More than four million Americans have Chronic Fatigue Immune Dysfunction Syndrome. Women contract CFIDS three times more than men. Specialists say that CFIDS (also known as Chronic Fatigue Syndrome, CFIDS, or CFS) has no known cure and no real treatment. Many physicians are unwilling to take on patients with CFIDS because of the low recovery rate and the untreatable incapacitating symptoms. An expert at John’s Hopkins reveals that scores of doctors are unwilling to take on patients with CFIDS because he says that doing so is “such a downer.” 1
CFIDS is known by its sufferers as a walking death. According to the CFIDS Association of America, patients have a high risk of committing suicide and many of those with the disease have committed suicide. CFIDS is a chronic illness that affects much of the body, its functions, as well as the brain itself. 2
Unfortunately, by emphasizing the words “chronic fatigue” experts have given the disease a name that permits the general population to assume that CFIDS only causes tiredness. This is far from the reality. It is a highly complicated illness with a multitude of physical manifestations. Any sufferer of CFIDS knows that the symptoms don’t stop with fatigue, nor is it just a matter of being tired. The person with CFIDS can, and most often does, develop a debilitating exhaustion that causes them to become bed ridden, sometimes for days or weeks at a time. They feel lethargic in every fiber of their body and even the mind feels extreme fatigue. One woman with CFIDS told me that she used to have to crawl from her bed to the toilet on her hands and knees in order to relieve herself. Over a period of months, I spent three days at a time in bed with unbearable weakness.
The CFIDS Association of America characterizes the disease with the inclusion of the following criteria:
- Incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina)
- Concentration problems and short-term memory loss
- Flu-like symptoms such as pain in the joints and muscles, un-refreshing sleep, tender lymph nodes, sore throat, and headache.
These ailments are only a small portion of what a person with CFIDS goes through. The symptoms and the fatigue affect one’s social life, psychological state, physical activities, employment and/or schooling. Herpes, Shingles, and Chicken Pox are common in people with CFIDS, and doctors report that patients frequently have Mitral Valve Prolapse. MVP is a heart valve malfunction.
The majority of sufferers have varying symptoms that are usually not witnessed or noticed by others. Therefore, people frequently consider the person with CFIDS as “faking it,” or may feel their friend with CFIDS is perfectly healthy but just “a little down.”
Many people with the disease will only go out in public on good days, while being bed-ridden or too sick to leave their home on bad days. A large amount of sufferers are so ill they can no longer work. Others stop attending social functions and cease activities they used to enjoy. People with CFIDS can look just fine on the outside, and try to show a positive attitude in public, but in that moment, they may be suffering from multiple uncomfortable symptoms simultaneously. This was a decade-long routine for me. After the first two years of having CFIDS, I trained myself how to bear with the pain in order to get through a few errands or attend a social function. People with CFIDS learn to suffer in silence in order to go on with life, but their quality of living can feel like hell.
Symptoms Associated with CFIDS:
- Word-finding difficulties
- Inability to comprehend/retain what is read
- Impaired speech and/or reasoning
- Visual disturbances
- Psychological problems (depression, irritability, anxiety, panic attacks, mood swings)
- Chills and night sweats
- Shortness of breath
- Substantial decrease in the ability to exercise
- Dizziness or balance problems
- Alcohol intolerance
- Irregular heartbeat
- Irritable bowels (diarrhea, constipation, intestinal gas)
- Numbness, tingling, or burning sensations in the face or extremities
- Dryness of the mouth or eyes (sicca syndrome)
- Menstrual problems
- Chest pains
- Ringing in the ears (tinnitus)
- Sensitivity to noise/sound, odors, chemicals or medications
- Feeling of having a virus
- Feeling in a fog
- Muscle twitching
- Pathological (abnormal) or urgent hunger
- Sore throats
- Tender cervical or axillary lymph nodes
- Unusual headaches
- Un-refreshing sleep
- Post-exertion malaise
- Abdominal pain
- Unusual or frequent cravings for sugar and breads
- Strong sensitivity to tobacco smoke
- Excessive anger
- Loss of sex drive
- Hypoglycemic symptoms
- Excessive heartburn
- Urinary frequency or burning while urinating
- Tightness in chest
- Mucus in stools or black stools
- Vaginal burning, itching or discharge
- Neurological problems
- Seeing spots before eyes
- Tachycardia (rapid heart rate) with minimal or no exertion, which may persist for long periods of the day, coming on at any moment and with no known cause.
