I'm A Challenge to Your Balance
In 1995 I was working hard at a large, "white shoe" corporate law firm. They had offered me manager training and I said no. The politics at this place were such that if you weren't a "yes" person - you didn't get anywhere. Sorry, I am not a "yes" person. I had re-entered counseling after 10 years of infertility treatment had yielded yet no results. My marriage was circling the bowl. I not only didn't feel like a woman - I felt like nothing.
I buried myself in work. I became the go-to person the partners or most demanding lawyers would call to help with whatever cases they were on. I worked evenings so when most people were on their way home, I was on my way to Wall Street. I worked in a dark, airless office. My work was highly detail oriented and often very sensitive & confidential in nature.
It started slowly. And I kept attributing my symptoms to something else. Allergies, stress, PCOS. The metallic taste in my mouth, the buzzing in my head, the vomiting, the horrendous insomnia, the body pains that got worse not better, the inability for my eyes to focus. My employer tried to fire me, I was out so much, but my doctors intervened. Finally, I awoke after just 3 hours of sleep one night paralyzed on the left side. I couldn't walk. My ex-husband took me to the hospital and the doctors were positive I'd had a stroke. But they couldn't prove it.
In my then-GPs office, the doctor slid mental institution commitment papers across the desk to my husband. With what took most of my strength I grabbed the papers and tore them up. They wanted me committed. Put somewhere that I couldn't confuse & confound the medical profession.
I went home and the already bad abuse started to ramp up. How dare I get sick!! According to him, it was all just an "attempt to get sympathy & attention." Due to being abused my whole life by someone (parent, friends, associates, boyfriends...) I was numb to it and I believed my illness was just proof of what a bad person I must be - to deserve this. My only reliefs were my dog, of blessed memory, who slept next to me and started to growl at my ex when he spoke to me, and my neighbor/ best friend - who got me into the shower, put clean nightgowns on me, changed the sheets and did my laundry. No, my ex did none of these things.
Most friends stopped calling, or caring. I would crawl to the bathroom and my ex would step over me. He would scream at me for not going to work, for being lazy. He told me I was nothing. My own mother called me "useless now" and encouraged my husband to "cut his losses" and leave me. Sometimes I still believe them. I kept thinking I had AIDS or some sort of lymphoma. I prayed for death.
One day I got a call from a lady in Orange County, NY who had heard of me through the employer of my neighbor. She said "I think you have CFIDS." She went on to explain to me what had happened to her. Then she said, "get a pen and paper, let me give you the name of my doctor in Manhattan." I called the doctor as soon as I hung up the phone and was lucky to get an appointment at 8am the next day. My neighbor helped me gather up all the lab work, CAT scans and doctors notes I had copies of around the house. She called in for a day off and got me cleaned and tidied up the next day and into a cab. Within an hour I was examined by the doctor who looked carefully at my documentation. "Yes, you have Atypical M.S. - CFIDS, Fibromyalgia and some other overlapping problems." She wrote it all down for me.
People see me
I'm a challenge to your balance
I'm over your heads
How I confound you and astound you
- Natalie Merchant, WONDER
"When can I go back to work?" I asked. "We'll see" she said, knowing the real answer but not wanting to upset me. I found out months later I would never work again. I couldn't and didn't want to believe it then.
But worst of all was the disbelief I had gotten from other doctors who probably just didn't want to deal with someone who couldn't be treated, billed and shuffled out of the office. Over the next few months I battled my large, well-known disability company on my own and had test after test. Now that someone with the right education about this illness was looking at my tests - it was plain. I was ill and the tests had shown just how seriously ill I was. Why I got sick is a variety of reasons. What straw finally 'broke my back' is up to interpretation.
My ex has never apologized.
It has been 15 years since I was diagnosed. The internet was and sometimes still is my only way out of the house. I was lucky enough to get pregnant shortly after I was diagnosed and have wonderful children. I have worked hard and am now maybe 50-60% (depending on the day) of what I was. I will never again know what life is outside of being disabled. But at least now, I - like all of us with these invisible illnesses - am believed.
