Marsha Tyszler’s journey with chronic pain began in 2003, when she fell while trying to jump a fence in a relay race. Although she immediately felt severe burning and coldness in her left leg and foot, she continued to run—dazed and unaware of the deep slice on her left leg from mid-calf to mid-thigh and the five-inch gash on her right inner knee.
A few days later Marsha began graduate school at NYU. Due to her deep leg wounds, she had to take a cab and use crutches to get to classes. She had always been an overachiever and honor student, but within a few weeks she had stopped participating in class discussions and taking notes. She and her professors were worried.
Marsha saw a neurologist, who was concerned not only by her scattered demeanor and forgetfulness, but by the 90-degree contracture of her left knee. For five months, Marsha visited specialists and underwent diagnostic tests that all came back negative. Most doctors discounted her pain and discredited her symptoms, saying it was all in her head.
Fortunately, her neurologist felt it was uncharacteristic for an active and educated 22-year-old to fake such severe symptoms. In January 2004, he diagnosed her with reflex sympathetic dystrophy (RSD), a neurological disorder that affects the skin, muscles, joints, bones and, in severe cases, internal organs. The hair on Marsha’s left leg grew less, her toenails became brittle, her quadriceps and calf muscles began to atrophy, and her knee contracture progressively worsened. The burning, stabbing and shooting pain and the dull aches and spasms intensified as the coldness and discoloration became more noticeable.
A week after her diagnosis, Marsha was in a taxicab accident that caused severe back and neck pain. She developed fibromyalgia, a syndrome characterized by pain, tenderness and stiffness of the muscles, ligaments and tendons. Marsha’s back, neck, shoulders, arms and chest ached from deep muscular pain accompanied by fatigue.
Marsha describes the pain as sometimes burning like a bonfire, other times “electric”. She is sensitive to light, sound and tactile stimuli, and has difficulty regulating her body temperature. She needs to use a wheelchair, and has gained ninety pounds due to swelling, inflammation and inactivity. She suffers from headaches and her bones ache. She breathes irregularly because her lungs are inflamed, and she has developed a heart arrhythmia.
Marsha has tried Botox (to release the knee contracture), as well as epidural and lumbar nerve blocks, ketamine infusion, biofeedback therapy, physical and occupational therapy, and two spinal cord stimulators. While none of these brought her consistent or considerable relief, she has found relaxation techniques to be helpful.
“Relaxation is important. I have learned what to do when my pain goes above my tolerance level. I feel everyone with pain should at least try relaxation and biofeedback, because they are non-invasive and can help one feel at ease while under duress from extreme pain.”
Although RSD has changed Marsha’s life, she refuses to give up her dreams. Only three months before her injury, she graduated summa cum laude and planned to earn a Ph.D. in education. With help from her professors, Marsha has completed many of her graduate courses and believes that, with proper therapy, she can conquer her cognitive deficits and obtain her master’s degree. “Perhaps I am stubborn, or perhaps I am the eternal dreamer.”
Marsha has also found new outlets for her endless drive. She works with disabled children, mentors college students, and teaches a beading class to senior citizens. Marsha serves on the advisory boards for CT Pain Foundation and RSD-CRPS LifeSavers. She has co-chaired Team RSDSA at the Achilles Foundation’s annual Walk for Hope and Possibility, and founded the RSDSA Causes page. She also co-administrates an RSD Facebook support group. Through these outlets, Marsha connects with people of all ages living with RSD, helping them find meaning and productivity in their own journeys.
Marsha’s family has played an instrumental role in her recovery and outlook, especially her dad, who lost his battle with cancer in 1991. He taught her how to deal with life’s problems while helping others. Throughout his illness, he taught her to smile and laugh genuinely, and to live life to the fullest.
“I have always been a firm believer that we should not question why we have to deal with something so tough, but rather focus our energy on what we should do to make the situation better. Even in the midst of pain, I have found satisfaction, joy and fulfillment. I am happy.”