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

Hormone Replacement Therapy - An effective adjunct treatment for Fibromyalgia?

Fibromyalgia Syndrome occurs most often in women who are perimenopausal or postmenopausal. This suggests that decreasing female reproductive hormone levels may be involved in the development of fibromaylgia. Hormone replacement therapy or HRT involves the supplementation of the female hormones estrogen and progesterone for the relief of menopausal symptoms including hot flashes and vaginal dryness. There are few studies on the effectiveness of HRT taken by persons with fibromyalgia however many women including myself have experienced an improvement in symptoms when taking female hormones.

Both Chronic Fatigue and Fibromyalgia Syndromes are stress response related disorders that produce abnormalities and disruptions in the endocrine system and specifically to what is referred to as the Hypothalamus-Pituitary-Adrenal (HPA) axis. This results in decreased cortisol production and adrenal exhaustion. For more on this read my post "Adrenal Exhaustion" http://fibrofriends.typepad.com/fibro_friends/2008/10/adrenal-fatigue.html . I suspect that these abnormalities also result in a deficiency of estrogen that is a major contributor to many symptoms associated with fibromyalgia. 

One reason why hormone replacement therapy may help with fibromyalgia symptoms is that magnesium utilization is increased by the presence of estrogen. Magnesium is critical for hundreds of enzymatic reactions in the human body. Adequate amounts of it are necessary for proper ATP synthesis and muscle functioning and a deficiency of magnesium can result in muscle soreness and tension, poor sleep, tension and migraine headaches, anxiety, hyperactivity, and constipation - all symptoms common to fibromyalgia syndrome. Scientific studies also support that estrogens are good for skeletal muscle function and strength and that female hormonal decrease is associated with a greater incidence of muscle injury and a delay in recovering from these injuries. 

There are a variety of female hormonal supplements and methods of applications including pill form, patch, cream and vaginal preparations. Estrogen is usually prescribed along with progesterone unless a woman no longer has a uterus because supplementing with estrogen alone can increase the risk of uterine cancer. Sources of estrogen include conjugated equine estrogens obtained from pregnant mares' urine, synthetic estradiol, or plant based estradiol obtained from soy or yams. Sources for progesterone include some type of synthetic progesterone or progestin, or micronized progestrone from plant sources. Standard HRT contains various combinations of these hormones.

Bioidentical hormone replacement therapy (BHRT) is a term referring to the use of un-patentable plant derived hormones that have the same molecular structure as the hormones in the human body. Supplements often contains the three forms of estrogen that naturally occur in the body - estriol, estrone and estradiol plus micronized or "natural" progesterone. They are typically prescribed by naturopathic and "alternative" physicians who use saliva tests to measure hormone levels and then customize formulas prepared by a compounding pharmacy for individual patients. Hormones are often prepared in transdermal creams that are applied to the skin and labia thus go directly into the bloodstream and bypassing the liver. BHRT is considered by some to be a safer alternative to standard HRT however there have been no clinical trials comparing the effectiveness or relative safety of bioidentical versus nonbioidentical compounds. 

In 2002 the use of HRT declined after a study initiated by The Women's Health Initiative was discontinued because researchers found that women taking HRT in the form of Premarin (conjugated equine strogen plus progestin) had a greater incidence of coronary heart disease, breast cancer, stroke, and pulmonary embolism along with a decreased risk of colorectol cancer and fewer fractures. The study which began in 1991 was part of a 15-year project sponsored by the National Institutes of Health on health issues for older women. Later data suggested that the risk of menopause hormones was considerably less for younger women and that certain women who used only estrogen had a reduced risk for breast cancer and heart attacks. As a result of the study long term use of HRT is no longer recommended for post menopausal women and HRT is typically only prescribed for short term relief of menopausal symptoms at low doses. 

During the ten years leading up to menopause when I had chronic fatigue I suffered from severe night sweats. Several alternative health practitioners prescribed "natural" or bioidentical progesterone for me but this only intensified my symptoms. At the onset of menopause my health deteriorated dramatically and I started having fibromyalgia like symptoms in my muscles. Working with a naturopathic physician and results from a saliva female hormone test I tried Biodentical Hormone Replacement Therapies but this failed to relieve my menopausal symptoms and increased my night sweats. I was recommended a form of HRT by my nurse practitioner called Activella, which is a combination of 1 mg. plant based estrodial and .5 mg. progestin. I tolerated this formula quite well with no adverse effects and my hot flashes and vaginal dryness went away within a week. 

When I began taking Activella my health condition was at an all time low. I was happy to not have to deal with menopausal symptoms on top of everything else and I did not notice any improvement in any other symptoms. Several years later I began to make breakthroughs in my health with therapies that I have discussed in this blog, specifically Oral Systemic Balance, Wilson's Syndrome protocol, and LENS neurofeedback. After eight years of taking Activella I thought that it might be a good idea to decrease my HRT since I was well past the menopausal period for which HRT is currently recommended. My naturopathic physician was concerned by the results of a saliva hormonal test that showed very elevated levels of estradial. At the recommendation of my nurse practitioner I started to skip taking Activella one day a week. During that time I had flares in my fibromyalgia around once a week but I did not suspect this had anything to do with skipping one day of my HRT. Then I decreased my dose in half, taking a half tablet of Activella each day. I did not experience a return of hot flashes which I interpreted as a good sign however after a week I experienced a flare in my fibromyalgia that lasted not just for a few days but continued for two weeks and was the worst setback in muscle pain and disturbed sleep with heat at night in many years. After two disabling weeks I suspected that the decrease in HRT might have something to do with my relapse. I went back on my regular dose of Activella and a week later my intense symptoms went away. 

The experience of decreasing the amount of HRT I take made me realize how important female hormones are to my health situation. As an experiment I tried increasing the Activella by one-half each day to see if this could provide any further benefits but I experienced symptoms of taking too much estrogen - sore breasts. I also experimented with taking additional progesterone both synthetic progestin which was not helpful and bioidentical progesterone which once again produced heat at night. Curious about the efficacy of various laboratory tests I did blood tests for estradiol and progesterone which were low when I was on the half dose of Activella. I also did a 24 hour urine hormone profile considered by some to be the gold standard of hormone testing which measured extremely high levels of estrogens, which is normal for persons taking oral estrogen. The laboratory also measured other forms of estrogens, which according to the laboratory physician did not indicate a potential risk for cancer. 

I have come to the conclusion for myself that taking HRT in the form of Activella is very helpful for my health. Since my "experiment" I have stayed regular with my dose and my fibromyalgia symptoms are better. Unfortunately because of the current reluctance in the medical community to prescribe HRT because of risk factors found in the Women's Health Initiative, many women with chronic fatigue and fibromyalgia may be discouraged to try a therapy that may benefit their condition. I personally think that the testing of hormones using saliva, blood or urine should not be the determining factor in deciding the correct dose of hormones, rather HRT should be adjusted to the symptoms of the patient. In regards to large studies, it is important to remember that all postmenopausal women like all people are medically not the same. Individual women will respond differently to various forms of HRT and need to find out for themselves which type is beneficial for their health. I have many friends who continue to take HRT well into their 60's and 70's and would not consider stopping because of how it contributes to their quality of life. I suspect that for many women with fibromyalgia and chronic fatigue syndrome this is also true. 

Energetic Fitness Systems

The Energetic Fitness System is a unique energy medicine technology that infuses energy into the human body via a high static electrical field.  The origins of the technology are attributed to the scientific work of Nikola Tesla in the late 1800's. Tesla, an inventor and visionary genius in the field of electricity pioneered the science that forms the basis of alternating current (AC) electric power systems, X-rays, and wireless energy transmissions. Tesla believed that it was possible to use electricity to provide energy for the human body to function optimally. He wrote the following about a particularly stressful time in his life:

"I was so blue and discouraged in those days that I do not believe I could have borne up but for the regular treatments of electricity that I applied to myself. It puts into the entire body what it needs most - Life Force."

Because of Tesla's eccentric personality and unbelievable claims about many possible scientific developments, he was regarded as a "mad scientist" and never received a patent on his energy medicine technology. Replicas of his original machine and theories about its use survived quietly over the past 100 years. Justin Brost stumbled upon a person who had a crude version of this technology, which resulted in the relief of severe neck pain he suffered from after one session. His curiosity was piqued, Brost spent the past eleven years developing a product that incorporates modern materials and components and with the help of other researchers designed a new technology that provides maximum benefits. EFS has an impressive list of scientific advisers including James Oschman, Ph.D. the famous authority on energy medicine and author of "Energy Medicine: the scientific basis", and "Energy Medicine: in therapeutics and human performance". Brost is careful to make no medical claims on the Energetic Fitness System saying only that the technology gives the body the energy to heal itself. However he has witnessed remarkable improvements in those using EFS with many health conditions including muscular skeletal injuries, idiopathic pulmonary fibrosis, spinal cord injuries, chronic fatigue and fibromyalgia as well as optimal performance for athletes.

The EFS user sits in a non-metal chair with bare feet on an energized glass plate while holding a 5-inch diameter energized glass bulb called the Plasma Containment System (PCS) 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 user feels a static vibration in the hands that gradually moves further up into the wrists and arms. The PCS creates an orange/pink glow and emits an ozone odor. The intensity of the energy can be regulated by how much contact there is in the feet on the glass plate. Over time and the user "equalizes" with the energy to a comfortable level. The energy field creates analog harmonic frequency patterns that are rapidly changing and different for each person. This is in contrast to other energy technologies where the frequencies are digital and predetermined by a computer program. The theory is that that the individual using EFS "tunes" to the energetic field and gets the frequencies he or she needs to heal and balance their body.

In May 2011 I traveled to Bellingham, Washington to meet Justin Brost and try out the Energetic Fitness System technology. Justin and his wife Shannon operate their business out a of small light industrial space where they do the final assembly of EFS units and ship them to customers. It is clear that the Brosts are passionate about this technology and dedicated to making it available to the public. At this point they have sold around 250 units mostly to individuals. Their goal however is to have EFS units in doctors' offices, sports centers, spas massage and physical therapy clinics. Since the units do not require any complicated programming and are easy to operate these "charging" sessions would be affordable to the everyday client. 

