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Did you change your name?
What makes CFS Success
Story different than other CFS websites?
What does CFS stand for and how is it related to CFIDS?
What is CFS?
How do I know if I have CFS?
What tests should my doctor take?
What does PWC and PWCs stand for?
What tests did you have done before being diagnosed with CFS?
What do you mean by "got better" and "recovery"?
Are you cured?
Did you ever have a relapse?
What are your qualifications to give advice on CFS?
What does SSD stand for?
Did you try to get SSD on your own (before getting a lawyer)?
What law firm did you use to get Disability?
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~ The Answers ~
Did you change your name?
Several repeat visitors have asked if I changed my
name. That's because when I updated this website I started using my nickname in place of my first name. So the
answer is yes I did change the name I use on this website.
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What makes CFS Success Story different than
other CFS websites?
CFS Success
Story is different because it's main purpose is to help PWCs feel better
today. Rather
than focusing on what PWCs can't
do, on what help is not
available, on what treatments and tests are yet to come, and the fact that there is no proven cure, CFS Success Story's main focus is on helping the PWC feel better today with what information and resources we have now.
CFS Success Story
aims to help the PWC feel better both emotionally and physically. I believe this can be done through a combination
of self-help and professional help. I've included links to many sites I feel may aid PWCs finding this help.
You'll also notice I've included HAPPY LINKS as well as My Favorite Doctor Jokes and My
Favorite Lawyer Jokes because I feel very strongly that humor is sometimes the best medicine (especially if what
ails you is in any way related to stress as I believe CFS is).
Another unique feature of CFS Success Story is the way it's put together. As a recovering PWC I know first hand how hard it
is for a PWC to read and concentrate. Everything from navigation, to the background & colors used, to the font
styles (size & shape of text or letters), to the basic layout is done purposely with the PWC in mind. Nothing
flashy or hard on the eyes. I must thank Avalon Web Design for helping me put together
this site. I told them exactly what I wanted and they did it.
I invite all PWCs to make suggestions on how I can make this site easier to read
& navigate or make more informative. Suggestions are always welcome.
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What does CFS stand for and how is it related to CFIDS?
CFS stands for "Chronic Fatigue Syndrome".
CFIDS or "Chronic Fatigue and Immune Dysfunction Syndrome" is a synonym for CFS used by some patients
and physicians. They are considered by most to be the same thing. Keep in mind however that according
to the CDC "no immune dysfunction or aberration has been persuasively linked to chronic fatigue syndrome".
You should also keep in mind the CDC learns something new everyday and many scientists and physicians still believe
there is a connection between CFS and the immune system.
According to the US federal government the CDC has the last word on this. I suggest
you rent the movie AND THE BAND PLAYED ON which dramatizes how poorly the CDC handled the AIDS crisis.
This may give you an alternate perspective of the CDC and it's opinions.
To complicate things even further, CFS is also referred to as ME (Myalgic Encephalopathy)
by some patients and organizations. There seems to be as much controversy over the name as there is over
the definition of the disease , it's treatment, and diagnosis.
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What is CFS?
Since I am not a doctor and have no medical background
the definition for CFS is best left to the "professionals". The following definition of CFS comes
directly from the Centers For Disease Control (CDC) website. You can find a link to the CDC through the Great
Links page of CFS Success Story.
Please keep in mind I include the CDC's definition of CFS as an answer to your question for one main reason:
If you are disabled by CFS and are in need of financial help through SSD you will have to prove you have CFS as
it is defined by the CDC. There are many opinions as to the exact definition of CFS. This is only one
of them:
A case of the chronic fatigue syndrome is defined by the presence
of the following: 1) clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or
definite onset (has not been lifelong); is not the result of ongoing exertion; is not substantially alleviated
by rest; and results in substantial reduction in previous levels of occupational, educational, social, or personal
activities; and 2) the concurrent occurrence of four or more of the following symptoms, all of which must have
persisted or recurred during 6 or more consecutive months of illness and must not have predated the fatigue: self-reported
impairment in short-term memory or concentration severe enough to cause substantial reduction in previous levels
of occupational, educational, social, or personal activities; sore throat; tender cervical or axillary lymph nodes;
muscle pain; multijoint pain without joint swelling or redness; headaches of a new type, pattern, or severity;
unrefreshing sleep; and postexertional malaise lasting more than 24 hours.
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How do I know if I have CFS?
