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 .)

Comments

[mulberry bags]

I follow you VIA GFC and I love your blog!

[azithromycin]

I'm in no way an expert on this, and I do not imagine for a moment that C-E analysis is a sufficient moral guide for medical decision making. My concern is that these days we are thinking ONLY about cost, and not about the tremendous value that medicine also delivers.

A premise of Healthy Survivorship is that each individual adopts and develops the language that works well for him or her.

For me, "normal" in this context has connotations of regular, usual, natural. For years I dealt with big and little crises and discomforts (pain) that made "normal" an elusive goal.

For me, the notion of developing a "new normal" that integrated the changes and losses that accompanied my illness enabled me to regain that comforting sense of normalcy that would otherwise have been impossible. For me, the notion of a "new normal" helped me get good care and live as fully as possible.

Since the phrase doesn't work for you, I hope you can find other language that does. I'd also appreciate your sharing, if you don't mind, because it could help me understand you and others who don't find comfort in the notion of a new normal.

[Gelenkarme]

Nice post on Fibromyalgia. Did you hear about the Prolotherapy in which needles are used in treatment. If not try it, i heard and read about it.

[ultram]

This site is excellent and so is how the subject matter was explained. I also like some of the comments too.Waiting for next post.

[Ollie]

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[EA Cricket 2012]

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