Given my highly reactive and sensitive nature I was afraid I might have a bad response to the EFS but fortunately that was not the case. Initially I had an positive emotional response to the energy that felt like a release. My first session lasted around 50 minutes. Afterwards I felt tired but relaxed and I slept well that night - a good sign for me. Encouraged by this response I commuted to Bellingham twice a week for the next month to pursue this therapy. Over that time I noticed a gradual increase in my energy, resolution of low back pain, and resolution of chronic sore feet and buttocks. I did not however experience any improvement in my muscle condition which is triggered by exercise and exertion. At the end of the month I purchased my own EFS unit to use at home. I was optimistic that by doing the EFS at home on a daily basis I might experience further improvements. I did 25 minute sessions daily for five days. This is the recommended amount that corresponds to the Chinese medical perspective that the human energy system cycles at 20-25 minute intervals. Feeling quite good I challenged my muscle condition by gardening two days in a row for an hour and a half each day. The third day my muscles were very painful and I "flared" into a fibromyalgia episode. I was hopeful that the EFS would help me recover more quickly from this flare so I increased my sessions to 50 minutes two days in a row. On the second day I had a severe agitation of my nervous system. I consulted with Justin who recommended that I take off one day and return to 25 minute daily sessions. I took off two days and then tried another session but had a bad reaction to that as well. It was obvious to me that I had overdone the therapy and I needed to take a break. After two weeks I was able to tolerate another EFS session but reacted again after four times of using the unit every other day so I decided to take a break from the therapy.

I definitely gained benefits from EFS that were cumulative and have stayed with me but EFS alone was not able to resolve my fibromyalgia muscle condition.  My personal recovery involves two important components: increasing the energy in my body and decreasing the agitation in my central nervous system that I developed over the years of living with profound physical stress and exhaustion. The EFS was helpful for increasing my energy but after a period of time it agitated my nervous system. After two long breaks from using EFS for several months I tried using the EFS again. I had adverse reactions to the technology after a couple of sessions each time. I had a friend with chronic fatigue syndrome use the unit six times and another with fibromyalgia who used it four times. Neither person observed any benefits from the therapy.

It is important to keep in mind that each person with chronic fatigue and fibromyalgia as well as all other chronic illnesses has a unique presentation of these conditions with various complications and sets of symptoms.  Although there are commonalities and overlapping issues, each person can only find through trial and error what works for them. I believe that recovery is possible but there is no "silver bullet" treatment that can cure these conditions just as there is no one cause for them. (For more on this read my post "What Causes CFS & FMS"  http://fibrofriends.typepad.com/fibro_friends/2010/08/what-causes-chronic-fatigue-and-fibromyalgia-syndromes.html). I think that the Energetic Fitness System is an important therapeutic tool that may be helpful for some individuals with CFS and FSM. Caution needs to be exercised for highly sensitive individuals like myself who can "overdose" on the treatment. To learn more about it go to:http://energeticfitness.com/

 Here I am using the EFS at home. 

   Notice the orange glow created by the PCS bulb which emits an ozone smell.  

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 .)

Chronic Fatigue & Fibromaylgia Syndromes - Strategies for Healing Strategies for Healing

 Every person with chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME) and/or fibromyalgia syndrome (FMS) has a unique presentation of these conditions with various complications and sets of symptoms. There is no one treatment that can “cure” these syndromes or that is helpful to everyone however a combined approach of therapies can lead to an improved quality of life. Listed below are strategies and therapies that have been beneficial for myself and others.

1.   Diet and Chemical Exposure 

Impaired detoxification is common to chronic fatigue and fibromyalgia sufferers. Avoidance of stimulants, depressants, pharmaceutical drugs and toxic chemicals can make a big difference in feeling better. This includes alcohol, caffeine, sugar, pain relievers and additives in processed food. Unfortunately many physicians prescribe drugs for pain, depression and sleep, which become less effective with time and in the long run make a patient worse. Some people have a particular sensitivity to fluoride, which is discussed in the post "Fluoride Poisoning" fibrofriends.typepad.com/fibro_friends/2008/07/fluoride-poison.html. The optimal diet is one that is high in protein and minimally processed: organic meats, fish, eggs and dairy products, vegetables, nuts, whole grains and fruit. It is also important to consume salt and to drink plenty of water.

2.   Breathing and Oxygen

Breathing is the underlying force of life and many people with chronic fatigue and fibromyalgia have impaired or restricted breathing contributing to poor health and pain. People with CFS/FMS are often unaware that they are surviving on less air, which does not show up in an oxygen saturation test because their bodies compensate for this with low blood pressure. This is a cause of neurally mediated hypotension, a blood pressure abnormality common in Chronic Fatigue patients. Oral Systemic Balance is a treatment developed by a TMJ dentist named Farrand Robson that employs oral appliances to help patients breathe better and restore balance to the nervous system. It resulted in significant improvement in my own health and provided the foundation for my recovery which I discuss in my post “Oral Systemic Balance” fibrofriends.typepad.com/fibro_friends/2010/02/oral-systemic-b.html .The treatment is time consuming and expensive however I believe that it addresses a key sources of stress for those suffering from Fatigue and Fibromyalgia Syndromes. For more information call TMJ Diagnostics at (800)977-1945.

Dr. Majid Ali, a leader in the field of Integrative Medicine with an impressive list of credentials believes that all the symptoms of fibromyalgia and chronic fatigue syndromes are caused by cellular oxygen deprivation and dysfunctional oxygen metabolism. His website that discusses this theory is: www.majidali.com/oygenand.htm. 

The website www.breathing.com  has information on holistic breathing development research, education and self-help programs developed by “The Optimal Breathing Coach” Mike White. I recommend ordering the Fundamentals of Breathing Development Video and Breathing Kit, which offers an effective program of breathing exercises. The site also contains information on EWOT (see below) and is a good source for purchasing oxygen generators/concentrators. (When purchasing items please mention that you were referred from this blog site). 

Improving breathing alone may not increase oxygen levels in the mitochondria, tissues and cells to healthy levels. Stress, physical trauma, aging and unresolved breathing issues gradually impair enzymatic functions and the body's ability to transfer oxygen to the cells. This can be reversed with a therapy called Exercise with Oxygen Therapy (EWOT). The therapy is relatively simple and inexpensive and can be done at home. It involves exercising for 15-30 minutes a day while breathing high flow oxygen produced by an oxygen generator. To learn more about this read my post "Exercise With Oxygen Therapy" at fibrofriends.typepad.com/fibro_friends/2010/09/exercise-with-oxygen-therapy.html.                                                                                        

3. Neurofeedback

Chronic Fatigue and Fibromyalgia Syndromes are conditions of neurological exhaustion and physical stress that result in dysregulation of the Central Nervous System. Dr. Len Ochs, a pioneer in the biofeedback field developed a unique form of EEG feedback or neurofeedback called Low Energy Neurofeedback System (LENS)  that has helped many people with CFS/FMS. 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. This results in the brain jumping out of its existing patterns and breaking up dysfunction. The therapy works best for those who have resolved underlying physical stressors that led to their condition i.e. obstructive breathing and infections. For more information read the book "The Healing Power of Neurofeedback" by Stephen Larsen and go to www.ochslabs.com/. For more information on LENS and my experience with this go to: fibrofriends.typepad.com/fibro_friends/2010/05/biofeedback-therapies-for-cfs-fms.html.

Some people who have sustained severe physical trauma and stress benefit from the addition of NeuroField,  a pulsed electromagnetic fields therapy to their LENS treatments. The therapy was developed by Dr. Nicholas Dogris and is practiced primarily by LENS providers. For more information go to: www.neurofield.org.  and read my post "Energy Medicine of the Future". http://fibrofriends.typepad.com/fibro_friends/2011/03/energy-medicine-of-the-future.html 

4. Frequency Specific Microcurrent

Frequency Specific Microcurrent is a system of treatment using microamperage current and the resonance effects of 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. There is one frequency combination that has been observed to eliminate pain in fibromyalgia associated with spine trauma. Another frequency combination eliminates pain that manifests itself as chronic Delayed Onset Muscle Soreness. For more information go to: www.frequencyspecific.com and read the post "Frequency Specific Microcurent" http://fibrofriends.typepad.com/fibro_friends/2012/01/freq.html.

5. Hormone Replacement Therapy

Hormone replacement therapy or HRT involves the supplementation of the female hormones estrogen and progesterone for the relief of menopausal symptoms. Fibromyalgia Syndrome occurs most often in women who are perimenopausal or postmenopausal which suggests that decreasing female reproductive hormone levels may be involved in the development of this condition.  HRT is helpful as an adjunct therapy for many women suffering from fibromyalgia. For more on this go to: http://fibrofriends.typepad.com/fibro_friends/2012/02/hormone-replacement-therapy-an-effective-adjunct-treatment-for-fibromyalgia-and-chronic-fatigue-synd.html 

 

6. Thyroid Function

Most chronic fatigue and fibromyalgia patients suffer from symptoms of hypothyroidism, which include low body temperature (below 98 degrees), fatigue and constipation, even though their thyroid blood tests are normal and/or they are taking thyroid replacement. Dr. Denis Wilson discovered that this condition which is called  “Wilson’s Thyroid Syndrome”, "Wilson's Low Body Temperature Syndrome" or “Wilson’s Syndrome” can be reversed by taking for a period of time the active thyroid hormone T3. Returning my body’s temperature and thyroid function to normal was one of the big breakthroughs of my healing and I think it is an issue for many CFS/FMS patients. You can read more about this at www.wilsonssyndrome.com and in my post “Thyroid Function" fibrofriends.typepad.com/fibro_friends/2009/03/thyroid-function.html.

7. Biofeedback Self-Regulation Skills

Biofeedback is the process of becoming aware of various physiological functions using instruments that provide information on these systems and through practice learning to manipulate them at will. I have found two biofeedback modalities: Surface EMG and Hand-Warming to be particularly beneficial in reducing the symptoms of an agitated sympathetic nervous system. Although I have personally not been successful in using HeartMath as a biofeedback tool it has helped many other people. All modalities use instruments that are inexpensive and can be practiced on ones own. 

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. Paying attention to this feedback one can manipulate and decrease agitated muscle contractions. The therapy is particular helpful for fibromyalgia, which often manifests itself as a condition of hypertoned muscles that over contract. By placing electrodes on the tender or trigger points one can learn to retrain the muscles to relax. Surface EMG is also helpful for tension headaches, repetitive strain injuries and general calming of the nervous system. An inexpensive home unit can be purchased from Win Health www.win-health.com/neurotrac_simplex.html.

Hand-Warming or temperature biofeedback is a self-regulation skill that employs a feedback thermometer that detects skin temperature with a sensor that is attached to a finger. Paying attention to this feedback one can manipulate circulation to the extremities of the body which is often shunted in response to stress. The skill is helpful for preventing migraine headaches, arresting night sweats and general calming of the nervous system. An inexpensive Indoor/Outdoor thermometer can be purchased at a hardware or electronics store such as Radio Shack for this purpose using First Aid tape to afix the "outdoor" temperature sensor to one's finger.

