Chronic Fatigue Syndrome: More Than Just Being Tired
Illustration by Linda Marcille/Crow House Studio
Superman. Wonder Woman. That’s you. Well, maybe you’re not superhuman, able to leap tall buildings in a single bound, but I bet you are an active person looking forward to a life full of possibilities. Or you might be a person who has never felt completely well, but pushes ahead with lots of quiet time in-between.
Then one day you find yourself with a 103 degree temperature, nursing what is most likely the flu. You are certain you’ll be your old self soon. Sure enough the temperature returns to 98.6, but you can’t shake the “sick” feeling: the fatigue, muscle pain, malaise. Something you never experienced before is happening. You forget things and become easily confused. And there is more. Your circadian rhythm has decided to dance to the tune of a different drummer. You have insomnia or interrupted sleep patterns. When sleep does happen, it is in thirty-minute non-restful bursts. Sometimes the dance changes and you have hypersomnia, sleeping ten hours a night but still waking up exhausted.
Trying to find ways to explain to your friends and family why going to work and walking the dog on the same day is like asking you to climb Mt. Everest is not easy. You wonder if you are dying and ask the universe for help. Enter your family physician. After repeated lab tests that come out normal, he insists you are depressed and advises you to see a psychologist.
The battle begins. You have to prove to all the disbelievers that something is seriously wrong. You begin to doubt yourself. Maybe I am losing my mind. Maybe the symptoms are from psychological problems. Therapy as a cure is looking pretty good to you. You’ll do anything to feel good. You decide to give it a try. Clark Kent’s relationship to kryptonite might be similar to your relationship to past, unresolved conflicts. The fatigue, the sleep disturbances, the aches, the confusion (brain fog) continue even after you have realized your relationship to your parents was less than ideal, and in a past life you were Attila the Hun. Nothing helps and the doctors insist you have deep-rooted psychological problems, and isn’t it too bad Sigmund Freud is not alive.
You feel hopeless. Then in the depths of your despair, a miracle appears. By your own research and the evaluation of a knowledgeable doctor, you find a name for what is happening to you: Chronic Fatigue Syndrome (CFS). Finally, everything makes sense.
The History of CFS
Emotional disorders have been considered the cause of many illnesses in the history of medicine where no scientific causes could be found. CFS has not escaped this stigma by many in the medical community and it has been suggested that CFS has been around for a long time under other names. Neurasthenia is one of these look-a-like illnesses. Neurasthenia was the diagnosis given to many women in the late 19th century with symptoms similar to CFS. Neurasthenia is defined by Webster’s New World College Dictionary as, “former category of mental disorder including such symptoms as irritability, fatigue, weakness, anxiety, and localized pain without apparent physical causes, thought to result from weakness or exhaustion of the nervous system.” While neurasthenia and CFS have some symptoms in common, it is not clear whether neurasthenia and CFS are versions of the same disorder.
The Center for Disease Control (CDC) in Atlanta, GA, coined the name Chronic Fatigue Syndrome as a “working case definition” for research purposes in 1988. In 1993, CDC created a revised case definition for the condition. Today, sufferers of CFS and prominent doctors are looking into the possible causes of this illness while the psychiatric debate continues in many circles. There is also a movement underway to change the name to one that does not leave room for jokes by late night talk show hosts. CFS is being taken seriously by many in the medical community and is no longer labeled “the yuppie flu.”
CFS is also known as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), Chronic Epstein-Barr Virus, and Myalgic Encephalomyelitis (ME). There are many that suspect that fibromyalgia and CFS are various forms of the same illness. The diagnosis a patient gets depends on who their physician is. Rheumatologists attribute symptoms of pain and fatigue mostly to fibromyalgia, and infectious disease doctors emphasize the fatigue, confusion, tender lymph nodes, and re-occurring viruses which are elements of CFS. The definitive answer of whether these two illnesses are one and the same is still up for grabs.
There is some agreement on the possible causes for CFS. Viruses of all kinds (including Epstein-Barr) that cause immune dysfunction have been blamed for CFS. Other theories of origin are structural problems like Chiari Syndrome, nutritional deficiencies, neurally mediated hypotension, endocrine imbalances (low levels of cortisol or estrogen dominance), chronic undiagnosed candida infections, undiagnosed Lymes’ Disease, genetic susceptibility, environmental toxins, central nervous system infections (neurosomatic illnesses), stress overload, and combinations of the above. People of all ages get CFS, but it is most commonly found in women under forty-five. Information about CFS demographics can be found on the CDC website at http://www.cdc.gov/cfs/education/wb3151/chapter1-2.html
Chronic fatigue syndrome is not just being tired. It is distinguished from other illnesses and forms of idiopathic fatigue (fatigue with no discernable cause) by means of criteria evaluation. The revised CDC definition of CFS in 1993 can be found in the December 15, 1994 issue of Annals of Internal Medicine. The new definition was written by an international group of researchers to make a distinction between CFS and other medical conditions that cause fatigue. It includes guidelines for diagnosing patients.
