more information go to: frequencyspecific.com.

Another form of energy medicine employed mainly by LENS practitioners as an adjunct therapy to neurofeedback is NeuroField, a pulsed electromagnetic field therapy developed by Dr. Nicholas Dogris which treats the energy field around a person with specific frequencies shown to be beneficial for various conditions. I spent seven months doing NeuroField treatments in conjunction with LENS treatments with a therapist in California with modest improvements in my overall health. To read more about my experience and the entire field of energy medicine read my post "Energy Medicine of the Future"http://fibrofriends.typepad.com/fibro_friends/2011/03/energy-medicine-of-the-future.html.

"The Energetic Fitness System" is a static electrical energy field therapy based on the science of Nicola Tesla. This therapy differs from other forms of energy medicine because the electrical frequencies are not set by a computer program determined by a practitioner. Rather the energy field produces analog harmonic frequency patterns that are rapidly changing and different for each person; the theory being that the individual using EFS "tunes" to the energetic field and gets the frequencies he or she needs to heal and balance their body. I have personally found EFS to be the most beneficial form of energy medicine that I have used. For more information on EFS and my personal experience with it read my post "Energetic Fitness System"  http://fibrofriends.typepad.com/fibro_friends/2011/07/energetic-fitness-system.html. 

In conclusion the condition of fibromyalgia varies from person to person, however most have in common an agitated nervous system that results in dysfunctional muscle function and pain in the connective tissues. Recovery requires a combination of therapies that can address underlying causes of stress on the body, calm the nervous system and provide the body with energy to heal. Just as there is no one cause of fibromyalgia, there is no one "cure" or treatment that works for everyone. Each person must find through trial and error what works for them. Considering the fact that most of the effective therapies are not covered by health insurance or even known about in the medical community, this makes the task of getting better difficult. I am hopeful that effective therapies will eventually become more available and contribute to an improved quality of life for those suffering from fibromyalgia. 

Fibromyalgia Awareness Day - A Message of Hope

Fibromylagia Syndrome (FMS) is a debilitating health condition that is largely misunderstood by the public and health care establishment. Patients suffer from a variety of complaints including all over muscle and body pain, insomnia, gastrointestinal issues, brain fog, and fatigue. When they seek help from medical doctors their symptoms are often dismissed as being psychosomatic in origin, which compounds the emotional stress of living with the condition. There is a wide range in the degree of severity in people with FMS but many are too disabled to work full time or to work at all. The condition places tremendous pressure on personal relationships, marriages and families. In the face of all this suffering it is easy to lose hope.

In the summer of 2008 I started a blog entitled "Fibro Friends" dedicated to providing information about fibromyalgia and its closely related condition Chronic Fatigue Syndrome (CFS).  The blog is a result of my exhaustive search over for the past 30 years to find effective treatments to improve my health. I began suffering from Chronic Fatigue Syndrome in 1973 and Fibromyalgia in 2001. The primary difference between Chronic Fatigue and Fibromyalgia Syndromes is that Fibromyalgia includes an agitation of the neuromuscular system resulting in chronic pain. (For more on this read my post "Fibromyalgia Muscle Dysfunction" http://fibrofriends.typepad.com/fibro_friends/2009/12/f.html.) I have spent the equivalent of a part time career consulting health care professionals and trying various treatments and therapies. The vast majority of the things I tried were not helpful, which I summarize in my post "What Didn't Work" http://fibrofriends.typepad.com/fibro_friends/2009/07/what-didnt-work.html.  However in recent years I found a number of therapies that brought about a significant improvement in my health and a gradual reversal of my symptoms. These therapies are not well known either in the main stream or alternative medical communities or the fibromyalgia patient community. 

The first significant breakthrough for me happened in 2005 when I learned about Wilson's Low Body Syndrome and followed the specific protocol developed by Dr. Denis Wilson to raise my body temperature to 98.6 degrees. According to Wilson's theory many individuals develop symptoms of hyperthyroidism, which include fatigue, constipation, low body temperature and a slow pulse after long periods of stress. This can be reversed by taking compounded T3 or liothyronine for a period of time in a prescribed way. For more information on this go to: www.wilsonssyndrome.com.

