Dr. M.J. Bazos MD, Patient Handout
Reflex Sympathetic Dystrophy Syndrome- Myths and Facts

Reflex sympathetic dystrophy syndrome (RSD) is poorly understood by patients, their families, and healthcare professionals. In some cases the condition is mild, in some it is moderate, and in others it is severe. We have compiled a list of some of the common misconceptions about this syndrome followed by the facts.

MYTH - Reflex Sympathetic Dystrophy Syndrome (RSD/CRPS) is rare.
FACT — It is not a rare disorder and may affect millions of people in this country. This syndrome occurs after 1 to 2 % of various fractures, after 2 to 5% of peripheral nerve injuries, and 7 to 35% of prospective studies of Colles fracture. The diagnosis is often not made early and some of the very mild cases may resolve with no treatment and others may progress through the stages and become chronic, and often debilitating.

MYTH - RSD/CRPS is a recently discovered disease.
FACT— It was described during the Civil War and has been in the literature under a variety of names ever since.

MYTH - RSD/CRPS does not spread.
FACT — The usual pattern of spread is up the same extremity and then may continue to spread on the same side of the body or to the opposite extremity. RSD/CRPS may spread to a distant site. According to the RSDSA database, the condition spreads in 70% of patients.

MYTH - RSD/CRPS will burn itself out in 6 months.
FACT — Many patients who are not treated early will experience spread of RSD and this may become a lifelong problem. Even with early treatment this may become a chronic condition.

MYTH - Children do not get RSD/CRPS — limb pain in children is psychological.

FACT — RSD/CRPS can start as young as 3 years of age. This is not a psychological condition. Children may develop psychological problems when physicians, parents, teachers, and other children do not believe their complaints of pain.

MYTH - Minor injuries cannot cause RSD/CRPS.
FACT — Minor injuries, such as a sprain or a fall are frequent causes of RSD/CRPS. RSD/CRPS can start immediately after the injury or later. One characteristic of RSD/CRPS is that the pain is more severe than expected for the type of injury that occurred. In 10 to 26% of cases no precipitating factor can be found.

MYTH - A painful limb should be put in a cast.
FACT— Casting and immobilization can cause worsening of RSD/CRPS symptoms. In some cases it may be necessary, but great care should be taken. Although not well studied, available clinical data suggest that immobilizing an injured limb for an extended period may be a risk factor for developing RSD/CRPS.

MYTH - After one or two treatment programs have not helped, there is nothing that can be done. The patient should be told to go home and learn to live with the pain.
FACT — There are many forms of treatment for RSD/CRPS. Treatment may include medication, sympathetic nerve blocks, physical therapy, psychological support, and possibly sympathectomy, or dorsal column stimulator. The physician directing the care of the patient should have a treatment plan. In severe or long term cases, a Pain Clinic with a coordinated plan may be helpful.

MYTH - Patients continue to complain because of secondary gains. They are looking for sympathy and are gaining satisfaction from this experience.
FACT— As with any group of individuals there is a small percentage of RSD/CRPS patients who get satisfaction from a chronic illness. The vast majority of RSD/CRPS patients were active, productive individuals prior to this disease and do not enjoy the pain, the loss of independence, the loss of
job or inability to attend school and the loss of income.

The most devastating aspect of the illness is that physicians, other health care professionals, employers and especially friends and family members do not understand how much the patient is suffering. They are not looking for sympathy, only understanding.

MYTH - Once RSD/CRPS is in remission, it does not come back.
FACT — It may subside for years and then recur with a new injury. The reoccurrence should be treated immediately.

MYTH - Vigorous and aggressive physical therapy is best.
FACT — Physical therapy should be carried out only under a physician’s supervision. Osteoporosis occurs with RSD/CRPS and as a result of bone loss, pathological fractures can be caused by overly aggressive therapy. Additionally, nerve entrapment and other disorders are sometimes mistakenly diagnosed as RSD/CRPS. Proper diagnosis should be obtained from a competent physician.
Physical therapy should be part of a program of pain control and sympathetic blocks (if indicated). Mobilization of the affected limb is a very important part of treatment and should be carried out by a therapist who is familiar with RSD/CRPS. The goal is to keep the limb moving as much as possible and enable the patient to perform normal activities. In general, "To hurt, is not to harm" as long as the patient is self mobilizing. Aquatic therapy at a comfortable water temperature can often facilitate mobilization of extremities, specially if RSD/CRPS is in the lower extremity.
However, the cliché "No pain, no gain" does not apply to RSD/CRPS patients.

