Reflex Sympathetic Dystrophy (RSD)
Reflex sympathetic dystrophy is a progressive, neurological syndrome that is characterized by constant, severe, burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling, discoloration of the skin, muscle spasms, and extreme sensitivity to touch. It is estimated that six to eight million Americans suffer from RSD and it is three times more common in women than in men. People between the ages of forty and sixty are at most risk. RSD can spread to the entire affected limb and all parts of the body. The joints can become stiff, limiting movement and causing muscle atrophy and further pain and dysfunction. RSD can eventually become intractable if it becomes centralized in the nervous system. If left untreated, those afflicted will endure a lifetime of severe, unrelenting pain, sleep derivation, disability, unemployment, financial ruin, isolation by friends and family, and depression that may lead to thoughts of suicide.
RSD is triggered by a trauma to the body, usually an injury to an arm or a leg. In roughly 65% of cases, a mere soft tissue injury such as a sprained ankle has progressed into the condition, but fractures, surgeries, injections, infections, paralysis and repetitive strain injuries can also precipitate RSD. RSD may even occur without any apparent injury and the resulting pain can be aggravated by the slightest physical or emotional stimulation or sensory stimuli (e.g., a gentle breeze, a soft touch, vibrations , etc).
Awareness of the condition in both the general and medical population is very low, and there is no single test for RSD. While progress can be made if treatment (including pharmacology and physical therapy) is begun early, a delay in diagnosis will lose this window of opportunity and result in permanent disability and pain. For the millions that are afflicted with the aftermath of RSD, the author's own struggle with this debilitating disease provides valuable insight in managing symptoms.
My Personal Ordeal
As a writer and healthcare communication professional, I descended into RSD via a winding road of medical misdiagnoses and incorrect physical therapy from what originally started as computer-related repetitive strain injuries to my hands. Over the course of a year, I became an invalid with RSD in both arms and was forced to abandon my career, move back home with my parents, and rely on a network of friends and family to shower me and brush my teeth.
Unable to concentrate, cook, clean, comb my hair, tie my shoes, or drive a car, I spent many sleepless, frantic nights struggling to maintain composure as burning pain laid siege to my arms. Showering was excruciating due to the burning sensation on my skin, while a gentle human touch on my hands brought agonizing pain. RSD took my independence and replaced it with pain, anxiety, fear, frustration, alienation, desperation, and immense loss. By day, I scoured every available resource for information on RSD and was terrified by the overwhelming clinical information and abundant horror stories that I found in place of encouragement. By night, I surprised myself by contemplating hand amputations or suicide just to end the pain.
To regain control over my terrified self, I started avoiding sources of information on RSD that reminded me negatively of my mysterious disease and instead reached elsewhere for ammunition with which to combat moment-to-moment despair. I learned that one of the most important things I could do was stay calm at all costs. I received extensive support throughout this process — something that so few patients find amidst the blur of constant pain, compounding loss, and labyrinthine debates with doctors and insurance carriers. Fortunately for me, medical experts, family, and close friends carried me through the experience with encouragement and faith.
My neurologist and occupational therapist took the time to explain the crucial interaction in RSD among mind, body, and spirit. Acupuncture and other complementary therapies greatly aided my healing and pain management. I explored my own means of distracting and expanding my mind, and dug deep enough to find the sense of humor and playful spirit that I had all but forgotten. I had to look at myself as someone forever changed, and (here's the hard part) I had to learn to make peace with my new life paradigm — as I've come to know that definitive treatment for RSD remains on the horizon. As much as I wanted to repeat "RSD has destroyed my life" over and over again, I realized that I would be the one suffering from recycled anger and grief brought on by my own focus on the negative.
The journey of regaining lost function still continues, but the constant burning siege has stopped and is in remission. With drug therapy, acupuncture, occupational therapy, and lifestyle modifications, I'm in control of my body once again. As my nervous system attempts to stabilize further, I learn new clues every day about keeping a close, yet forgiving, dialogue with my body. In Table 1, I've listed ten ways I've found effective in helping me re-energize and refocus my being as I continue to reclaim my life from RSD.