IT'S NOT THE YUPPIE FLU
For decades, people suffering from chronic fatigue syndrome have struggled to convince doctors, employers, friends and even family members that they were not imagining their debilitating symptoms. Skeptics called the illness “yuppie flu” and “shirker syndrome.”
But the syndrome is now finally gaining some official respect. The Centers for Disease Control and Prevention, which in 1999 acknowledged that it had diverted millions of dollars allocated by Congress for chronic fatigue syndrome research to other programs, has released studies that linked the condition to genetic mutations and abnormalities in gene expression involved in key physiological processes. The centers have also sponsored a $6 million public awareness campaign about the illness. And last month, the C.D.C. released survey data suggesting that the prevalence of the syndrome is far higher than previously thought, although these findings have stirred controversy among patients and scientists. Some scientists and many patients remain highly critical of the C.D.C.’s record on chronic fatigue syndrome, or C.F.S. But nearly everyone now agrees that the syndrome is real.
Patients say the word “fatigue” does not begin to describe their condition. Donna Flowers of Los Gatos, Calif., a physical therapist and former professional figure skater, said the profound exhaustion was unlike anything she had ever experienced.
The broadness of the definition has led to varying estimates of the syndrome’s prevalence. Based on previous surveys, the C.D.C. has estimated that more than a million Americans have the illness.
Last month, however, the disease control centers reported that a randomized telephone survey in Georgia, using a less restrictive methodology to identify cases, found that about 1 in 40 adults ages 18 to 59 met the diagnostic criteria — an estimate 6 to 10 times higher than previously reported rates.
However, many patients and researchers fear that the expanded prevalence rate could complicate the search for consistent findings across patient cohorts. These critics say the new figures are greatly inflated and include many people who are likely to be suffering not from chronic fatigue syndrome but from psychiatric illnesses.
Dr. Reeves responded that understanding of the disease and of some newer research technologies is still in its infancy, so methodological disagreements were to be expected. He defended the population-based approach as necessary for obtaining a broad picture and replicable results. “To me, this is the usual scientific dialogue,” he said.
Dr. Jose G. Montoya, a Stanford infectious disease specialist pursuing the kind of research favored by Ms. Loomis, caused a buzz last December when he reported remarkable improvement in 9 out of 12 patients given a powerful antiviral medication, valganciclovir. Dr. Montoya has just begun a randomized controlled trial of the drug, which is approved for other uses.
Dr. Montoya said some cases of the syndrome were caused when an acute infection set off a recurrence of latent infections of Epstein Barr virus and HHV-6, two pathogens that most people are exposed to in childhood. Ms. Flowers, the former figure skater, had high levels of antibodies to both viruses and was one of Dr. Montoya’s initial C.F.S. patients.
Six months after starting treatment, Ms. Flowers said, she was able to go snowboarding and take yoga and ballet classes. “Now I pace myself, but I’m probably 75 percent of normal,” she said. (Treatments are still experimental and not available to all patients or approved by insurance)
Many patients point to another problem with chronic fatigue syndrome: the name itself, which they say trivializes their condition and has discouraged researchers, drug companies and government agencies from taking it seriously. Many patients prefer the older British term, myalgic encephalomyelitis, which means “muscle pain with inflammation of the brain and spinal chord,” or a more generic term, myalgic encephalopathy.
“You can change people’s attributions of the seriousness of the illness if you have a more medical-sounding name,” said Dr. Leonard Jason, a professor of community psychology at DePaul University in Chicago.
ORIGINAL POST
SYMPTOMS
COMMON: (CFIDS), also known as chronic fatigue syndrome (CFS), brings with it a constellation of debilitating symptoms:
Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they're seeing
They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation
- Natalie Merchant, WONDER
I buried myself in work. I became the go-to person the partners or most demanding lawyers would call to help with whatever cases they were on. I worked evenings so when most people were on their way home, I was on my way to Wall Street. I worked in a dark, airless office. My work was highly detail oriented and often very sensitive & confidential in nature.