- Frequent mood swings
- Caffeine intolerance 3
These symptoms indicate that it can be extremely difficult to diagnose CFIDS. The disease is often only identified after extensive tests, countless doctor visits, and after much time and money is consumed. Spanning fourteen years, with the exception of fainting, I suffered from every one of the symptoms listed above. During the years that I was most sick with CFIDS, a typical day consisted of ten or twelve symptoms throughout various periods of the day. In one day, I experienced, rapid heart beat, inflamed lower lymph nodes, difficulty urinating, hemorrhoids, stomach aches, a headache, a tooth ache, dizziness, heart flutters, choking for no known reason, pain inside of my throat, and pathological hunger. I spent years shoveling food in my mouth in a desperate attempt to fill a hunger that was actually an emotional void in the pit of my stomach.
The physical manifestations would alternate but the pain and suffering was always the same, and my sanity constantly challenged. Reaching a diagnosis of CFIDS is frightening, painful, and uncomfortable. I endured an MRI, invasive tests inside my ears, had catheters inserted in my urethra, EKGs, heart stress tests, blood tests, chest X-rays, ultrasounds on my bladder and heart, neurological exams, and testing with pharmaceutical drugs to see which medication might rid me of the suffering. On one occasion I went to an emergency room in the middle of the night with chest pains. There were countless nights when I lay awake in physical pain. The repeated exams, lab tests, and MRI amounted to more than $30,000 in medical bills. The entire experience was strenuous on my mind, body, and marriage. During the years when the disease was most brutal, my days were filled with seclusion and deep anguish. There were seemingly endless days when I could not function or even go to the grocery store.
My body had been a walking memory which was unable to speak for more than thirty years. The CFIDS was a substitute language. The voice from my past screamed at me in the form of incapacitating and frightening symptoms. The body memories from the incest were diagnosed as CFIDS because this is what medical professionals could establish with their knowledge and experience of disease. They did their job in the only way they knew how. It was a correct diagnosis, but the cause of the disease was my mind’s reaction to being sexually abused, threatened with death, and abandoned by my mother.
I am in no way saying that it is safe or healthy to assume that a physical ailment is psychosomatic. People need to use caution in dealing with their health. I sought out a multitude of medical experts, some of which were seen at the well-known Cedar Sinai Medical Center in Los Angeles California, and I saw two CFIDS experts, one at UCLA. No medical doctor could help me. Hypnoanalysis therapy, which revived the incest memories, was the only thing that provided relief and an eventual cure for my physical suffering.
I am not proclaiming that everyone with CFIDS was sexually abused as a child or has repressed memories of abuse, but it is important to note that CFIDS is three times more common in women than men. Child sexual abuse is three times more common in women than men. In the United States, most cases of CIFDS are diagnosed in females ages twenty-five to forty-five. The average age of those who recover memories of child sexual abuse is twenty to forty. This is not a coincidence.
Researchers say no cure for CFIDS exists, but my experience proves that there is a cure. Personal experience and common sense speak volumes. Other people with CFIDS could be burying repressed pain from a traumatic childhood. It would be astounding if I were the only person with CFIDS, who had Dissociative Amnesia for child sexual abuse, and whose CFIDS was induced by my mind’s reaction to the abuse.
The diagnosis of CFIDS does not necessarily indicate a person was sexually or physically abused as a child. At the same time, just because someone had a traumatic childhood or mental health issues, does not mean that a diagnosis of CFIDS is not related to their abuse or mental state. The mind causes illness in the body and the same form of therapy which helped me heal from CFIDS has also healed people with epilepsy, asthma, breast cancer, kidney stones, and numerous other diseases.
Many people who are suffering from CFIDS become angry with me for telling my story because they have been fighting to get the medical and insurance industry to recognize that CFIDS is a medical condition. I truly am sorry for what these people go through and wish only health and peace for them, but I cannot suppress myself and my story. I need to be truthful and put my experience out there so that someone might be helped. I know for a fact that there is a cure for CFIDS — a cure that –compared to medical bills, dangerous pharmaceutical drugs, and the cost of unhelpful therapies and vitamins- is inexpensive and safe.
It is painful to face one’s childhood anguish and –for some- trauma, but I would rather have gone through the process of dealing with and healing from incest, than to take the hell of CFIDS to my grave.
1. Physiology of Chronic Fatigue Begins to Take Shape, Judy Foreman, Los Angeles Times; Sep 19, 2005; F.3;
2. CFIDS Association of America, cfids.org
3. CFIDS Association of America, cfids.org