HeartMath is a company that has developed a heart rate variability (HRV) biofeedback technology called emWave which analyzes the beat to beat changes in the time intervals between heart beats, a measure of physiological stress. The program teaches the user to create positive heart rhythms that have a calming and balancing effect on the brain and entire body. Mastering this "coherence" technique through a three step process and the visual and auditory feedback from the emWave can improve health, energy, mental clarity and emotional balance and is particularly helpful for improving sleep. The emWave Coherence System is available as a computer application or a hand held device. For more information go to: www.heartmath.com. 

To read more about biofeedback treatments for CFS and my personal experience exploring them go to: fibrofriends.typepad.com/fibro_friends/2010/05/biofeedback-therapies-for-cfs-fms.html. 

8. Adrenal Exhaustion

Adrenal exhaustion is common to all CFS/FMS due to the enormous stress of living with these conditions. Mainstream endocrinologists do not diagnose or treat adrenal fatigue because there is nothing fundamentally wrong with the adrenal glands i.e. cancer or autoimmune disease. Holistic and naturopathic physicians diagnose this condition through saliva tests and treat with small amount of hydrocortisol, adrenal cortical extracts or live cell therapy for a few months to give the adrenal glands a chance to recover. Taking hydrocortisol has been helpful for those suffering from severe gastrointestinal issues as well. I have benefited from this therapy for short periods of time however my symptoms of adrenal exhaustion both experientially and as measured by cortisol levels did not completely resolved until after I did LENS neurofeedback training. By healing the adaptive patterns that my brain acquired over years of living with chronic physical stress, my body was finally able to repair itself. To read more on this go to my post "Adrenal Exhaustion" fibrofriends.typepad.com/fibro_friends/2008/10/adrenal-fatigue.html  

 9. Energetic Fitness Systems

The Energetic Fitness System is a unique energy technology 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. The system has helped many individuals with CFS and FMS. For more information go to: http://energeticfitness.com/ and read my post "Energetic Fitness System".  http://fibrofriends.typepad.com/fibro_friends/2011/07/energetic-fitness-system.html.

10. Low Dose Naltrexone (LDN)

The drug Naltrexone was originally approved in a high dose for the purpose of helping heroin or opium addicts by blocking opioid receptors. When taken at a much smaller dose it has the effect of boosting a body's immune system by causing an increase in endorphin and enkephalin production. LDN is helpful for a variety of conditions that are triggered by a deficiency of endorphins including cancer, HIV/AIDS and autoimmune diseases as well as persons with CFS and FMS. LDN is safe, inexpensive and has no reported side-effects. For more information go to: http://lowdosenaltrexone.org/ and read my post http://fibrofriends.typepad.com/fibro_friends/2011/10/low-dose-naltrexone.html

11. Earthing/Grounding 

Earthing is the practice of connecting with the energy emanating from the surface of the earth by standing or walking barefoot on the ground; or through the use of floor pads and conductive bed sheets linked by a wire to a ground rod outside or plugged into a wall outlet with a ground system. Reported benefits of Earthing on a regular basis include improved sleep, increased energy, improvement or elimination of symptoms of auto immune and inflammatory disorders, accelerated recovery from intense physical activity, normalization of the body's biological rhythms, reduction of jet lag, relief from hormonal and menstrual symptoms, and protection against environmental electromagnetic fields (EMFs). Some persons with CFS and FMS have reported dramatic improvements in their conditions especially in the area of sleep from Earthing. Others including myself appear to be hyper senstive to Earthing products which aggravate symptoms. To learn more about this read my post on Earthing at: fibrofriends.typepad.com/fibro_friends/2011/01/earthing-healing-from-the-ground-up.html . For more information and to order Earthing products go to: www.earthing.com. A source for handcrafted leather moccasins which provide non-insulating natural earthing footwear is:  http://www.wassookeagmoccasins.com

12. Electromagnetic Pollution

Many chronically ill persons including those with CFS & FSM are sensitive to environmental stresses from man-made radio frequencies (RFs) and electromagnetic fields (EMFs). They may be sick due to living in close proximity to a cellular tower; 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/  There are a number of other companies that sell products that claim to provide protection from the adverse effects of "electrosmog" including www.earthing.com (see strategy #6), http://earthcalm.com/ and http://mystressblocker.com however their effectiveness varies with with each individual and the science behind them remains controversial at this point. The MRS2000 is a pulsed electromagnetic field therapy (PEMF) device designed for personal use that simulates earth based frequencies using more sophisticated and expensive technology. A good site for information on this is: http://gaiaresonance.com. I discuss electromagnetic pollution and PEMF therapies in my post:   http://fibrofriends.typepad.com/fibro_friends/2011/03/energy-medicine-of-the-future.html  .

13. Low Intensity Laser Therapy

Low Intensity Laser Therapy also known as Cold Laser Therapy and Phototherapy is a noninvasive therapy that utilizes light emissions from a laser diode or super luminous diodes to help facilitate healing and relieve pain in injured or damaged tissues. It has proven to be effective in a variety of conditions including tendinitis, musculoskeletal injuries, wounds, rheumatoid arthritis and diabetic neuropathy.  I used a system facilitated by a chiropractor called BioFlex Professional System manufactured by Meditech International Inc. www.bioflexlaser.com which was moderately helpful for my fibromyalgia muscle pain and plantar fasciitis. To read more about laser therapy go to: fibrofriends.typepad.com/fibro_friends/2010/07/phototherapy-healing-with-light.html To learn more about my experience and research on fibromyalgia go to: fibrofriends.typepad.com/fibro_friends/2009/12/f.html. 

14. Glutathione

Glutathione is the master antioxidant found in every cell of the body. It is responsible for transporting proteins between cells, detoxifying chemicals and environmental pollutants, activating the immune system and regenerating a variety of other antioxidants. Chronic Fatigue and Fibromyalgia patients have low levels of glutathione and this causes some of the symptoms associated with the disorder including brain fog. Taking glutathione orally is ineffective because it is destroyed by stomach acid. Some physicians treat chronically ill patients with glutathione injections or include glutathione in a intravenous solution with vitamins and minerals. These therapies are expensive and their effects immediate and short term. There are supplements that can increase the production of glutathione including vitamin C, alpha lipoic acid, milk thistle and N-acetyl cysteine. Dr. Robert Keller, a doctor who treated many chronic fatigue and fibromyalgia patients developed after 10 years of research a glutathione optimizer, which is a patented formula of supplements called MAXGXL. To order his original formula go to: http://robkellermd.com/link.php?go=glutathione.html&affid=67246. A more recently developed product produced by Max International Corporation called MaxONE contains RiboCeine, a patented combination of D-Ribose and L-Cysteine developed after 25 years of research by the Japanese scientist Dr. Nagasawa. RiboCeine has also shown to be effective in raising glutathione levels. For more information go to: www.maxgxl.com.

An alternative method is using a nonotechnology homeopathic patch that stimulates acupuncture points to increase the production of glutathione. For more information go to: www.lifewave.com. 

 To learn about my experience exploring the detoxification issue go to fibrofriends.typepad.com/fibro_friends/2009/05/detoxification.html.

To download interesting articles written by Rich Van Konynenburg, Ph.D.,an independent researcher about the role of glutathione depletion in Chronic Fatigue Syndrome" go to: www.aboutmecfs.org/Trt/TrtGSHIntro.aspxaboutmecfs.org/Trt/TrtGSHIntro.aspx.

15. Protein Deficiency 

Fibromyalgia patients have chronically low levels of amino acids and are deficient in systemic protein, which provide the materials to maintain, protect and repair body functions. This is most likely due to inflammation in the gastrointestinal tract that makes it difficult to completely digest protein, carbohydrates and fats. A chiropractor named Dr. Brice Vickery has studied this area extensively and developed a patented formula of amino acids called “Platinum Plus Essential Amino Acids” that is beneficial in addressing protein deficiency and improves many of the symptoms of fibromyalgia. To learn more about this read my post “Protein Deficiency” fibrofriends.typepad.com/fibro_friends/2009/01/protein-deficiency-fibromyalgia.html.You can order the amino acids at: www.supernutrient.com.

16. Infections & Complicating Conditions 

CFS/FMS patients are prone to a variety of infections and conditions including yeast overgrowth or candida, intestinal parasites, heavy metal toxicity and mercury poisoning, viral, retroviral and mycoplasma infections, helicobacter pylori, and Lyme disease. This is due to lack of oxygen, inflammation in the gastrointestinal tract, depletion of glutathione and stress. These conditions can be treated by a good holistic physician using herbs, short term courses of antibiotics and probiotics. An interesting website that discusses research on chronic infections is www.immed.org. 

17. Atlas Profilax

Atlas Profilax is a physical therapy developed in Switzerland by Rene-Claudius Shumperli, which employs a vibrating instrument that massages the sub-occipital muscles of the neck. This results in a freeing and relocating the first cervical vertebra or atlas. The treatment is gentle, safe and usually permanent typically requiring only one session. Cost for the treatment and follow-ups is $250. Although the treatment was not helpful for me, I know of a few people who got significant improvement in fibromyalgia symptoms from it. To read about their experiences check out the post "Atlas Profilax" fibrofriends.typepad.com/fibro_friends/2008/10/atlas-profilax.html . For more information on the procedure and to find a practitioner go to: www.atlasprofilax.ch/.

18. Lymphatic Dysfunction 

The lymphatic system is a specialized component of the circulatory system which functions to remove excess fluids from body tissues, absorb fatty acids and produce immune cells. FMS patients have a sluggish or restricted flow of lymph resulting in mild edema. This is due to chronically tense or contracted muscles that block blood and lymph flow. Some people have experienced a decrease of symptoms by taking decongestants and expectorants such as guaifenesin. An alternative treatment is using an electronic vibrational massage instrument called Lymph Star Pro that facilitates lymph drainage. The device is manufactured by Arcturus Star Products www.arcturusstar.com.  Low Intensity Laser Therapy (see strategy #6) and EMG biofeedback (strategy #5) are also therapeutic for lymph function.

19. Gastrointestinal Problems

Many people with CFS/FMS suffer from gastrointestinal problems including constipation, loose stools, bloating, and flatulence. There are multiple causes of these symptoms including intestinal parasites that can be treated with appropriate antibiotics, low production of stomach acid which can improve by taking hydrochloric acid capsules after meals and low production of digestive enzymes by the pancreas which can be treated by taking digestive enzymes. An excellent laboratory used primarily by naturopathic or holistic physicians for diagnosing these disorders is Diagnos-Techs, Inc in Tukwila, WA.  Some including myself have experienced good results in resolving gastrointestional problems from taking Mila, a proprietary blend of chia seeds that is high in fiber, antioxidants and essential fatty acids. For more information read my post http://fibrofriends.typepad.com/fibro_friends/2011/11/mila-the-healthiest-raw-food-in-the-world.html and go to http://www.lifemax.net/dardenburns. 

