Pain has made this young woman wise beyond her years, but there’s still time to be a teen.
Melanie Dickens was only 10 years old in 2010 when she fell, spraining her ankle and bruising the bone. Her pain escalated in the weeks after the injury, and three months later a pediatric orthopedist delivered devastating news: Melanie had reflex sympathetic dystrophy (RSD). Since then she has battled chronic pain and found a kind of victory in believing in herself and valuing the rich years that lie ahead.
RSD, also known as complex regional pain syndrome (CRPS), is a chronic neurological syndrome that causes the nervous system to misfire, sending constant pain signals to the brain. It produces extreme sensitivity to touch, burning pain, tissue swelling, and pathological changes to bone and skin. Early and accurate diagnosing is essential for healing.
Melanie’s doctor ordered physical therapy to return mobility and reduce pain. Her physical therapist prescribed beige compression socks to desensitize Melanie’s foot and leg, but fashion-conscious Melanie refused them. Her parents substituted pink-and-green-striped tube socks, which were fun and gave her some sense of control.
Daily physical therapy helped Melanie regain function, but hypersensitivity and pain persisted. Multiple physicians tried and failed to rein in her pain. Finally, doctors tried an inpatient low-dose ketamine infusion, in which the drug stops the transmission of pain signals, allowing the nervous system to repair itself.
Seeking a little relief
After her first ketamine infusion, Melanie experienced some side effects including hallucinations and double vision—but none were severe. After treatment, she was able to climb stairs and wiggle her toes. She also no longer limped or grimaced when walking. While Melanie still had pain and hypersensitivity, she was improving. Doctors prescribed an ongoing ketamine schedule.
Yet Melanie’s struggles had only started. Soon, she was diagnosed with gastroparesis, syncope, joint hypermobility syndrome, migraines, fatigue, and malaise. She has a gastric neurostimulator, which is designed to suppress nausea and vomiting in order to digest food and maintain weight. A Broviac catheter administers daily fluids to minimize fainting spells. She drinks Pepsi daily because caffeine fights migraines and fatigue.
In the summer of 2015, Melanie learned she has a gene mutation of the RYR2 (ryanodine receptor 2) gene. This gene forms channels to transport positively formed calcium ions within cells. Because of the mutation, Melanie’s body cannot process stress correctly, making her more susceptible to triggers to her obsessive-compulsive tendencies, dysautonomia, stomach issues, chronic pain, fainting, and fatigue.
“Learning about this gene mutation connects many dots and gives me a bit more hope for the future,” she says.
Not only does it feel good to have proof that I have pain because of an actual reason, but also it now seems reasonable to think that in a few years I could be doing better because of what researchers uncover about this specific mutation.
Melanie gets some relief from medications, but the intravenous ketamine therapy—the only thing that really helps—was discontinued by the hospital, reputedly because of politics and health insurance changes. She took an oral form of ketamine, but found it’s not effective and tastes awful.
Complementary therapies like acupuncture, biofeedback, guided imagery, self-hypnosis, and talk therapy help, as do chiropractic care and daily yoga. Melanie continues to seek comfort (music calms her) and ways to “put out the pain fire.” She also plans her “rest” and better manages her pacing in order to accomplish daily tasks.
Since starting on a mito cocktail (a combination of medications designed for patients with her type of genetic mutation consisting of alpha-lipoic acid, CoQ10, L-Carnitine, Propranolol, and Amitriptyline), she has noticed small improvements. Syncope problems have lessened and she is not fainting as often; her fatigue is reduced and she has fewer energy “crashes.” Her mood has stabilized and the brain fog has decreased.
Melanie has been forced to grow up fast. At the start of her pain journey, Melanie found that some of her friends could no longer fit her into their lives. While she lost many friends, today she cherishes a tight circle of friendships based on honesty, support, and loyalty. She has even expanded this circle since starting high school last year.
Despite a Section 504 status (that is, designation as disabled under a statute that protects against discrimination), Melanie faced barriers at school. Starting high school made her anxious and unsure her new school would respect her needs. Fortunately, the transition to high school was easy. Melanie is thriving with a school schedule of three at-school classes and one online. She is an honor roll student with a grade point average of more than 4.0.
Focusing on the future
Melanie remains optimistic: “My pain and quality of life are worse today than when I was diagnosed, but I am better at coping and distracting myself,” she says. She refuses to let pain slow her down.
Her parents, her siblings, and her dog (whose name is Hope) bring Melanie clarity, encouragement, and unconditional love. Receiving her driver’s license—as well as her dream car, a Volkswagen Bug—has given her more independence, freedom, and a sense of normalcy.
In 2011, Melanie started Crazy Sock Day, a pain awareness campaign. On January 24 (her pain anniversary), Melanie asked friends and family to wear crazy socks to lift their spirits. Crazy Sock Day went viral; last year, thousands of people put on “crazy” socks in honor of Melanie and the pain community. Harbor City CrossFit also hosted the inaugural Crazy Sock Walk in Melbourne, Florida, benefitting the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) that was a huge success.
In 2014, Melanie started her own at-home business. She always loved baking, and after her RSD diagnosis, Melanie discovered that baking helped her cope with pain; soon, she was baking from scratch. Melanie Marie Bakery now ships cookies and biscotti, and she hopes to open a storefront bakery and café one day.
For 2016, Melanie is incorporating Community Problem Solving (CmPS) with the walk. (CmPS is a program designed to promote positive futures through young people problem-solving using critical and creative thinking.) Her CmPS team is tackling the social issue of invisible illness and being judged. Through the Crazy Sock Walk, Melanie has found a solution to creating public awareness and understanding for those with pain.
Melanie is wise beyond her years. When the pain “monster” runs wild, she stays positive by keeping busy and moving. Connecting with others helps her feel supported. She is active in RSDSA and The Coalition Against Pediatric Pain (TCAPP), both of which have made her feel important. They have validated her struggles and continue to fight for her care. Her wish is for society to focus more attention on lesser-known diseases. With so many people suffering in silence, she believes, people in pain need more options.
Melanie is a fighter. She is authentic, creative, and optimistic. While she acknowledges that a cure may not be found, she believes better pain relief options will be discovered. Melanie is a pain warrior: her smile is her battle mask, her good humor is her sword, and her determination is her body armor.
My life has been filled with many unfortunate circumstances, but it has made who I am today,” she says. “I live life for today—life is how it is. Thankfully, I like me. I am pretty awesome, and I have a lot ahead of me to live for.
The Coalition Against Pediatric Pain (TCAPP) – tcapp.org
Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) – rsds.org
Crazy Socks with Melanie for Invisible Illness Awareness: January 24th – facebook.com/CrazySockDay
Melanie Marie Bakery – melaniemariebakery.weebly.com
Community Problem Solving (CmPS) – fpspi.org/cmps.html