The most important breakthrough for me began in 2007 when I improved my ability to breathe with oral appliances designed by a TMJ dentist named Dr. Farrand Robson. Robson has developed a cutting edge science called Oral Systemic Balance that helps facilitate ease of breathing, speaking and swallowing. Many people with FMS and CFS as well as other chronic illnesses have benefited from this therapy. It is my personal opinion that impaired breathing due to a restricted air passage is a predisposition to developing CFS and FSM. For more information read my post "Oral Systemic Balance" http://fibrofriends.typepad.com/fibro_friends/2010/02/oral-systemic-b.html.

A third significant breakthrough occurred when I started doing LENS or Low Energy Neurofeedback System, a unique form of neurofeedback developed by Len Ochs, PHD that is particularly effective in healing traumatic brain injury and disorders of the Central Nervous System. The system operates entirely different from traditional EEG or neurofeedback training. Treatment involves very short (a few seconds per session) feedback of the dominant frequency the brain is producing at an offset, which results in the brain jumping out of its existing patterns and breaking up dysfunction. It has been helpful for many people with CFS and FMS who suffer from dysfunctional brain patterns as a result from living with neurological exhaustion and physical stress. For more information read my post "Biofeedback Therapies for CFS and FMS" http://fibrofriends.typepad.com/fibro_friends/2010/05/biofeedback-therapies-for-cfs-fms.html.

Presently I am exploring a form of energy medicine called the Energetic Fitness Systems that provides energy to the body to help it heal. Based on the work of the scientist Nikola Tesla, the technology creates analog harmonic frequency patterns that are different for each person. The user sits in a non-metal chair with bare feet on an energized glass plate while holding a 5-inch diameter energized glass bulb in the hands while high voltage with no current at a broad spectrum of random wavelengths is maintained between the hands and the feet. I think this therapy has tremendous potential for helping individuals with CFS and FMS.  For more information go to: http://energeticfitness.com/ and watch for my upcoming post as I report my experience and research.

Of paramount importance to healing from CFS and FMS is following a healthy diet devoid of drugs, stimulants and depressants. Other ancillary therapies that helped me were short term use of hydrocortisol and a couple of patented nutritional supplement formulas MAX GXL and Platinum Plus Amino Acid; mud pack detoxification therapy; and biofeedback self-regulation techniques.  I summarize these treatments and many others in my opening post "Chronic Fatigue and Fibromaylgia" http://fibrofriends.typepad.com/fibro_friends/2011/05/chro.html with links to the appropriate websites. Then in subsequent posts I discuss in detail various treatments and topics. 

My personal opinion is that there is no single cause of CFS and FMS, that these are conditions that result from an accumulation of physical stress and trauma for which the body cannot accommodate. For more on this read my post "What Causes CFS and FMS" http://fibrofriends.typepad.com/fibro_friends/2010/08/what-causes-chronic-fatigue-and-fibromyalgia-syndromes.html. Reversing these syndromes requires a combination of long term strategies and treatments that will provide the body the energy and capacity to heal. It is important to understand that each individual has a unique presentation of these conditions and what works for one person may not be helpful for another. One can only find out through trial and error what is beneficial. Since there are few health care professionals that understand fibromyalgia or chronic fatigue syndrome and few effective treatments that are covered by health insurance this leaves the exhaustive task of pursuing and financially funding treatments to the individual. It is my dream that someday patients can go to a clinic where comprehensive care with cutting edge treatments are available and affordable but for now the road to recovery although possible is a difficult and expensive undertaking. 

In conclusion I want to embrace all those who are suffering from the devastating conditions of Fibromyalgia and Chronic Fatigue Syndromes and to let them know that they are not alone. We can learn from our shared experiences and pursue the hope of getting better together. We are each of us pioneers in our experience with these illnesses, in our quest for validation from society and our search for understanding and healing. 

(For more inspiration read my post "Hope" http://fibrofriends.typepad.com/fibro_friends/2010/08/hope.html .)

Energy Medicine of the Future

The term "Energy Medicine" refers to therapies that use energy or physics rather than chemistry to heal. These therapies are generally divided into two categories: putative energy fields that are theorized and cannot be measured or presently confirmed by scientific investigation; and veritable energy fields that can be measured and proven scientifically. 

