Fibro Friends

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. 

Frequency Specific Microcurrent

Frequency Specific Microcurrent (FSM) is a system of energy medicine that employs low levels of electrical current in millionths of an ampere to stimulate the healing of specific health conditions. The frequencies used in FSM are square wave electromagnetic pulses created by a battery operated device that supplies electricity on two channels firing at the same time. Specific frequencies address specific conditions with the frequency thought to address or neutralize the condition on one channel and the frequency thought to address the tissue on the other. 

The history of electromagnetic therapy devices started in the early 1900's when many medical and osteopathic physicians were exploring the use of frequencies to treat patients. In 1934 Maurice Fishbein of the American Medical Association clamped down on electromagnetic therapies by declaring them "unscientific" and threatened to revoke the medical licenses of physicians who used them. Electromagnetic research and treatments declined and their equipment was removed from the market by the FDA in the mid-1950's. In the 1980's microcurrent began to be used by physicians in Europe and the United States for stimulating healing in wounds and fractures. Units delivering micro amperage current were approved in the category of TENS by the FDA for pain management. (TENS or Transcutaneous electrical nerve stimulation is a device that blocks pain using higher levels of current than FSM measured in milliamps, which was patented in 1974).

In 1994 Dr. Carolyn McMakin, a chiropractor practicing in Portland, Oregon began using microcurrent frequencies obtained from the clinical notes of Dr. Harry Van Gelder, a retired osteopath with additional frequencies obtained from the writings of Dr. Albert Abrams and Dr. McWilliams. She discovered that the frequencies appeared to do exactly what they were purported to do with no other effects, in other words the frequency listed to decrease inflammation reduced redness and swelling and the one to stop bleeding reduced bleeding. After successfully treating patients with frequencies and observing their effects McMakin began teaching the technique in 1997 to other health practitioners who were able to reproduce the same results. FSM is currently taught in seminars throughout the United States and in Ireland to medical and naturopatic physicians, chiropractors, physical therapists and acupuncturists. There are frequencies to address over 200 conditions including inflammation, scar tissue, herpes virus/shingles, nerve pain, brain fog, wound healing, and acute PTSD. One frequency combination or protocol has been found to eliminate the full body pain associated with fibromyalgia caused by spine trauma. 

In July of 2011 I traveled to Portland, Oregon to see Dr. Carolyn McMaken to found out if FSM would be beneficial for me. After a lengthy intake of my medical history, McMaken declared that I did not have fibromyalgia since my pain was not random and triggered almost entirely by physical exertion. In my opinion fibromyalgia and chronic fatigue are syndromes that encompass a wide variety of overlapping disorders and McMaken was simply stating that I did not have the kind of full body fibromyalgia pain caused by cervical trauma that responds to FSM. McMaken treated me with for a number of other conditions that she thought might be beneficial including concussion, liver toxicity, parasympathetic nervous system toxicity, and pituitary. She diagnosed the potential benefit of a frequency by my symptoms and also by feeling the muscle tension in my arm which softened in response to some frequencies during treatment. After my treatment session I felt positively intoxicated for about a half hour, a response according to McMaken that typically happens the first several times a person does FSM . 

