Chronic Fatigue Syndrome."Lazy Man's Disease"???
I suffered with Lock Jaw as a child for a couple years. It was the most aweful experience being so young. The doctor would say, not to worry , it is just growing pains. I would experience extreme bouts with fatigue and would want to sleep all the time. My mom would literally have to force on the bedroom light and talk loudly to get me up. I would lay there , not feeling like I had slept a wink. I use to think she was so meant to do that , but now I realize , I would not get up without the "rudeness" of the morning ritual.
As I became a teenager, I would experience more and more of the tiredness,and leg achiness but the achiness was mild and I thought it was because of being tired. I never meantioned it. At the age of 18 , I was diagnosed with Mono. It set me back a month at that point , but never did I know , that it would set me back a lifetime.
My health was always that of a healthy child until the Mononucleosis. From then on , I was finding myself more tired all the time and catching every cold and flu bug around. I would learn to avoid people in general in fear of being sick. Colds would stay on for weeks , and virus' came on alot more.
By the time I was 21 I had had more flus and colds than ever in my life. I had reaccurrances with strep and lost my voice due to it all. Of course it cam back , when I had ovarian cysts and went through many jobs due to missing so much work. I had bladder infections, bowel problems, menstral troubles, you name it. Things were piling on all at once and I never knew , nor the doctors what was going on.
I spent my wedding day , so tired I could hardly stand. The summer day was hot on top of that and the worry of passing out was inevitable. My husbad told the minister, "make it short but sweet." So , he did!
I went from being totally healthy when my husband first met me to how I am now. He literally watched me go from an 18 year old to a 70 year old in 11 years. It was not so gradual the past 4 years. It has taken it's tole fast.
I have a job history as long as my arm that I find truelly embarrassing. But as I would miss work , I would quit jobs , in fear of being fired. I come from a family of hard workers and I had always worked. But as the CFS increased , I was having to try to understand what was going on with me. The docotrs were no help. I was even starting to consider myself lazy. It is how we feel with CFS isn't it? Lazy??????? But are we? Look at the way you were a few years back to how you are now. Would you have called yourself lazy then? Why would you ever think , or your doctors, that you would "become" lazy?? I don't believe that anyone who has NEVER been lazy would just start becoming that way. The doctors and specialists could not find anything wrong. All the bloodwork showed I was great. So why was I feeling so sickly?
Cfids (CFS) The Facts!
Chronic Fatigue Immune Deficiency Syndrome (CFIDS ,CFS) is characterized by a history of extreme exhaustion lasting at least 6 months or more, as well as other biochemical abnormalities. You could experience this exhaustion by the slightest efforts. When experiencing CFIDS you may have any one or more of these symptoms: aches , fever , sore throat, and the inability to concentrate. It is considered to be a diagnosis of exclusion , meaning all lab tests confirm you are of a normal nature and should be feeling fine.
adapted from Fibromyalgia & Chronic Mypfascial Pain- A survival Manual 2nd Edition
Devin Starlanyl and Mary Ellen Copeland
Important Links on this subject are as follows;
www.cfids.org
Chronic Fatigue@About.com
www.CFS-news.org
Immune Support.com
CFS Inform
From: "The Fibrom-L Community Update"
Thursday, July 19, 2001
What Causes Chronic Fatigue Syndrome?
A good distillation of the theories about chronic fatigue syndrome's
possible causes.
Well-Connected
Theories abound about the causes of chronic fatigue syndrome. Many
physicians still doubt that CFS is an actual disease but believe rather
that it is a component of a psychological disorder or a symptom of other
problems, similar to anemia and high blood pressure. Indeed, no primary
cause has been found that explains all cases of CFS, and a number of
experts believe that it develops from a combination of factors including
brain abnormalities, a hyper-reactive immune system, and a viral or other
infectious agent. Still, although all of these elements appear to be at
work in many cases of CFS, it is not yet clear what sequence of events
actually leads to the fatigue and other prominent symptoms of this
disorder. Other conditions that have been posited as causes for certain
CFS cases include hypotension, hyperventilation, and defective muscle
tissue.
Central Nervous System and Hormone Abnormalities
Abnormalities in the central nervous system, including pinpoint spots of
brain inflammation and abnormal levels of certain hormones have been
reported in a number of patients with CFS, but similar findings have also
been found in those without the illness. Of particular interest to
researchers are possible abnormalities in the brain system known as the
hypothalamus-pituitary-adrenal axis, which controls important functions,
including sleep, response to stress, and depression. A number of studies
on CFS patients have observed deficiencies in cortisol levels, a stress
hormone produced in the hypothalamus. Cortisol is a powerful suppressor of
the immune system. One central hypothesis for CFS suggests that after a
person with cortisol deficiency is exposed to a viral infection or some
other physical or emotional stress, the immune system over responds and
causes symptoms typical of chronic fatigue syndrome. (Unfortunately, drug
trials that replace cortisol have only reported modest improvement in
symptoms. One small but well-conducted study, in fact, reported elevated
levels of cortisol in the saliva of CFS patients.) Other researchers have
observed that men with CFS had high levels of serotonin, a
neurotransmitter (chemical messenger in the brain); such elevated levels
in the brain are associated with fatigue. If these hormonal imbalances
prove to be typical of CFS patients, the low levels of cortisol and high
levels of serotonin may help distinguish CFS from major depression, in
which an opposite relationship of these hormone levels occurs. Yet another
study reported that deficiencies in dopamine -- another important
neurotransmitter -- may underlie CFS.
