Dear Fibro Friends,
This past year brought significant improvement in my health. My understanding of Chronic Fatigue and Fibromyalgia Syndromes keeps growing as I explore therapies and make progress in resolving symptoms.
Last fall I completed my Oral Systemic Balance treatments with Dr. Farrand Robson. It took me two years of monthly adjustments to attain a near perfect balance or nighttime appliance that maximizes my capacity to breathe and is comfortable to wear. I wear a simple non-intrusive lower shell appliance during the day and the balance appliance with a hinge that brings my lower jaw forward at night. I am convinced that an obstructive air passage was one of the major if not the root cause of my health problems and that it may be for others with CFS/FMS. I get two to three times as much air when I breathe now than before I started OSB and experience deep full breathes especially at nighttime.
OSB alone however did not resolve all my health problems or symptoms. I think that this is because there is damage to the nervous and endocrine systems as a result of living for years in an exhaustive state due to not getting adequate air or oxygen. So in other words I feel as if I won the war but I still have wounds. These wounds include disturbed sleep, agitated muscle dysfunction (fibromyalgia), which prevents me from exercising and food and drug sensitivities/reactions. I have spent the last couple of years sleuthing my way through resolving these remaining symptoms. I did several therapeutic trials lasting around 6 months each of supplements and hormones that were depleted. These included hydrocortisol, an amino acid formula and MAX GXL, which addressed deficiencies in cortisol, protein and glutathione respectively. In each case I experienced an improvement in my overall condition but then after several months the improvements seemed to taper off and I no longer needed to take these things. It was time to explore something else to move me to the next level in my recovery.
Last August I started a form of neurofeedback called LENS (Low Energy Neurofeedback System) that treats dysfunctions of the Central Nervous System and has been helpful for many persons with CFS/FMS. I started my treatments at the Och Labs headquarters in Sebastapol, California working with Cathy Wills. After four treatments that established a good response, I started weekly treatments with a therapist in my area. LENS operates completely different than traditional neurofeedback or EEG biofeedback training, which I tried and was not helpful for me. During a LENS session, which only last a few seconds in duration a person receives feedback of its dominant brain wave frequency at a slight offset. The brain recognizes its own pattern, shifts away from this and reintegrates in a healthy, flexible way. After my first couple of sessions that reintegration took days and brought a return or intensity of symptoms but afterwards I felt much better. Now I am tolerating the treatment without adverse effects and can treat more than one site per session.
Since I started LENS I have observed a gradual improvements in my remaining symptoms. My sleep is much better – less interruptions and deeper sleep when I am asleep. My energy in particular is much better in fact I do not feel that I have any problems with fatigue and my muscle condition is improving as well – not perfect but I can get away with doing more activities without paying for it afterwards. LENS is a process and I expect that my treatment will take one to two years. For more information go to www.ochslabs.com. An excellent book with a chapter on CFS/FMS on LENS is “The Healing Power of Neurofeedback” by Stephen Larsen.
In addition to weekly LENS treatments I am doing weekly sessions of Bowen Work, a very gentle form of physical therapy that releases tension in the nervous system particularly the muscles with small moves followed by periods of rest. I have done Bowen Work before but it is more effective now since I started LENS. Bowen has one move in particular that is particularly helpful for calming the nerves to all my muscles and often results in me falling asleep in the session. The manipulation is at the base of the skull on either side of the top of the spine. It seems to have a similar effect as Dr. Whitcomb’s adjustments but at a fraction of the force or intrusion. It would be interesting to have this move performed once or twice a day to see if the results would be more long lasting. It takes me 2 hours to commute to my Bowen Work therapist’s office so I would need to have someone in my community trained to do this. My therapist said it is one of the “Big Moves” of Bowen Work.
Most people with CFS/FMS experience a chronic one-sided pattern of pain going down the neck, shoulder blade and into the mid-back. Since I have been doing LENS my pattern has lessened considerably, which is a good sign because it seems symptomatic of a stressed nervous system. When a person is under prolonged physical stress the brain goes into a protective mode that can block many functions and in particular affects what is referred to as the Hypothalamus-Pituitary-Adrenal Axis. Even when the stress is over (i.e. air passage is unblocked with OSB and underlying infections are treated) the blocks can continue. The trick to complete recovery is finding ways to reverse these blocks. A good example of this is Wilson’s Low Body Temperature Syndrome (check out my post “Thyroid Function”), which completely reverses this post stress syndrome with short-term use of T3. I am hopeful that LENS will reverse my remaining symptoms but time will tell. I may have to continue my sleuthing to solve all the answers to the puzzle of this very complex condition.
I wrote several important posts this fall that you might be interested to read. In “Fibromyalgia Muscle Dysfunction” I attempt to describe the muscle condition specific to fibromyalgia in a very detailed way and I summarize various treatments that address it. In the “XMRV” I report on the discovery of a retrovirus linked to CFS and my opinion of this discovery, and in “Myths and Misunderstanding” I express my views on mind-body theories and how they have harmed people with chronic illness. Coincidentally a great book on the same subject was published recently by Barbara Ehrenreich entitled “Bright-Sided, How the Relentless Promotion of Positive Thinking has Undermined America”. It’s a great read and is an important critique on our cultural views.
As always I am interested in hearing how others are doing and in particular any treatments or therapies that have been helpful.
With best wishes for the New Year.
Darden