Examples of putative energy field therapies include acupuncture and acupressure, Reiki, Qi Gong, therapeutic touch, hands on and distant healing, and applied kinesiology (muscle testing). These therapies are based on the premise that all bodies are infused with a subtle energy or vital life force referred to as "qi" or "chi" in Chinese medicine and "prana" in Ayurvedic medicine. The health of a body's energy is determined by the overall flow, balance, and harmony of a person's vital force energy; and imbalances or blockages in the natural flow of energy fields in the body can result in disease. Acupuncture and acupressure are believed to act by correcting imbalances in the flow of energy along meridians or energy channels.  In therapies such as healing touch and Reiki, a healer is believed to emit and transmit healing energy to a recipient as a way to restore health. Some of these therapies are associated with religious ideas of spirit and the power of prayer. 

Examples of veritable energy field therapies include light therapies which I discuss in my post "Phototherapy" http://fibrofriends.typepad.com/fibro_friends/2010/07/phototherapy-healing-with-light.html, microcurrent therapies which I discuss in my post "Frequency Specific Microcurrent http://fibrofriends.typepad.com/fibro_friends/2012/01/freq.html, vibrational therapies, magnetic therapies, cymatic therapy that uses sound waves, and pulsed electromagnetic field therapies. These therapies are based on the fact that all living beings are primarily energetic and governed by electrical impulses. They employ devices that generate low levels of energy at specific frequencies and amplitudes that promote healing. The science and technology of these therapies is developing rapidly and provides effective nonpharmalogical treatments for many chronic conditions. 

Like many persons with Chronic Fatigue and Fibromyalgia Syndromes I have pursued a variety of putative energy field therapies including extensive treatments of various forms of acupuncture. Although I received temporary relief from acupuncture, these treatments became less effective over time and failed to address the systemic causes of my health condition. I have never benefited from the more esoteric forms of energy healing like Reiki. Although I remain open minded about these kinds of therapies and believe they can elicit a relaxation response in many individuals, I do not think that they are in and of themselves an effective strategy for healing from CFS or FMS.

One of the most promising veritable energy field therapies is Pulsed Electromagnetic Field Therapy or PEMFT. This therapy employs non-invasive devices that generate electrical energy and direct a series of magnetic pulses that induce tiny electrical charges to stimulate cellular repair. One of the properties of PEMF that make it particularly effective is that it can penetrate through matter with relatively low energy loss. Many studies have demonstrated the effectiveness of PEMF in healing soft tissue wounds, aiding in bone growth and repair, suppressing inflammatory responses at the cell membrane level and alleviating pain. Beginning in 1979 the FDA began approving PEMF devices for such uses that are now employed in mainstream medical settings. 

PEMF generators (also known as magnetic resonance stimulators) are also used to simulate or mimic the naturally occurring earth based energies or electromagnetic fields in our environment. Originally developed for use in modern spacecraft after the first astronauts and cosmonauts became ill when they went into space, devices employing similar technologies are now used to combat electromagnetic pollution or smog and to promote health maintenance in general. 

There are three kinds of bioenergetically active signals in our natural environment:

1. Schumann Resonances - electromagnetic waves produced and excited by electrical currents in lightning (every second approximately 200 lighting strikes occur somewhere on earth) which are trapped in the ionosphere, a resonant cavity surrounding the earth between its surface and 100 kilometers above its surface. Originally observed by the physicist Nikola Tesla and then named for the German physicist Otto Schummann who discovered in 1954 that these waves have a main frequency of 7.8 Herz. This is the same frequency as the alpha rhythm of the brain. 

2. Geomagnetic waves - electromagnetic waves produced by 64 vital trace elements or minerals found in the earth's crust each possessing its own specific vibration. These are the same vital minerals found in the red blood corpuscles of human beings.

3. Solar waves - Ultra High Frequency (UHF) electromagnetic waves that correspond to natural sunlight.

These three natural electromagnetic signals are essential for the health and optimal functioning of all living organisms. Ancient Chinese teachings state that human beings need two balanced environmental signals to achieve good health: the YANG or masculine signal from above which corresponds to the Schumann resonances and the YIN or feminine waves coming from below which correspond to the relatively weaker geomangetic waves. Research done by the German physicist Dr. Wolfgang Ludwig  confirmed that human health depends on these natural electromagnetic signals. 

A number of factors have altered the natural electromagnetic geomagnetic environment that we presently live in. Over the past 100-300 years the earth's magnetic field has declined 50% and human development has resulted in a lowering of the water table. Man-made radio frequencies and electromagnetic fields created by power transmission lines, radio transmitters, wireless devices, cell phones, computers and microwaves have also altered the natural electromagnetic and geomagnetic environment.  Compound this with the fact that the average person spends most of the day indoors shielded and insulated from the earth's natural EMFs and walks outside on asphalt in insulating footwear and there is a powerful case to be made that all of this is contributing stress in living creatures on earth.

