Casey Cashman is a lively, optimistic 33-year-old whose charismatic personality belies the struggles she faces with three chronic pain disorders.
Surgery gone wrong: reflex sympathetic dystrophy (RSD)
Casey’s pain journey began in 2008 with foot surgery gone wrong. An initial surgery fixed a neuroma but six months later, her pain returned. A subsequent exploratory procedure was supposed to provide relief; instead, it caused electrifying and unrelenting pain. For weeks afterward, Casey experienced an ever-growing list of symptoms—she was eventually diagnosed with reflex sympathetic dystrophy (RSD).
RSD, also referred to as complex regional pain syndrome (CRPS), is a chronic neurological syndrome characterized by severe burning pain, pathological changes to the bone and skin, excessive sweating, tissue swelling and extreme sensitivity to touch.
Casey’s healthcare team moved swiftly to tackle her RSD. But physical therapy and a daily desensitization protocol didn’t help; neither did nerve blocks or pain medications. Pain medications were one of the first treatments offered to her. She tried numerous analgesics and opioids, which made her violently ill causing nausea, vomiting, headaches, severe abdominal cramping and constipation.
Despite the debilitating side effects, Casey felt opioids were her best option for pain relief.
Side effects and Constipation
However, not knowing enough about the drugs, Casey was unaware that the constipation she began to experience a few weeks after starting opioids was directly related to her medication. Too embarrassed to discuss her difficulties having a bowel movement or the unbearable pain she had going the bathroom with her doctor, she continued to suffer in silence. Her self-esteem was affected; there were periods when she would go days without a bowel movement and other times when she would spend the entire day in the bathroom. This led Casey to isolate herself from the outside world. She quickly became depressed as constipation ruled her life and she did not know why.
It wasn’t until a follow-up appointment that her doctor mentioned constipation as being a slight issue for those taking opioids. Relieved to learn she had opioid-induced constipation (OIC), Casey finally felt comfortable speaking to her doctor about the discomfort. She then tried different therapies to relieve the situation. But daily suppositories, a high-fiber diet, Metamucil and magnesium citrate didn’t seem to stop the OIC. After dealing with horrible side effects for six months and not receiving great relief from the opioids, Casey stopped using them daily use and only relied on them for breakthrough pain.
Unable to tolerate any painkillers and with a young son to care for, Casey began to lose hope that her pain would abate and allow her to be the kind of mom she wished to be. She could not move the toes on her right foot or wear a sock. The hypersensitivity was so extreme she also could not wash the extremity. The pain was horrific.
Her doctors eventually suggested an experimental treatment: hyperbaric oxygen therapy. Casey was ready to try anything.
Her first session caused her pain to flare out of control, and Casey felt like giving up. But her parents—whom she says have offered rock-solid support throughout her journey—urged her to follow her team’s recommendation to keep trying. Eventually, she endured 12 sessions, which provided her with enormous relief. But a seizure during her last session forced her to stop therapy.
Saying no to limits—and yes to achievements
At first discouraged, Casey worked hard to stay focused and embrace positivity. Determined not to lose the mobility she’d regained and to protect the improvement in her foot pain, Casey started running.
“Running became my outlet in life,” she says. “It was my way to show the world that I was not giving up.” Casey defied the odds, running the Philadelphia Rock ‘n’ Roll Half Marathon (with a friend by her side) in an impressive two hours and 45 minutes.
Another setback: postural orthostatic tachycardia syndrome (POTS)
Less than a month after completing the half marathon, Casey was hit with a new challenge: multiple kidney infections. A botched epidural and other procedures revealed a spread of disease, leaving Casey unable to walk without assistance.
Casey was diagnosed shortly after with Postural Orthostatic Tachycardia Syndrome (POTS), a condition that impairs her body’s ability to regulate blood pressure. Casey suddenly found herself in inpatient rehabilitation care, learning how to walk again. For Casey, POTS includes dizziness, sweating and tremors that can lead her to faint.
One would think the pressure of multiple chronic conditions would dampen her spirit, but Casey is unstoppable: “I smile because I don’t see the point in being miserable,” she says. “Being miserable doesn’t change my circumstances, so I would rather live happy.” Her son, she says, is her main motivation for starting each day with a positive outlook.
Round three: Ehlers-Danlos Syndrome (EDS)
Having adapted to life with chronic illness and pain, Casey was ironically prepared for a third diagnosis in 2012: Type II Ehlers-Danlos Syndrome (EDS). Her form of EDS is known as hypermobility: Casey’s limbs move and bend in different ways, her joints pop out easily, her skin has a high degree of elasticity and she bruises readily.
During evaluations for EDS, Casey’s medical team discovered she has an overactive frontal lobe, making it nearly impossible for her to sleep. Casey looked for ways to mentally calm herself while improving her body’s health, which led her to join a gym. Casey now works out five days a week, which provides some symptom relief.
Casey also has compressed nerves in her neck and issues with her vocal cords, as well as a neurogenic bladder. Each of these conditions compounds her challenges.
Listening to her body and managing her pain
Casey has tried numerous modalities to aid in her relief: Acupuncturists and physical therapists. TENS units. Oxygenated blood therapy. Dietary changes. Exercise modifications. Though none of these led to full recovery, Casey gained valuable feedback from each one.
She now knows her triggers, understands her body, and has found coping techniques to relieve pain flares. Casey has learned to manage her pain. By listening to her body, she avoids overdoing it: “I know what I can do. I know what I cannot do, and I verbalize it. This keeps me as well as I can be,” she explains. Casey also relies on medications and daily IV fluids for symptom relief.
Seeking hope in spite of pain
Pain has affected every aspect of Casey’s life. She had to stop working as a human relations manager. Her parenting activities are limited; she can’t coach her son’s T-ball team anymore, and even has difficulty attending his games. (The field is not wheelchair-accessible.)
Casey lost her driver’s license for a while. Numbness in her hands and feet means she isn’t always able to cook for her family, and daily activities like laundry are challenging. She has to sleep on a couch downstairs to minimize climbing stairs.
The dreams Casey envisioned for her life have completely changed. Yet despite constantly fighting the pain, her spirit remains strong.
After her RSD diagnosis, Casey found a local support group: Living with RSD. She met others who shared her experience, and discovered a slew of new resources. The group reinforced her desire to find purpose in life and move forward in spite of pain. She works hard to advocate for her own healthcare, while redefining who she is as a person with pain.
Activism and inspiration
The Reflex Sympathetic Dystrophy Association (RSDSA) also provided Casey with valuable information and helped her find better doctors. She now works actively with RSDSA, as well as Dysautonomia International and the U.S. Pain Foundation, all of which have provided her comfort and strength—and helped her adapt to a new life in spite of pain.
While she is blessed with an incredible support system of family and friends, Casey believes support can come in many other forms, all of which hold value. She urges people struggling with pain to seek support systems that fulfill their needs and lift their spirits, no matter what.
Casey’s activism focuses on educating the public about the meaning and impact of chronic pain. “Pain is real, and it can affect anyone,” she says. “Instead of judging, believe a person is suffering. Show compassion and concern without discounting an individual’s ability to do something.”
Casey lives with pain every single day, but that doesn’t stop her from living her best life. Surrounded by loyal friends, great parents and a caring, gentle son, she strives to find the good in every situation. She focuses on making a difference in the lives of millions of Americans, and in doing so, spreads hope and joy.
“There is a greater purpose to life than my being sick; I am sure of that,” says Casey. “My mission now is to help make a difference for others like me. My pain doesn’t define me. I can do more than I ever thought possible.”