Jay L. Murphy, aka Jayelle40@aol, died by assisted suicide June 25, 1997. She was a well known member of our on-line CP community in AOL. She wrote the following article and had submitted it to several women's magazines. Her story was never printed.
Please sign the Fibromyalgia Petition to further research and legislation for FMS in memory of Jay at FIBROWORLD.
The Silenced Epidemic
by Jay L. Murphy
"EXQUISITE TENDERNESS" is a medical term rarely used to desribe the ultimate degree of pain a human can withstand in a conscious state. This conjures in the mind horrific scenes of torture at its utmost. For literally millions of people this phrase perfectly describes their everyday life. FIBROMYALGIA, a little known or understood condition by the medical community has drastically been minimized by the media. I have joined the ranks of the estimated 15-20 million individuals suffering from this heinous disease.
Touted as "the yuppie flu", it frequently co-exists with Chronic Fatigue Syndrome, Chronic Epstein-Barr virus or Myofascia Pain Syndrome. Much has been written about this enigmatic disease but I have yet to see anything written by someone who is suffering from a full blown case. Most certainly it is because they lack the strength or ambition to do little more than getting out of bed and minimal self-grooming. I prayed that I might have a small reprieve so that I may have the ability to write about this subject and that prayer was answered. The numbers of those afflicted are growing at an unprecedented rate of 3 to 4 thousand people each month.
It is impossible to pinpoint the day I actually contracted Fibromyalgia; it is insidious and slowly takes from you all that is your being right down to your very soul. I moved from Boston to Nevada three years ago looking for a better life with my spouse, Rich, of fifteen years and our dog, Smokey. I think it was that last winter that cemented that decision for both of us. A brutal snowstorm had imprisoned us in our own home for 28 hours without electricity or heat. I do not consider myself to be much of a survivalist so I chose to live in a place where it was warm and dry and I would never have to see snow again.
I loved Nevada and considered it immediately to be my home. Shortly after moving here, I experienced a bizarre accident in which I had a significant eye injury as a result of an indiscernible display in a local housewares store. A wrought iron rod invisibly placed against a background of the same color went directly into my eye. It not only caused me to have visual problems, but physically caused that eye to protrude out of its socket. I needed reconstructive surgery to correct the problem, but awoke three times during the procedure. If that were not traumatic enough, I developed a severe staph infection from which I did not recover for three months. The surgery caused additional problems and necessitated undergoing additional surgery. Two years later I am not back to where I should be, however further surgery will compound and worsen my symptoms.
I was not aware of this at the time, but apparently, Fibromyalgia occurs almost 100% of the time after some physical life trauma such as an auto accident, surgery, etc.Somehow this sets off a chain reaction that greatly diminishes an individualís immune system. It was shortly after that when I came down with the worst flu of my life. I was flat on my back for four weeks and eventually developed pneumonia. It was a full year before I was able to start working part-time. The hours were perfect for my needs and I liked my boss and co-workers.
Gradually, I started to put on an incredulous amount of weight. Watching my weight was a lifetime job and I always did so along with regular exercise. I had gained twenty-five pounds in three months even though my food intake had almost gone down to nothing and I was still exercising regularly. I was also experiencing excruciating chest pains and feelings of pressure to the extent that I could not breathe. A cardiologist discovered I had a significant mitral valve prolapse problem.
She informed me that with medication to slow down my racing heart, I should be feeling all right in no time. Well, this was not the case. As so many doctors do, I felt she did not believe me when I told her I was not eating a sufficient amount of food to account for my recent weight gain. When I got on the scale, I broke down crying because of what I saw. I was eating about 500 calories a day and I felt that she thought I was sneaking Twinkies in my closet in the middle of the night. I later discovered that 70% of those diagnosed with Fibromyalgia inexplicably gain from 25-100 pounds -- even those who never before had a weight problem. My mild tiredness became a progressively debilitating fatigue. I was the one girl in a one-girl office and the fatigue got to the point whereby I would fall asleep while I was typing on the computer.
I developed a conglomeration of other symptoms such as intermittent fevers, panic attacks, asthma and excruciating headaches. I just always felt sick. The time I drove home and almost drove off the road three times I realized I was suffering from something serious. My productivity at work was diminishing rapidly and my frustration grew with the fact that I was not performing my tasks to perfection as this was my nature. My cognitive abilities began to alarm me. I was as if I were in a fog and my short-term memory loss was becoming greater as my responsibilities at work became greater as well. I knew that I would be unable to continue on this course and simultaneously hold onto my job.
At the risk of being thought a hypochondriac, I kept on seeking answers from my doctor. She was growing just as frustrated as I was as to why I was rapidly going in a downhill direction. She gave me a complete battery of tests, from blood screenings to MRI's and CAT scans and none of these tests came out positive. I was not happy that everything came out a normal range because that would mean no medicine or treatment given me could correct the way I felt. I started to feel as if I were going insane. She referred me out to other specialists but they too ran tests on me with no reflective diagnosis.