There are many technological devices on the market that claim to protect the body from the harmful effects of man-made electromagnetic pollution and stimulate earth based frequencies. One is Earthing which I discuss at length in my post "Earthing - Healing from the Ground Up"  http://fibrofriends.typepad.com/fibro_friends/2011/01/earthing-healing-from-the-ground-up.html . Another company called Earthcalm http://earthcalm.com/ produces devices that employ scalar resonance technology to mirror the structure of the earth's EMFs. The effectiveness of these devices varies with from individual to individual and the science behind many of them remains controversial. 

The MRS2000 is a PEMF generator designed for personal use that duplicates or mimics in intensity and frequency the earth's natural electromagnetic signals. Described as a "whole body battery charger" that provides a catalyst for energy production in the cells and helps to increase oxygenation, hydration and nutrient absorption; improve circulation; balance the sympathetic and parasympathetic nervous system and promote deep relaxing sleep; and alleviate pain and inflammation, the MRS2000 is recommended for health maintenance as well as resolution of chronic health problems. The device includes a full body mat that persons lie on for 8 minutes twice a day and an applicator probe for use on problem areas. Testimonials on the benefits of using the MRS2000 include many people with CFS and FMS. An informative website belonging to a MRS2000 distributor is: http://gaiaresonance.com.

My own experience with the MRS2000 was negative resulting in a dramatic aggravation of my nervous system and a flare up of my fibromyalgia after lying on the mat for only two minutes at the most sensitive level and setting. A "fibro friend" of mine also tried the unit with no improvements and an agitation of her nervous system after 4 sessions. Needless to say I am one of the most sensitive/reactive individuals out there. But the question remains if a magnetic or electron deficiency is a contributing factor to developing chronic fatigue and or fibromyalgia syndromes. I do not think this is the case for myself because the onset of my illness preceded the general use of personal computers, cell phones and microwaves and I do not feel any different camping out in the wilderness far away from modern technologies as I do at home. I think there is evidence that chronic fatigue and fibromyalgia like symptoms can result from electromagnetic pollution. Individuals may be sick due to living in proximity to a cellular tower or power transmission lines and may be particularly sensitive to the radiation coming from wireless devices, computers and microwave transmissions including microwave ovens and cell phones. Safe Living Technologies Inc. is a company that provides a lot of good information on the subject as well as technology and products to evaluate and protect your home from electromagnetic radiation. http://safelivingtechnologies.ca/.  

One of the most promising therapeutic technologies in the field of energy medicine today is NeuroField. (www.neurofield.org)  Developed after years of research by a psychologist named Nicholas Drogris, PHD it employs a PEMF generator, the NeuroField X1000 with specific treatment protocols for various conditions. Described as an energy replenishment and stress reduction device, NeuroField is generally used by psychologists to enhance the effectiveness of traditional neurofeedback and LENS (Low Energy Neurofeedback System). Dr. Dogris worked closely with Len Ochs, PHD the developer of LENS a unique form of neurofeedback that involves feedback lasting only a few seconds of dominant frequencies at slight offsets. This feedback which is given at each of 20 different sites of the brain determined by a diagnostic brain map results in breaking up dysfunctional patterns which stimulates the brain to move towards more healthy balanced patterns. In other words LENS is a disentrainment neurofeedback device that disrupts the brain, causing it to re-organize itself. Dr. Dogris observed that this process pulls a lot of energy from the body. He hypothesized that better results might be obtained when the body had the energy to repair itself which led him to develop NeuroField.  (For more information on various forms of biofeedback and neurofeedback including LENS go to: http://fibrofriends.typepad.com/fibro_friends/2010/05/biofeedback-therapies-for-cfs-fms.html.)  

NeuroField is based on the same principles as other forms of energy medicine - that we are primarily energetic beings and that our biology is a summation of a dynamic interconnected web of energy. Energy is stored in every cell of the body and the overall "biofield", a term describing the subtle field that permeates and extends beyond the physical body is a summation of energy emitted from every cell in the human body. Cell membranes vibrate at specific frequencies. Diseased cells have weaker amplitudes and unbalanced electronic charges in the molecules often termed as free radical damage. The NeuroFieldX1000  acts by supplying pulses of energy into the biofield at specific frequencies and amplitudes determined by studying healthy body function, re-charging the damaged molecular systems and thus restoring balance and increased energy into body systems. The generator is operated by a sophisticated software program that individualizes treatment and is connected to a specialized cap that supplies EMF pulses into the field of energy around the skull and travels to other regions of the body. 