McMaken thought that the pain I experience after using my muscles was similar to a condition called Delayed Onset Muscle Soreness which FSM has shown to help and has a published study on these results. Although McMaken had never encountered anyone like myself who had this condition in a chronic way, I personally know many people with fibromyalgia who have this condition which I describe in my post "Fibromyalgia Muscle Dysfunction". Delayed Onest Muscle Soreness or DOMS is the pain and stiffness felt in muscles several hours to days after unaccustomed or strenuous exercies resulting from muscle damage caused by eccentric exercise. DOMS is a universal symptom experience by most people who take a break from exercising or do an unfamiliar eccentric exercise. This symptom typically goes away once a person becomes accustomed to the exercise. In my case I am not able to tolerate exercise no matter how gradually I build up to it and damage my soft tissue with a very small amount of demand and stretching. The only remedies I have found is to limit my activities, practice EMG biofeedback on my muscles and rest.  A month after my initial visit I returned to Portland to see if FSM frequencies for DOMS would help my muscle condition. Prior to my first treatment I took a strenuous walk and did some yoga stretching. The next day I challenged myself further with a longer walk and more exercise followed by another FSM treatment. I felt intoxicated after both treatments and did not developed symptoms of muscle soreness. Dr. McMaken felt that the treatment was successul and sold me for $2,000 a Custom Care microcurrent unit distributed by Precision Distributing Precision, a company operated out of her residence in Longview, Washington. The unit was loaded with a number of frequency protocols for conditions that might be helpful for me including DOMS which I was instructed to run whenever I experienced muscle soreness. After I returned home I experienced another several days of respite from my muscle condition and continued with moderate activity followed by running the DOMS protocol on my Custom Care unit. Gradually over the period of a week my muscle condition returned and the frequencies appeared to become ineffective and then provoked an agitation of my nervous system. 

Unable to help me any further Dr. McMaken referred me to Dr. Catherine Willner, a neurologist and close colleague of McMaken's who resides in Durango, Colorado and practices FSM. Dr. Willner is an intellectual with impressive knowledge of both conventional and alternative medicine who practiced for ten years at the Mayo Clinic. She spent seven hours with me discussing my health history and did one session of FSM. Dr. Willner was puzzled by my unique set of symptoms and recommended that I do further testing at Swedish NeuroScience in Seattle to diagnose possible muscle pathology. She recommended that I experiment with additional FSM protocols at home. In order to add these protocols to my Custom Care Unit, it needed to be shipped back to Dr. McMakin, a process that took ten days. Further experimentation with these FSM frequencies on my own produced no positive results. When I requested to return my unit for a refund Dr. McMakin said that this was not possible. Since my unit includes many other frequencies that I did not use including wound healing, sinus cold and shingles, it may prove helpful to me or others I know in the future. 

Although I did not experience a resolution in any of my remaining health issues with FSM I feel overall a bit healthier than before I did the treatments. I know from personal reports that FSM has benefited many people with specific conditions particularly in the area of pain relief. I also know that FSM is very safe and low risk so in this way it is worth investigating for those suffering from chronic illness, however the success of the therapy is dependent on the proper diagnosis of the practitioner and whether there is a protocol for the patient's conditon. For more information and to find a FSM practitioner go to: www.frequencyspecific.com. For information on other forms in the emerging field of energy medicine read the post "Energy Medicine of the Future" http://fibrofriends.typepad.com/fibro_friends/2011/03/energy-medicine-of-the-future.html 

Custom Care microcurrent unit. Black graphite gloves are inserted between a wet towel and placed between treated area, usually the back and abdomen. 

Mila - The Healthiest Raw Food in the World?

Like many people with chronic health issues I have experimented with taking a variety of nutritional supplement in my quest for better health. Over the years I spent a small fortune trying various vitamins, minerals, herbs, digestive enzymes, and supplement formulas recommended by naturopathic and medical physicians, chiropractors, articles on the Internet, friends, and network marketing sales people. The big breakthroughs in my health however did not come from consuming any of these products and over time I became increasingly intolerant of supplements altogether. I have come to the conclusion for myself that the best way to obtain good nutrition is through eating  a variety of whole foods. 

The journalist Michael Pollan is one of my heroes on the subject of healthy eating. Through his articles in the New York Times magazine and books including "The Omnivore's Dilema" and "In Defense of Food" he has raised public awareness about the industrialization of agriculture and the flaws of nutritional science. In the case of my family he is preaching to the choir as we've been eating primarily whole foods for years, growing our own vegetables, raising chickens for eggs, and having the good fortune to have access to Alaskan seafood and pasture raised beef. I think that human beings can utilize the nutrition in whole foods better than vitamins and minerals that have been synthesized into supplement form. 