Infections
In many instances, chronic fatigue syndrome starts suddenly with a
flu-like condition. Because most of the features of CFS resemble those of
a lingering viral illness, many researchers have focused on the
possibility that a virus or some other infectious agent causes the
syndrome. In the U.S. outbreaks of CFS occurring within the same
household, workplace, and community have been reported but most have not
been confirmed by the Centers for Disease Control. A large British study
of people with both diagnosed CFS and idiopathic chronic fatigue also
found no evidence of infection as a direct cause of either condition but
previous infections may play some role. Most cases of CFS occur
sporadically, cropping up individually without appearing to be contagious,
and there is no consistent evidence that CFS is spread through casual
contact, such as shaking hands or coughing, or by intimate sexual contact.
Well-designed studies of patients who met strict criteria for chronic
fatigue syndrome and of patients with idiopathic chronic fatigue have also
not found an increased incidence of any infections, including Lyme
disease, candida ("yeast infection"), herpesvirus type 6 (HHV-6), human T
cell lymphotropic (HTLVs), Epstein-Barr, measles, coxsackie B,
cytomegalovirus, or parvovirus. Some researchers are suggesting that
changes in normally harmless bacteria found in the intestine may play a
role in the development of CFS symptoms. Another theory referred to as
"hit and run" suggests that chronic fatigue syndrome might be the result
of a virus or bacteria that infects the body, causes immune abnormalities,
and is then eliminated. It leaves behind a damaged immune system, however,
that continues to cause flu-like symptoms even in the absence of the
virus. Other theories posit that immune system or neurologic abnormalities
cause a reactivation of a viral or bacterial infection that had presumably
resolved.
Immune System Abnormalities
CFS has been referred to as the "chronic fatigue immune dysfunction
syndrome", because some studies have found many irregularities of the
immune system, in which some components appear to be overreactive, whereas
others appear to be underreactive. Researchers have detected a number of
immune abnormalities in CFS patients, but no consistent or major
abnormality that could indicate a primary cause.
Allergies and Contributing Factors. Allergies are the only consistent
immune system abnormality among CFS patients. Researchers continue to
report that between 55% and 80% of CFS patients have allergies to food,
pollen, or other substances, which in turn appear to make the CFS symptoms
worse. Most allergic people, however, do not have CFS. Some research
indicates that in some cases people with both allergies and emotional
disorders, such as anxiety or depression, are more vulnerable to the
effects of the inflammatory response, which is triggered by allergens.
This response produces a number of immune factors, importantly cytokines
-- powerful factors that can cause fatigue, joint aches, and fever and
which can also affect the hypothalamus-pituitary-adrenal system in the
brain. Another recent study found a similar relationship between
depression, allergies and low back pain.
A theory that may help tie in the various conditions associated with CFS
suggests that a combination of factors, including allergies, stress, and
infections, may impair metabolic function by depleting adenosine
triphosphate (ATP). This enzyme stores energy in cells, and low levels are
common in CFS patients. One study showing symptom improvement using a
coenzyme called NADH that increased ATP levels lends support to this
theory.
Other Immune Abnormalities. The risk profile for chronic fatigue syndrome,
i.e., being female, Caucasian, and well-educated, is also the risk profile
for autoimmune diseases, such as systemic lupus erythematosus, rheumatoid
arthritis, Sjogren's syndrome, and multiple sclerosis, which also have
early symptoms resembling CFS. Common to such diseases are the presence of
high levels of autoantibodies -- antibodies that attack the patient's own
cells. Some studies are finding high levels of autoantibodies directed
against substances in cell nuclei in CFS patients. Others have found low
levels of certain antibodies. Some patients, particularly those with
severe CFS symptoms, have increased numbers of infection-fighting white
blood cells known as CD8 killer T cells, which launch attacks on invading
viruses and other disease-causing microorganisms. However, these same
people have lower-than-normal numbers of another type of white blood cell,
known as the suppressor T cell, which helps to shut down the immune
response once the invading organisms have been killed. The immune system
then becomes persistently overactive and produces fatigue, muscle aches,
and other symptoms of CFS. Other studies have indicated lower amounts of
so-called natural killer cells in many CFS patients, which might make them
more susceptible to viruses.
