Complex Regional Pain Syndrome
In recent years, medical professionals have greatly expanded their understanding
of how to treat pain and how pain affects their patients. One condition that
has been frustrating and challenging for doctors and their patients is complex
regional pain syndrome (CRPS). It's a nerve disorder, also sometimes known as
reflex sympathetic dystrophy syndrome, that causes pain that typically originates
from an injury but that becomes much more severe than expected. And the pain
becomes worse over time, not better.
CRPS develops from a fairly simple injury, such as a broken bone. It causes
nerves to misfire and send messages of intense pain to the brain. Doctors believe
that CRPS develops in about 1 out of every 1,200 traumatic injuries.
Diagnosing CRPS is difficult because it doesn't show up on an MRI or CT scan
or other imaging tests. There's no hard evidence that proves the condition is
there. Your doctor confirms the diagnosis by doing a physical exam and by determining
whether your pain symptoms are compatible with the symptoms of the disease.
Primary characteristics of CRPS
The hallmark of CRPS is pain. But while the pain is severe and intense in pretty
much all cases, it's not the same for everybody. For some people, the pain stays
in one general area. For other people, the pain radiates out through the entire
body, making even a light touch excruciating. Here are the primary symptoms:Severe, burning pain
Swelling and sweating
Temperature changes of the skin in the affected area
Sensitivity to touch
Muscle atrophy (loss of muscle tone)
Recently, the New York Times ran a story about a woman named Cynthia Toussaint,
who developed CRPS when she was a senior in college in the 80s. Toussaint was
a ballet major. She lifted her leg to the barre for a stretching exercise and
felt a "sudden pop" in her hamstring muscle. The athletics trainer
at her college diagnosed a pulled muscle, which seems simple enough. But Toussaint
became bedridden. The pain moved to her other leg. It even went to her vocal
chords at one point. She was unable to speak temporarily. It took 13 ½
years for her to finally receive the diagnosis of CRPS. In all that time, doctors
told her that her condition was "in her head."
Toussaint is still in a wheelchair today. She's 45 years old. She has regained
her ability to speak, and she is now able to stand. She believes that if she
had received her diagnosis earlier, the disease would have been less severe
CRPS has a profound effect on a patient's quality of life. People who are affected
by it usually have to quit their jobs or stop going to school. They often are
unable to ride in cars, because the bumpiness is too painful for them to tolerate.
Patients with CRPS often go into a deep depression. They feel as though their
lives are on hold.
Treatment for CRPS
Treatment for CRPS typically begins on a trial and error basis. The biggest
key is to begin treatment as early as possible, because even though not all
treatments will work, and those that do may stop working eventually, early treatment
is the best bet for stopping CRPS from progressing. In some cases, the symptoms
even do go away.
Many times, doctors begin treatment using simple pain relief medications. There
are also medicines that block specific nerves, and these may help, although
only for a time. Steroids may also help. In some cases, medications for depression
or seizures can help with chronic pain.
In another kind of treatment, doctors implant an electrical stimulator near
the base of the spinal chord or near the injured area. The stimulator sends
low-level electrical signals that can block pain signals from reaching the brain.
Additionally, CRPS researchers are excited about a new treatment that uses
ketamine, which is an anesthetic. A study in Germany administered ketamine to
30 patients. The dosage of ketamine was enough to put the patients into a coma.
After five days, doctors tapered off the dosage. So far, 9 of the patients have
had a complete remission of the disease. Of the remaining 21 patients, seven
were pain-free for six or seven months, when the pain slowly began to return.
These patients are now getting smaller doses of ketamine. The researchers hope
that this will "boost the effect" of the earlier dose.
If you have been experiencing severe, burning pain
If you've been having pain that sounds like it could be CRPS, be sure to talk
with your doctor right away. You may also want to visit several helpful Web
sites, including For Grace (http://www.forgrace.org/), which was started by
Cynthia Toussaint and her partner and caregiver, and AmericanRSDHope (http://www.rsdhope.org/)
which serves as support to patients and families.
If you have chronic pain, you know best how severe it is, how it affects your
emotions and how it affects your day-to-day life. Talking with your doctor about
these issues is a good first step in learning to manage your pain. Common conditions
that cause severe, chronic pain include arthritis, headache, fibromyalgia and
There are specialists who work in the field of pain management. If you feel
as though one of these specialists could be of help to you, don't hesitate
to seek one out. One way to start would be to ask your own doctor for a referral.
If for some reason that doesn't work out, you could read the American Pain
Foundation's tips for finding a pain physician. http://www.painconnection.org/MyPain/TipsForFindingAPainPhysician.asp
Source: American Academy of Family Physicians; International Research Foundation for RSD/CRPS; Neurology Today, February 2006