Chronic Fatigue Syndrome 
Author Message
 Chronic Fatigue Syndrome

 >My wife has had a problem in the last ten years that has been getting
 >worse in the last one to one and a half years.  The symptoms are
 >similiar to what I hear is chronic fatigue syndrome, lupus, or
 >epstein barr virus.  The symptoms are: achinn in the joint- hips,
 >knees, sholder, in the last year a sore in the nose that doesn't
 >heal quickly, low grade fever, insomnia at night, puffiness in the
 >face.  These symptoms do not appear all together at one time.  But
 >usually, when she is feeling really lousy, you can see the puffiness
 >in her face, and she is experiencing a low fever (99-100.5).  In the
 >last month, she has also had a rash on the back of her arm, down her
 >back and buttocks.   This rash lasts about four days.  It seems she also
 >has a sensitivity to sunlight.  She has seen physicians about this during
 >the last ten years.  Responses have been "its in your mind", "its
 >arthritis", "we don't know".  She has had {*filter*} tests for lupus, but
 >physicians says tests do not indicate that.  Also, want to say, these
 >symptoms occur after alot of physical activity or stress.  After a
 >"vacation" of sightseeing she feels lousy.  If she stays in low activity
 >levels, she feels well enough.

        Has your wife been checked for the presence of antibodies that might
indicate Lyme's disease?  It's sort of a long shot, but if she's been putting
up with this for 10 years, what could it hurt.  Her local physician should
be able to arrange for this without too much difficulty.  
        Keep in mind that the currently available tests can be tricky to  
interpret sometimes.

Uucp: ...{gatech,ames,rutgers}!ncar!noao!asuvax!stjhmc!116!300.1!Steve.Head

Mon, 19 Apr 1993 18:30:00 GMT
 Chronic Fatigue Syndrome


> Bob Kinne questions:

> A layman's question (serious): what is the difference, if any, between
> CFS and what has for several years been called 'burnout?'  The classical

The CDC definition lists *many* physical criteria, both major and minor.
For example, a burnout case won't have intermittent dyslexia (one of my
wife's symptoms)

Burnout cases are also fairly easy to cure- just treat for chronic
fatigue. Nutrition, rest etc....

A large number of the so-called cases of CFS are really misdiagnoses
without reference to the CDC definition. For example, a chiropractor
here in town has cured many hundreds of cases of CFS - he says. But
I'm suspicious that most of these cases are not CDC-defined. In a town
of less than 100,000, we must be having a damned plague if this guy
is right.

The misdiagnosis situation doesn't help with the insurance companies
either. My wife's psychiatrist (MD before psych.) has written
innumerable descriptions to our health insurance company of her
physical symptoms. When the Internist, with whom the shrink works,
writes ...." there may be some depression...." in the letter to
the health insurance people  the insurance company then says, "Aha!
Mental Illness! Benefits Denied!"  And the Insurance Company/Doctor
confidentiality agreement makes it very difficult to dispute.

Part of the frustration with CFS is with the body suffering it. The
other part, sometimes the major part, is with the medical community,
the insurance community, and often your own relatives.

Ron Miller
Reporting from behind the wire at Camp CFS

Mon, 19 Apr 1993 15:51:00 GMT
 Chronic Fatigue Syndrome
Background:  I had CFS (then called CEBV) for several years, and thank
God it has been in remission for the last few.

As far as I have been able to tell, there is a real physical component,
as well as a mental/emotional component.  Treating the latter (with
psychotherapy, antidepressants, positive thinking, or Louise Hay books)
can make the situation better but not necessarily cure it.  There is a
complex interaction between our mental/emotional state and our immune
systems - being depressed is itself immunosuppressive, so treating
depression is important for any immune system problem.  But regardless
of what the physical component is, the way we deal with it (or don't)
can add a great deal of unnecessary emotional pain and anguish.  Having
the love and support of those close to you, having at least one person
you respect reassure you that the problem is real and not of your own
making, and that it is not evidence of a character flaw, helps peel off
the extra baggage (the self-flagellation and such) so you can
concentrate all of your strength and resources on dealing with the
problem at hand.

I chanced upon a book I'd like to recommend in this context, called
"The Twelve Step Response to Chronic Illness and Disability", subtitled
"Recovering Joy In Life"; author is Martha Cleveland, published 1988 by
the Hazelden Foundation.  Quite simply, it is an application of the AA
12-step program to dealing with any chronic illness or disability,
concentrating on healing the emotional pain so that, regardless of our
physical condition or limitations, we can experience joy and serenity,
and use the "problem" as an opportunity for personal growth.  I have
often used the Serenity Prayer (God grant me the serenity to accept what
I cannot change, the courage to change what I can, and the wisdom to
know the difference) to help me deal with chronic physical illness; this
book expands upon that.  In addition to everything you are doing
medically, physically, mentally, and emotionally, I recommend this book
to address the spiritual side as well.

Andrea Frankel, Hewlett-Packard (San Diego Division) (619) 592-4664
        "wake now!  Discover that you are the song that the morning brings..."
UUCP     : {hplabs|nosc|hpfcla|ucsd}!hp-sdd!andrea

USnail   : 16399 W. Bernardo Drive, San Diego CA 92127-1899 USA

Mon, 19 Apr 1993 22:37:00 GMT
 [ 3 post ] 

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