(Darden describes a long and costly but ultimately quite successful process of treating her ME/CFS/FM that ended up impacting four common factors in ME/CFS – the endocrine system (thyroid), the cardiovascular system, the autonomic nervous system and the gut .
“Today after years of struggling with debilitating fatigue and agitation I walk in a very calm, strong and stable place right down the middle of the “wired tired continuum”.
Living with Chronic Fatigue Syndrome for over 30 years I often alternated between periods of agitation and extreme fatigue – what I call the “wired tired” continuum. This precarious existence felt like I was driving a car that was slightly out of control. It required every scrap of patience, intelligence and perseverance to navigate and ultimately to discover the therapies that reversed this condition. My experience of recovery was a gradual moving together of these extreme states – a slow crawl out of hell that brought my body into balance.
I think that Chronic Fatigue Syndrome is fundamentally a condition of exhaustion. Virtually all the enzymatic processes of the body are running in low gear. Typically persons with CFS have a low body temperature, a slow pulse and low blood pressure; and they have low levels of neurotransmitters, cortisol, amino acids, digestive enzymes and stomach acid. All of these were true for me.
Ironically when a person is this depleted they become easily agitated and lose the ability to rest and rejuvenate. Most people have experienced what this is like when they stay up for a couple of days without sleep. This may be due to a project deadline or personal crisis. They are exhausted but also feel “wired” at the same time and when there finally is time to rest they cannot sleep. People with CFS are in this state most of the time, not due to external stressors but because their bodies are always pushing up against exhaustion.
When I first became ill with chronic fatigue in 1973 I was extremely tired and had constant headaches and eyestrain, but I continued to sleep normally. Then after a couple of years I became increasingly agitated, my sleep became more fragile and I developed sensitivities to alcohol, caffeine, sugar and most drugs. My life became a balancing act of pursuing my work part time and taking care of myself.
I adopted some important relaxation skills that helped me dampen the wired state: EMG biofeedback on the muscles of my neck causing my headaches, surface temperature biofeedback to calm my cardiovascular system and alleviate night sweats, meditation, and gentle exercise including yoga and walking. I followed a strict diet devoid of stimulants, drugs and processed food. To a degree I was successful at maintaining a reasonable quality of life; however, the fatigue never abated.
Over time my situation became harder to manage and I became sensitive to more foods, including fruit. Then in 2001 my health collapsed further when I developed fibromyalgia, muscle pain, digestive issues and more disturbed sleep. I could no longer lead an active life physically and had to give up work, exercise and playing music. I only slept for 20 minutes at a stretch, I vacillated between feeling cold and hot and I rarely felt peaceful.
Throughout my illness I pursued a variety of treatments mostly in the alternative health realm since mainstream physicians had nothing to offer, believing my symptoms were “all in my head”. Among the many therapies I tried were a plethora of nutritional supplements and herbs, various forms of acupuncture, homeopathy, Ayurvedic medicine, bioidentical hormones, neurofeedback training, Nambudripad’s Allergy Elimination Technique, heavy metal detox, ozone therapy, neural therapy, pulsed electromagnetic field devices, phototherapy, Enhanced External Counterpulsation, Earthing, and Frequency Specific Microcurrent. Although I occasionally experienced some short-term improvements at the outset of these treatments, none were beneficial in the long term.
First Breakthrough: “Silent Thyroiditis”
When this occurred a certain kind of fatigue that I had struggled with for 30 years went away and never returned.
The first major breakthrough in my recovery began after an episode of “Silent Thyroiditis”, which is a period of hyperthyroidism that lasts several weeks followed by a period of hypothyroidism. Doctors do not know what causes silent thyroiditis and there is no treatment other than to ride out the roller coaster of symptoms after which one’s thyroid blood tests return to normal.
The experience led me to suspect that my thyroid function was not normal. Most of the time I had symptoms of hypothyroidism; I had a low body temperature around 97 degrees, a slow pulse of 50, and I was chronically constipated. I remember not being able to drink beverages with ice because I would get so cold I would shiver afterwards for hours. This alternated with short episodes of symptoms of hyperthyroidism when my resting pulse was around 80 and I felt hot.
I had slightly elevated antibodies for both hypo and hyper thyroidism, but my TSH was normal. None of the endocrinologists I consulted could make a definitive diagnosis or recommendation. This was the lowest point of my health when there was no stability in my functioning. With my primary care doctor’s approval I made the decision to have a total thyroidectomy in 2003.