20. Physical Therapies

I have explored a variety of physical modalities extensively in my search for better health including many kinds of acupuncture, massage, Rolfing, cranial sacral work, Tragger, chiropractic, Reiki, etc. I have found two forms of physical therapy to be particularly beneficial: Feldenkrais and Bowen Work.  Both these therapies are very gentle and noninvasive which is important for CFS/FMS patients who can overreact to more aggressive treatments. Feldenkrais addresses patterns of movement and posture that can cause pain. Its practitioners are well educated and can help individuals attain the most efficient and stress free way to move, stand and sit as well as an overall awareness of one’s body. For more information and to locate a practitioner go to: www.feldenkrais.com. Bowen Work stimulates healing through subtle moves that release tension in specific areas of the body and restore physical balance. For more information and to locate a practitioner go to: usbr@bowtech.com. Both therapies activate the sympathetic nervous system and are excellent adjuncts to healing.

Exercise is a tricky and sometimes impossible activity for persons with CFS/FMS depending on the severity of the condition. Overdoing it can result in a flare-up of symptoms and compound the exhaustive state. Mild exercise and movement such as walking, yoga and Tai Chi well within the limits of one's capacity for exertion however are beneficial.

21.  Stress Management

The challenge of living with conditions that cause ongoing fatigue, pain and insomnia is huge. Persons with CFS/FMS are under incredible stress physically and therefore have a low tolerance for additional stress in their personal lives. They need to learn to pace their activities and to make good decisions whenever possible about relationships, work and lifestyle that minimize personal stress. I have been very fortunate to have people in my life who are supportive and understanding and to not have to solely support myself financially. I have benefited from learning meditation, relaxation and biofeedback self regulation skills.  I also have built into my schedule a half hour “nap” after lunch that has been a lifesaver.

A Battle for Legitimacy - Understanding Chronic Fatigue Syndrome/Myalgic Enephalomyelitis and Yoga’s Role in its Treatment

The following paper was written by Lis Wagner as part of her teacher training program at Eight Limbs Yoga in Seattle, Washington. Lis' research included reading articles in my blog and interviewing me and other persons with CFS. 

 

Darden Burns led a healthy and active life into early adulthood. She got daily exercise and plenty of sleep, ate healthy foods, played music, had a moderate workload in school and a low-stress lifestyle, and did not suffer from depression. At age 19 her health changed overnight; the morning after having an alcoholic drink Darden woke up hung over with flu-like symptoms. Her symptoms lingered for months. Countless medical examinations and blood tests produced no answers, months turned into years, and Darden was forced to dramatically change her lifestyle to accommodate a mysterious, unnamed chronic illness. Later in life, she would come to label her illness chronic fatigue syndrome, or CFS.[1]

Unlike Darden, Quinn[2] began experiencing symptoms gradually after undergoing a hysterectomy in her mid 40s. She developed irritable bowel syndrome (IBS) and debilitating migraines. As years went by, her host of symptoms grew to include severe fatigue, heart palpitations, brain fog, vertigo, muscle ache, constant thirst, insomnia, hypersensitivity to food and drugs, and persistent nausea. Her symptoms left her increasingly unable to perform daily tasks or leave the house, let alone participate fully in her family’s lives. She visited one doctor after another, each one prescribing medications, diets, and therapies to address one aspect of her ill health rather than looking at her condition as a whole. The treatments sometimes worked for a time, but provided no complete answer. What was most baffling was the fact that Quinn appeared relatively healthy on paper; tests continually came back with “normal” blood levels and negative diagnoses for acute illnesses. Quinn was diagnosed with CFS after all other possible diagnoses were ruled out. Despite her years of physical suffering and the significant financial burden of her illness, the most painful aspect of Quinn’s experience has been the lack of understanding and support from family, friends, and medical professionals. Her condition has often been perceived as psychosomatic—a product of hypochondria, malingering or depression. Like many CFS sufferers, her illness is often considered to be “all in her head.”

CFS has only recently begun to gain credibility as a biologically-based medical condition. Research on the condition is in its infancy, and the majority the American general public has either never heard of CFS or knows it as “yuppie flu.”[3] The suffering of CFS patients is profoundly complex and misunderstood, yet it is real and can be treated. There is no known cure for CFS, and treatments for the illness are as varied as the diverse array of it sufferers. Yoga has stood out as an especially effective treatment for CFS because of its holistic approach to healing; unlike drugs, diets, physical therapy, or psychotherapy alone, yoga is a means to address physical, mental, and spiritual issues, all of which play roles in CFS.

 History of ME/CFS: a Disease in Search of a Name

The earliest record of an ME/CFS-like illness was reported in the 1860s and was deemed neurasthenia. In 1956, MD A Melvin Ramsay coined the term myalgic encephalomyelitis, or ME, in a Lancet article describing outbreaks in Europe of a disease marked by debilitating fatigue. Incidences of ME-like illnesses were not reported in the U.S. until 1984. Soon after, the National Institute of Allergy and Infections Diseases decided on the name chronic Epstein-Barr virus (CEBV). This name was only briefly used in medical journals; in 1988 the Centers for Disease Control and Prevention (CDC) published a case definition for the illness and labeled it chronic fatigue syndrome. This name has received quite a bit of resistance; according to CFS sufferer and ProHealth Inc. founder Rich Carson, the name “chronic fatigue syndrome' is universally perceived as trivializing, dismissive, and thoroughly inaccurate. [4] In contrast, myalgic encephalomyelitis, which refers to inflammation of the brain and spinal cord that often comes with the condition, prompts a more serious attitude.[5] In 2006 Carson launched the Fair Name Campaign with the goal of changing the condition’s name to further legitimize it as a serious medical condition. Though there is still no consensus on an official name for the disease, CFS and ME/CFS are currently the most commonly used titles. 

Symptoms and Diagnosis

Physicians will only diagnose ME/CFS after they have ruled out all possible acute conditions. In biomedical terms, ME/CFS is not technically a treatable illness; MDs will test for conditions such as sleep apnea, hypothyroidism, and depression before diagnosing ME/CFS. [6]   

The CDC has since revised its 1988 CFS case definition to allow for more effective research, evaluation, and classification of CFS sufferers.[7] According to the CDC, a patient diagnosed with CFS has been experiencing persistent and unexplained fatigue that is not due to ongoing exertion, is new (not lifelong), is not improved with bed rest, and significantly reduces previous levels of activity. But fatigue is not the whole picture; to be diagnosed with CFS, the patient must also be experiencing at least four other listed symptoms for at least six months. In reality, the list of symptoms that may accompany ME/CFS is long and varied, but in terms of what the Western biomedical community recognizes under CDC guidelines, the list includes impaired memory or concentration (brain fog), postexertional malaise, unrefreshing sleep, muscle pain, multijoint pain without swelling, headaches, sore throat, and tender lymph nodes.[8] A patient experiencing less than four of these symptoms is diagnosed with chronic fatigue, rather than CFS.  

 Causes

There is no single proven cause of ME/CFS. It is often initiated by a stressful event on the body, which may be a viral infection like mononucleosis, a hysterectomy causing hormone imbalance as in Quinn’s case, or something as simple as a drink of alcohol, as was the case with Darden. Such an event, in combination with preexisting physical, neurological, or genetic abnormalities, can cause ME/CFS. Darden, on her thoroughly researched blog about ME/CFS and fibromyalgia, uses Malcom Gladwell’s idea to illustrate the way a stressed body can reach “’The Tipping Point:’ the moment of critical mass, the threshold or boiling point when sudden change occurs. … The brain responds to 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.”[9]

Epstein-barr virus (EBV) or mononucleosis is the most common viral infection linked to ME/CFS because of their similar symptoms. Other viruses have shown to result in post-infective conditions that meet criteria for ME/CFS in some patients, but research has only discovered one virus that may have a specific link to ME/CFS: the human retrovirus xenotropic murine leukemia virus-related virus, or XMRV.[10]

Immune system abnormalities often contribute to ME/CFS. Again there is no constant trend: some patients appear to have an overactive immune response, while others have below average immune activity. Allergies appear to be common preexisting problems among ME/CFS patients. Autoimmune deficiencies also may play a role, yet studies are inconclusive.

Other significant pieces in the ME/CFS puzzle are nutritional deficiencies--many patients struggle with impaired absorption of nutrients and reduced ability to make efficient use of them; exposure to toxins; and electromagnetic field (EMF) pollution.

The most promising work done regarding ME/CFS points toward genetic variation in the hypothalamic-pituitary-adrenal axis; the HPA axis is a major part of the neuroendocrine system that controls reactions to stress and regulates many body processes, including digestion, the immune system, mood and emotions, sleep patterns, and energy storage and expenditure. Studies have shown that women with ME/CFS exhibit lower cortisol levels in the morning—a time of high stress on the body—than healthy women and men.[11] This abnormality signifies adrenal fatigue, which is a condition often too mild to be recognized by blood tests and thus is only recognized by alternative medicine. Overall, investigation in this vein explores the most prevalent and central cause of ME/CFS: the body’s response to stress. This fits in with Darden’s definition of ME/CFS: that it is a specific response to overwhelming stress.

Airway obstruction causing inability to breathe optimally appears to play a significant hand in exacerbating this specific response to stress. Many ME/CFS sufferers are surviving on less air than healthy people, often due to an oversized tongue and/or jaw. But this does not show up in oxygen saturation tests because their bodies compensate with low blood pressure, often causing neurally mediated hypotension, colloquially termed the fainting reflex. Neither Darden nor Quinn realized that their airways were obstructed until exploring an alternative therapy called Oral Systemic Balance (see Treatments section below).

 Treatments

There are no simple treatments or prescription drugs developed for CFS. Treatment often includes multiple therapies, both “traditional” and “alternative,” and is aimed more toward coping with symptoms rather than eliminating them. Patients must tailor and periodically revise their treatments to accommodate complicated changing symptoms.

On the more mainstream side of the spectrum, treatments include antidepressants, counseling, cognitive-behavioral therapy, exercise therapy, pain medication, and sleep management techniques. In the realm of alternative medicine, treatments range from dietary modifications; detoxification; use of supplements; and hormone replacement; to Atlas Profilax, a physical procedure that adjusts the C1 vertebra; grounding, which reconnects the body with the earth’s energy flow of electrons; and Low Energy Neurofeedback System (LENS) for resetting brain wave patterns, to name a few.[12]

Oral Systemic Balance (OSB) is one alternative therapy that stands out from the rest due to its high rate of effectiveness. Developed by TMJ dentist Ferrand Robson, the treatment employs individualized oral appliances to open the airway and thereby improve breathing and restore balance to the nervous system. Thus, OSB is especially relevant in light of yoga’s role in treating ME/CFS; like pranayama, OSB works to achieve optimum oxygen intake by physically adjusting the body to respire in the most efficient and least taxing way possible.

