Casey Cashman is a lively, optimistic 33-year-old. With a charismatic and bubbly personality, no one would ever suspect that she lives with three chronic pain disorders.
Her journey with pain began in 2008 when she needed neuroma surgery on her right foot. It was a success. She recovered quickly and returned to her normal life. Unfortunately, the pain returned six months later. With too much scar tissue surrounding the area for an MRI to show what was wrong, her surgeon felt exploratory surgery was needed.
This procedure did not have the same positive results. The instant Casey woke from surgery she knew something was terribly wrong. Her pain was electrifying and unrelenting. The doctors kept saying it would dissipate in a few days but it never stopped. Three weeks after surgery, her foot turned blue and began to glisten. She constantly felt incessant burning, stabbing pains. She was diagnosed then with reflex sympathetic dystrophy (RSD).
RSD, now medically 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 was experiencing every symptom. She had continuous, intense pain that was getting worse – instead of better – over time.
Thankfully for her, a well-educated and aggressive team of doctors surrounded her. Those managing her care understood that the sooner RSD is diagnosed and treated, the better the outcome. Her doctors took swift action. Casey attended physical therapy three times a week and followed a daily desensitization protocol at home. While her innate can-do attitude kept her motivated and hopeful that she would soon get relief, the pain was not receding.
The next plan was a series of six stellate ganglion nerve blocks. This is a local anesthetic injected into the sympathetic nerve tissue of the neck. The hope is that blocking the sympathetic activity by temporarily numbing the stellate ganglion collection of nerves may completely stop the pain. Unfortunately, these blocks did not help Casey at all.
Her doctors tried pain medications, but Casey could not tolerate them. One pill caused her to immediately throw up and continue projectile vomiting for 24 hours. After experimenting with a few different analgesics and opioids only to face the same horrible side effects of being unable to eat, drink or leave the bathroom, her doctors knew they needed to find another solution.
By this point, the RSD had become debilitating. Casey 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. With a young son to care for, Casey began searching all avenues for relief. Her health care team was now considering a more experimental therapy: hyperbaric oxygen therapy.
Hyperbaric oxygen therapy involves breathing pure oxygen in a sealed chamber that has been pressurized to three times normal air pressure. By increasing the amount of oxygen in the blood, this therapy stimulates the release of substances called growth factors and stem cells, which promote healing. Casey was open to trying.
The first session was more than she could handle. She instantly felt more intense pain traveling up her leg. The pain sent sensations throughout her entire body that were intolerable. This was not going to be her answer. She vowed she would never do it again. Yet her doctors felt otherwise. They adamantly encouraged her to try it again, believing her adverse reaction indicated something was working. It was their hypothesis that she may need a few sessions before getting relief.
Casey still said no. She had no intention of putting herself through that agony again. Then her dad, Casey’s mentor and hero in life, pleaded for her to go three more times. After speaking to her mom, she reluctantly agreed. Her parents have been rocks in her life; placing such value on their opinions was what pushed Casey to give this therapy one final attempt.
Her second session in the hyperbaric oxygen chamber was less excruciating. By the third, she was noticing slight changes. Encouraged by the results, Casey continued going for 12 sessions.
Each subsequent visit brought her more relief. Soon she was moving her toes again. Her pain level dropped to a four. Able to wear a sock again, she could put a shoe on and wash her foot. Life was looking up for Casey. That is, until her twelfth session, when she endured an oxygenated seizure during treatment.
While in the chamber, Casey noticed she was having difficulty breathing. Her body began to twitch and she was blacking out. Communicating these sensations to her doctors in the other room, she was pulled from the oxygen immediately. While she made a full recovery, Casey can never undergo another hyperbaric oxygen treatment.
Discouraged at having gone from making such significant improvements to being unable to continue with that therapy, Casey had to stay focused and positive. She was determined not to lose the returned mobility in her right foot. To maintain function and strength, Casey started running. Running became her outlet in life. It was her way to show the world that she was not giving up. Despite RSD taking so much away from her, she was not about to let go of this activity.
Wanting to prove to herself that no obstacle could define her life, she decided to train for a half marathon. On Sept. 18, 2011, Casey completed the Philadelphia Rock ‘n’ Roll half marathon in an impressive two hours and 45 minutes. Her best friend joined her for the 13.1 miles to offer constant support and encouragement. This accomplishment showed Casey there are no limits in life. She had done it!
Yet less than a month later Casey was hospitalized for a kidney infection. It cleared up only to return shortly thereafter. With a change in her urine’s color and excruciating back pain, doctors gave her an epidural injection to ease the pain. However, during the procedure those administering the epidural struck the wrong nerve. It was at that point her doctors realized her disease had spread. Casey left the hospital unable to walk … and since that visit she still has not been able to take a step without assistance of a cane, walker or wheelchair.
