Reflex Sympathetic Dystrophy, now known as Complex Regional Pain Syndrome (CRPS), is a fascinating yet terrorizing disorder that affects more than 200,000 people in the United States, every year. CRPS is fascinating and scary for several reasons: it is a disorder located in the brain and spinal cord yet causes an individual to feel pain in her limbs or other places; it can migrate or spread from one part of the body to another; and it can cause severe and extreme pain. CRPS sufferers often experience, in the affected area, abnormal swelling, hair and nail growth, skin color changes, and changes in temperature. Not only that, there is no cure for CRPS and it can be lifelong.
CRPS is a chronic neuro-inflammatory disorder classified as “rare” by the FDA. It occurs when the nervous and immune systems malfunction as they respond to tissue damage from trauma. The nerves “misfire,” sending constant pain signals to the brain. The McGill University Pain Scale measures the level of pain as one of the severest.
It has been most commonly reported after traumatic injury or fracture; however, many other causes have been documented involving less severe trauma such as soft tissue injuries, sprains, cuts, bruises, or even from having a limb immobilized for a period of time in a cast.
One of the most troubling and challenging aspects of CRPS is its diagnosis. There is no single diagnostic test to confirm CRPS, although magnetic resonance imaging or triple-phase bone scans may sometimes identify CRPS characteristics in the bone metabolism. Testing may rule out other conditions such as Lyme disease, but one should be particularly aware of CRPS if he has an earlier injury to the affected area. All too often, if tests come out negative, uninformed health care providers may diagnose those suffering from CRPS with mental health disorders, such as conversion disorder and pain disorder. People with these mental health disorders suffer from emotional stress that cause physical symptoms.
Although under several different names, CRPS has been recognized and documented for more than 150 years. During the Civil War, a doctor working at a hospital for nervous diseases recounted:
“In our early experience of nerve wounds, we met with a small number of men were suffering from a pain which they described as ‘burning‘ or as ‘mustard red-hot‘ or as ‘red-hot file rasping the skin’. . . Its intensity varies from the most trivial burning to a state of torture, which can hardly be credited, but which reacts on the whole economy, until the general health is seriously affected. The part itself is not alone subject to a deep burning sensation, but becomes exquisitely hyperesthectic, so that a touch or tap of the finger causes pain. Exposure to the air is avoided by the patient with a care which seems absurd. . . Perhaps few persons who are not physicians can realize the influence which long continued and unendurable pain may have on both the body and mind. Under such torments the temper changes, the most amiable become irritable, the bravest soldier becomes a coward, and the strongest man is scarcely less nervous than the most hysterical girl.”
Because there is no cure for CRPS, treatment is focused on alleviating symptoms. Treatment may consist of ketamine injections, antidepressants, opioids, spinal cord stimulation, etc. There is substantial research being performed by the National Institutes of Health and the National Institute of Neurological Disorders and Stroke. Researchers hope to identify cellular changes in sensory neurons following a nerve injury to understand the processes by which our brains may reorganize or form new nerve connections following the injury to death to nerve cells.
