Melanie Dickens was only 10 years old when forced to grow up. She was attending a birthday party on Jan. 24, 2010 when she accidentally fell on her left ankle. When her pain continued to escalate weeks after the injury, her parents took action. They wanted answers as to why their daughter’s sprained and bruised bone wasn’t healing. Three months later, a pediatric orthopedist gave them devastating news. Melanie had been diagnosed with reflex sympathetic dystrophy (RSD).
RSD, now referred to as complex regional pain syndrome (CRPS), is a chronic neurological syndrome characterized by extreme sensitivity to touch, severe burning pain, tissue swelling and pathological changes in the bone and skin. The disease is caused by a malfunction of the nervous system. For reasons still not understood by medical professionals, nerves misfire in those with RSD, sending constant pain signals to the brain. The key to recovery is an early and accurate diagnosis, as well as an appropriate treatment plan.
In Melanie’s case, her doctor felt confident that aggressive physical therapy would get her mobile and, possibly, pain-free again. She immediately began attending physical therapy. Focused on desensitizing her foot and leg, her therapist had Melanie wear long socks. Being 10 years old, she refused to wear the beige compression socks suggested, so her parents found long white socks with pink and green stripes at a sport store. Not only did these fit her personality and give her some sense of control, but the socks also served a purpose in her recovery.
While daily physical therapy helped Melanie regain function in her left leg, the hypersensitivity and pain remained. Her doctor was frustrated and perplexed. Not progressing as an “expected” pediatric RSD patient should, Melanie was sent elsewhere.
Medications were then suggested. The first was an anticonvulsant and analgesic drug, but it didn’t work. It made her feel spacey and uneasy so she stopped taking it. Her new doctor then performed two different types of nerve blocks: a sympathetic ganglion and epidural block. These injections are designed to block nerve receptors in a particular part of the body from firing pain signals. However, both blocks had the opposite effect on Melanie. They caused her pain to worsen and the disease to spread.
Those treating her were out of options, so again, Melanie and her parents had to search for another specialist. This time the proposed therapy was a low-dose ketamine infusion protocol. Melanie would spend a week inpatient and receive three ketamine infusions. The intent is for the drug, an anesthetic, to stop the transmission of pain by blocking specific nerve receptors, thus allowing the patient’s nervous system a chance to repair and heal itself.
Melanie underwent her first ketamine infusion in August 2010. While she experienced the typical hallucinations and double vision and felt terrible throughout the week, she had very few severe side effects. Following the ketamine infusions, she was able to climb stairs and wiggle her toes. Her parents noticed she wasn’t grimacing when walking and no longer limped at the end of the day. While she still dealt with pain and hypersensitivity, these were improvements. Concluding that the treatment was working, her doctor placed Melanie on a two-to-five-month regime schedule.
Yet Melanie’s health problems were not over. Soon she received diagnoses of gastroparesis, syncope, joint hypermobility syndrome and migraines, and had daily fatigue and malaise. Each condition is serious and wreaks havoc on her small frame.
Gastroparesis is a condition that prevents food from moving through the digestive system properly. With Melanie, the symptoms came on gradually. At first, she had no appetite and felt nauseated. She then began to vomit easily and wasn’t gaining weight during growth spurt years. Doctors assumed this was a reaction to her pain until Melanie did not recover from a flu virus. When the medications prescribed didn’t help, she required nutritional support from a feeding tube. This finally led to Melanie undergoing two gastric stimulator implantations to help her digest food and decrease vomiting attacks. While not a cure, the stimulator made daily symptoms more tolerable and has also allowed her to maintain weight.
Syncope causes Melanie to faint due to either a sudden drop in blood pressure, a decrease in heart rate or changes in her blood volume. To counteract her rapid blood pressure changes, doctors implanted a Broviac catheter. This central intravenous line administers daily fluids into a large vein. In addition to drinking Gatorade, consuming high quantities of salt and taking magnesium supplements, the Broviac line keeps her hydrated. In turn, this has decreased her fainting spells substantially.
Melanie also suffers from joint hypermobility syndrome, a condition in which joints easily move beyond the normal range. Due to her poor ligament framework, Melanie is constantly overtaxing her muscles, which causes her widespread body pain. That, in conjunction with the hypermobility aspect of the syndrome, lead to frequent injuries to her knees, wrists, shoulders, hips and tail bone, triggering RSD pain. Her hypermobility even extends to her teeth, as they easily move and spread in her mouth.
She also lives with daily headaches and often endures relentless migraines. Malaise, the feeling of general discomfort or uneasiness, makes it difficult for her to participate in day-to-day activities. The unending pain compounded with lack of sleep and poor nutrition exacerbate her low-energy. Fatigue is a daily struggle. She drinks Pepsi every day as the caffeine aids in warding off migraines and gives her slightly more energy.
Vibrations of any kind send Melanie into a flare as well. She can feel lightning and thunder, fireworks and loud sounds in her body. Even driving in a car is difficult. While she continues to find ways to make herself more comfortable – music calms her – it is just another reminder that pain affects her everyday life. She is always searching for new ways to put out the “pain fire.”
