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!
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. But 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 fibromyalgia, 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 protocol, 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 which causes the brain to heal on its own. 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. His system is therefore one 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, one at a time in a specific order determined by a brain map of the individual. And the changes produced are 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 Amee Roads. 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 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. I feel confident that I am on the path to complete recovery from fibromyalgia and my remaining symptoms on this program.
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.
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 .