It started slowly. And I kept attributing my symptoms to something else. Allergies, stress, PCOS. The metallic taste in my mouth, the buzzing in my head, the vomiting, the horrendous insomnia, the body pains that got worse not better, the inability for my eyes to focus. My employer tried to fire me, I was out so much, but my doctors intervened. Finally, I awoke after just 3 hours of sleep one night paralyzed on the left side. I couldn't walk. My ex-husband took me to the hospital and the doctors were positive I'd had a stroke. But they couldn't prove it.
In my then-GPs office, the doctor slid mental institution commitment papers across the desk to my husband. With what took most of my strength I grabbed the papers and tore them up. They wanted me committed. Put somewhere that I couldn't confuse & confound the medical profession.
I went home and the already bad abuse started to ramp up. How dare I get sick!! According to him, it was all just an "attempt to get sympathy & attention." Due to being abused my whole life by someone (parent, friends, associates, boyfriends...) I was numb to it and I believed my illness was just proof of what a bad person I must be - to deserve this. My only reliefs were my dog, of blessed memory, who slept next to me and started to growl at my ex when he spoke to me, and my neighbor/ best friend - who got me into the shower, put clean nightgowns on me, changed the sheets and did my laundry. No, my ex did none of these things.
Most friends stopped calling, or caring. I would crawl to the bathroom and my ex would step over me. He would scream at me for not going to work, for being lazy. He told me I was nothing. My own mother called me "useless now" and encouraged my husband to "cut his losses" and leave me. Sometimes I still believe them. I kept thinking I had AIDS or some sort of lymphoma. I prayed for death.
One day I got a call from a lady in Orange County, NY who had heard of me through the employer of my neighbor. She said "I think you have CFIDS." She went on to explain to me what had happened to her. Then she said, "get a pen and paper, let me give you the name of my doctor in Manhattan." I called the doctor as soon as I hung up the phone and was lucky to get an appointment at 8am the next day. My neighbor helped me gather up all the lab work, CAT scans and doctors notes I had copies of around the house. She called in for a day off and got me cleaned and tidied up the next day and into a cab. Within an hour I was examined by the doctor who looked carefully at my documentation. "Yes, you have Atypical M.S. - CFIDS, Fibromyalgia and some other overlapping problems." She wrote it all down for me.
I'm a challenge to your balance
I'm over your heads
How I confound you and astound you
- Natalie Merchant, WONDER
"When can I go back to work?" I asked. "We'll see" she said, knowing the real answer but not wanting to upset me. I found out months later I would never work again. I couldn't and didn't want to believe it then.
But worst of all was the disbelief I had gotten from other doctors who probably just didn't want to deal with someone who couldn't be treated, billed and shuffled out of the office. Over the next few months I battled my large, well-known disability company on my own and had test after test. Now that someone with the right education about this illness was looking at my tests - it was plain. I was ill and the tests had shown just how seriously ill I was. Why I got sick is a variety of reasons. What straw finally 'broke my back' is up to interpretation.
My ex has never apologized.
It has been 15 years since I was diagnosed. The internet was and sometimes still is my only way out of the house. I was lucky enough to get pregnant shortly after I was diagnosed and have wonderful children. I have worked hard and am now maybe 50-60% (depending on the day) of what I was. I will never again know what life is outside of being disabled. But at least now, I - like all of us with these invisible illnesses - am believed.
IT'S NOT THE YUPPIE FLU
For decades, people suffering from chronic fatigue syndrome have struggled to convince doctors, employers, friends and even family members that they were not imagining their debilitating symptoms. Skeptics called the illness “yuppie flu” and “shirker syndrome.”
