Fibro Friends

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 .)

Oral Systemic Balance

Oral Systemic Balance is a patented therapeutic system that employs oral appliances or orthodics to facilitate greater ease of oral function, particularly breathing. The system was developed Dr. Farrand Robson, a TMJ dentist whose clinic is located in Tacoma, Washington. This groundbreaking system put me on a slow and steady path of healing. I believe it may address the root cause of many chronic health conditions including chronic fatigue and fibromaylgia syndromes, chronic Lyme disease, TMJ, sleep apnea, insomnia and anxiety disorders.

I was referred to Dr. Robson in February of 2007 by a Bowen Work therapist named Cathy Kruse. At that time my body so severely stressed that I was unable to tolerate any body work including Bowen Work. I related my health history to Cathy and described how I had struggled with severe fatigue and an adrenaline like state for over thirty years. Cathy said that Dr. Robson had developed a treatment that addressed these issues.

My initial appointment with Dr. Robson was very unsettling. I was in a state of complete exhaustion and could just barely manage the one and a half hour drive alone to Tacoma from my home on Bainbridge Island. After taking x-rays, impressions of my teeth and a heart rate variability test that measures the sympathetic nervous system Dr. Robson talked to me at length. He told me that I had a very large tongue and a relatively small mouth and that my tongue was restricting my air passage and this fact was the cause of my long term exhaustion and the stress on my nervous system. I was highly skeptical of his diagnosis because I had no awareness of breathing difficulties. Furthermore the estimated cost for my treatment was $23,000 which seemed exorbitant. (Cost for treatment varies with each patient). I decided instead to go to the Fibromyalgia Relief Center in South Lake Tahoe, California where I was a patient of Dr. Paul Whitcomb's for the next three months. (See my post "Paul Whitcomb - Friend or Foe" www.fibrofriends.typepad.com/fibro_friends/2008/08/paul-whitcomb---friend-or-foe-1.html). 

I got relief from some of my fibromyalgia symptoms during my stay at Tahoe but when I returned home my symptoms returned and within six weeks I was in a severe state of decline. I started thinking about Dr. Robson and wondered if in fact his diagnosis was correct. I found two articles that Robson had written about the link between chronic fatigue, fibromyalgia and TMJ syndrome. Since the maintenance of the throat is essential for survival (breathing and swallowing) difficulties in this area according to Robson result in greater muscle contraction, jaw pain and stimulation of the sympathetic nervous system. Improving oral function and the ease of maintaining an air passage in the throat results in a reduction of muscle contraction, a balancing of the Autonomic Nervous System and a lessening of physical stress on the entire body. Intellectually this theory made a lot of sense to me but I was still weary about pursuing OSB because I did not personally know of anyone who had done this treatment. I called Cathy Kruse and asked her about Dr. Robson. She said he was legitimate and that medical miracles were happening at his office everyday. Cathy asked me if I had been a thumb sucker and I said yes, a very avid one until the age of nine. Thumb sucking is a way that children can accommodate for a restricted air passage because the thumb moves the tongue out of the way. I tried sucking my thumb and discovered to my amazement that I got twice as much air with my thumb in my mouth than without. This was the real turning point for me. I consulted my naturopath and holistic medical doctors. They both said they had heard Dr. Robson speak but were turned off by his manner and the cost of his treatment so they had not explored it further. My family doctor referred me to a TMJ dentist whom he respected and this dentist was very familiar Robson and Oral Systemic Balance. He told me that Dr. Robson was a genius, totally dedicated to his work and that I would most likely benefit from the treatment.

When I began Oral Systemic Balance treatment on September 17, 2007 my health was in the worst state ever or what I refer to as “the black hole” and I was struggling with the will to live. I had trouble walking or standing for any length of time. When I walked to the top of the stairs I felt light headed and weak. I had constant abdominal pain and a dry mouth. My muscles hurt all over and were sore to the touch and my sleep was very disturbed with 15-20 awakenings each night. Dr. Robson fitted me with a balance or “night time” oral appliance that consists of acrylic upper and lower shelves that fit over the teeth which are connected by hardware made out of titanium with a hinge that brings the lower jaw forward. Within 24 hours of wearing the appliance I noticed a substantial improvement in my health. My abdominal pain went away and never returned and my muscles hurt less. Dr. Robson said because of my initial response to the appliance his diagnosis was correct and that I would do very well with the treatment.