There is as much controversy over how one can tell
if they truly have CFS as there is over the definition of CFS. To find out if you have CFS you should be
tested by a doctor who understands CFS and who believes that it exists. Unfortunately many doctors still
believe it's "all in your head". While it is important to rule out psychosomatic illness as well
as other illnesses when diagnosing CFS it's also important your doctor keeps an open mind to all of the possibilities
and that he or she take any and all tests needed to insure your illness is not caused by something other than CFS.
In fact since there is no true test for diagnosing CFS. It is only through the exclusion of other illness that
your doctor can tell if you have CFS. The following comes from the CDC website
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The following summary is the procedure recommended by a panel
of CFS experts for clinically evaluating and classifying chronic fatigue. It is designed to help you better understand
the process that your physician used (or will use) to reach (or exclude) a diagnosis of chronic fatigue syndrome.
Step 1: Your doctor will obtain a detailed medical history from you by asking a series
of questions. This will be followed by a complete examination.
Step 2: Your doctor will conduct a mental status examination. Usually, this will entail
just a short discussion in the office or a brief oral test.
Step 3: A standard series of laboratory tests will be performed on blood and urine specimens
to help identify alternative causes of fatigue.
Step 4: If your initial test results suggest an alternative explanation for your fatigue,
additional laboratory testing may be required to confirm a diagnosis. If no cause for chronic fatigue is identified
at this point, your doctor will proceed to the next step.
Step 5: A patient will be classified as having CFS if he or she meets the following two
criteria:
(1) Unexplained fatigue that is not due to ongoing exertion, is not relieved by rest,
and results in a substantial reduction in previous levels of activity, and...
(2) if 4 or more of the following symptoms are concurrently present for 6 months or more:
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- impaired memory or concentration
- sore throat
- tender cervical or axillary lymph nodes
- muscle pain
- multi-joint pain
- new headaches
- unrefreshing sleep
- post-exertional malaise
The following was taken from the CDC website as conditions
that exclude the
diagnosis of CFS:
- Any active medical condition that may explain the presence of chronic fatigue, such as
untreated hypothyroidism, sleep apnea and narcolepsy, and iatrogenic conditions such as side effects of medication.
- Some diagnosable illnesses may relapse or may not have completely resolved during treatment.
If the persistence of such a condition could explain the presence of chronic fatigue, and if it cannot be clearly
established that the original condition has completely resolved with treatment, then such patients should not be
classified as having CFS. Examples of illnesses that can present such a picture include some types of malignancies
and chronic cases of hepatitis B or C virus infection.
- Any past or current diagnosis of a major depressive disorder with psychotic or melancholic
features; bipolar affective disorders; schizophrenia of any subtype; delusional disorders of any subtype; dementias
of any subtype; anorexia nervosa; or bulemia nervosa.
- Alcohol or other substance abuse, occurring within 2 years of the onset of chronic fatigue
and any time afterwards.
- Severe obesity as defined by a body mass index [body mass index = weight in kilograms
÷ (height in meters)2] equal
to or greater than 45. [Note: body mass index values vary considerably among different age groups and populations.
No "normal" or "average" range of values can be suggested in a fashion that is meaningful.
The range of 45 or greater was selected because it clearly falls within the range of severe obesity.]
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What tests should my doctor take?
The following was also taken from the CDC website:
The following areas should be included in the clinical evaluation.
1. A thorough history that covers medical and psychosocial circumstances at the onset
of fatigue; depression or other psychiatric disorders; episodes of medically unexplained symptoms; alcohol or other
substance abuse; and current use of prescription and over-the-counter medications and food supplements.
2. A mental status examination to identify abnormalities in mood, intellectual function,
memory, and personality. Particular attention should be directed toward current symptoms of depressive or anxiety,
self-destructive thoughts, and observable signs such as psychomotor retardation. Evidence of a psychiatric or neurologic
disorder requires that an appropriate psychiatric, psychological, or neurologic evaluation be done.
3. A thorough physical examination.
4. A minimum battery of laboratory screening tests including complete blood count with
leukocyte differential; erythrocyte sedimentation rate; serum levels of alanine aminotransferase, total protein,
albumin, globulin, alkaline phosphatase, calcium, phosphorus, glucose, blood urea nitrogen, electrolytes, and creatinine;
determination of thyroid-stimulating hormone; and urinalysis.
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What does PWC and PWCs stand for?