But the syndrome is now finally gaining some official respect. The Centers for Disease Control and Prevention, which in 1999 acknowledged that it had diverted millions of dollars allocated by Congress for chronic fatigue syndrome research to other programs, has released studies that linked the condition to genetic mutations and abnormalities in gene expression involved in key physiological processes. The centers have also sponsored a $6 million public awareness campaign about the illness. And last month, the C.D.C. released survey data suggesting that the prevalence of the syndrome is far higher than previously thought, although these findings have stirred controversy among patients and scientists. Some scientists and many patients remain highly critical of the C.D.C.’s record on chronic fatigue syndrome, or C.F.S. But nearly everyone now agrees that the syndrome is real.
“People with C.F.S. are as sick and as functionally impaired as someone with AIDS, with breast cancer, with chronic obstructive pulmonary disease,” said Dr. William Reeves, the lead expert on the illness at the C.D.C., who helped expose the centers’ misuse of chronic fatigue financing.Chronic fatigue syndrome was first identified as a distinct entity in the 1980s. (A virtually identical illness had been identified in Britain three decades earlier and called myalgic encephalomyelitis.) The illness causes overwhelming fatigue, sleep disorders and other severe symptoms and afflicts more women than men. No consistent biomarkers have been identified and no treatments have been approved for addressing the underlying causes, although some medications provide symptomatic relief.
Patients say the word “fatigue” does not begin to describe their condition. Donna Flowers of Los Gatos, Calif., a physical therapist and former professional figure skater, said the profound exhaustion was unlike anything she had ever experienced.
“I slept for 12 to 14 hours a day but still felt sleep-deprived,” said Ms. Flowers, 51, who fell ill several years ago after a bout of mononucleosis. “I had what we call ‘brain fog.’ I couldn’t think straight, and I could barely read. I couldn’t get the energy to go out of the door. I thought I was doomed. I wanted to die.”Studies have shown that people with the syndrome experience abnormalities in the central and autonomic nervous systems, the immune system, cognitive functions, the stress response pathways and other major biological functions. Researchers believe the illness will ultimately prove to have multiple causes, including genetic predisposition and exposure to microbial agents, toxins and other physical and emotional traumas. Studies have linked the onset of chronic fatigue syndrome with an acute bout of Lyme disease, Q fever, Ross River virus, parvovirus, mononucleosis and other infectious diseases.
“It’s unlikely that this big cluster of people who fit the symptoms all have the same triggers,” said Kimberly McCleary, president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, the advocacy group in charge of the C.D.C.-sponsored awareness campaign. “You’re looking not just at apples and oranges but pineapples, hot dogs and skateboards, too.”Under the most widely used case definition, a diagnosis of chronic fatigue syndrome requires six months of unexplained fatigue as well as four of eight other persistent symptoms: impaired memory and concentration, sore throat, tender lymph nodes, muscle pain, joint pain, headaches, disturbed sleeping patterns and post-exercise malaise.
The broadness of the definition has led to varying estimates of the syndrome’s prevalence. Based on previous surveys, the C.D.C. has estimated that more than a million Americans have the illness.
Last month, however, the disease control centers reported that a randomized telephone survey in Georgia, using a less restrictive methodology to identify cases, found that about 1 in 40 adults ages 18 to 59 met the diagnostic criteria — an estimate 6 to 10 times higher than previously reported rates.
However, many patients and researchers fear that the expanded prevalence rate could complicate the search for consistent findings across patient cohorts. These critics say the new figures are greatly inflated and include many people who are likely to be suffering not from chronic fatigue syndrome but from psychiatric illnesses.
“There are many, many conditions that are psychological in nature that share symptoms with this illness but do not share much of the underlying biology,” said John Herd, 55, a former medical illustrator and a C.F.S. patient for two decades.Researchers and patient advocates have faulted other aspects of the C.D.C.’s research. Dr. Jonathan Kerr, a microbiologist and chronic fatigue expert at St. George’s University of London, said the C.D.C.’s gene expression findings last year were “rather meaningless” because they were not confirmed through more advanced laboratory techniques. Kristin Loomis, executive director of the HHV-6 Foundation, a research advocacy group for a form of herpes virus that has been linked to C.F.S., said studying subsets of patients with similar profiles was more likely to generate useful findings than Dr. Reeves’s population-based approach.