Hypotension
Studies are now finding that some people who fit the strict criteria for
chronic fatigue syndrome may also have a condition known as neurally
mediated hypotension (NMH). One recent study, for example, reported that
25 out of 26 adolescents with CFS experienced NMH. In another small study
of patients who met the criteria for CFS, 96% showed signs of NMH compared
to only 29% of the comparison group. NMH causes a dramatic drop in blood
pressure when standing up, even for as short a time as ten minutes. It is
the result of an abnormality in the central nervous system that signals
the heart to slow down and lower blood pressure when a person stands up;
blood pools in the feet and legs before circulating back up to the heart,
sometimes causing light-headedness, nausea, and fainting. NMH can explain
many of the symptoms of chronic fatigue, although the blood pressure
condition is most likely lifelong and chronic fatigue usually occurs in
midlife. Some experts believe that in CFS patients, a virus or infection
may cause injury to the central nervous system that results in the
hypotension abnormality. This could help explain why so many patients
report a viral infection before developing chronic fatigue syndrome. A
less severe condition known as postural orthostatic tachycardia syndrome
(POTS) is also associated with CFS. Major studies need to be done and the
results repeated with larger patient groups before they can be applied to
the majority of CFS patients.
Other Theories
Patients with CFS sometimes complain that they feel so weak that it seems
as if their muscles are no longer working properly. It has been proposed
that a defect in skeletal muscle could be the cause of the fatigue.
However, physical, chemical, and metabolic studies have not found any
consistent pattern of abnormalities in the muscles of these patients.
Another theory to account for some cases of chronic fatigue syndrome is
hyperventilation -- the tendency to "over-breathe", which can be caused by
many conditions, including asthma, hyperthyroidism, infections, and
anxiety disorder. Chronic hyperventilation may cause an imbalance in
oxygen and carbon dioxide, which can produce chest pain, faintness,
numbness in the fingers and toes, and motor impairment. In one study,
although a significant number of CFS patients experienced
hyperventilation, there were no differences in CFS symptoms between
patients with hyperventilation and patients who did not experience it.
Hyperventilation is very unlikely to be a cause of many instances of
chronic fatigue. One study found that after CFS patients exercise, they
exhibit slight abnormalities in the activity of the vagus nerves on the
heart; the vagus nerves run down each side of the neck and end at the
intestines and affect many bodily functions.
Causes of Chronic Fatigue-Like Symptoms after the Gulf War
Gulf War veterans have been intensively studied because of a high
percentage reporting CFS symptoms. One major study reported that 45% of
Gulf War veterans met the overall criteria for chronic fatigue syndrome,
with 6% having severe cases. Women veterans had three times the risk as
men. Interestingly 15% of the noncombat personnel -- representing the
general population -- reported the same problems although the cases in
general were less severe than in the veterans. Because such symptoms have
occurred in other veteran groups, some experts suspect that post-traumatic
stress syndrome may be responsible for the symptoms in some cases. After
finding that stress weakens the blood-brain barrier, some experts believe
that, in extremely stressful situations such as the Gulf War, this
weakened barrier may allow agents, such as small viruses, to pass into the
brain causing damage and triggering CFS symptoms. Whether uncovering the
causes of the syndrome in Gulf War soldiers can be applied to civilian
cases of CFS, however, is not known. More than a dozen different illnesses
have been detected in over 70,000 soldiers examined for this problem. Some
researchers identified an unusual bacteria-like organism known as
Mycoplasma fermentans in nearly half the veterans who suffered from Gulf
War syndrome, and one scientist speculated that it might have been
developed for biological warfare. Some researchers suspect that the
symptoms were caused by an experimental vaccine that contained a substance
called squalene. High levels of antibodies to this compound have been
found in the blood of veterans with CFS symptoms. An investigation is
underway. Still other studies have found that up to 20,000 troops may have
been exposed to low levels of the nerve gas sarin. Other possible causes
among these veterans include multiple immunizations, oil well fires, and
sleep apnea. One study reported that the incidence of hospitalization and
death was no higher in these veterans than in soldiers who had not been
stationed in the Persian Gulf, but this only proves that the symptoms are
not fatal or severe enough to send a patient to the hospital. The study
does not disprove the condition itself.
Well-Connected Board of Editors
Harvey Simon, M.D., Editor-in-Chief
Massachusetts Institute of Technology; Physician, Massachusetts General
Hospital
Masha J. Etkin, M.D., Gynecology
Harvard Medical School; Physician, Massachusetts General Hospital
John E. Godine, M.D., Ph.D., Metabolism
Harvard Medical School; Associate Physician, Massachusetts General Hospital
Daniel Heller, M.D., Pediatrics
Harvard Medical School; Associate Pediatrician, Massachusetts General
Hospital; Active Staff, Children's Hospital
Irene Kuter, M.D., D. Phil., Oncology
Harvard Medical School; Assistant Physician, Massachusetts General Hospital
Paul C. Shellito, M.D., Surgery
Harvard Medical School; Associate Visiting Surgeon, Massachusetts General
Hospital
Theodore A. Stern, M.D., Psychiatry
Harvard Medical School; Psychiatrist and Chief, Psychiatric Consultation
Service, Massachusetts General Hospital
Carol Peckham, Editorial Director
Cynthia Chevins, Publisher