MYTH - The treatment for all RSD/CRPS patients should be the same.
FACT — Each patient needs an individual treatment plan. What helps one patient, may not help another.

MYTH - RSD/CRPS is not recognized as a reason for long-term disability.
FACT — It is. The physician directing the patient’s care should write a letter or report describing the severity of the condition and detailing the patient treatment plan to substantiate the claim. For more information, see the section on Social Security in our Resource Directory for patients with RSD.

MYTH - Any physician can treat RSD/CRPS without outside help.
FACT — RSD/CRPS is a complex condition with varying degrees of severity and disability. Patients should be cared for by a physician who knows how to treat RSD/CRPS. Often, a team approach (physician, physical therapist, anesthesiologist, mental health provider, and social worker) is most helpful.

MYTH - There are no symptoms except pain, swelling, heat or coldness, and color change.
FACT — There are many other symptoms including movement disorders (difficulty starting movement, increased tone, increased reflexes, tremor, muscle spasms), weakness, fatigue, skin rashes, frequent infections, migraine
headaches, and others may be found as more data is accumulated.

MYTH - Family and friends find this condition easy to understand.
FACT — RSD/CRPS is difficult for many physicians to understand. It is not surprising that family and friends do not understand the patient’s pain and disability.

MYTH - The pain is not as bad as the patient says it is.
FACT — The pain is often as bad as claimed and may be even worse.

MYTH - Blocks and other treatments only work in the first stage of the disease.
FACT — There are treatments that will help in any stage of RSD/CRPS. If RSD/CRPS spreads or if a new injury occurs, blocks may be effective again.

MYTH - Narcotics do not help relieve the pain.
FACT — Narcotic medications are effective in some patients with RSD/CRPS. This is always a controversial issue. They are used when non-narcotic pain relievers are not effective and are used to reduce the level of pain until other forms of therapy become effective. A formal written contract-protocol between the patient and physician can help minimize misunderstandings about the potential complications of narcotic use.

MYTH - RSD/CRPS occurs in psychologically unbalanced people.
FACT — Persons who get RSD/CRPS are not any different than the rest of the population psychologically. Once they get RSD/CRPS and they are in constant pain they may be depressed and suffer other psychological changes. When RSD/CRPS symptoms are relieved these changes disappear.

MYTH - Every patient has the same results from a medication or treatment.
FACT —There are many forms of treatment and combinations of treatment and medication. What is highly effective for one, may not work in another. Medication dosages may need to be adjusted to get the best results.

MYTH - A patient who has no visible sign or positive tests does not have RSD/CRPS.
FACT — RSD/CRPS is a clinical diagnosis. This means that the physician makes the diagnosis based on thorough history and physical examination. When seeing a new physician, it is a good idea to have a brief medical history
with dates of various treatments and the response to them. Also include a brief summary of any hospitalizations and surgeries. It is helpful for the doctor to have a copy of this information before your appointment. Given the complexity of RSD/CRPS, it is helpful for the patient to keep their own
et of relevant medical records.

MYTH - RSD/CRPS does not occur in families.
FACT — As we are accumulating data we are finding families with two or more members with RSD/CRPS. This is true in about 5% of the cases.

MYTH - RSD/CRPS following surgery means that the physician did something wrong.
FACT — RSD/CRPS can occur following surgery as well as a rauma. This does not mean that the surgery was performed incorrectly.

MYTH - There is no hope for patients who have had RSD/CRPS for a long time.
FACT — The future of RSD/CRPS treatment is optomistic. Researchers worldwide investigate effective treatments and the cause of RSD/CRPS. We hope all physicians will recognize and diagnose SD/CRPS in the early stages so that the patient can be treated promptly and appropriately. Any physician unfamiliar with the treatment of RSD/CRPS should refer patients
immediately to a physician or center that treats RSD/CRPS.