Yoga as Treatment for ME/CFS

When Darden fell ill with ME/CFS she had to completely change her lifestyle. Though she had to give up many activities that she loved, she practiced yoga for 25 years until her health further declined and she was diagnosed with fibromyalgia—ME/CFS’s sister disease characterized by muscle tightening and pain--in her late 40s. Darden believes that her yoga practice played a pivotal role in keeping her symptoms at bay and staving off her decline into fibromyalgia as long as possible. Results of an Iowa College of Medicine study lend credence to Darden’s experience. The two-year study showed that ME/CFS patients who included yoga in their treatment felt better on a regular basis than those who used other treatment methods without yoga.[13]

An appropriate yoga practice for a person with ME/CFS is one that is carefully tailored to his or her specific symptoms, abilities, and limitations. If the patient is healthy and mobile enough to practice asana, it should be gentle and restorative. Yin, Kripalu, and Anasura styles are appropriate, rather than more vigorous or didactic styles like Ashtanga and Iyengar. Use of a chair, wall, and props is strongly recommended.

Pranayama can be incredibly powerful in regulating the nervous system and one’s response to stress. ME/CFS patients should begin a pranayama practice with simple one-to-one rounds of diaphragmatic breath. Once that is comfortably mastered, he/she can move to energizing techniques employing longer inhales and ujjayi breath in the morning, and calming breath with longer exhales before bedtime. Practicing at appropriate times of day is especially important for ME/CFS patients so that they can strive to maintain healthy circadian rhythms and sleep patterns. Meditation can be immensely effective for bringing much-needed relaxation, slowing heart rate, reducing anxiety and depression, and improving concentration.

Because ME/CFS is a complex, incurable illness that instills doubt, uncertainty, and guilt, its victims often develop fear of and detachment from their physical bodies. Bainbridge Island-based physical therapist and yoga teacher Suzanne Brassel emphasizes how yoga empowers people with ME/CFS to be present and mindful in their bodies. She encourages them to acknowledge their pain, rather than ignoring it or pretending it’s not there. Drawing from a background in Kripalu and Anasura yoga, Suzanne employs a forgiving, supportive, and individualized style of yoga for her ME/CFS patients. She endorses using pranayama for anyone practicing yoga, not just advanced students, and she breaks down asanas into small movements to bolster body awareness and mindfulness in her ME/CFS patients. Like Darden, Suzanne has great faith in yoga as a multidimensional treatment for ME/CFS that is unparalleled in its effectiveness.

 Conclusion

The most fundamental step in increasing legitimacy for this misunderstood illness is awareness. We practice yoga so that we can understand our bodies and souls and thus live more mindfully in the world. In the same spirit, we should inspire those around us to regard ME/CFS--or any misunderstood illness for that matter--with an open and curious mind, rather than dismissing it as malingering or a yuppie disease.

Works Cited

Burns, Darden. Chronic Fatigue & Fibromaylgia Syndromes - Strategies for Healing. Fibro Friends weblog. 26 June 2010. http://fibrofriends.typepad.com/fibro_friends/chronic-fatigue-syndrome/

Burns, Darden. What Causes Chronic Fatigue and Fibromyalgia Syndromes? Fibro Friends weblog. 9 Aug. 2010. http://fibrofriends.typepad.com/fibro_friends/chronic-fatigue-syndrome/

Carson, Rich. Founder’s Corner: Fair Name Campaign Update - Exciting New Direction. ProHealth.com. 19 May 2008. http://www.prohealth.com/library/showarticle.cfm?libid=13675;

CFS Case Definition; Diagnosis. CDC.gov. http://www.cdc.gov/cfs/general/case_definition/index.html; http://www.cdc.gov/cfs/general/diagnosis/index.html 

Causes, Chronic Fatigue Syndrome. University of Maryland Medical Center.13 Jan. 2009. http://www.umm.edu/patiented/articles/what_causes_chronic_fatigue_syndrome_000007_3.htm

Grady, Denise. Virus Is Found in Many With Chronic Fatigue Syndrome. New York Times. 8 Oct. 2009. http://www.nytimes.com/2009/10/09/health/research/09virus.html

Kelly, Alice Lesch. Rest for the Weary. Yoga Journal. http://www.yogajournal.com/health/124

Nauert, Rick PhD. Stress Triggers Chronic Fatigue Syndrome. PsychCentral.com 18 Jan. 2008. http://psychcentral.com/news/2008/01/18/stress-triggers-chronic-fatigue-syndrome/1804.html

Richards, Karen Lee. A Disease in Search of a Name: The History of CFS and the Efforts to Change Its Name. http://www.healthcentral.com/chronic-pain/chronic-fatigue-151675-5.html

 

---

[1] Information taken from an interview with Burns on 10 Dec. 2010.

[2] Name changed for patient confidentiality.

[3] In November of 1990, Newsweek published a cover story on CFS, deeming it “yuppie flu” based on evidence that the condition largely affects upper middle class women. Richards, Karen Lee. A Disease in Search of a Name: The History of CFS and the Efforts to Change Its Name. HealthCentral.com.

[4] Carson, Rich. Founder’s Corner: Fair Name Campaign Update - Exciting New Direction. ProHealth.com. 19 May 2008.

[5] A 1999 Depaul University study showed that medical trainees were more likely to regard a patient’s illness as psychologically-driven when labeled as CFS versus ME. Richards, Karen Lee. A Disease in Search of A Name.

[6] Information gathered from a phone interview with Patrick N. Wagner, MD on 25 Dec. 2010.

[7] Though there has been considerable controversy and disagreement over the CDC’s work surrounding ME/CFS, I will use its guidelines in the interest of authority and simplicity. The CDC’s current guidelines demand patients be subgrouped based on the length and type of fatigue/symptom onset. CFS Case Definition; CFS. CDC.gov.

[8] Diagnosis; CFS. CDC.gov.

[9] Burns, Darden. What Causes Chronic Fatigue and Fibromyalgia Syndromes? Fibro Friends weblog. 9 Aug. 2010.

[10] Grady, Denise. Virus Is Found in Many With Chronic Fatigue Syndrome. New York Times. 8 Oct. 2009; Causes, Chronic Fatigue Syndrome. University of Maryland Medical Center. 13 Jan. 2009.

[11] Nauert, Rick PhD. Stress Triggers Chronic Fatigue Syndrome. PsychCentral.com 18 Jan. 2008.

[12] Burns, Darden. Chronic Fatigue & Fibromaylgia Syndromes - Strategies for Healing. Fibro Friends weblog. 26 June 2010.

[13] Kelly, Alice Lesch. Rest for the Weary. Yoga Journal. 

 

HOPE

I occasionally receive negative comments on my blog from persons with CFS and FMS. This happens most often when I attempt to connect with others in on line support groups. I understand that this is part of presenting material on the Internet but nevertheless it is disturbing. The fact is there are many people with CFS and FMS that are resistant to hearing about avenues of healing that they are not familiar with and suspicious about stories of recovery. Some cannot understand the complexities of the topics I write about and want a simple explanation for their condition. Some have even questioned my motives for writing about the treatments that have helped me and the validity of my experience. This is sad indeed yet I try to not take it personally. I know that these responses stem from fear and suffering that is part of the CFS and FMS experience.

Persons with Chronic Fatigue and Fibromyalgia are victims of a medical system that does not understand and does not know how to treat their disorders. Most have spent an inordinate amount of time and money seeking medical help with no positive outcomes. They have been beat up by doctors who invalidated their symptoms, dismissing them as psychosomatic, and they've been strung along by others who bombarded them with drugs or claimed they could help but didn't. They've tried so many things that did not work that they have given up hope of ever living some kind of normal life.  

The most difficult thing about my personal health search was dealing with the disappointment of failed treatments. For the 5 or 6 therapies that made a significant contribution towards my recovery there were 50 or 60 that didn't help at all. To get an idea of just a few of the therapies that I tried unsuccessfully read my post "What Didn't Work" fibrofriends.typepad.com/fibro_friends/2009/07/what-didnt-work.html. Every time I started a new treatment or therapy I was hopeful that it would help. When I got to the point where I knew this was not the case I was devastated but I did not give up trying. In retrospect I realize that I learned something from each of these experiences which ultimately helped me solve the puzzle of my health condition. 

One of the most pivotal experiences of my health search was spending three months at the Fibromyalgia Relief Center in South Lake Tahoe, California in 2007. This was the first time I had the opportunity to talk with others who had similar health problems. This group of people was so determined to get better that they were willing to travel long distances, to be away from their homes and families for weeks at a time and to invest a considerable amount of money. I was impressed by their optimism, their faith and their courage. In almost every case I heard the same story. They wanted to get well to give back to others and to fully participate in the lives of their children and grandchildren. Although many of us experienced improvements from the treatments at Tahoe, for the majority the relief was short term. Over the months after my stay I heard from one person after another whose health relapsed. Some were so devastated by this and set back by the financial losses that they gave up trying additional therapies. Meanwhile I had made the first significant breakthrough in my recovery with Oral Systemic Balance. My motivation to start my blog was twofold: First to expose the truth about the "Whitcomb method" through first hand reports from patients who were at Tahoe, and second to share information about therapies that were beneficial for myself and others. 

The suffering for persons with chronic fatigue and fibromyalgia syndromes is off the charts and presents a spiritual challenge. How can one feel at peace when one is thoroughly exhausted, cannot sleep and is in chronic pain? How can one feel safe in a body that is dysfunctional at every level? How can one endure this state day in and day out, year in and year out with no relief in sight? How does one maintain the will to live in these circumstances? The answer is simple: by faith, hope and love. This may be easy to say but try living it. My illness required every scrap of courage, patience and intelligence I could muster and a lot of support from family and friends. There were long periods where I wondered if I could make it through the next hour, let alone the next day. It was at these times that I reached out for emotional support often spending an hour every day on the phone with my best friend who sent me a charm with "H O P E" inscribed on it, which I put on my key chain. Her support and that of so many others was unflinching. Their message was clear: "Don't give up!". 

Some say that it is a miracle that my health has improved so much. I say the miracle is that my spirit endured through years and years of unbelievable physical hardship. I got better because of my perseverance, my financial capacity to explore every lead, and ultimately because of revolutionary medical treatments that reversed my condition. We are living in an exciting time where breakthroughs are being made in the treatment of chronic health conditions. It may be years before the mainstream or "alternative" medical communities embrace these but people suffering today don't have time to wait. As I approach the finish line of my recovery I am not giving up on others out there. I want to shout from the top of the mountains: "Don't give up! You can get better! There is hope!"

 

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 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, magnetic or electron deficiency, lymphatic dysfunctions, protein defiency, 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 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 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 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 evening out my energy and emotional responses. Then I discovered a combination of EMG biofeedback training and Low Intensity Laser Therapy that helped 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.) And I started 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.

