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RSD: Living With A New Kind Of Pain

Sara was the busy mother of two young daughters.  Besides working full time for her husband’s company, she was active in her girl’s sports and scouting activities.  One afternoon Sara dropped a box of books on her foot and fractured it.  Instead of getting better, the foot got worse.  It turned blue, was swollen, and she experienced the worst pain of her life.  She visited three physicians, one of whom suggested that Sara was exaggerating her pain for attention.  Although she tried to keep her former routine, Sara could not do it.

Finally, she was diagnosed with CRPS.  Her physician prescribed medication to alleviate the pain, began a series of nerve blocks and had Sara work with a physical therapist to help her regain function in her foot.  Sara still suffers pain and has had to curtail some of her activities, however with appropriate treatment, she is able to work and take part in her family activities.

What is RSD or CRPS?

RSD also known as Reflex Sympathetic Dystrophy is a chronic neurological syndrome characterized by severe persistent burning pain, abnormal skin color changes, skin temperature, excessive sweating, tissue swelling, limited range of motion and extreme sensitivity to touch.  Although it can be classified as a rare disorder a newer epidemiological study reported that there may be up to 50,000 new cases annually in the United States.  It is a malfunction of part of the nervous system.  Nerves misfire, sending constant pain signals to the brain.  There are two types of CRPS:  Type I (RSD) and Type II (Causalgia)  which has definite nerve damage.  CRPS is two to three times more frequent in females than males.  There has been a recent increase in the number of cases diagnosed among adolescents and children.  It has not been unusual for medical professionals to suggest that people with CRPS exaggerate their pain, however research has proven that CRPS is a very real condition.  More than 140 years ago Dr. Silas Weir Mitchell, a Union Army surgeon first described the excruciating pain that we know as CRPS.  Physicians do not know why it develops or what causes it, however it usually occurs after a traumatic injury, surgery, sprain, fracture or period of immobilization.

Diagnosis

Early diagnosis and appropriate treatment offer the highest probability of remission of CRPS.  A physician must make a clinical diagnosis of CRPS using a patient history, a thorough examination, and the results of numerous tests.  There is no single test for CRPS.

Treatment

Treatment may include a wide variety of medication, nerve blocks, physical therapy and psychological support for the people with CRPS and their friends and families.  Occasionally surgical procedures may be used to control pain.  Treatment is individualized-each person should have a treatment plan that includes pain control, psychological support, and physical and occupational therapy.

If you think you have CRPS?

If you have an injury that isn’t healing as it should, or if the pain or swelling is more severe than you expect for such an injury:

•    Ask your physician if this could be CRPS
•    Make sure that you are getting treatment for the pain
•    Try to keep the affected area moving
•    Get another medical opinion if you feel that your physician isn’t taking  your complaints seriously

Is there a cure?

No, but there is hope!  Advances in research on pain and CRPS have helped find some new and effective treatments.  More funds and research are needed to understand the causes of CRPS, find effective treatments for those living with CRPS, and prevent the development of CRPS after injury and tissue damage.

Do I Have CRPS?

•    I may look “healthy” but I often suffer unbearable, unrelenting, and burning nerve pain.
•    My skin may swell, sweat, change colors, change temperature, or hurt to the slightest touch.
•    CRPS can spread.
•    Often it is difficult for me to sleep so I may have trouble with attention and concentration.
•    I am frequently following a prescribed medication regime that usually involves powerful drugs with many side effects that may affect my alertness or attentiveness.
•    It is often hard to move easily or keep my body steady.
•    Chronic Pain, like that caused by CRPS, often leads to depression because we undergo significant and often negative, lifestyle changes.
•    I have good and bad days; even hours.  Stress increases my pain.
•    Please believe that my pain is real even though it is invisible and may not be readily apparent in my demeanor or activities.
•    Sometimes it hurts to be touched anywhere so please ask before you touch me.
•    It is okay to ask me about CRPS,  Better yet visit www.rsds.org and learn all you can.

Reflex Sympathetic Dystrophy Association of America

•    Promotes public and professional awareness of CRPS
•    Educates those afflicted with the syndrome, their families, friends, insurance companies,  healthcare providers, and others.
•    Encourages those with CRPS to offer emotional support to others through affiliated support groups in your state.
•    Supports research and has funded $1,243,371 in fellowships and research grants since 1992

For more information on CRPS, joining RSDSA, making a donation, please contact our office or visit our website.
RSDSA
info@rsds.org
www.rsds.org
Toll-free: (877) 662-7737

Provided by the Reflex Sympathetic Dystrophy Syndrome Association of America (RSDSA)