My own healing journey is presently benefiting greatly from NeuroField in addition LENS treatments. I began this combination of therapies a couple of months ago after reaching a plateau in my recovery with LENS treatments alone. I was aware that some LENS practitioners were getting better results especially for physical problems with the addition of NeuroField. In November of 2010 I traveled to Bishop, California to be evaluated by Dr. Dogris who did a Quantatative Electroencephalograph (QEEG) map on 20 sites of the brain. The evaluation showed "seizure-like" activity in my brain in several sites and suppression or inhibition of function in others. This type of pattern is typical of individuals who have experienced severe stress.  Although I have recovered completely from chronic fatigue my nervous system remains hyper vigilant and fragile after years of struggling in an exhaustive state due to oxygen deprivation.  This explains my remaining symptoms which include disturbed sleep, fibromyalgia muscle flares after physical exertion and severe sensitivity to stimulants; and also could explain my adverse reactions with other therapies. Dr. Dogris was optimistic that NeuroField could help me and at the end of 2010 I began weekly treatments with Dr. Candia Smith in Orinda, California (the closest practitioner to my home in the Seattle area). NeuroField combined with LENS treatments recently developed by Len Ochs for highly reactive individuals is proving to be the winning combination facilitating my recovery. I have seen a dramatic improvement in my remaining symptoms over the course of treatments during the past two months and I am optimistic that with time my brain and body will restore and maintain balance. 

Although my sensitivities and reactiveness are severe compared to most other individuals, imbalance of the sympathetic and parasympathetic nervous systems is common in all people with CFS and FMS. I think my case is more pronounced because of the length of my illness, the fact that I have successfully treated all secondary infections and pathogens - conditions that tend to suppress the nervous system, and the fact that I do not take any sleep aids which basically act by suppressing the electrical activity of the brain. 

Another interesting technology in the field of energy medicine is the Energetic Fitness Systems. Described as a tool for balancing the body's energetic system, the system generates a broad range of rapidly changing frequencies that are not programmed and are different for each person. The user sits in a non-metal chair with bare feet on an energized glass plate while holding a 5-inch diameter energized glass bulb in the hands while high voltage with no current at a broad spectrum of random wavelengths is maintained between the hands and the feet. The system has helped many individuals with fibromyalgia.  For more information go to: http://energeticfitness.com/ and read my post "Energetic Fitness Systems http://fibrofriends.typepad.com/fibro_friends/2011/07/energetic-fitness-system.html .

I think that the emerging therapies of energy medicine hold tremendous potential for the treatment of disease and the maintenance of health. Eventually most putative fields of energy will be verified by scientific study confirming what the ancients and healers have intuitively observed for centuries. When this knowledge is combined with cutting edge forms of technology and biofeedback we will have an effective foundation for medicine in the future. 

Biofeedback Therapies for CFS & FMS

The scientific field of biofeedback holds great potential for helping persons with chronic fatigue and fibromyalgia syndromes. I have personally benefited from several biofeedback therapies that have relieved and ultimately eliminated some of my most difficult symptoms. These modalities have none of the risks and side effects associated with pharmaceutical drugs and they can result in profound shifts in physiology along with an increased awareness and control of subtle internal bodily functions.

Three professional biofeedback organizations: The Association for Applied Psychophysiology and Biofeedback (AAPB), Biofeedback Certification Institution of America (BCIA) and the International Society of Neurofeedback and Research (ISNR), arrived at the following consensus definition of biofeedback in 2008. "Biofeedback is a process that enables an individual to learn how to change physiological activity for the purposes of improving health and performance. Precise instruments measure physiological activity such as brainwaves, heart function, breathing, muscle activity, and skin temperature. These instruments rapidly and accurately 'feed back' information to the user. The presentation of this information - often in conjunction with changes in thinking, emotions and behavior - support desired physiological changes. Over time, these changes can endure without continued use of an instrument."