I was continuing to have concentration and comprehension problems at work and my self-esteem was basically non-existent.Being formerly employed as a medical researcher as well as an investigative reporter, to be inefficient at this fairly easy job was certainly a blow to my ego. With my knowledge of medicine, I started to imagine being afflicted with everything from Alzheimerís Disease to Lymphoma. If all of these problems were not enough, I developed severe gastro-intestinal problems whereby I was vomiting until I was bleeding. After seeing a gastro-enterologist and undergoing an invasive endoscopy procedure, they discovered I had erosive gastritis; my stomach lining was literally eaten away.
I left my job before my boss had the opportunity to fire me and decided to go to Scripps Clinic in California where they have some of the finest physicians in the country. I had to stay a week to see all the physicians they had lined up for my diagnosis. The first physician I met with said, "I believe you have Chronic Fibromyalgia. You appear to be in the right age group, (30-50) and have all the symptomologies".
I only hope that I am wrong because if this is what you have, there is nothing I can do for you. There is no cure and no treatment. This was after spending over $17,000 in medical bills which represented my 20% out-of-pocket expense.
It is noteworthy to add that if diagnosed with Fibromyalgia, a patient is determined "uninsurable" unless residing in California or are on Medicaid or Medicare. My appointment with a neuropsychologist proved to be the most upsetting for me. He discussed my symptoms and gave me simple cognitive function tests which I failed miserably. For my educational background I scored in the "two percentile'; that means 98% of the people tested would score higher than I did. He then informed me that I indeed did have Chronic Fibromyalgia. "If I have seen one patient like you, I have seen one thousand," was the way he expressed it to me. He further explained to me that he had seen doctors and professional people turn to homelessness because of their inability to support themselves.
This occurs because of the outrageously expensive health bills and Disability turning a deaf ear to a disease they refuse to recognize. The fact is that almost everyone who gets this disease has a profile of being a professional with an above average intelligence level. They are largely classified as "type A" diligent workers who would never consider living off the system. Now when they have given so much in taxes to help others, the Government turns their backs to them.
Much was written about Dr. Kevorkian's recently assisted suicide regarding Judith Curran who also had fallen victim to this disease. He was lambasted for assisting in a suicide on someone described as only "grossly overweight and depressed." Whether or not anyone agrees with the actions of Dr. Kevorkian, the facts as to exactly how this individual was really suffering must be known. Those with advanced cases of Fibromyalgia experience indescribable pain controlled only with the strongest of narcotics; methadone, morphine and opium.
The pain is widespread and has no boundaries related to the human imagination. You lose all of your independence because you have to rely on someone else to cook, clean and drive you to your frequent doctor appointments. You are like a child again. An overwhelming amount of marriages dissolves as spouses find it impossible to adjust to a new restrictive way of life. The number of suicides per capita of those afflicted is significantly higher than the general population because of the present hopelessness of any cure or treatment. Further, because it is not fatal, facing an additional 20-40 years of this disease seems an insurmountable feat. (I, as well as many others in my support group have joined the Hemlock Society and have prepared for the day we can fight this no longer.)
Theories on Fibromyalgiaís origination stem from anything from childhood vaccinations, to influenza inoculations to the spread of Gulf War Syndrome. This ravaging condition not only affects the physical body but the brain as well. Neurological deficits associated with Fibromyalgia include brain fog, extreme short-term memory loss, difficulty using words and numbers and comprehension problems. IQ scores dramatically drop.
There is presently minimal ongoing research to eliminate this parasite on society and as Fibromyalgia continues to affect more lives and our work force suffers, will we wait until it is too late to correct? The symptoms of Fibromyalgia number 150 and I am a worse case scenario in that I am experiencing? 90% of them. Many like I need a wheelchair if walking any distance and opium patches for the searing, widespread pains that respond to nothing else are prescribed for us. All of the symptoms I have previously described are all part of the Fibromyalgia Syndrome.
If the CDC, (Center for Disease Control) and NIH (National Institutes of Health) continue not to recognize the seriousness of this rapidly growing epidemic and conduct more aggressive research, what vast repercussions will this country experience? This is a rapidly spreading abomination that needs the immediate attention of Federal health agencies to give us the answers we seek.
Jay L. Murphy ©6/97
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Janis L. Murphy (a.k.a.Jayelle40@aol.com) posted the following message to the FMS Message Board in AOL suggesting a symbol or logo to represent FMS:
Subj: Re: We Need A Symbol
Date: Wed,23 Apr 97
How about a simple figure of a man, woman and child
w/o faces outlined in black and with a bright red aura around
all of them symbolizing the all-over pain? "Fibromyalgia -
the silenced epidemic that affects us all." Just a suggestion because
I saw this in my head.
- love, Jay
This logo is dedicated to her vision and her memory. May she live on with us always.
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