Dr. Reeves responded that understanding of the disease and of some newer research technologies is still in its infancy, so methodological disagreements were to be expected. He defended the population-based approach as necessary for obtaining a broad picture and replicable results. “To me, this is the usual scientific dialogue,” he said.
Dr. Jose G. Montoya, a Stanford infectious disease specialist pursuing the kind of research favored by Ms. Loomis, caused a buzz last December when he reported remarkable improvement in 9 out of 12 patients given a powerful antiviral medication, valganciclovir. Dr. Montoya has just begun a randomized controlled trial of the drug, which is approved for other uses.
Dr. Montoya said some cases of the syndrome were caused when an acute infection set off a recurrence of latent infections of Epstein Barr virus and HHV-6, two pathogens that most people are exposed to in childhood. Ms. Flowers, the former figure skater, had high levels of antibodies to both viruses and was one of Dr. Montoya’s initial C.F.S. patients.
Six months after starting treatment, Ms. Flowers said, she was able to go snowboarding and take yoga and ballet classes. “Now I pace myself, but I’m probably 75 percent of normal,” she said. (Treatments are still experimental and not available to all patients or approved by insurance)
Many patients point to another problem with chronic fatigue syndrome: the name itself, which they say trivializes their condition and has discouraged researchers, drug companies and government agencies from taking it seriously. Many patients prefer the older British term, myalgic encephalomyelitis, which means “muscle pain with inflammation of the brain and spinal chord,” or a more generic term, myalgic encephalopathy.
“You can change people’s attributions of the seriousness of the illness if you have a more medical-sounding name,” said Dr. Leonard Jason, a professor of community psychology at DePaul University in Chicago.
ORIGINAL POST
SYMPTOMS
COMMON: (CFIDS), also known as chronic fatigue syndrome (CFS), brings with it a constellation of debilitating symptoms:
- incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina)
- problems with concentration and short-term memory. I
- flu-like symptoms such as pain in the joints and muscles
- unrefreshing sleep
- tender lymph nodes
- sore throat
- headache
- post-exertional malaise, a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period
Other Common Symptoms
- word-finding difficulties
- inability to comprehend/retain what is read
- inability to calculate numbers
- impairment of speech and/or mental reasoning
- visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescription changes)
- punctuate lesions on the brain
- cognitive problems (depression, irritability, anxiety, panic attacks, personality changes, mood swings) due the viral load's effect on the brain
- emotional lability and overly vulnerable (also due to brain impairment from viral attack)
- chills and night sweats
- shortness of breath
- dizziness and balance problems
- sensitivity to heat and/or cold
- alcohol intolerance
- irregular heartbeat
- irritable bowel (abdominal pain, diarrhea, constipation, intestinal gas)
- low-grade fever or low body temperature
- numbness or neuropathy
- tingling and/or burning sensations in the face or extremities
- dryness of the mouth and eyes (sicca syndrome)
- gynecological problems including PMS and endometriosis
- chest pains
- rashes
- ringing in the ears (tinnitus)
- allergies and sensitivities to noise/sound, odors, chemicals and medications
- weight changes without changes in diet
- light-headedness
- mental fogginess
- fainting
- muscle twitching
- seizures
Just to see me
Stand over my bed
Disbelieving what they're seeing
They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation
- Natalie Merchant, WONDER
Comments
i have had CFS for 18 yrs now, following EBV infection. not to sound melodramatic, but it has ruined my life.
i am 38, live with my mom, cannot work, have no degree, no husband or children, and can barely read a book.
my symptoms have always been primarily neurological, though i have fatigue as well.
since 2007, i have been trying antiviral therapy. there have been short periods where i was sure i was improving and long periods where i felt worse than ever. the jury's still out.
i'm hoping against hope that one day, something will work and give me my mind back.
anyway, if you would like to compare notes and could use a friend, i would be delighted. my email is : suebackagain123@yahoo.ca