Nerve Disorder (Reflex Sympathetic Dystrophy)

Question:

My 13-year-old daughter has been diagnosed with reflex sympathetic dystrophy. Please give me any information you have and what can be done for her. Also, is this a disease?

Answer:

Reflex sympathetic dystrophy syndrome (RSDS), also referred to as complex regional pain syndrome, is an acute and chronic pain disorder affecting an estimated 1.5 to 6 million Americans.

The cause of the disorder is unknown, but in two-thirds of cases, RSDS follows an accident, heart attack, stroke or some type of injury or trauma to the nervous system. Minor injuries, such as a sprain or a fall, may also result in RSDS. The pain of the injury not only stays with the person long after the injury has healed, but continues to get worse and may spread. If not caught within the early stages of the disease, RSDS usually ends up being a life-long, painful and sometimes disabling condition. In fact, the greatest likelihood of remission occurs when treatment is received within six months of the initial injury. After that, the probability of successful treatment significantly diminishes.

RSDS can develop in any age group, including children as young as 3 years old. Individuals with RSDS suffer severe, burning pain, changes in skin and bone, muscle spasms, vasomotor instability, such as increased sweating and tissue swelling, and extreme sensitivity to touch. In severe cases, some people with RSDS report feeling excruciating pain from the breeze caused by a ceiling fan.

One of the most frustrating problems with RSDS is that for many years doctors told patients that their pain was psychological, not physical. It was not until recently that RSDS was understood as a serious and very real problem caused by an injury to the body's nervous system.

Treatment includes taking drugs to halt the inflammation and relieve the pain, while undergoing intensive physical therapy that includes exercises to prevent the limitation of motion and loss of muscle strength that can result.

Heat therapy, gentle massage of the affected area and transcutaneous electrical nerve stimulation (TENS) frequently helps. TENS involves delivering a small amount of electrical current to the skin in the area to block transmission of pain impulses. If pain persists, the doctor may recommend injections into and around the affected nerves to suppress the pain impulses. This is most effective when done within the first month of the syndrome. Short courses of cortisone-like drugs to halt any inflammation, and sometimes drug infusions of medications to dilate narrowed blood vessels, help some people. In severe cases, surgery may be recommended to permanently sever the nerves to the involved area, eliminating the pain.

People with RSDS are often referred by their doctor to a pain center to work with physicians and therapists trained in the management of problems that cause long-lasting and difficult-to-relieve pain. Specialists in pain management stress that an early diagnosis and aggressive management of RSDS is mandatory for a successful outcome.

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