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Searching For Answers from page A29
such as a broken bone. The signs and symptoms of the
disorder vary, but the common feature is pain that is per-
sistent and intense. About 80 percent of the cases occur in
"There are many theories, but we don't really know why
it happens," said Dr. Gary Chodoroff, a Bingham Farms
physician specializing in physical medicine and rehabili-
tation as well as electrodiagnostic medicine. "It's as if the
sympathetic nervous system goes on a rampage:'
Although RSD/CRPS usually follows a fracture or other
similar type of injury, it can also be caused by something
as seemingly minor as a mosquito bite or vaccination.
Sometimes, it appears spontaneously without any identi-
fiable cause, although those kinds of occurrences are far
According to Chodoroff, it's possible for a patient to make
a complete recovery, but the prognosis is better when the
disorder is diagnosed and treated in its early stages.
Various treatment methods include physical therapy,
nerve blocks, exercises to increase range of motion, mas-
sage therapy and medications to help reduce pain and
"The most effective treatment is re-mobilization," said
Dr. Maury Ellenberg of Rehabilitative Physicians in Novi.
"There are programs that encourage motion of the affect-
ed part [of the body] that can have good outcomes if the
condition is caught early enough."
Patients often see several doctors before getting a
definitive diagnosis because RSD/CRPS is hard to identi fy.
"There are no tests for this condition; the diagnosis is a
clinical one," Ellenberg said.
The most common indicator is pain that is out of pro-
portion to the original injury, or conditions that don't heal
within the normal time frame. Other symptoms include
swelling, changes in the color and texture of the skin, loss
of muscle tone and limited mobility.
Once Lauren learned she had RSD/CRPS, she used the
Internet to find information and support. She joined sev-
eral online support groups and started communicating
with other teens and adults with the condition. She found
it gratifying to provide encouragement to those she met
online and decided to make such encouragement her bat
"It helped me realize I wasn't the only one; that other
people were experiencing the same thing," said Lauren.
Since last spring, Lauren has lost some of the ground
she gained during her inpatient stay at Children's
Hospital. The condition has affected many aspects of
Lauren's life. She cannot ride the bus to school because
the vibrations cause too much discomfort. She no longer
has an appetite for many of the foods she used to enjoy.
Falling and staying asleep have become difficult.
When she became a bat mitzvah at Temple Israel in
West Bloomfield last fall, she found it hard to stand up
during the service, and she was unable to join her family
(her mother, Linda, also lives in West Bloomfield) when
they carried the Torah around the sanctuary. A simple
thing like lifting a gallon of milk out of the refrigerator
has become a Herculean task.
"Sometimes, I get this numbness; it feels like my body
is shutting down, like I'm not really there:' said Lauren,
now 14."I have to sit until it goes away."
"I'm disappointed that her symptoms have reared their
ugly heads again," said Jerry Kunin. "I had hoped she was
July 23 • 2009
on her way to a complete recovery. But she's been a real
trouper. I'm encouraged by her involvement in the online
support groups; it helps take her mind off of her own
According to Dr. Donald Rhodes, director of the
South Texas Innovative Medicine Clinic in Corpus
Christi, RSD/CRPS is caused by a breakdown in the
system that responds to stress, commonly known as
"fight or flight."
The body reacts by releasing norepinephrine, a chemi-
cal that increases blood flow to the heart, causing rapid
heartbeat and a higher pulse rate. The other systems,
such as those that regulate digestion, nerves, bones and
skin, are temporarily compromised. The body is designed
to handle stress that lasts about 20 seconds. When there
is prolonged trauma, as is often the case, problems can
"It's a stone-age physiology in a space-age world,"
He believes that adolescent girls between the ages of
11 and 18 are the hardest to treat. Although RSD/CRPS is
not a psychological disease, it usually has an emotional
impact on those ‘,,ho have it, especially teenagers.
