RSD and Chronic Pain

If your physician or other health practitioner gave you a diagnosis of RSD (CRPS-I), we are asking you to participate in a minimal-risk study designed to understand what causes this syndrome. All ages are welcome, and children and young adults are particularly encouraged to participate. This study is being conducted by Richard G. Boles, M.D., a medical researcher at Childrens Hospital Los Angeles and the USC School of Medicine. It is funded by grants from the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) and American RSDHope. Participation is entirely voluntary. This study consists of:
1. Completing an online survey regarding your health (or if the patient is a minor, that of your child). [Paper surveys are available upon request from the RSDSA.]
2. Spitting into a special cup to collect DNA (genetic material).
3. OPTIONAL: Completing a telephone interview regarding your family's health history.
The interview usually takes about one hour.

Research Study

What is RSD/CRPS?
Reflex Sympathetic Dystrophy, also referred to as Complex regional pain syndrome(CRPS) is a chronic pain condition that is believed to be the result of dysfunction in the central or peripheral nervous systems. Typical features include dramatic changes in the color and temperature of the affected limb or body part, accompanied by intense burning pain, skin sensitivity, sweating, and swelling. CRPS I is frequently triggered by tissue injury; the term describes all patients with the above symptoms but with no underlying nerve injury. Patients with CRPS II experience the same symptoms but their cases are clearly associated with a nerve injury.
CRPS can strike at any age. It affects both men and women.

Symptoms of CRPS:

The key symptom of CRPS is continuous, intense pain, which gets worse rather than better over time. CRPS most often affects one of the extremities (arms, legs, hands, or feet) and is also often accompanied by:
-"burning" pain
-increased skin sensitivity
-changes in skin temperature: warmer or cooler compared to the opposite extremity
-changes in skin color: often blotchy, purple, pale, or red
-changes in skin texture: shiny and thin, and sometimes excessively sweaty
-changes in nail and hair growth patterns
-swelling and stiffness in affected joints
-motor disability, with decreased ability to move the affected body part
-Often the pain spreads to include the entire arm or leg, even though the initiating injury might have been only to a finger or toe. Pain can often travel to the opposite extremity.

The symptoms of CRPS vary in severity and length. Some experts believe there are three stages associated with CRPS, marked by progressive changes in the skin, muscles, joints, ligaments, and bones of the affected area, although some

Stage one is thought to last from 1 to 3 months and is characterized by severe, burning pain, along with muscle spasm, joint stiffness, rapid hair growth, and alterations in the blood vessels that cause the skin to change color and temperature.

Stage two lasts from 3 to 6 months and is characterized by intensifying pain, swelling, decreased hair growth, cracked, brittle, grooved, or spotty nails, softened bones, stiff joints, and weak muscle tone.

In stage three the syndrome progresses to the point where changes in the skin and bone are no longer reversible. Pain becomes unyielding and may involve the entire limb or affected area. There may be marked muscle loss (atrophy), severely limited mobility have a Body-Wide case.

Opioid Use in People with Complex Regional Pain Syndrome (CRPS)

Method

From October 23, 2008, 12:00 pm, to November 2, 2008, 12:00 pm, a survey was conducted by the RSDSA regarding the use of opioids in people with CRPS, and specifically, the thoughts of this population, and their caregivers, about abuse-deterrent components in opioids. The survey was sent via e-mail to 4,959 contacts from the Electronic Alert listserv of the RSDSA. Of these 4,959 invitations, there were 513 completed survey responses (10.34%). The survey consisted of 7 questions surrounding the topics of opioid use, physician prescription of opioids, and abuse-deterrent components in opioids (See 'Question-Answer Details' for the survey questions).
SurveyResults

Maintaining Patients' Dignity Still Possible Despite Constraints on Time

Reuters Health Information 2007. © 2007 Reuters Ltd. NEW YORK (Reuters Health) Jul 27 - Patients are more than the illness they have, and failure to understand who they are and to treat them with respect is akin to "operating in the dark," a psychiatrist at the University of Manitoba writes in the BMJ for July 28. Even with the time constraints and tight budgets of today's healthcare systems, preserving patients' dignity is still possible, and is critical to keeping patients off the doorstep of despair, writes Dr. Harvey Max Chochinov. Dr. Chochinov writes that attitude, behavior, compassion, and dialogue -- "the A,B,C and D" of dignity-conserving care -- create an empirical framework for maintaining what he calls the core values of kindness, humanity and respect. He presents checklists of practical ways to implement the dignity-conserving care in everyday practice. First, and perhaps most importantly, he writes, clinicians need to recognize that their own attitudes and assumptions affect how they deal with patients and mediate their role in preserving patients' dignity. They need to examine their own attitudes toward and assumptions about patients, and to check their accuracy. For behaviors, he lists suggestions for conducting clinical examinations and facilitating communication that "enhance trust and connection between patients and their healthcare providers." Compassion "refers to a deep awareness of the suffering of another coupled with the wish to relieve it," the author writes. Through compassion, one recognizes the emotional impact that accompanies illness. Showing compassion may require no more than a gentle touch on the shoulder or any communication that "acknowledges the person beyond their illness." Finally, it's only through dialogue that a clinician can realize and understand the non-clinical aspects of a patient's life that affect the physician's approach to his or her illness. Dr. Chochinov is a palliative care specialist, but recommends his framework for every level of education and across all medical subspecialties, multidisciplinary teams, and allied health professions. BMJ 2007:335:184-187.