SYSTEMIC LUPUS ERYTHMETOSUS:
DANCING WITH THE WOLF, PART I
by Kathie Turner, LMFT
Lupus, or Systemic Lupus Erythmetosus (SLE) is an autoimmune disease
which causes inflammation in various parts of the body. It is not known what
causes Lupus, except that it appears to have a genetic component. The name
was derived from a symptom; the malar rash, often called "butterfly rash"
across the face of many SLE patients that resembles the markings on the face
of a wolf. Major organ involvement, including kidneys, gastrointestinal
system, lungs, heart, brain and even the CNS can be effected, hence the term
"systemic." Pleurisy, costochondritis (chest wall inflammation and
pain), migraines, degenerative joint disease and "brain fog" are common.
Lupus arthritis, Raynauds, Sjogrens Syndromes, Multiple Sclerosis and
Rheumatoid arthritis and Fibromyalgia (FMS) are just some of the
disorders/syndromes that often accompany the lupus diagnosis.
With lupus the immune system loses its ability to tell the difference
between foreign substances and its own healthy cells and tissues. The
immune system makes antibodies directed against the "self," attacking as if
they were foreign invaders such as a virus or bacteria. This causes
and injury to tissues, and subsequently varying degrees of chronic pain.
Symptoms can range from relatively mild with frequent remissions, to quite
severe and life threatening. Some patients can continue to work, while
too debilitated by pain, fatigue and frequent hospitalizations due to
shifting systemic illnesses.
There is no cure for Lupus at present, and although treatment is
available, advances in treatment over the last thirty years has been
This despite the fact that more people have Lupus than AIDS, Cerebral Palsy,
Multiple sclerosis, sickle-cell anemia and cystic fibrosis combined!
Paradoxically, the general population is less likely to be familiar
with Lupus than AIDS or any of the other illnesses mentioned above.
I had a career as a therapist, licensed as an LMFT in Oklahoma. I
raised a delightful daughter as a single parent. But I was frequently ill,
vague flu-like symptoms. In 1990 I began to experience joint pain that was
diagnosed initially as arthritis. I developed carpel tunnel symptoms
history of repetitive movement tasks. Finally, I was diagnosed with FMS.
By 1994 my symptoms had subsided. I moved to Santa Monica had taken
time off from my practice as a therapist. Then in Jan 1996 I had what
the first of two car accidents that caused enough trauma to my system to
precipitate the onset of my worst lupus flare in late 1996.
It is only in retrospect that my current Rheumatologist and I recognize
that I had "flared" previously. In addition to the flare from 1990-1994, I
met the profile from an early age, plagued by allergies as a child,
illnesses as an adult, frequent yeast and urinary infections,
migraines, bouts of pleurisy, fluctuating temperatures- elevated or low --
generalized pain and fatigue.
I have been diagnosed with not only Lupus, but also severe FMS,
Raynauds Syndrome, Sjogrens Syndrome, Lupus inflammation in my brain, or
CNS Lupus and degenerative joint disease.
The medications used to treat lupus can cause yet more problems. There
is yet to be discovered a drug or treatment that does not bring with it the
risk of further undesirable symptoms.
The Lupus Book: A guide for patients and their families
Dr. Daniel Wallace Chief, Rheumatology, Cedar Sinai Medical Center
Los Angeles, CA
Kathie Turner, MA, LMFT was a psychotherapist
working in both youth service agencies and in Private Practice until March 1995.
Since being diagnosed with Lupus and Fibromyalgia, she has participated in support
groups through online mailing lists and conducted her own research on SLE and
FMS. Currently she is the owner of Health Care Provider Services, a home
business providing administrative and marketing support services to health care
professionals; primarily psychotherapists.