Then, that following April, Casey found herself back in the hospital after passing out at home. Diagnosed with postural orthostatic tachycardia syndrome (POTS), she learned that this condition impairs her body’s ability to regulate blood pressure. Casey spent the next month inpatient at a rehabilitation facility learning how to walk again as well as finding ways to make adjustments to her daily movements like sitting, standing or laying down. While she is now managing her POTS, loud noises, vibrations or riding in a car exacerbate the condition, causing dizziness, sweating and tremors.
Having to deal with the new diagnoses was devastating. However, Casey never lost her overall zest for life. She kept pushing on for her son – her main motivation to get up each day – and herself. “I smile because I don’t see the point in being miserable. Being miserable doesn’t change my circumstances, so I’d rather live happy.”
This, sadly, was not the end of her troubles. In 2012, after having a seizure during her doctor’s appointment, she was diagnosed with type II Ehlers-Danlos syndrome (EDS). Her form of EDS is known as hypermobility. In Casey’s case, it means that her limbs move and bend in different ways and she deals with joints that pop out easily. Her skin also has a high degree of elasticity and she bruises easily.
That same year, Casey also went catatonic for 45 minutes following a serious seizure. While being transported to the local ER, her family didn’t know if she would make it. Her blood pressure was extremely low as her heart rate spiked to high levels. When paramedics were finally able to stabilize her, she spent the next few days in the hospital to fully recover. It was during this time doctors ordered a seizure study.
The test showed she was non-epileptic but had an overactive frontal lobe, making it nearly impossible for Casey to sleep. Understanding that this issue prevented her brain from relaxing pushed Casey to look for other ways she could mentally calm herself while improving her body’s health. This led her to join a gym. Casey now takes working out seriously. Visiting the gym five days a week, she has found exercises that enable her body to move, allowing blood to flow more freely through her muscles.
Casey also has compressed nerves in her neck and issues with her vocal chords. In 2014, specialists diagnosed her with a neurogenic bladder. Because Casey’s nerves in her bladder are impaired, she either never has to urinate or constantly has to. Not knowing when she will need to use the bathroom makes her anxious. There are times when she won’t go out with friends because of the fear of not being able to find a bathroom in time.
Throughout the years, Casey has tried various treatments and modalities to aid in her relief. She has seen acupuncturists and physical therapists, used TENS units and had ultrasounds and oxygenated blood therapy. There were even diet changes and exercise modifications. Though none of these avenues led to her full recovery, Casey gained valuable feedback from each of these therapies.
She now knows her triggers, understands her body and has found coping techniques to assist her during 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.”
Casey relies on medications and daily IV fluids for POTS. While she has had five PICC lines and two ports in the past two years, it is the IVs that have helped the most in keeping her upright and mobile. Beta-blockers also control her irregular heart rhythms, and Zofran works to relieve her nausea. She views her prescriptions as a means to treat her conditions and symptoms and help her function.
Pain has impacted every aspect of Casey’s life. Unable to work, she was forced to leave her position as a human resources manager at the largest supermarket cooperative in the US. Her ability to be an active mom has greatly diminished as well. She can’t coach her son’s T-ball team anymore, and has difficulty attending his games, since the baseball field is not handicap accessible.
Casey lost her driver’s license for a period of time. Due to numbness in her hands and feet, she isn’t always able to cook for her son and herself. It is challenging to do laundry. Living in a two-story home with bedrooms on the second floor, Casey has resorted to sleeping on the couch downstairs. The dreams she envisioned for her life have completed shifted. Yet despite constantly fighting the pain, her spirit remains strong.
Connecting with others in similar situations has been a tremendous help for Casey. After her RSD diagnosis, she found a local support group, Living with RSD. By attending meetings, she met others suffering and found new resources. The group only reinforced to her the need to find purpose in life and keep moving forward. She had to continue to advocate for her health care while also redefining who she was as a person.
She then discovered the Reflex Sympathetic Dystrophy Association (RSDSA). The RSDSA validated her feelings, provided her with valuable information about her condition and worked with her to find doctors. It is now part of her goal to actively work with organizations, like Dysautonomia International and U.S. Pain Foundation, which have provided her comfort and strength.
While personally blessed with an incredible support system of family and friends, Casey feels support can come in various forms. And all forms hold value. She wishes more people struggling with pain looked for support systems that fulfill, uplift and benefit their specific needs. Having the encouragement and compassion from others led her to find new ways to adapt – to learn how to reinvent herself and recognize life is not over because of pain.
She also wishes the general public better understood the meaning of chronic pain. Pain is real, and it can affect anyone. Instead of judging, believe a person is suffering. Show compassion and concern without discounting an individual’s ability to do something.
Casey Cashman lives with pain every day. Yet that doesn’t stop her from living her best life today. Surrounded by loyal friends, great parents and the most caring, gentle son, she strives to find the good in every situation. She is strong-willed, sincere, hilarious and generous to a fault. Focused on making a difference in the lives of 100 million Americans, she is also spreading hope and joy. Her ebullience for life is contagious … and also healing.
“There is a greater purpose to life than me being sick. I am sure of that. 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.”
Dysautonomia International: http://www.dysautonomiainternational.org
U.S. Pain Foundation: http://uspainfoundation.org