My first experience with biofeedback was in the mid-1970's when I did EMG biofeedback at the University of Washington for the treatment of chronic tension headaches that began with the onset of my chronic fatigue. An electromyograph (EMG) is an instrument that uses surface electrodes to detect muscle contraction. EMG biofeedback employs this instrument to measure the surface electromyogram (SEMG) using one or more active electrodes that are placed over a target muscle and actively record the muscle tone in microvolts. In my case the electrodes were placed over tense, knotted muscles on either side of my neck. Paying attention to feed back of muscle tension displayed as a needle on an instrument box, I was able to manipulate and decrease the agitated muscle contractions. Within several months my headaches were significantly better. In addition to the EMG biofeedback I learned that I also needed to avoid stimulants including alcohol, caffeine and sugar which contributed to the muscle tension and headaches. 

Beginning in the 1980's I began to suffer from night sweats that interrupted my sleep and eventually resulted in severe insomnia. My night sweats began as chronic episodes lasting several hours usually between 2:30 and 4:30 am and progressed to ongoing regular occurrences that lasted most of the night. I got temporary relief with Chinese herbs and acupuncture but built a tolerance to these as well as sleep aids. Finally in 1998 a biofeedback therapist taught me a simple skin temperature biofeedback skill called "Hand-Warming" which literally saved my life. This skill which employs a feedback thermometer with a sensor taped to one's finger is helpful in preventing migraine headaches. It counters a stress response in the body that blocks circulation to the extremities. By paying attention to the digital temperature display and imagining my hands were getting warmer, I was able to raise my skin temperature above 95 degrees which induces a relaxation response. I purchased an inexpensive indoor-outdoor thermometer from Radio Shack and attached the "outdoor" sensor to my finger with First Aid tape. Practicing on my own for about a week I was able to master the skill of raising my temperature at will. When I experienced night sweats this skill stopped the heat and allowed me to go back to sleep. Sometimes I had to repeat this skill 5-10 times a night but I was sleeping! I have shared this skill with a number of friends who suffer from migraine headaches and they are able to prevent a migraine with this technique.

After learning the Hand-Warming skill I began EEG biofeedback or neurofeedback training. An electroencephalograph (EEG) is an instrument that measures the electrical activity of the brain or brain waves using electrodes that are placed at specific locations on the scalp. Various amplitudes or rhythms of brain waves correspond to different states of consciousness. For example delta waves correspond to deep sleep, theta to dream-like states, alpha to meditation and beta to mental focusing and problem-solving. In EEG biofeedback training a person learns to manipulate brain waves through visual and auditory feedback to produce a desired brain wave pattern. People with ADD benefit from beta training. I did "alpha-theta" training which is beneficial for those suffering from post traumatic stress and addiction. The training taught me to achieve an optimal meditation state. 

Armed with these new biofeedback skills I was better able to cope with the stress of my health condition but the condition did not go away. Even in the best times I still felt like I was driving a car that was slightly out of control. The root source of my problems had not yet been identified and it became increasingly difficult to keep symptoms at bay. In 2001 at the onset of menopause I developed a type fibromyalgia or muscle dysfunction, another condition resulting from the body's response to severe physical stress.  

Then finally in 2007 the underlying source of stress on my system was diagnosed as an obstructive breathing problem and treated successfully with Oral Systemic Balance. For more on this go to: fibrofriends.typepad.com/fibro_friends/2010/02/oral-systemic-b.html. I no longer suffered from chronic fatigue and I did not acquire additional symptoms after that time. My health felt like it had a strong foundation however I still struggled with disturbed sleep, a hyper reactive nervous system and fibromyalgia muscles dysfunction that prevented me from exercising or practicing the piano on a regular basis. I suspected that this was a result of the collateral damage to my nervous system from living in an exhaustive, survival state for over 30 years. At this point I began to investigate other therapies that might augment my recovery including neurobiofeedback, a field that had developed considerably since my experience with it ten years before. 