There are some foods that are particularly dense in beneficial nutrients. These so called "super foods" provide a great source of nutrition in a natural way and provide a good alternative to nutritional supplements. Some common super foods include salmon, eggs, garlic, green leafy vegetables, quinoa and yogurt. Other more obscure super foods from around the globe that are marketed specifically for their health benefits include chlorella, spirulina, goji and acai berries, raw cacao, maca and noni. 

Mila is proprietary selection of the whole raw chia seed or Salvia hispanica L. - a super food originally cultivated by the Aztecs who referred to it as "running food". When the Spanish conquered the Aztecs they burned the chia fields as a means of suppressing the native culture. In recent times chia has been "rediscovered" as a remarkable super food and source of dietary fiber, protein, omega 3 fatty acids, antioxidants and phytonutrients. After years of careful scientific study Mila was developed using specially selected chia strains grown at specific altitudes and latitudes with specific soils and growing seasons to produce the highest nutritional value. The raw seeds are opened and reduced to a powder with a proprietary "cold fracture" technology that keeps all the omega ols intact and maximizes this food's bio-availability. Mila can be mixed with water or any beverage or combined with a variety of foods and does not require refrigeration. 

I found out about Mila from a friend of mine who suffers from fibromyalgia. She told me that Mila had made a big difference in her irritable bowel symptoms and energy. I was reluctant to try Mila considering my hypersensitivity to many foods and supplements but I found that I tolerate Mila quite well. My bowel movements improved within a few days and are now are more regular and normal looking. For best results I let the Mila soak in liquid for at least six minutes before drinking.  After over ten years of chronic constipation, bloating and occasional loose stools this is a welcome change. I had previously tried probiotics, digestive enzymes and hydrochloric acid to address this issue with little success. If this is all Mila can do for me I will be pleased. Although I personally do not think that diet alone can provide the catalyist for systemic changes required to reverse serious conditions such as chronic fatigue and fibromyalgia, a healthy diet is nonetheless an important requirement which is why I list it as my number one "Strategy for Healing" in the opening post of this blog. I think that Mila which contains exceptionally high levels of omega fatty acids, protein and fiber as well as calcium, magnesium, iron and selenium is a positive addition to my diet. 

Mila is sold by independent distributors of the network marketing company Lifemax. If you want to order some Mila go to http://www.lifemax.net/Lisahemmeter. There is a lot of good information on the website. 

Fibromyalgia - A Perspective on Muscle Dysfunction and Effective Treatments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Fibromyalgia Awareness Day - A Message of Hope

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

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

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

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

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

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

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

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

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

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

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.

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. 

Summer Update - Fibromyalgia Breakthrough!

Dear Fibro Friends,

My recovery has taken a leap forward during the past couple of months.  It certainly has been a long journey but my continual persistence has paid off.  I continue to do LENS neurofeedback sessions once or twice a week, which has been very beneficial calming my nervous system, increasing energy, smoothing out emotional reactions and improving my sleep. I average around three nights of good sleep a week where I get some long stretches of deep sleep - not perfect but better than a year ago when I averaged about one good night of sleep a month!

LENS was not helpful in improving my muscle condition, which got agitated when I did any kind of sustained activities or exercise. I read in the book about LENS called "The Healing Power of Neurofeedback" about a woman that had recovered from fibromyalgia doing LENS combined with EMG biofeedback training. I contacted the doctor who developed the protocol but he was not helpful. I eventually found a biofeedback practitioner in my area who had experience with EMG training.  After several sessions it became clear to me that this was something that I needed to do everyday on my own and that it did not require any expertise. I located an inexpensive EMG home unit on the Internet manufactured in England that cost $190 including shipping. Beginning in late April I started practicing on my own twice a day. Once I started this training I never had another fibro flare - even when I "over did it" and over the next several months I gradually reversed my fibromyalgia condition to the point where I am now able to do most of the activities I love - walking, gardening and playing the piano with no bad effects. 