Following my surgery I was not able to tolerate thyroid replacement in the form of T4, which agitated my nervous system. I was able to tolerate Amour thyroid in low doses but as my thyroid blood levels approached normal my symptoms of hypothyroidism increased. I learned the reason for this after a friend found the Wilson’s Thyroid Syndrome website on the Internet.
Dr. Denis Wilson discovered that after periods of stress or trauma some individuals develop symptoms of hypothyroidism, which include low body temperature, constipation, and fatigue even though their thyroid blood levels remain normal. Basically these individuals are in a survival mode where their bodies are conserving energy.
The symptoms intensify with thyroid replacements in the form of T4 and are more severe with total thyroid replacement after a thyroid is removed. However, the condition can be reversed by taking for a period of time the active thyroid hormone T3. The T3 used is obtained from a compounding pharmacy that combines the hormone with a slow release agent and is taken twice a day at increasingly larger doses until the body temperature returns to normal or 98.6 degrees, then decreased gradually as the body “resets” its metabolism.
I was referred to a naturopathic physician in my area who had 10 years of experience in treating Wilson’s Syndrome. I weaned myself off of Amour and started taking T3, gradually increasing the amount I took to 100 mcg twice a day to achieve a body temperature of 98.6 degrees.
When this occurred a certain kind of fatigue that I had struggled with for 30 years went away and never returned. Over a period of a year and a half I needed to take less and less of T3 to maintain a healthy body temperature until I was taking 30 mcg twice a day.
I then I switched to taking T4 (75 mcg daily) as my primary source of thyroid replacement, which I tolerate beautifully in addition to a small dose of T3 (10 mcg a day). My body temperature is 98.2 degrees first thing every morning. Getting my thyroid function back to normal did not solve all my health problems but it gave me a level of stability and peace that I previously did not have.
The second breakthrough in my health recovery began in 2007 when I became a patient of Dr. Farrand Robson, a TMJ dentist in Tacoma, Washington that employs specially designed oral appliances or mouth orthotics to help patients breathe better and restore balance to the autonomic nervous system.
Second Breakthrough: Oral Systemic Balance
Previous to doing OSB I had no awareness that I had any breathing difficulties but the therapy dramatically improved the amount of air filling my abdomen and chest and I find when I am stressed or tired I breathe fuller and deeper.
The therapy, which is called Oral Systemic Balance (OSB), has established that restrictions in the air passage due to the anatomy of the tongue, mouth and throat can result in physical pain, stimulation of the sympathetic nervous system, and cardiovascular compensations. Robson uses a variety of diagnostic tools to assess a patient’s oral function including x-rays of the air passage, heart rate variability testing, oxygen saturation, and EKG that measures the electrical activity of the heart. Adjustments to the contours and position of oral appliances produce positive changes in all these measurements.
In my particular case, Robson told me I had a large tongue in a relatively small and narrow mouth that was restricting my air passage. He fitted me with a nighttime “balance” appliance that consists of acrylic upper and lower shelves that fit over the teeth and are connected by hardware made out of titanium with a hinge that brings my lower jaw forward. The contours to the upper and lower shelves of the appliance and the position of the hinge were adjusted over a period of several years and multiple adjustments as my body adapted to changes in anatomy.
The process was long and costly but resulted in huge improvements in the overall stability of my health. Previous to doing OSB I had no awareness that I had any breathing difficulties, but the therapy dramatically improved the amount of air filling my abdomen and chest and I find when I am stressed or tired I breathe fuller and deeper. This happens without any conscious effort on my part.
In the past year I received further improvements in my health by taking advantage of new developments in the “science” of OSB and a redesign of my appliances and contour adjustments that correspond to improvements in cardiovascular function as measured by heart ultra sound equipment. Symptoms that went away included abnormally low blood pressure and a heavy, light headed feeling that I sometimes got when I walked up a hill or stairs.
Despite the improvements from stabilizing my thyroid function and improving my breathing, I still had room for improvement in my health and suffered from adrenal exhaustion and emotional agitation. I surmised that I might have some posttraumatic injury to my brain after living in a survival state for many years.
Third Breakthrough: Rebalancing the Central Nervous System Through Low Energy Neurofeedback (LENS)
Over time my tendency to become “wired” physically when I had an emotional stimulating conversation or experience went away.
I began exploring the field of neurofeedback, first trying Zengar neurofeedback training that was not helpful and then pursuing a remarkably effective therapy called LENS or Low Energy Neurofeedback. Developed by Dr. Len Ochs, a pioneer in the biofeedback field, LENS is a unique form of EEG feedback that operates entirely differently from traditional EEG or neurofeedback training.