In 2008 I did over 60 sessions of neurobiofeedback training with a system called NeuroCare (now called NeurOptimal) developed by the Zengar Institute.  Zengar's system does not target or train specific brain wave patterns or treat different conditions with different protocols, rather it is designed to train the entire Central Nervous System and make the brain function more efficiently in general. Training sessions involve sitting in a comfortable chair with sensors placed on either side of the scalp that pick up brain wave activity. Feedback of brain wave activity is obtained by watching a video of moving graphic designs on a computer monitor and listening to music. The process and thresholds are monitored by a technician. When the brain is unproductive the video or music is interrupted and when the brian makes appropriate adjustments the video and music restart.  Neurofeedback training is helpful for people suffering from many symptoms of a malfunctioning Central Nervous System including memory problems, insomnia, depression, anxiety, hyperactivity, addictions and poor concentration and performance. My therapist said that she had successfully treated several patients with fibromyalgia. I personally experienced no improvement in the symptoms for which I sought therapy however I did notice an improvement in my cognitive abilities. For more information on this system go to: www.zengar.com.

After working unsuccessfully with the Zengar System my therapist suggested I try a different form of neurofeedback called LENS or Low Energy Neurofeedback System. Developed by Len Ochs, a pioneer in the neurofeedback field, LENS operates entirely different from traditional EEG or neurofeedback training, in fact it does not exactly fit the definition of biofeedback arrived at by professional organizations. Rather than training the brain with feed back to produce desired brainwave patterns, LENS feeds back a person's own brain waves at a slight alteration or offset. People are hypersensitive to their own brain waves. If you feed back the dominant brain waves it can amplify these waves creating an unstable condition provoking for example a seizure in someone with epilepsy. Ochs discovered that if you feed back a person's brain wave at a slight offset, the brain waves will lose amplitude and break up dysfunctional or stuck patterns. This disruption causes the brain to heal on its own. LENS is therefore a system of disentrainment as opposed to biofeedback training. The treatments are very short lasting only a few seconds in duration and involve no conscious effort on the part of the patient. The practitioner determines the variation of the feed back offset based on the patient's history and previous response to treatment. LENS also differs from other forms of neurofeedback in that is treats 21 different sites on the scalp, one at a time in a specific order determined by a brain map of the individual. The intensity of the radio waves in the electromagnetic field used in LENS are extremely weak, less than a trillionth of a watt. The changes produced however are quite profound and usually permanent requiring no further treatment once a course of LENS is completed. LENS is effective for treating all dysfunctions of the Central Nervous System including autism and head injury. It is especially effective for those that suffer from trauma, both psychological and physical.

In August 2009 I started LENS treatments at Ochslabs, the LENS center in Sebastopol, California working with Cathy Wills, Len Ochs' partner who helped development treatment protocol and is a trainer for LENS training practitioners. Cathy told me that my case was particularly difficult due to my severe sensitivities and reactiveness. We started treating one site per session at a large offset, once a week. After each treatment I felt a shift in my energy and symptoms, sometimes feeling worse for a period of hours or days. My breakthrough came after session four which was followed by a 14 day roller coaster of symptoms including every kind of headache I had ever experienced, anxiety, depression and gastrointestinal pain. When the symptoms finally subsided, I felt much better than before the treatments and started for the first time in over ten years getting some long stretches of deep sleep. After this positive response to LENS, I began working with a practitioner in my area named Aimee Rhoads. Gradually I was able to tolerate treatments with no adverse reactions at a shorter offset and then two treatment sites per session, signs that I was becoming more hardy and less hypersensitive. Over the past nine months of treatment I have observed a gradual decrease in my sensitivities, a calming of my nervous system and improved sleep. Chronic symptoms of dry mouth, left sided pain pattern and loose stools are gone most of the time. I still experience agitations of my nervous system when these symptoms reoccur but the general pattern is one of improvement. Cathy anticipated that my course of treatment would be a long one given my hyper-sensitivities and that seems to be the case.

One interesting phenomena that occurred for a period of several months immediately after my LENS sessions was I had this strong aromatic taste in my mouth followed by strong smelling urine. My intuition is that this was a manifestation of detoxification and that LENS was breaking up dysfunction patterns in the brain that cause impaired detoxification. If this is the case LENS offers a huge breakthrough in the treatment of CFS and FMS. For more on this go to my post Detoxification: fibrofriends.typepad.com/fibro_friends/2009/05/detoxification.html.