Treating CFS & FMS with Naturopathic Medicine

People suffering from chronic fatigue and fibromyalgia syndromes discover the limitations of mainstream medicine in diagnosing and treating their conditions and often turn to alternative or naturopathic medicine for help. In general holistic medical physicians and naturopathic physicians are much better educated about CFS and FMS than mainstream physicians and they treat these conditions seriously rather than dismissing them as psychosomatic. They are generally good listeners and more empathetic than their counterparts. 

I remember the first time I saw a naturopathic physician. I had been sick with chronic fatigue for fifteen years but had not talked to a physician about my condition in ten years. It was my first experience talking to a doctor about my health and not feeling judged or invalidated. This was in 1986 and my naturopath diagnosed me with Chronic Epstien Barr Virus - one of the early names for CFS. Up until that point I did not know of the existence of others who suffered from my particular condition and this knowledge in itself coupled by the caring nature of my naturopath was a positive development. But the naturopathic treatments prescribed to me which included immune enhancing herbs such as echinacea and nutritional support in the form of vitamin and mineral supplements made absolutely no impact on my health.

Since that time I have spent most of my health search in the alternative medical camp, trying one treatment after another many of which I have summarized in my post "What Didn't Work" fibrofriends.typepad.com/fibro_friends/2009/07/what-didnt-work.html. If nothing else pursuing these therapies gave me hope. Not trying something was for me equivalent to giving up. Every so often I checked in with the mainstream medical folks to see if they had anything to offer but they remained clueless as ever. The naturopathic folks and the mavericks on the the edge of medicine had the most chance of helping because they paid attention to the clues. I live in the Seattle area which is a hot spot for natural medicine and consulted some of the most well known practitioners in the field including Jonathan Wright MD, Dietrich Klinghardt MD, Ralph Golan MD, many graduates of Bastyr University and practitioners of Chinese medicine and acupuncture. In the end the things that made an impact on my health were not those prescribed by these practitioners but things I discovered on my own. 

Naturopathic medicine in general treats the symptoms and secondary causes of CFS and FMS with natural remedies like nutritional supplements and herbs as opposed to pharmaceutical drugs. In the absence of understanding the systemic or primary causes of these conditions this may be the best approach and can result in an improved quality of life for patients or may be all that is required for a full recovery. Since CFS and FMS present multiple symptoms and dysfunctions, alternative practitioners focus on one or two areas which they have experience treating or they believe to be a main culprit of the disorder. Examples of these are adrenal fatigue, candida overgrowth, heavy metal toxicity, intestinal parasites, food allergies, nutritional deficiencies etc. I was treated for all these conditions and spent thousands of dollars in the process with very little improvement in my health to show for it. However my understanding of my condition increased with each of these "adventures" and in the long run helped me sleuth my way to the treatments that provided real recovery.

A good summary of alternative therapies for CFS is summarized by Rich van Konynenburg at http://www.cfs-healing.info/treatment-protocols.htm.  Among the prominent doctors who developed these protocol are Dr. Majid Ali, Dr. Sarah Myhill and Dr. Joseph Teitelbaum, MD, author of the book "From Fatigued to Fantastic" and medical director of the Fibromyaliga and Fatigue Centers (www.fibroandfatigue.com). Dr. Teitelbaum's approach and that of the Fibro and Fatigue Centers is basically a combined one that addresses the individual symptoms or dysfunctions of the disorder with various therapies that originated in holistic or naturopathic medicine. He calls his approach the SHINE protocol, SHINE being the acronym for Sleep, Hormonal Dysfunction, Immune Dysfunction and Infections, Nutritional Deficiencies and Exercise. I think that Dr. Teitelbaum is a true champion for the cause of CFS and FMS and is passionate about helping those with the condition. I am sure that this approach has been helpful for many patients however in my experience and in that of many others I know, this protocol was not adequate in facilitating significant improvement in our conditions. 

Dr. Teitelbaum and other researchers think that restoring disordered sleep (the "S" in SHINE) is paramount in the treatment of CFS and FMS. They prescribe sleep aids starting with natural remedies (sedative herbs, melatonin, 5-HTP) and if these do not work prescribe pharmaceuticals (Ambien, Neurontin, Klonopin, Trazodone). Here's the problem. Many people with CFS and FMS do not get results with natural sleep remedies and build a tolerance to or cannot tolerate the side effects of pharmaceutical sleep aids. In addition many people experience a rebound in insomnia when they go off sleep aids. To learn about my personal journey down this slippery slope read my post "Waiting For Sleep" fibrofriends.typepad.com/fibro_friends/2009/10/waitin.html.

Recently I discovered a treatment for insomnia using nanotechnology homeopathic patches placed on acupressure points at night that stimulate the production of melatonin and serotonin. The patches are non-transdermal, are non-addictive and have no side effects even for highly sensitive individuals. Some individuals with CFS and FMS have reported good results although they were not helpful for me. They are produced by a company called Lifewave www.lifewave.com.

Naturopathic and holistic physicians are aware of the hormonal dysfunctions in CFS and FMS resulting from the enormous stress these conditions place on the endocrine system and what is referred to as the hypothalamus-adrenal-pituitary axis. I was diagnosed with adrenal exhaustion and low cortisol levels in 1991 by Dr. Jonathan Wright and started taking hydrocortisol and DHEA at that time. Basically I felt a little better on these hormones but eventually they became less effective. I was subsequently diagnosed with adrenal fatigue by nearly every alternative health practitioner I saw after that and tried numerous other protocols including herbs and acupuncture with limited success. I think CFS and FMS patients can get some relief from taking hydrocortisol for short periods of time (6 months) and I have definitely benefited from this (To learn about my experience read my post "Adrenal Exhaustion" fibrofriends.typepad.com/fibro_friends/2008/10/adrenal-fatigue.html) however in treating adrenal exhaustion, one is only treating a symptom. The question remains what is causing the fatigue?

I experienced a more dramatic improvement in my fatigue by addressing thyroid function with the Wilson's Syndrome protocol. This came after an exhaustive three year search into thyroid issues which you can read about in my post "Thyroid Function" fibrofriends.typepad.com/fibro_friends/2009/03/thyroid-function.html. Dr. Denis Wilson developed a breakthrough treatment for reversing the effects of a condition which was first named "Wilson's Thyroid Syndrome" and is now called "Wilson's Low Body Temperature Syndrome". Wilson observed that after periods of stress and trauma many individuals developed symptoms of hypothyroidism - fatigue, low body temperature (below 98 degrees) and constipation even though their thyroid blood tests were within the normal ranges. The symptoms of this syndrome do not improve or get worse from taking T4, the storage form of thyroid replacement, however they improve by taking T3, the active form of thyroid replacement. Wilson developed a protocol of taking T3 compounded by a pharmacy with a slow release agent in increasingly larger doses until one's body temperature rises above 98 degrees and then slowly cycling off the hormone until the body is able to maintain a normal temperature. In this way a slow metabolism that results from a stress mechanism designed by the body to conserve energy is permanently reversed. I think that many people with CFS and FMS have Wilson's Low Body Temperature Syndrome and can benefit from this therapy. Fortunately many naturopathic physicians and holistic medical doctors are trained in this protocol however others including doctors at the Fibro and Fatigue Centers continue to treat their patients condition with a combination of T4 and T3 or Amour. To learn more about Wilson's Syndrome and to find a physician trained to treat this disorder go to: www.wilsonssyndrome.com.

 

In addition to adrenal and thyroid hormones naturopathic medicine also treats deficiencies in the sex hormones - estrogens, progesterone and testosterone as well as human growth hormone which is often low in CFS and FMS patients. In general these hormones decrease with age and in the case of those with CFS and FMS this loss may be accelerated due to physiological stress of the conditions. Naturopathic physicians often rely on saliva testing to assess hormone levels and obtain hormones from compounding pharmacies.

Immune Dysfunction and Infections are another area of focus in the SHINE protocol and the naturopathic treatment of CFS and FMS. Patients with CFS and FMS are prone to opportunistic infections such as intestinal parasites, candida overgrowth, chronic Lyme disease, mycoplasm, viral and retroviral infections. In general these infections are symptomatic of a person whose immune system is compromised. People with AIDS and autism for example also are susceptible to these infections. Treatment can be an important part of the recovery for many individuals and naturopathic and holistic physicians are well equipped to do this. But for some patients like myself continually chasing after infections did not provide significant improvements. As important to treating opportunistic infections is figuring out how to improve the strength of a person's immune system. Before I did Oral Systemic Balance I was prone to having intestinal parasites. My naturopath would treat one parasite successfully only to find I acquired another parasite the next time I did a stool analysis. Since I improved my breathing with Oral Systemic Balance I have not had any parasites. This I think is a result of getting a more adequate supply of oxygen and thus addressing the underlying source of stress that was compromising my immune system.

Ah Nutrition! One of the mainstays of naturopathic medicine is treating health conditions and nutritional deficiencies with nutritional supplements. Since CFS and FMS affect so many functions of health there are many symptoms one could try treating with nutritional supplements. ProHealth (www.prohealth.com) is a company that sells nutritional supplements for people with CFS and FMS. The company donates a portion of its sales to organizations focused on finding effective treatments and its website contains a lot of valuable information. Their catalog of supplements is huge and demonstrates just how vast the inventory is of things that might be beneficial. Taking nutritional supplements may initially produce some positive results and can serve to "jump start" the system but the effects are often not lasting. Here's why I think this may occur. In CFS and FMS the brain down regulates bodily functions to conserve energy in response to overwhelming physical stress and trauma for which it can no longer accommodate. (For more on this read my post "What Causes CFS & FMS" fibrofriends.typepad.com/fibro_friends/2010/06/what-causes-chronic-fatigue-and-fibromyalgia-syndromes.html). One may feel better initially from taking supplements that address some of the resulting deficiencies but then the body compensates for the supplements returning the levels to what they were previously because it is still functioning at a low level and needs to conserve energy.

Some alternative health practitioners including naturopathic and holistic physicians as well as chiropractors employ muscle testing or kinesiology to evaluate which supplements are beneficial for a patient. Originally developed in 1964 by a chiropractor named George Goodheart and called Applied Kinesiology, there are now many variations of this method of testing. Basically the practitioner accesses the patient's response to a nutrient  with a manual muscle test. Muscles become stronger in the presence of a beneficial nutritional supplement or combination of supplements, stay the same with supplements that are safe but provide no significant benefit and become weak in the presence of supplements that are harmful. I think that there is some validity to this method of evaluation but that the results can be skewed by the influence of the practitioner and other factors. I have personally never encountered a kind of muscle testing that was able to predict whether I would have a hyper-reaction to a supplement or not. The best policy is to add one new supplement at a time and assess if there is any change or improvement in one's health.