PWC stands for "People with CFS", "Person
with CFS" or "Patient with CFS". PWCs is simply the plural for PWC. These abbreviations
are commonly used when referring to people with Chronic Fatigue Syndrome simply because it's easier than writing
it out completely each time. Personally I'm glad someone finally came up with an abbreviation. It's
a bit easier on the eyes and the brain (especially if you have CFS) to read the abbreviation if the term is to
be used repeatedly in text.
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What tests did you have done before being diagnosed with
CFS?
I was given a complete psychological evaluation by
two doctors of my choosing as well as a doctor I was sent to in order to qualify for SSD. Two out of the
three doctors I saw ruled out all possible psychological problems. It may be interesting to note that the
third doctor (one of the doctors I went to on my own) was convinced I was a Gulf War vet and believed I had a severe
case of Post Traumatic Stress Disorder due to participation in this war. She was very surprised when I told
her I'd never seen any "action" let alone been in the military. She was so convinced of her diagnosis
that she implied I lied to her when I said I had no military background or experiences. I tell you this to
make a point about how easy it is for a doctor to make a misdiagnosis even when the facts are staring them in the
face.
I was also tested and treated for Lyme Disease. I was treated for Lyme Disease "just
in case". Lyme Disease is also very hard to diagnose. Left untreated Lyme Disease can permanently
damage your nervous system. My doctor felt it was safer to treat me for Lyme Disease than to ignore the possibility.
After my treatment for Lyme Disease (massive doses of antibiotics for about six months) my symptoms worsened, leading
my doctor to the conclusion that I did not have Lyme Disease.
I had an MIR taken of my brain. My neurologist was looking for any abnormalities.
A small "spot" was found on my brain. I was told this is often the case with CFS but that this
also often occurs in patients with Multiple Sclerosis (MS). His conclusion was either possible CFS or MS.
He would not diagnose either.
I took part in a study involving the tilt-table test. I honestly could not tell
you the value of this test. It wasn't adequately explained to me and at this time I haven't been able to
gather enough information about it. I was told the results were inconclusive.
I had my heart monitored for 24+ hours and was given a sonogram of the heart. I
was told I had a slight murmur. I was told this had no relation to my symptoms.
I had several complete physicals as well as a complete analysis of my blood and urine
done several times by several different doctors. Diabetes, AIDs, hypothyroidism, hepatitis B and C, rheumatoid
arthritis, and all other conditions that cause fatigue were ruled out.
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What do you mean by "got better" and "recovery"?
Are you cured?
There is no cure. When I say I "got better"
I mean just that - I got better.
I feel better than I did before, I'm able to go to work, be productive, exercise, and socialize. I consider
this a recovery from CFS because I have recovered my health and independence, if only temporarily. I call
myself a recovering PWC because I believe it is possible to have a relapse at any time. I agree with the
CDC when they say there is no cure but I do believe it is possible to feel better, good enough to get on with your
life and be happy again. Because I believe a recovering PWC can have a relapse at any time I feel it is important
that anyone who has had CFS (and is in recovery) should be very health conscious.
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Did you ever have a relapse?
Yes, several times. I've found there are many
things that can trigger a relapse. For me it seems to happen whenever I go a bit overboard and push myself
too hard. I may try to exercise a bit too much or increase my exercise too soon, get too little sleep, drink
too much alcohol, eat unhealthy foods for a length of time or go back to smoking. The relapse may last a few days
or a few weeks. I've found the only way to recover from a relapse is to do the same things I did to get better
in the first place, including getting plenty of rest and nutritional supplements. I'm very careful now to
listen to the signals my body is sending me. I've learned to know what will trigger a relapse and have become
very health conscious because of it.
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What are your qualifications to give advice on CFS?
I have no qualifications except my own experience.
It is my hope that in sharing my experience with other PWCs it will somehow help them. I do not offer advice,
just my opinion and my experiences.
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What does SSD stand for?
Social Security Disability.
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Did you try to get SSD on your own (before getting a lawyer)?
Yes, and I wouldn't wish that experience on any disabled
person. The government makes it very difficult to apply. One "wrong" answer and you loose.
I found it to be emotionally and physically taxing. The intellectual challenge is also too much for a PWC
to handle on their own given our reduced ability to read, write and comprehend as well as we normally would.
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What law firm did you use to get Disability?
Binder & Binder. I was quite pleased with
the results.
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