LENS was not that effective in helping my muscle dysfunction so I continued to look for solutions for this. The Healing Power of Neurofeedback a book about LENS by Stephen Larsen, has an excellent chapter entitled "Fibromyalgia, Lyme Disease and Chronic Fatigue Syndrome". It mentions some case studies of fibromyalgia patients who recovered from fibromaylgia with LENS along with EMG biofeedback training. Although I was not successful in finding out any specific information on the protocols used I was able to locate an inexpensive EMG home unit on the Internet. I had experience years before with EMG helping my headaches but my fibromyalgia muscle dysfunction was systemic affecting all the muscles of my arms, hands, feet and legs so I was not sure this would work. I began practicing daily on my own, retraining my muscle tone to decrease by sticking sensors on the tender points on my arms and legs and watching a digital display that measures muscle tension in microvolts. Over the course of a half hour I can decrease the muscle tone considerably. Every so often I move my muscles which corresponds to an increase in muscle tone and then afterwards get my muscle to relax. Within a couple of weeks of practice I observed a marked improvement in my muscle function and an increased ability to sustain activities without injury which corresponded to decreased muscle tone in my EMG sessions. EMG biofeedback training is more difficult and time consuming to learn than Hand-Warming and I have not figured out a way as yet to visualize my muscle contractions decreasing other than watching the digital display on my instrument. Since I started EMG I have made a significant breakthrough in my LENS treatments as well so this combination appears to be extremely beneficial. 

Ongoing issues with disturbed sleep prompted me to explore yet another form of biofeedback training called HeartMath that measures heart rate variability (HRV), which is an important indicator of physiological stress and emotional flexibility. The technology called emWave analyzes the beat to beat changes in the time intervals between heart beats providing visual and auditory feedback via a computer program or hand held device. It was developed by Doc Childre and the organization he founded, the Institute of HeartMath, which has conducted years of research on the dynamics of emotional physiology and heart-brain interactions. When people experience stressful emotions such as anxiety, irritation and anger, their heart rhythms become irregular and incoherent, which impacts their health and sense of well-being negatively. When people experience positve emotions such as appreciation or love their heart rhythm pattern becomes more ordered and coherent. The "Quick Coherence Technique" is a three step program that teaches the user to create positive heart rhythms and relieve stress. Step 1 focuses on the area of the heart, Step 2 focuses on the the breath using a visual breath pacer, and Step 3 focuses on visualizing a positive feeling, activity or event. Over time the user gains skills at mastering this "coherence" technique at increasingly more challenging levels which can improve health, energy, mental clarity and emotional balance and sleep. I practiced HeartMath on a daily basis for several months but was unable to achieve coherence in any consistent way by following the three step technique. After consulting with person at HeartMath I tried a breathing technique he recommended where I slowly inhale to full capacity and slowly exhale pushing my stomach as far in as possible to push out all the air. Doing this exaggerated breathing technique I am able to achieve coherence consistently even at advanced levels. There appears to be no relationship at between achieving this and my thoughts and emotions. I experienced no noticeable changes in my health or sleep after further practice for several months using the breathing technique. For more information go to: www.heartmath.com. 

To order a home EMG unit go to: www.win-health.com/neurotrac_simplex.html. For more information about LENS go to: www.ochslabs.com. Look under "Resources" and then "LENS Background and Info" for interesting articles by Len Ochs. To order The Healing Power of Neurofeedback, a book by Stephen Larsen about the development of LENS and its application to various conditions go to: www.amazon.com/Healing-Power-Neurofeedback-Revolutionary-Technique/dp/1594770840/ref=sr_1_1?ie=UTF8&s=books&qid=1274454064&sr=8-1

Dr. May Lee Esty, a neurofeedback practitioner in the Washington, DC has worked extensively with fibromaylgia patients. She uses a system called Flexyx Neurotherapy System (FNS), which is precursor to LENS developed by Len Ochs. To download an interesting article by Esty called "Post-Traumatic Fibromyaliga: A New Pardigm" go to:  www.fmpartnership.org/documents/Post-Traumatic_FM2.doc. 

 

Here's a photo of me practicing with my NeuroTrac Simplex EMG unit. I place the twin sticky pads on sore muscles and the single pad on the opposite side. Watching the digital display of muscle tone I get the tone to decrease. A relaxed resting muscle is 3.5 microvolts or less. 

Here's a photo of me using my "high tech" Radio Shack indoor/outdoor thermometer to practice Hand Warming. I tape the sensor to a finger, visualize my hands getting warmer and watch the "outdoor" reading. Raising one's temperature to 95 degrees and higher produces a relaxation response.

Here is a photo of me in a LENS neurofeedback session. The white wire is attached to a brain map site on my scalp. Feedback only lasts a couple of seconds. Several sites can be treated at each session.