I had appointments at Dr. Robson’s office every three to four weeks each appointment lasting two to five hours. I was treated by one of his assistants named Preston whom I liked very much. One of my appliances was adjusted and contours were changed or reshaped at each appointment. The changes to my appliances were made very gradually so that my body could assimilate them. Basically each adjustment brought my lower jaw and tongue a little farther forward and allowed me to breath better. People who have restricted breathing problems often have a forward head position to help them breath better. My posture and head position as measured in x-rays and photographs improved within the first month. At the beginning of my treatment I noticed that I got more air in my belly, then I started getting expansion in my ribs, then in my back and finally in my upper chest. I really had no experience of what it is like to breathe fully. The difference is amazing and it takes no effort on my part. 

Oral appliances take a little bit of time to get used to but are pretty comfortable to wear especially at night. When adjustments are made the hardware can cause sore places inside the mouth but these toughen up within a week. Over the course of two years I had my balance appliances completely redesigned and fabricated at least six times. I alternated between two "night time" or balance appliances, one which was most recently adjusted and a “backup” appliance which was worked on previously. I wore my balance appliance all day and night for one year except for when I was eating to facilitate the fastest progress. This made me look a little like a chipmunk or a character from "Planet of the Apes" as the hinges on the balance appliances protrude into the cheeks but I was beyond vanity when it came to my health. After one year I was given a simple, unobtrusive appliance that covers the lower shelf of my teeth which I wear during the day and I began to wear the balance appliance only at night.

At the beginning of my treatments I basically noticed a lessening of stress on my body. The feelings of adrenaline or “fight or flight” went away gradually. After several months I could walk to the top of the stairs without feeling light headed and my muscles were no longer sensitive to the touch. Chronic mucous in my throat went away after six months. After two years I had two well fitted balance or night time appliances and one day time appliance that optimized my ability to breathe. I feel as if I get three times as much air as I did before starting OSB and I would never want to be without my appliances. Oral Systemic Balance dramatically improved the quality of my life and I have maintained all the improvements I made with it however there were additional symptoms that did not resolve with this treatment. These included fibromyalgia muscle dysfunction, severe food and drug sensitivities and reactions, and insomnia. Dr. Robson and his staff were optimistic that these symptoms would resolve with OSB. Because of their dedication to their work and the results they observe in others with many chronic health conditions they had difficultly accepting that I did not get completely well with OSB and this caused some feelings of tension. 

I believe that Oral Systemic Balance addressed the root cause of my health condition and had I been able to receive this treatment earlier in my health history (20 or even 10 years ago) this may have resolved all my health problems. OSB relieved the physical stress on my body and brought balance to my Autonomic Nervous System that regulates heart rate, blood pressure and the endocrine system including the sympathetic and parasympathetic nervous system. It also improved my ability to detox as measured by laboratory tests. However even though the root cause of my health problems had finally been addressed there was still significant damage to my Central Nervous System or brain as a result of living in an exhaustive, survival state for 35 years due to not getting enough air or oxygen. Resolving my remaining symptoms required another exhaustive search but eventually led to another cutting edge therapy called Low Intensity Neurofeedback System or LENS that treats dysfunctions of the Central Nervous System which I am currently pursuing. I am making progress with my remaining issues and am hopefully that LENS will facilitate the rest of my recovery. 

Dr. Robson trains and certifies dentists who practice Oral Systemic Balance. He oversees these dentists and the appliances which are patented and fabricated at his laboratory in Tacoma, Washington. He continues to make breakthroughs and developments in his system which he refers to as a science. There are now over 30 Oral Systemic Balance certified dentists in various parts of the country. Some of them have very informative websites which one can find on the Internet.  There is a wide range in the cost of treatment depending on the individual case and dentist - with the amount I paid on the high end of the spectrum. (I know a couple of individuals whose treatment cost less than $10,000).  Many patients come from out of town to be treated by Dr. Robson at his office. You can also call Dr. Robson’s office TMJ Diagnostics at (800)977-1945 to get more information and to see if there is an OSB dentist in your area.

 

Here is a photograph of my balance appliance which I wear at night. Notice how the lower piece is forward. This brings my jaw  forward so that my tongue does not restrict my air passage. Plastic contours place my tongue in an optimal place for breathing. 

 

Here is a photograph of my day time appliance which I wear on my lower teeth. The plastic contours of the appliance remind my tongue to stay forward and in an optimal place for breathing.