While refusing opioids, Melanie does take Lyrica, Celebrex, low-dose naltrexone and many supplements including vitamin C, turmeric and magnesium. Yet her symptoms and pain never cease. Sadly, the only treatment that brought her some relief – the ketamine IV therapy – was discontinued two years ago when the hospital stopped offering it due to politics and health insurance policy changes. Since then, Melanie has found herself struggling even more. She now takes an oral form of ketamine, referred to as ketamine troches, for those dealing with higher pain levels. Yet she doesn’t like the taste of it dissolving in her mouth and hasn’t found it to be nearly as helpful as the infusions.
She and her parents continue to search everywhere for possible relief. She currently has a few specialists managing her care, but they are always looking for others to build the appropriate team for Melanie. Besides using western medicine, Melanie has been open to complementary therapies. She has seen practitioners for acupuncture, biofeedback, guided imagery, self-hypnosis and talk therapy. She follows a daily yoga practice and actively visits a chiropractor to help ease daily symptoms. Her goal is to find more coping mechanisms while seeking new options to treat her conditions. She doesn’t expect to find a cure per se; rather, Melanie holds on to hope that better answers will be found.
Living with such obstacles has made Melanie mature quickly. What a typical teenager would take for granted – playing basketball or hanging out with friends all day – are impossible for her. In the beginning of her pain journey, she lost many friends. Now she actually sees that as a blessing. She knows her tight circle of friends care about her. She has formed true friendships built on honesty, support and loyalty.
School has been another challenge. Even with a 504 status, Melanie has faced barriers receiving the help and instruction she needs regarding her education. What should have been given to her by the school administration due to her disability was not. In the upcoming year Melanie will be a freshman. While most teenagers would be excited for high school, she is anxious. She just hopes this new school will listen to her needs and give her the tools, structure and support to excel. It is important that she has the option to combine school and virtual classes with intermittent homebound instruction when necessary.
Yet despite everything that has changed in her life, Melanie remains bubbly and optimistic. “My pain and quality of life are worse today than when initially diagnosed, but I am better at coping and distracting myself.” She refuses to let pain slow her down from reaching her life goals. Last May, Melanie even started her own at-home business.
Since she was a kid, she loved baking and helping her mom in the kitchen. Her favorite time of the year was the holiday season, when her mom would go on a baking spree, making sweet desserts for family and friends. It was during that first winter after her RSD diagnosis that Melanie discovered baking helped her cope with pain. She then started baking more and more. Soon she was making and creating recipes from scratch. When friends kept asking her to bake cookies and cupcakes for them, she got the idea to turn her favorite distraction pastime into a business. Melanie Marie Bakery was born. While she currently can only ship cookies and biscotti, her vision is to one day open a storefront bakery and café.
Her future aspirations do not end with baking. For the past four years, Melanie has spearheaded a pain awareness campaign known as Crazy Sock Day. As her anniversary of pain neared, Melanie knew she wanted to make the day lively and happy. There was already enough pain, loss and sadness, so she made it a point to focus on the good. With her family and friends by her side, Melanie asked if they all would wear crazy socks on Jan. 24 to bring awareness to the cause as well as bring a smile to her face.
Little did Melanie know that Crazy Sock Day would soon gain momentum through social media outlets. Last year, thousands of individuals in numerous countries adorned crazy socks in honor of Melanie and the pain community. She is still overwhelmed to be a part of something so big. Her sole intent was to spread some joy and hope while also informing others about pain. Crazy Sock Day exceeded any expectation she could have imagined; and this year, Harbor City CrossFit will host the inaugural Crazy Sock Walk in Melbourne, Fla., benefitting the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA).
Melanie may be young, but she is full of wisdom. She understands there will be better and worse times. When the “monster” that is pain is rampant, she reminds herself that she can’t give up. She stays positive by keeping busy and moving. She has found additional comfort and strength connecting with others who can relate. Additionally, Melanie has been lucky to find helpful resources through the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) and The Coalition Against Pediatric Pain (TCAPP). Both of these organizations have made her feel important. They have validated her struggles and continue to fight for her care.
Her only wish is that society focus more attention on diseases with less notoriety. Just because the public may not know about her conditions does not mean they are less worthy of concern. More therapies need to be available to help those like her who are suffering.
Thankfully, her parents, siblings and dog, Hope, support Melanie. They bring her clarity, encouragement and unconditional love. They advocate for her, having her back during the ups and downs. She knows she is lucky to have them by her side to lean on and laugh with.
Melanie is a fighter. She is authentic, creative and optimistic. While realistic that a cure may not be in the cards, she does believe better answers to relief will exist in the future. In the meantime, life doesn’t stop because of pain, exhaustion or suffering. Melanie is the epitome of 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 me who I am today. I like me. I am pretty awesome, and I have a lot ahead of me to live for.”
The Coalition Against Pediatric Pain – http://www.tcapp.org
RSDSA – http://www.rsds.org
Crazy Sock Day – https://www.facebook.com/CrazySockDay
Melanie Marie Bakery – http://melaniemariebakery.weebly.com