Using the EMG unit is simple. You place two electrode sensors in sticky pads on the large muscles of your forearms and one for grounding on the opposite arm. Then you watch the digital display of the muscle tone on the EMG unit and your brain figures out on its own how to decrease the level of muscle tone. Within 15 minutes I am always able to decrease the level considerably and within a half hour I can get the level below 4 microvolts, which corresponds to a relaxed muscle. Every so often I lift my fingers, which increases the muscle tension, then let go and see if I can get my muscle to relax again. Sometimes moving my arm to various positions or allowing it to drop suddenly can trigger a release of muscle tension. I have a picture of the placement of the electrode pads and more information about this on my blog post "Biofeedback Therapies for CFS & FMS" fibrofriends.typepad.com/fibro_friends/2010/05/biofeedback-therapies-for-cfs-fms.html.  I have used the pads on tender points on my legs as well however it does not work to place the pads on the shoulders or neck as this area picks up my pulse. The sticky pads are reusable but not transferrable. After some use they become less sticky but this can be remedied by washing them with soap and water.

EMG training was not effective in resolving the pain on the soles of my feet. I had an intuition that this had something to do with nerve pain and that I might try treating this with low intensity laser therapy. I had tried this therapy with a local chiropractor a year and a half ago, treating my legs and arms with no success but I had never tried treating my feet. After my first session I suggested to my chiropractor that we also try treating the top of the spine as well. I got an important clue from Dr. Whitcomb who achieved his results from frequent manipulations to this area. By treating the place where the nerve impulses begin and where they end I arrived at a winning protocol and after 12 sessions my recovery took another dramatic leap forward. The system that my chiropractor uses is called BioFlex and is one of the most advanced in the field of low level or cold laser therapy (www.bioflexlaser.com). 

I continue to practice with my EMG unit everyday, which reinforces my recovery. The curious thing is that when my muscle tone is relaxed I do not  feel anything different in my arms. The impulses for muscles to over contract and tense, which is common to all persons with fibromyalgia are controlled by the brain and originate in the upper spine at the base of the neck. EMG training on the arms and legs provides an incredible tool to modulate these effects and reverse the dysfunctional pattern. I am totally astounded that there is no mention of this in any of the literature on fibromyalgia. All the more reason to continue with my blog. 

I am convinced that both chronic fatigue and fibromyalgia syndromes are reversible conditions. Recovery requires a combination of different treatments for each person. I summarize these treatments in my opening blog post "Chronic Fatigue and Fibromyalgia - Strategies for Healing", (www.fibrofriends.typepad.com) which I continue to update along with specific subject posts as I learn more.  My recent posts on "Biofeedback Therapies for CFS & FMS", "What Causes CFS & FMS", "Treating CFS & FMS with Naturopathic Medicine" and "Fibromyalgia Muscle Dysfunction" are very informative with links to many resource sites. Check them out and be sure to refer others you know who have CFS & FMS to my blog.

I still have severe food and drug sensitivities, which requires me to adhere to a very strict, narrow diet and disturbed sleep. I suspect this is due to deregulation of my sympathetic/parasympathetic nervous system and/or adrenal function as a result of the physical trauma I lived with for many years. I am exploring several new therapies at this time along with LENS that I hope will unravel and resolve this final hurdle for me. It has been my experience that reversing CFS and FMS not only requires addressing the root cause, which in my case was a restricted air passage, it also requires reversing all the individual dysfunctional patterns that developed along the way. This is a process that requires a lot of time, persistence, and resources but given that is possible.   

I receive so much support and encouragement from my fibro friends. It is one thing to have love and support from family and friends but the support we get from each other with this condition is invaluable on a different level. Only others who have lived with these difficult conditions understand how difficult it is to maintain heart and mind through such physical adversity day in and day out. To keep the faith, to realize that we are not alone, to benefit from all our shared experiences. I am so grateful for my fibro friends who I continue to learn from and derive strength and hope. My prayers are with you all as you struggle for a better quality of life. Let me know how you are doing.

Love, Darden

Here I am using my EMG Biofeedback Unit

 

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.