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RSD…THE
MISUNDERSTOOD PAIN DISEASE
by:
Fran
Worrall Contributing
Editor
Keith
Orsini, of South Portland, ME, was hit by a baseball when he was
14 years old. The blow shattered his nose and cheekbone. The
burning pain was immediate, he says, particularly in his eyes.
“It was like hot burning coals.” His vision soon worsened,
and light began to bother him. More ominous, however, were the
variety of other seemingly unrelated physical ailments that began
to plague him, such as memory loss, skin mottling and cold
extremities, which continued throughout his teens and early 20s.
He went to a variety of doctors, but no one could figure out what
was wrong.
Then,
at age 25, Orsini broke his back and underwent spinal fusion
surgery. Soon thereafter, his symptoms worsened, and the pain
progressed to more parts of his body. Still, physicians were
baffled. “I went to specialists and clinics all over the
country, only to be told by more than one doctor, ‘It’s all
in your head,’” he says.
Louise
Plaster, of Greenville, SC, was 35 years old when she hit her
knee on a metal bracket at work. Almost immediately, her leg
became bruised and swollen. Unlike other relatively minor
injuries, however, this one just didn’t heal.
She
went to one doctor. Then to another. And another. No one knew
what was wrong. In the meantime, her symptoms worsened. She
battled fatigue, swelling, stiffness and chronic pain. Her skin
became mottled and sensitive to even the slightest touch. Until
her injury, Plaster had worked 10-to-12-hour days. She was
physically fit, too, walking three miles a day. Now, she could
hardly get out of bed.
Linda
Calhoun, of Philadelphia, had a career she enjoyed, often working
overtime, and she exercised regularly for years. All that came to
an abrupt end after she hit her knee on a trashcan at age 41. The
following day, she says, she couldn’t walk. “It felt like
nails sticking in me.” Her legs turned purple and were ice cold
to the touch. Yet, at the same time, she experienced burning
sensations, especially at night. Her skin became so sensitive,
“even the bed sheets felt like sandpaper.”
She,
too, made the rounds of doctors, seeing a variety of specialists
– more than a dozen in all – before being accurately
diagnosed. One doctor suggested fibromyalgia; another, multiple
sclerosis. She was told by a few of them, as were Orsini and
Plaster, that the problem was psychological rather than physical.
But, it wasn’t.
Diagnosis is difficult
Eventually,
Orsini, Plaster and Calhoun were diagnosed with Reflex
Sympathetic Dystrophy, or RSD, a chronic and incurable
neurological disorder in which the autonomic nervous system –
the system that transfers signals from the central nervous system
to various organs throughout the body – malfunctions, causing
nerves to misfire and send constant pain signals to the brain.
RSD typically develops in response to physical trauma – a fall,
fracture, infection, surgery or repetitive motion injury like
carpal tunnel syndrome. Strangely, it often develops after a
seemingly minor injury such as a stubbed toe or sprained ankle.
Although there are many symptoms, pain disproportionate to the
precipitating injury is common in all cases. In some patients,
the condition is mild; in others it is severe and debilitating.
In a few cases, no precipitating cause can be found.
Although
it’s not known exactly how many people have RSD worldwide, it
is estimated that as many as 8 million suffer from the disease in
the United States alone, and that it complicates as many as 5% of
all injuries. Typical age of onset is the mid-30s, yet children
and the elderly also develop the disorder. It affects women more
often than men.
What
causes RSD? No one knows for sure, although current research
suggests that an excessive immune response, possibly due to
latent infection, is the culprit, at least in some cases, says
Dr. Robert G. Schwartz, a Greenville, SC, physical medicine and
rehabilitation specialist and a pioneer in RSD research and
treatment. Other predisposing factors may include any condition
that inhibits oxygen flow, such as smoking, diabetes or
circulatory disease. “Whatever the cause, it is definitely not
due to a psychological disorder or symptom magnification.”
The
most common symptom of RSD is chronic pain, which patients
frequently describe as burning or stinging. Patients also suffer
from extreme skin sensitivity, so that even clothing is
unbearable. Other symptoms include swelling, profuse sweating,
nail changes and color and temperature abnormalities at the
injury site. Patients may also experience muscle spasms, tremors,
weakness, fatigue, skin rashes, frequent infections, fever,
headaches and insomnia. In some people, the disease is confined
to the affected area, but in as many as 70 percent of patients it
spreads to adjacent parts of the body or crosses over to affect
the same area of the opposite limb. RSD can also spread to
unrelated sites, especially following another injury.
Diagnosis
is difficult, says Schwartz, because many symptoms of RSD are
similar to those of other more common illnesses such as chronic
pain, rheumatic disease, multiple sclerosis and fibromyalgia.
What’s more, he notes, many physicians aren’t familiar with
the disorder, which leads to a delay in proper diagnosis and
treatment.
Prompt treatment critical
Yet
prompt treatment is critical – within the first three months
– before the course of the disease becomes irreversible, says
Schwartz. “Early intervention can mean the difference between
putting the disease in remission and coping with a lifetime of
pain and disability.”
Sadly,
by the time Orsini’s problem was diagnosed, he had been living
with RSD for almost 20 years. He now experiences constant pain
throughout his body. In fact, Orsini is one of the few RSD
sufferers whose disease is systemic. It has lowered his immune
system, making him more susceptible to colds and the flu, and he
is afflicted with a variety of physical and emotional symptoms
ranging from decreased mobility to memory loss.