Treatment involves very short feedback (a few seconds per session) of the dominant frequency of the brain at a slight offset or alteration at various sites. This results in breaking up dysfunctional patterns allowing the brain to heal. The therapy is particularly effective for healing brain trauma and injury.
I began LENS treatments at Ochslabs, the LENS center in Sebastopol, California in 2009 and then followed up with a practioner in my area with weekly appointments for several years. Due to my severe sensitivities I had to start slowly with a very small amount of feedback at a large offset. This was gradually increased over time as I became more stable. A diagnostic brain map that measures electrical activity at twenty sites showed that I had some sites with abnormally high amplitude and others with low or suppressed amplitude.
These two opposites are a manifestation of the wired tired continuum in the brain. Over a period of several years of treatments I observed a gradual calming of my nervous system. Chronic symptoms of dry mouth and loose stools went away at the beginning. An interesting phenomenon that occurred for a period of several months immediately after my LENS sessions was I that had a strong aromatic taste in my mouth followed by strong smelling urine. My intuition is that this was a manifestation of some kind of detoxification. Over time my tendency to become “wired” physically when I had an emotional stimulating conversation or experience went away.
Symptoms of adrenal exhaustion both experientially and as measured by cortisol levels also resolved with LENS. Dr. Jonathan Wright, a well-known leader in the field of alternative medicine, first diagnosed me with adrenal exhaustion in 1990. I took hydrocortisone and DHEA several times but this did not produce any lasting improvements in my health. My cortisol levels as measured by saliva tests remained low for the next 20 years, but after a year and a half of LENS treatments they rose to normal levels and have stayed there since.
Mainstream endocrinologists do not recognize adrenal exhaustion as measured by saliva tests because there is nothing fundamentally wrong with the adrenal gland. What is dysfunctional is the regulation of the hormones by the brain, which LENS was able to heal in my case. I believe that LENS also restores levels of important neurotransmitters that are low in persons with chronic illness.
A recent test that I did through Pharmasan Labs showed normal levels of gaba, glycine, gluamate, histamine, PEA, Dopamine, Norepinephrine, Epinephrine, Cortisol and Melatonin. Only one marker was low: serotonin, a neurotransmitter that is produced not in the brain but in the gastrointestinal tract leading me to my fourth area of recovery.
Fourth Breakthrough: Treating Small Intestinal Bacterial Overgrowth
By 2014 my recovery was on a sure footing with no signs of relapse or return of past symptoms. My digestion however remained compromised and I still had fibromyalgia muscle pain following physical exertion. I suspected that the two might be connected and finally after more years of sleuthing and consulting many health practitioners I was diagnosed with Small Intestine Bacterial Overgrowth or SIBO. SIBO is a chronic condition of bacterial overgrowth in the small intestine. It is diagnosed with a breath test that measures the hydrogen and methane gas produced by bacteria in the small intestine.
Normally the small intestine has low numbers of bacteria and the large intestine has high numbers of bacteria; however, in SIBO bacteria exist in large numbers in the small intestine that exceed the liver’s detoxifying capacity creating a state of toxemia and causing nutritional deficiencies.
The treatment protocol for SIBO, which was developed by Dr. Mark Pimentel, gastroenterologist at Cedars-Sinai Medical Center in Los Angeles, California includes following a diet low in specific carbohydrates and fiber, taking specific antibiotics that reduce the number of bacteria in the small intestine, and taking a prokentic drug that stimulates gut motility which is impaired by damage to the nerves that control the migrating motor complex.
SIBO patients often suffer from symptoms of both diarrhea which is produced from hydrogen gas, and constipation which is produced from methane gas. It is common to observe during SIBO treatments a lowering of the levels of one kind of bacteria followed by an increase in the levels of another kind. This is another manifestation of dysregulation of the “wired tired continuum”.
I have been in treatment for SIBO for the past six months and have experienced an improvement in my digestion, my fibromyalgia pain, and my energy. Healing from SIBO is a process that I expect may take many more months, but I remain confident that I am on track resolving this remaining issue.
It is my opinion that Chronic Fatigue Syndrome is a condition of dysregulation of many bodily systems that have been stressed physically. Fortunately I was able to find the therapies to restore that regulation, bring my body in balance, and heal.
None of the therapies that provided the catalyst for these changes were “quick fixes”, each requiring several years of treatment but today after years of struggling with debilitating fatigue and agitation I walk in a very calm, strong and stable place right down the middle of the “wired tired continuum”.
- Check out more about Darden and find her Health Rising blogs here. Check out her blogs on FibroFriends here.