I personally have spent a small fortune on supplements of all kinds including vitamins, minerals, herbs, amino acids, etc. to virtually no avail and ditto to that for many others I know with CFS and FMS. Every few years there is some new natural substance on the market that promises to be the key to health and those of us with chronic health problems are especially susceptible to trying them. From blue green algae, to mangosteen, Siberian gingseng, mushrooms, beta carotene, colloidal silver, Sam-e, CoQ10, vitamin D, antioxidants, liquid minerals, ... the lists goes on and on. I have tried all these things as well as numerous combinations of supplements prescribed by health professionals with absolutely no benefits. A couple of exceptions are MAX GXL and Super Nutrient Amino Acids, two patented formulas of nutritional supplements which were beneficial for me short term and I discuss in other posts.  I remain open minded about the benefits of nutritional medicine but at present I am not taking any supplements. I have come to the conclusion that the best way for me to get my nutrition is through whole foods. I maintain a diet which I arrived at over the years as being the most beneficial for me. It consists primarily of whole grains, green vegetables and organic meat, fish and dairy products. I strictly avoid all forms of sugar, alcohol, caffeine and processed foods.  

The last area in the SHINE protocol is "E" for exercise. For those that are able exercise is a valuable adjunct to healing and coping with a compromised health condition. I was fortunate to be able to tolerate mild exercise for the first 28 years of my health condition when I suffered from chronic fatigue. I did a lot of walking, swimming and I had a serious yoga practice. I feel that these activities really saved my life in many ways and kept me in the best possible shape despite the challenges I lived with and the fact that my condition was generally getting worse. Then in 2001 I crossed some kind of threshold and developed fibromyalgia. I was devastated because once this happened physical exertion worsened my condition, my insomnia and my pain. I had to give up the very things that had sustained me through my illness - exercise and playing music. It was a devastating blow. Some health professionals including Teitelbaum state that fibromyalgia is the same condition as chronic fatigue syndrome except it is accompanied with widespread muscle aches and pain. This in not entirely accurate because many people with chronic fatigue syndrome have aching muscles but do not have the muscle dysfunction typical of fibromyalgia. In fibromyalgia the muscles are chronically agitated and over contract when used resulting in pain and adhesion in the muscle tissue. When a person with fibromyalgia forces their muscle to work they develop sore points or trigger points. To learn more about this read my post "Fibromyalgia Muscle Dysfunction" fibrofriends.typepad.com/fibro_friends/2009/12/f.html. So despite advice by many health professionals to the contrary, exercise in general agitates the sympathetic nervous system in people with fibromyalgia and is not a good modality for healing. 

A final area in the treatment of CFS and FMS by many naturopathic health professionals, although not specifically covered in the SHINE protocol, is Detoxification. There is compelling research that shows that persons with CFS and FMS have impaired detoxification which is referred to by some as a "Methylation Cycle Block". I personally spent years pursuing various detoxification protocols with very modest improvements. After undergoing an extensive heavy metals detoxification program consulting with some of the most reputable doctors in the field my levels of mercury remained extremely high as measured by a hair analysis test three years later. Obviously the protocols did not work. To learn about my exhaustive search in this area read my post "Detoxification" fibrofriends.typepad.com/fibro_friends/2009/05/detoxification.html. I think that the detoxification problem in persons with chronic fatigue and fibromyalgia syndromes is the result of a lack of oxygen due to impaired breathing and dysfunctions of the Central Nervous System or the brain in response to overwhelming physical stress, and that no amount of nutritionally based detoxification programs can reverse this problem.  My personal recovery from chronic fatigue resulted from improving my breathing with Oral Systemic Balance and addressing the post traumatic brain injury  with LENS neurofeedback. At present these modalities are not yet fully understood or prescribed by naturopathic and holistic physicians. 

I am sure that there are many individuals with CFS and FMS whose conditions respond well to naturopathic medicine. Every person is unique and it is only through trial and error that one can discover what is helpful. For myself healing required me to dig deeper and find more effective, cutting edge modalities. I know that these therapies will be embraced first by the alternative medical community because its practitioners are open-minded and eventually by the mainstream medical community as well. I keep in touch with a number of my naturopathic and holistic doctors who have followed my case over the years. I continue to seek their advice and to keep them abreast of my situation. I appreciate their support and feel that they are true allies in my quest for better health. 

Here is a small sample of nutritional supplements that I tried. None produced significant improvements in the long term. 

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.  

Chronic Lyme Disease - An Overlapping Condition

I recently viewed "Under Our Skin" the award winning documentary film about Lyme disease by Andy Abrahams Wilson. The film exposes part of the hidden and controversial epidemic of Lyme disease and shows how our medical establishment is failing to address this serious condition. It interviews doctors devoted to research and treatment of the disease some who have been prosecuted or lost their medical licenses for prescribing long-term intravenous antibiotic therapy. It profiles seven severely ill patients struggling to find effective treatment. The testimonial section of the film where a succession of sufferers read off lists of misdiagnosis and occasions where they were told their symptoms were psychosomatic was particularly gripping. The film is beautifully executed with backdrops of lush, wooded landscapes in the Northeastern United States, an area infested with deer ticks that most commonly transmit the bacterium that causes Lyme disease. Wilson wanted to show the beauty of the natural world and the human spirit next to the horror of the illness and in this I think he succeeds quite well. He also succeeds in showing how our for-profit medical insurance system fails persons suffering from complex poorly understood health conditions like Lyme disease. 

"Under Our Skin" however does not address some key issues in the Lyme disease controversy. One would think after viewing it that repeated rounds of antibiotics are the only effective means of treating Lyme disease. This in fact is not true. Alternative medical routes as practiced by Dr. Dietrich Klinghardt, an expert in the field, one of whose patients was profiled in the film, effectively treat Lyme disease without the use of antibiotics. I have a personal experience with this as I was diagnosed with Lyme disease in 2003 and was a patient at Dr. Klinghardt's clinic for three years when I was successfully treated for Lyme disease through a combination of alternative therapies that included intravenous therapy containing B & C vitamins, magnesium and glutathione (Meyers’s cocktail); heavy metal detox with the drug DMPS and alpha lipoic acid; antimicrobial herbs; infared saunas; lymph massages; and jaw cavitation surgery. I felt better after the treatments however the underlying source of stress on my system remained. In other words for me Lyme disease was a complication of my health condition not the root cause. I suspect that this may be true for others as well. 

According to Dr. Klinghardt the spirochete (spiral shaped) bacteria Borrelia burgdoferi along with a variety of other species or co-infections are not only transmitted by ticks but also mosquitoes, fleas and gnats; and human beings can pass it to each other through an exchange of bodily fluids including sexual intercourse and nursing. These super bugs are virtually everywhere in our environment and if one looks hard enough one can find them in the entire population. This is one reason that diagnosis of the disease with laboratory tests is so difficult. The question is not who has the bugs but who cannot deal with the bugs. Lyme disease is an opportunistic infection that occurs in persons whose detoxification and immune systems are impaired and leads to a chronic neurological condition very similar to Chronic Fatigue and Fibromyalgia Syndromes. In many books and websites the three conditions are combined. This is no coincidence because the damaging neurological consequences of this disease and these syndromes are similar and the underlying cause of all these disorders may be the same. Klinghardt thinks the cause is poor detox genes but for myself it turned out to be an impaired ability to breathe: an air passage obstructed by my tongue that had my system compensating on less oxygen. Once that was treated with Oral Systemic Balance the systemic stress lifted and my propensity for developing opportunistic infections like Lyme, intestinal parasites,  and candida went away. 

The road to recovery from chronic Lyme disease is a difficult one with many patients failing to get better after long term antibiotics and alternative treatments. I suspect that as we fully understand chronic Lyme disease and its commonality with CFS and FMS we will find similar treatments that successfully address them. 

XMRV Retrovirus Linked to Chronic Fatigue Syndrome

A new study published in October in the journal Science links a virus found in prostate tumors called xenotropic murine leukemia virus-related virus or XMRV to Chronic Fatigue Syndrome. Since its publication there have been three separate articles about it in the New York Times. The study was led by Dr. Judy Mikovits the retrovirus expert at the Whittemore Peterson Institute, a private research foundation founded by Harvey and Annette Whittemore, the parents of a woman who suffers from Chronic Fatigue Syndrome. Dr. Mikovits collaborated with scientists at the National Cancer Institute and the Cleveland Clinic. They found that 67% of the Chronic Fatigue Syndrome patients were infected with XMRV compared to only 3.7% of healthy control subjects. Retroviruses, which include HIV and forms of leukemia affect the immune system and can cause a variety of illnesses including cancer. XMRV was first identified in prostate cancer three years ago and has been detected in about one-quarter of biopsies from men with the disease. 

The new information is making many patients feel hopeful that it will lead to effective treatments but the study is not conclusive. Just detecting XMRV in patients with Chronic Fatigue Syndrome does not prove that it causes the disease. There may be other underlying problems that make chronic fatigue patients susceptible to the infection. It would interesting to test other patients with illnesses that compromise the immune system like AIDS patients and see if they also have XMRV. Persons with Chronic Fatigue Syndrome are susceptible to a variety of infections and conditions including Lyme disease, intestinal parasites, mercury toxicity, candida and Epstien Barr virus, which was originally thought to be the cause. These kinds of infections and conditions can be found in low levels in healthy individuals but cause more damage in those whose immune systems are compromised and are not able to keep their numbers in check.

The ultimate significance of this discovery will be if patients get better when the virus is treated. It is my personal opinion that XMRV is not the cause of Chronic Fatigue Syndrome rather a complication. For information on how to order a test kit for detecting XMRV go to www.vipdx.com. This website for Viral Immune Pathology also has excellent information on Chronic Fatigue and Fibromyalgia.

 

A recent study that attempted to replicate the Whittemore Peterson study in England was conducted by the Imperial College London. It found no evidence of the XMRV infection in the blood samples of 186 patients. They concluded "Although we found no evidence that XMRV is associated with CFS in the UK, this may be a result of population differences between North America and Europe regarding the general prevalence of XMRV infection, and might also explain the fact that two US groups found XMRV in prostate cancer tissue, while two European studies did not". An interesting paper that concurs with my opinion about the significance of XMRV and CFS was written by Ashok Gupta. www.guptaprogramme.com/xmrv.asp

P.S. A subsequent study in 2010 in Germany failed to detect XMRV in patients with CFS. 