Plaster
and Calhoun are also victims of delayed diagnoses. They, too,
experience symptoms ranging from severe pain and impaired
movement to tissue damage and memory problems.
Schwartz’s
advice is simple: If you experience pain, swelling or bruising
disproportionate to an injury, don’t wait for it to go away.
“Seek help from a doctor who understands pain diseases.”
Physiatrists, physicians who specialize in physical medicine and
rehabilitation, focus on treating patients with acute and chronic
pain.
When
you visit your doctor, be prepared, he advises. “Bring a list
of symptoms and questions with you.” It may help to keep a
journal of symptoms – what bothers you and when. Also, when
seeing a new doctor, bring a copy of your medical history, test
results and x-rays as well as a list of injuries and surgeries.
“RSD is like a puzzle. Your doctor needs to know all the
factors that may have contributed to it.”
It
may help to bring a friend or family member to the appointment,
says Schwartz. “If you’re in a lot of pain, you won’t
process everything the doctor tells you.” Another idea: Take
notes or bring a tape recorder.
Although
some doctors employ a variety of medical tests to identify RSD, a
diagnosis often can be made based on clinical observation alone,
says Schwartz. Primary clues are pain disproportionate to the
injury and nerve dysfunction in the affected area. Also, he
notes, neuropathic pain is different from everyday aches and
pains. “It has a tingling or burning quality and, often, sudden
jolts of shooting pain.” Stimulation with mild cold or light
touch also may cause discomfort.
What’s
more, he says, a physician familiar with RSD will observe the
patient’s physical symptoms such as mottled skin, swelling,
movement disorders and changes in the hair and nails.
Tips for coping with RSD
Although
there is no cure for RSD, there are many ways to manage its
symptoms. Typical treatment incorporates a variety of therapies
such as electrical nerve stimulation, anesthetic blocks,
injection therapy and physical therapy. Drug therapy often
includes anti-inflammatory drugs, muscle relaxants and
antidepressants.
Some
RSD patients find relief in alternative medicine such as
acupuncture, or in relaxation therapy and hypnosis. Psychological
counseling can also help patients cope with the frustration and
depression that often accompany the disease.
Following
are more strategies for managing RSD:
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Be
a partner with your physician.
“Visit
your doctor regularly. The doctor-patient relationship is
critical, because the disease is so individualized,” says
Plaster.
-
Eat
properly. A healthy
diet is especially beneficial to people with RSD, notes
Schwartz. Avoid coffee, processed foods, sugar and fried
foods. Also, leave off foods containing nitrites, such as
bacon, sausage and hot dogs. Eat lots of fresh fruits and
vegetables, fish and poultry, and drink six to eight glasses
of water a day. Some RSD patients also find nutritional
supplements beneficial.
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Become
a volunteer. Doing
something for other people helps you stop focusing on your own
problems, say Plaster and Calhoun. They practice what they
preach: Plaster is the director of the South Carolina RSD
Association, and Calhoun runs an Internet support group called
RSDRebels.
-
Keep
moving. Stretching and
walking on a treadmill are particularly good exercises, says
Schwartz.
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Take
a time-out when you need it.
“If you need a nap, take one,” advises Calhoun. “Don’t
push yourself too hard.”
-
Don’t
face it alone. Check
out local support groups and the Internet for information.
“You are not alone, and you are not crazy,”
says Orsini, who founded American RSDHope Group, a non-profit
organization for RSD sufferers and their families.
Additional resources
For
more information, contact the following organizations:
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American
Academy of Physical Medicine & Rehabilitation, One IBM
Plaza, Suite 2500, Chicago, IL 60611; 312/464-9700; www.aapmr.org. National medical society representing more than
6,500 physiatrists, physicians who specialize in restoring
function to patients suffering from acute or chronic pain,
musculoskeletal problems and neurological disorders.
-
American
Chronic Pain Association, P.O. Box 850, Rocklin, CA,
95677; 800/533-3231; www.theacpa.org.
Offers support and information for people suffering with
chronic pain.
-
American
RSDHope Group, P.O. Box 875, Harrison, ME 04040;
207/583-4589; www.rsdhope.org.
Offers discussion groups, educational information and support
to RSD sufferers and their families.
-
National
Institute of Neurological Disorders and Stroke, P.O. Box
5801, Bethesda, MD 20824; 800/352-9424; www.ninds.nih.gov.
A division of the National Institutes of Health that conducts
and supports research on disorders affecting the nervous
system.
-
Reflex
Sympathetic Dystrophy Syndrome Association of America,
P.O. Box 502, Milford, CT
06460; 877/662-7737; www.rsds.org.
Provides education and support as well as contact information
for RSD support groups in the United States, Canada, Europe
and Australia.
Fran Worrall is a
freelance writer in Atlanta who specializes in health and
wellness. For many years, she worked in the Atlanta office of
Medical Economics Company, where she launched the company's
dental publishing division. Since becoming a freelance writer,
she has written for numerous healthcare magazines and newsletters
including Boston University Clinical Dental Briefings, Cosmetic
Dentistry for GPs, Dental Economics, Dental Practice Success,
Medical Office Manager and Physician's Marketing. She has also
co-written a consumer book on cosmetic dentistry.
Editor's note: We
are delighted to share this new article by
Fran Worrall, and look forward to more of her
informative,
thoroughly
researched articles in months to come.
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