FAQS: Reflex Sympathetic Dystrophy (RSD)

RSD or Reflex Sympathetic Dystrophy (now known as Complex Regional Pain Syndrome or CRPS) is a problem caused by malfunctioning of the autonomic nervous system. It usually occurs after a traumatic injury. It is characterized by intense pain, usually burning in nature, which seems to be out of proportion to the event which caused the problem.

Other symptoms include muscle spasms or tremors, increased sensitivity to even light touch, atrophy, increased sweating, color and/or temperature changes, altered hair and nail growth. Patients may also experience many internal manifestations such as hoarseness, sensitivity to light and sound, digestive issues, bladder problems, irregular heart rhythms, gynecologic issues, memory loss and compromised immune system functioning.

Most of the patients that I have examined have developed problems following an injury. Sometimes this is a motor-vehicle accident, a fall or other significant trauma. However, I have seen the devastating effects of the disorder following relatively innocuous events such as an inadvertent needle stick by a seamstress.

It is currently estimated that anywhere from 1 to 5 million Americans have been diagnosed with this disorder. It is my opinion that the estimates are low and that the condition is far more widespread.

RSD/CRPS has no national spokesperson and research funding is limited. Furthermore, because the disease is poorly understood, the chronic pain from RSD/CRPS may be mistaken for pain from other physical or psychological conditions. This leads to a decrease in accurate diagnoses.

As with most medical conditions, your doctor will take a comprehensive history and perform a physical exam. Some of the aforementioned symptoms may be evident.

Conventional testing such as x-ray, CAT scan and MRI will serve only to eliminate other possible disorders but will not confirm the diagnosis of CRPS. Nuclear bone scans, once though to be a diagnostic aid have proven otherwise.

I have found that the only test that has proven to be accurate is thermography or Infrared imaging which will show the sympathetic dysfunction and identify the disorder. This test is contact-free and painless making it ideal for a pain-afflicted individual.

There are multiple available treatment options. However, treatment always begins with mobilization. Physical and occupational therapy are helpful in the early stages. However, the patient should be cautioned to be extremely careful in their choice of therapy because excessive or incorrect therapy can be quite harmful.

Many also use medications to treat the symptoms. Medications include anti-seizure drugs, muscle relaxants, anti-inflammatory agents and pain medicines.

Interventional treatments include injections, infusions and implanted devices.

Treatment of concurrent problems, such as fractures, disc disorders or other injuries is essential to achieve the best possible outcome in RSD/CRPS treatment.

Recent studies have shown that infusions of Ketamine have been of great help. Ongoing research is testing new forms of treatment.

We have also found that dietary changes have made a substantial difference in reducing the pain and other symptoms. Adjusting the diet to exclude gluten and other highly inflammatory foods has been greatly successful.

Additionally, a positive attitude and support from family and friends leads to better outcomes.

As with any disorder, the earlier the treatment is initiated the better the outcome. However, we have been fortunate to have good results in individuals afflicted for months and even years.

No, but this is not unusual in medicine. Many diseases are not “curable” but are treatable and controllable. This is the goal of treatment in RSD/CRPS – to control the dysfunction and facilitate a relatively normal lifestyle.

Women get the disorder about four times more often than men. There is no age limitation  – I have treated patients from 6 to 88 years of age.

Some theories suggest a genetic predisposition for the disorder. In fact, I have treated more than a dozen families with more than one member who suffers from RSD/CRPS.

This is a really interesting point. In my opinion, fibromyalgia is really a form of CRPS. Fibromyalgia and RSD/CRPS have many similarities: Both involve serious pain and mostly afflict women. However, CRPS is far more involved with more intense pain levels and internal organ manifestations.

There are many groups and associations that can provide more information. The national organization is the Reflex Sympathetic Dystrophy Association of America.

Most family doctors and specialists do not have specialized knowledge in the evaluation and treatment of RSD/CRPS. The RSD Association can provide you with an individual in your area who has been shown to demonstrate expertise. Often, however, it becomes necessary to travel to find a physician who treats the disorder on a full-time basis and is up to date with the most current information.