This news article showed up in one of my bot-driven searches for research on CRPS. Occasionally, human interest stories slip in, and they are usually awful and full of misinformation.
We can agree that I am quirky. One quirk involves profound irritation at the continued use of the term RSD, as it perpetuates a medical fallacy and... well, why don't I stop before I get started?'
This article, then, already had two strikes against it -- it was a human interest story and its title blared "Reflex Sympathetic Dystrophy."
However, it had magic words. A suffering person was asking for help. How often in these glitzy times when everything has a spin on it do we see such simplicity?
I can't help her, but maybe you can.
Published in the online paper NJ.com: True Jersey this morning by
RSD: Paulsboro woman suffering from Reflex Sympathetic Dystrophy asks for help
|Jenny Loder's left hand |
during a CRPS "flare"
"I never recovered from it," said Loder, now 31, of Paulsboro. "After the surgery, I got an infection. The surgeon ignored it to the point I almost died because it went on so long and went so deep."
Next, the pain began.
"It was the absolute worst pain you could ever imagine," she said. "Like I dipped my hand in gasoline and set it on fire, then rubbed sandpaper on it."
The pain started in her chest, then moved to her arms.
"Now, it's all over my body," Loder said. "I was diagnosed with RSD last March."
RSD or Reflex Sympathetic Dystrophy syndrome, is a nervous system disorder usually brought on by injury, Loder said.
"But it could be from someone just stepping on your foot," she said.
Dr. Deanna Janora, MD, associate professor in the department of rehabilitation medicine, Neuromusculoskeletal Institute at Rowan University School of Osteopathic Medicine, said RSD is a chronic pain syndrome, also known as Complex Regional Pain Syndrome (CRPS) that is characterized by severe pain, limited to one body area, such as an arm or leg, without a specific cause or origin.
"It is not known what the exact etiology (cause) is," Janora said. "Because of the symptoms, it has been believed that the sympathetic nervous system is involved. Most times, onset of symptoms follows either a local trauma, such as a fracture or surgery - mastectomy for instance - or a central nervous system event like a stroke."
When Loder's pain began, she went to her doctor, but was unable to find an answer.
"I was bouncing back and forth between doctors," she said. "It's the most painful of chronic pain disorders. The pain is at 10 at all times."
Loder has a 3-year-old daughter, a full-time job and an "orphan disease" with no cure that causes nearly unbearable pain just from wearing clothing.
Currently, she is taking Clonidine, which is used to control blood pressure but helps with RSD nerve pain and spasms, Cymbalta and Oxycodone for pain.
"In August 2013, I had an injection of painkillers and had a bad reaction to it," she said. "I ended up in the ER."
Treatment for RSD is available, but appointments are few and far between.
"Since the etiology is not known, there is no one treatment for this," Janora said. "A treatment program needs to be multifactorial and consider patient responses."
Medications to relieve the symptoms include low doses of tri-cyclic antidepressants, antiepileptics such as Gabapentin, medications that increase serotonin and norepinephrine levels in the brain such as Duloxetine, and topical anesthetic gels or patches.
Another treatment is Ketamine Therapy.
Janora said Ketamine is a medication that blocks the neurotransmitter signals for pain at the N-methyl-D-aspartate receptor - the predominant molecular device for controlling synaptic plasticity and memory function.
"This is one of many chemical signals our bodies have for pain and is a different location from the opioid receptor most people think about when they are considering pain," Janora said. "By blocking the NMDA receptor, the goal is to block the regeneration of the pain signals, which seem to be on a positive feedback loop."
The only location that offers this treatment in the area is Drexel University College of Medicine's Pain Management Department in Philadelphia.
Loder has an appointment for Ketamine Therapy, but because of the extensive waiting list, she is scheduled to visit Drexel on April 4, 2016.
"The patient goes into a medically induced coma for five days and, the idea is to reset the nervous system so it can rest and heal itself," Loder explained. "The Ketamine treatment will bring the pain down to a six or seven."
In the meantime, Loder continues to take the medications prescribed to her by her physician, and try her best to live as normally as possible.
"The medication makes it so I can get out of bed and do what I need to do," Loder said. "It's just hard to accept that this is how things are going to be for me from now on."
While she waits for her treatment, Loder struggles everyday to raise her daughter and get through the work day in pain.
"I work for an alarm monitoring company in Williamstown," she said. "It's mostly sitting at a desk, but my doctors want me to take time off. I can't afford to do that."
Loder said she has never asked for help in her journey with RSD, but, because her doctors have advised her to take a leave from work, she has reached out to family, friends and anyone who can help.
"I have a Go Fund Me account now because I'm at the point with the pain levels, working a 13-hour day is just too much," she said. "The reason the Go Fund Me is so important to me is that everyday the past few weeks has been a struggle for me to get out of bed."
The cold weather and low barometric pressure makes her condition even worse.
"Just knowing I have to get up in freezing temperatures and drive 30 minutes to work exhausts me," Loder said. "By the time I get home, I'm just so tired and in so much pain, it's all I can do to take care of my daughter and get us through until bedtime."
Ideally, her doctors would like her to stop working totally or go part time.
"There is just no way for that to happen at this point," she said. "We are a two income family and we depend on my half of the income to stay afloat."
Loder's boyfriend works Monday to Friday from 1 to 9 p.m., and she works Friday to Monday 5 a.m. to 3 p.m.
"We have to work separate shifts so that we don't have to put our daughter into daycare," she explained. "On Mondays and Fridays, a family member watches her during the overlap until I can get home from work."
Loder said she has never asked for help before - many of her friends don't even know she was diagnosed with RSD - but has reached a point where she needs assistance.
"I've never asked for help before," she said. "In fact, I've only recently started to admit to the people outside my immediate family that I have a chronic, incurable illness that renders me with almost no strength and extremely limited in what I can do because the pain is just that bad. But I've reached a point in my life that I must reach out to the community in which I've lived most of my life."
To help Loder and her family, visit www.gofundme.com/hcrmlw.
Kelly Roncace may be reached at firstname.lastname@example.org. Follow her on Twitter @kellylin89. Find the South Jersey Times on Facebook.
© 2015 L. Ryan