Detoxification

My health problems began in the fall of 1973 after an evening when I drank a “rum and Coke” at a college dorm party. The next day I felt hung over with fatigue and a fuzzy headache, which basically never went away. At first I thought it was the flu but after several weeks it became apparent that something else was amiss. To my dismay the medical doctors I consulted at that time could not find a cause for my symptoms and attributed them to “stress”.  And so I was from the outset on my own trying to understand and manage my condition. I became aware of an impaired ability to tolerate drugs and eliminating them from my intake made a significant difference in reducing my headaches and ensuring that I slept well.  This meant avoiding caffeine, alcohol, sugar and most over the counter medications including aspirin, Tylenol, antihistamines, etc. Over the years the list of things I needed to avoid grew to include anything sweet including fruit and various additives in foods.

By the mid-80’s I was suffering from severe night sweats and insomnia, which I could no longer control with my diet. I went to see Dr. Johannes Lui, a well-known practitioner of Chinese medicine in the Seattle area.  Dr. Lui did acupuncture points in the ear and gave me some herbs to make a tea. His treatments provided some relief at first but subsequently became less effective. Dr. Lui said that I had chronic liver problems – a form of hepatitis. Around the same time I saw a shiatsu therapist with a background in oriental medicine. The therapist said I had a “restricted” liver, which could explain my sensitivity to alcohol and sugar. He recommended I go on a fast for 5 days drinking water that had small amounts of maple syrup, lemon and cayenne pepper in it. After 2 days I became so ill and weak on the fast that I discontinued it. I researched liver disease at a medical library and consulted a gastroenterologist who found nothing irregular in my blood work. 

In 1993 I saw a holistic medical doctor who ran a test, which measured liver impairment and detoxification capacity through caffeine clearance and benzoate challenge tests.  This test showed significant liver dysfunction with highly irregular values in both the oxidation and conjugation phases. He prescribed nutritional supplements, which included milk thistle or silymarin, selenium, dandelion root, NAC, vitamin C and other antioxidants. This protocol failed to produce any improvements. During this time I suffered from frequent flus, never going more than 6 weeks before coming down with another virus. I did various protocols for improving the immune system, which included taking lots of vitamin C, garlic, and the herbs Echinacea, lomatium and astragalus with no results. Researchers in Chronic Fatigue Syndrome in the 1990’s including Dr. Paul Cheney identified abnormal liver function and impaired ability to detox in CFIDS patients. They recommended a metabolic clearing program using the product “Ultra Clear” which I did for several weeks. This also failed to be helpful. Finally I embarked on a seven day fast that included drinking psyllium and bentonite shakes and doing two colonics daily (a therapy for colon cleansing pioneered by Bernard Jensen and V.E. Irons).  I passed large amounts of dark mucous from my colon during the colonics. After completing the fast I had a period of several years when I felt much better and I rarely got sick with a colds or flus again. My insomnia and night sweats however persisted.

In my community there are a couple of women who are considered “medical intuitives” and subscribe various diets, herbs and remedies to help people. Both said that the liver was a key issue for me but their remedies were not helpful. I also pursued for several years to no avail therapies that were designed to eliminate allergies and sensitivities. These included the Nambudripad Allergy Elimination Technique, NeuroModulation Technique and food antigen programs utilizing electroacupunture diagnosis. And for six months I pursued a Candida elimination diet and treatment program. 

Despite all my efforts my health continued to decline and in the fall of 2001 I developed fibromyalgia. My muscles could no longer sustain any weight bearing exertion without resulting in injury and pain in my tendons and muscles.  In 2003 I was diagnosed with mercury poisoning and Lyme disease by my naturopathic physician. I spent two years addressing these issues through holistic therapies under the supervision of my naturopath and Dr. Dietrich Klinghart, a famous holistic medical doctor whose specialties include mercury toxicity and Lyme disease. My treatment consisted of intravenous therapy containing B & C vitamins, magnesium and glutathione (Meyers’s cocktail); heavy metal detox with the drug DMPS and alpha lipoic acid; antimicrobial herbs; infared saunas; lymph massages; and jaw cavitation surgery. My energy improved but my fibromyalgia did not. I went on a gluten and casein (milk protein) free diet for six months.

My overall health continued to decline until I began Oral Systemic Balance in the fall of 2007. (For more information see my post on Oral Systemic Balance fibrofriends.typepad.com/fibro_friends/2010/02/oral-systemic-b.html). Improving my ability to breathe through Oral Systemic Balance brought me out of the dark hole that my health had collapsed into however it did not resolve many of my health issues. I felt that I had moved from a survival state where I was struggling with life’s most basic element – air- to an exhaustive state. I could get away with doing more things but I still could not exercise or practice the piano, my sleep was remained very disturbed and my food and drug sensitivities were quite severe. 

In January of 2009 I received from a friend the book “Glutathione” by Dr. Robert Keller.  The title of the book immediately caught my attention because I was aware of glutathione’s important role in detoxification and liver function. Dr. Robert Keller is a world-renowned medical researcher and clinician whose specialty includes chronic fatigue and fibromyalgia. He observed that his chronically ill patients shared the unusual laboratory anomaly of low uric acid. (I had laboratory tests from as early as 1993 that show low uric acid levels). Dr. Keller discovered through research that uric acid is used in the body as the last line of defense when all other antioxidants have been expended. This led him to research glutathione, the primary or most important antioxidant and agent of detoxification found in every cell of the body. Reduced glutathione levels occur in many illnesses and result in damage to the mitochondria, the energy producing part of the cell. To download interesting articles written by Rich Van Konynenburg, Ph.D.,an independent researcher about the role of glutathione depletion in Chronic Fatigue Syndrome" go to: http://aboutmecfs.org/Trt/TrtGSHIntro.aspx.  

It is not possible to absorb glutathione orally because it is destroyed by stomach acid. Some physicians treat chronically ill patients with glutathione injections or include glutathione in a intravenous solution with vitamins and minerals. These therapies are expensive and their effects immediate and short term. There are also a number of glutathione promoting nutritional supplements including vitamin C, alpha lipoic acid, milk thistle and N-acetyl cysteine, which can provide the precursors to building one's own glutathione. Dr. Robert Keller spent 18 years studying these supplements and running clinical trials until he came up with a formula for an ideal glutathione optimizer. That formula is a patented product called MAX GXL sold through network marketing, which has been proven in an independent double blind placebo controlled cross over study to raise glutathione levels if taken as directed. For more information go to www.maxgxl.com. 

I took MAX GXL for six months in the beginning of 2009 beginning with a very small dose and gradually increasing. I noticed some general improvements in my health while taking MAX GXL however I still had significant problems with sleep, muscle function and energy. I think that MAX GXL is a excellent nutritional product for facilitating detoxification and increasing glutathione levels and that it may benefit many CFS/FMS patients however it was not the "silver bullet" for me in resolving my remaining issues. An alternative modality to raising glutathione levels through nutrition is are using nanotechnology homeopathic patches that stimulate the cellular production of glutathione through acupressure points. The patches are produced by a company called Lifewave and have been clinically shown to increase blood glutathione levels. For more information go to: www.lifewave.com.

Out of curiosity I did a laboratory test with SpectraCell that measures antioxidant levels six months after discontinuing MAX GXL. My antioxidants were within moderately optimal levels. I suspect that this is a reflection of getting increased amounts of oxygen and air from Oral Systemic Balance. I also repeated a hair analysis test that measures the levels of heavy metals and found that despite the extensive detox program I had undergone four years previously, the test results were almost identical showing mercury levels high. Obviously the protocol I followed failed. I think that the problems with detoxification in persons with chronic fatigue and fibromyalgia syndromes are the result of dysfunctions of the Central Nervous System or the brain in response to overwhelming physical stress. In his research on this topic Rich Van Konynenburg, Ph.D refers to a "Methylation Cycle Block" which is responsible for detoxification problems in persons with chronic fatigue syndrome as well as autism.

In 2008 I began a program of Mud Pack Detoxification Therapy under the supervision of Dr. Ralph Golan, a medical doctor who practices "alternative" medicine. Dr. Golan was trained in this therapy and a form of applied kinesiology or muscle testing by Dr. Robert Marshall. One of the most important and often overlooked areas that prevents the body from healing according to Dr. Marshall is the physical trauma caused by things such as fractures, injuries, surgery scars and vaccination scars. These areas can become weakened causing toxic chemicals and metabolic toxins to accumulate there and creating interference fields or blocked energetic pathways that can weaken organs and glands. Through the use of mud packs toxins can be pulled out externally from interference fields reestablishing normal healthy energy which can resolve physical symptoms and chronic health conditions. Through QRA Dr. Golan identified three interference fields in me: a Cesarean scar, an episiotomy scar, and a vaccination scar. I mud packed these areas according to a subscribed schedule and instructions. 

Mud packing my Cesarean and episiotomy scars went smoothly, however when I tried treating my vaccination scar, I had a bad reaction similar to the one I get when I consume a stimulant or take a drug resulting in very disturbed sleep and night sweats. When I had the area retested by Dr. Golan it had not cleared and my "download" sites in my hands and feet, areas where toxins leave the body were blocked. I then went through a lengthy schedule of mud packs to unblock these areas and repeated treating the vaccination scar but had the same bad reaction several times.  

In August of 2009 I began LENS (Low Intensity Neurofeedback System), a therapy which addresses dysfunctions of the Central Nervous System and post traumatic brain injury. LENS is a unique form of neurofeedback developed by Len Ochs where the brain receives feedback of its dominant brainwave frequency at an offset. The short sessions which last only seconds in duration produce profound shifts away from dysfunctional brain patterns and result in re-integration of the brain in more healthy and flexible patterns. When I started LENS I found that I could no longer tolerate taking MAX GXL. One interesting phenomena that occurred for a period of several months immediately after my LENS sessions was a strong aromatic taste in my mouth that lasted up to 15 minutes 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.  

In the fall of 2010 I went back to see Dr. Golan and gave mud pack therapy another try. According to Dr. Golan's analysis through QRA my vaccination scar was still weak and "reflexing" off my adrenal glands, a chronically weak area for me. I repeated the mud packs on my vaccination scar and this time had no adverse effects. In general I felt as if a layer of stress was lifted from my body and a chronic pattern of pain on the left side of my body starting at the top of my head, going down the left side of my neck and into my left shoulder and mid back, which was triggered by stimulants and stress has not reoccurred since I treated the vaccination scar on my left arm and I seem to have reached another level in my overall recovery from the therapy. I do not think this would have been possible without doing LENS. I suspect that detoxification is no longer an issue for me and I plan to verify this by repeating a Detoxification Profile in the future to confirm this. 

In conclusion I think that impaired detoxification in persons with Chronic Fatigue and Fibromyalgia is a result of the brain down regulating functions in response to overwhelming physical stress. Pursuing nutritionally based detoxification programs may provide temporary results but the problem will continue. To reverse this condition one must address the underlying stressors that caused the condition and the resulting traumatic patterns in the brain. For myself this was achieved by improving breathing with Oral Systemic Balance, LENS neurofeedback and Mud Pack Therapy.