"I'm disappointed that her
symptoms have reared their
ugly heads again," said
Lauren's dad, Jerry Kunin.
"But she's been a real trouper."
"Girls this age are going through hormonal changes
that affect their circulation," said Rhodes, who also has
"They can look and feel fine one moment, but they
don't know how they're going to be five minutes later. It's a
disease that is fueled by frustration:'
"I went to a bat mitzvah party and ended up going
home early because I couldn't really participate," Lauren
said. Then, she left a synagogue picnic in tears because
the pain was so intense.
Lauren expressed some of her feelings about her
condition in her bat miztvah speech. Her Torah portion,
Shoftim, dealt with some rules established for judges in
biblical times to ensure justice and fairness would prevail.
Lauren talked about how she has been unfairly judged by
people who don't understand her disease and think she is
exaggerating her symptoms.
"I'm not as social anymore," she said.
"Sometimes, I'm just not feeling well, and I can't partic-
ipate in many things the other kids are doing. My friend
had a birthday party at the zoo, and I didn't go — it was
too much walking?'
Her father said, "I feel extremely frustrated that
Lauren's youth is being taken away. She doesn't like going
to bar or bat mitzvah parties because she feels like a wall-
Lauren's current treatment regime consists of daily exer-
cises and wearing orthotics for a specified time period
each day. She avoids taking pain medication except for an
occasional dose of Motrin. She says she has less free time
than before because of her exercise regime and the after-
school nap that has become an almost daily necessity.
"Everything just takes more time and energy than it
used to," she said.
Lauren achieved beneficial results from a medical
device called Alpha-Stim, Nvhich incorporates microcur-
rent and cranial electrotherapy stimulation to treat acute
pain as well as the stress, anxiety and insomnia that often
accompany chronic conditions like RSD/CRPS. She expe-
rienced a 40 percent reduction in her pain the first time
she used it.
"After a few days, the pain was not as bad when I did
my exercises or when I did a lot of walking," she said. "It
also helped with my sleeping problems:'
Based on Lauren's experience, Dr. Henry prescribed an
Alpha-Stim unit for Lauren to use at home. She and her
father are optimistic it will help facilitate her recovery.
Lauren also tried a program called YogaMedics, a medi-
cally based yoga program that helps patients with a vari-
ety of conditions reduce pain and increase their mobility,
flexibility and range of motion.
"RSD causes the nerves to become oversensitive," said
Dr. Dan Fink, a local physician who has worked with
patients who have the disorder. "The patient has to over-
come the pain to allow the physical stimulation that is
necessary for healing, and that's where the YogaMedics
program can help:'
Dr. Henry advises patients to educate themselves and
be proactive when they have pain or discomfort that isn't
improving within a few weeks.
"They should ask their doctors to check for RSD," he
said. "A general practitioner may only see the condition
twice a year, so he may not think to look for it."
According to West Bloomfield psychologist and life-
coach Dr. Talia Ziv, it's important for parents of children
and adolescents with painful or disabling conditions to be
supportive without being enabling.
"The condition should be viewed as something sepa-
rate from the child," said Ziv, who works with people that
struggle with a variety of chronic and challenging situa-
tions."Otherwise the child sees himself as a victim. The
disease is only a part of their lives; it's not the totality of
"It's important to focus on the child's strengths and
accomplishments rather than on the disease," she said.
"Parents may need to put extra effort into helping their
children enhance the positive things in their lives:'
She added that helping other people is a good way for
children and teens to avoid self-pity and take the focus
off of their own problems.
"I try to think positively," said Lauren. "To say, `Oh, why
me?' won't accomplish anything. I believe I got this dis-
ease for some reason. When I found out not many people
know about it, I wanted to help raise awareness?'
Lauren's involvement with the online support groups
has helped her feel better about herself and her condition.
She has a file of letters from parents and kids telling her
what an inspiration she has been.
"I've made a lot of new friends," she said. "I've lost a lot,
but I've gained a lot, too:' E