Criteria for a CFS Diagnosis
The following two criteria must be met for a patient to receive a CFS diagnosis:
- New onset of fatigue that is not the result of on-going exertion and is not substantially alleviated by rest, causing a 50% reduction in activity for at least six months. Exclusion of other illnesses that cause fatigue.
- Four or more of the following symptoms must be present:
- substantial impairment in short-term memory or concentration
- sore throat
- tender lymph node
- muscle pain
- multi-joint pain without joint swelling or redness
- headaches of a new type, pattern or severity
- unrefreshing sleep
- post exertional malaise lasting more than 24 hours
Other symptoms not required for CFS diagnosis but common in many patients are: abdominal pain, bloating, chest pain, alcohol intolerance, jaw pain, anxiety disorders, light sensitivity, dizziness, night sweats, allergies, PMS, dry eyes and mouth, restless legs, and eye pain.
Other conditions that can cause fatigue and should be ruled out before a CFS diagnosis include: hypothyroidism, sleep apnea, narcolepsy, side effects of medication, chronic conditions, hepatitis B or C, bipolar affective disorders, dementia, alcohol and substance abuse, anorexia nervosa, bulimia nervosa, obesity, depression.
Holistic Treatment of Chronic Fatigue Syndrome
Whatever the origin, CFS is a mysterious illness that has no known cure. Patients have varied amounts of success in recovery. Some people return to a modified version of their lives after being sick for one to five years, others have a complete remission, some experience waxing and waning (a little CFS clinical jargon) of their symptoms, and others only get worse over time. The idea of a complete remission (cure) is controversial to many doctors and patients. I believe it is possible. People choose to manage symptoms with a variety of traditional and alternative methods. People also can choose whether to believe they can become healthy.
Here are some of the holistic ways to treat CFS. Many of these treatments require the expertise of practicing professionals in the alternative health communities. What works for one person may not work for another, but never give up hope; one or a combination of treatments has helped to alleviate the symptoms of CFS in countless patients. I have asterisked the supplements and treatments that have worked for me. Three stars indicates the supplement and treatments have profoundly affected my healing in a positive way. Two stars means my general energy and state of well being improved dramatically over time. One star means my symptoms were lessened. No star indicates that either I did not use this treatment myself or else it did not work for me but has successfully helped other CFS patients.
Diet and Nutritional Supplements
*** eating low GI (glycemic index) carbs
*** fish oil
*** vitamin D and B vitamins
*** supplements that support ATP function (mitochondria health): lipoic acid, acetyl L-carnitine , L-glutathione, grape seed extract, coenzyme Q-10
*** adrenal support
*** melatonin (sleep support)
** natural progesterone cream
** calcium and magnesium
** flaxseed meal
** herbs: echinacea, goldenseal, licorice, tumeric
* phosphatidyl choline
* natural thyroid support
dhea, nadh, green super foods, digestive enzymes, medicinal mushrooms
*** EFT (Emotional Freedom Technique)
***Tui na massage, chakra balancing, Reiki, polarity, acupuncture
*** color healing
*** hatha yoga
** walking, swimming, tai chi
counseling and psychotherapy
*** Examining my ideas and attitudes about myself, my life and being healthy. Here is an interesting link to ponder.
*** forgiveness of self and others
*** fun and passion — this can be any activity that gives you great inner contentment, something to get really excited about.
With a CFS diagnosis you are starting on a journey of self-discovery and knowledge. Alleviating symptoms and creating the quality of life you desire becomes your focus. In a very unique way, chronic fatigue syndrome, like all illnesses, is a teacher that takes you on an inner journey where you find what you truly value in life and what you are willing to do to achieve your dreams.
Elizabeth Glixman is a writer and illustrator. She has been exploring alternative mind-body healing methods for many years.
- Ali, Majid M.D. The Canary and Chronic Fatigue. Denville, NJ: Life Span Press, 1995.
- Bell, David M.D. Faces of CFS. Lyndonville, NY: self-published, 2000.
- Bell, David M.D., Robinson, Tom; Robinson, Mary Z.; Pollard, Jean; Pollard, Tom; Floyd, Bonnie. Parents’ Guide to CFIDS: How to Be an Advocate for Your Child with Chronic Fatigue Immune Dysfunction Syndrome. Binghamton, NY: Haworth Press, 1999.
- Bernhard, Toni, How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers. Wisdom Publications, 2010.
- Goldstein, Jay M.D. Betrayal by the Brain: Neurological Basis of CFS, Fibromyalgia Syndrome and Related Neural Network Disorders. Binghamton, NY: Haworth Press, 1996.
- Katie, Byron Loving What Is. N.Y: Harmony Books, 2002.
- Lark, Susan M. M.D. Chronic Fatigue Self Help Book. Berkeley, CA: Celestial Arts, 1995.
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- Teitelbaum, Jacob M.D. From Fatigued to Fantastic. New York, NY: Avery Publishing Group, 1998.
http://www.howtobesick.com/ (Buddhist Inspired guide for when you are healing or managing mind, body and spirit)
http://www.thework.com/index.php (Byron Katie’s Work for challenging your thoughts, rewriting what is)