Greencastle couple share their journey with Complex Regional Pain Syndrome
Cindy and Shawn Burgener of Greencastle want to help others who share their pain and the people who love them.
They have a rare bond with a rare disease that got a boost when, at her request, Pennsylvania Gov. Tom Wolf declared November Complex Regional Pain Syndrome Awareness Month and Nov. 7 as Complex Regional Pain Syndrome Day.
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Cindy started educating herself about the disease when Shawn was diagnosed more than 20 years ago, never imagining her own diagnosis would come about a decade later.
Their advocacy comes with examples — once confined to a wheelchair and told he would never walk again, Shawn now rides a Harley and they are the owners of the growing business TriState Events, which Cindy runs with their daughter, Meghan.
“There is life after CRPS. You don’t have to give up on it,” said Cindy, who is a support group facilitator for the American Chronic Pain Association.
“CRPS occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain,” says one brochure in a nearly 1-inch-thick packet of information Cindy provides on CRPS, which also is known as Reflex Sympathetic Dystrophy Syndrome.
How have the Burgeners experienced Complex Regional Pain Syndrome?
“I’ve had 12 years and he’s had 22 years. We’ve seen a lot,” Cindy said.
Shawn was an active duty Marine when he suffered an injury to his right hip and leg. He had surgery, but the pain never went away.
“The nerves no longer knew how to turn off the pain,” he said.
At the time, the Burgeners were living in Georgia. No longer deployable, Shawn was medically discharged from the Marines, told he would never walk again and put on lots of meds. He used a custom-made wheelchair and almost lost his leg due to infection. He didn’t think he would ever be able to work full-time again.
“I didn’t deal with it well,” he said. He was in pain and addicted to opioids and it almost destroyed his marriage and his family relationships.
“Luckily, I had Cindy by my side,” said Shawn. “I don’t know too many women who would stay as long as Cindy.”
Today, he said, their marriage is strong and they have a great relationship.
“When he got sick, I started researching to understand what he was struggling with … then along comes my injury,” she said.
The family — including children, Brandon, Brayden and Meghan — moved from Georgia to Greencastle in 2006. Cindy was working in a banking call center where she had to sign thousands of documents, developing tendonitis, which progressed to CRPS. Meghan ended up begin the primary caregiver for both her parents.
Early on, Shawn had a spinal cord stimulator implanted, but he said the medication had not yet caught up with the technology. Cindy had a stimulator implanted within her first year.
A stimulator “tricks the brain into not feeling pain signals … it’s tolerable and livable,” Shawn said.
In 2012, “a really good doctor” started helping get him away from the pain medication. Since about 2016, he’s relied only on the stimulator, with some aspirin and Tylenol, but not the 11 to 13 opioids and anti-seizure drugs he had been on daily.
After he got his pain under control, Shawn earned his doctorate with an emphasis on management and works for the federal government finding medical solutions for war fighters.
For about a year, a golden retriever named Colt has been by his side. Colt picks up things Shawn drops, helps him stand up, opens drawers, puts himself between Shawn and other people when they are out in public and can sense when Shawn is anxious, Cindy explained.
They were paired up through the Franklin County Office of Veterans’ Affairs Operation Save-A-Vet, Save-A-Pet program. Shawn was one of four local veterans to officially receive ownership of their dogs on Dec. 7 after a multi-phase process that included specialized training, exams and other requirements.
Cindy and Meghan hope TriState Events can do a three-day Freedom Fest event next July 4 weekend in Shippensburg to benefit the Operation Save-A-Vet, Save-A-Pet, which uses rescue dogs trained through Good Dog: Boarding, Doggie Day Care & Training, Greencastle.
Cindy was on long-term medical leave when the banking center where she worked closed. Part of her job had been working with nonprofits and event planning and she continued along that path, with event planning service opening in 2017. Mostly recently, TriState Events organized Fall Harvest Fest in Carlisle to benefit Toys for Toys and Holiday Makers Market in Greencastle and Winter Wonderland in Carlisle, both to raise money for the Salvation Army. They’re shooting for 11 events in 2024, including the wedding expo All About Brides on tap Feb. 26 at the Maryland Theatre in Hagerstown and International Women’s Day events with vendors, speakers, entertainment and networking in Frederick and Frostburg.
Meghan, now 21, has never really known her parents without pain in their lives and had to give up a lot of her childhood to help them. However, she says she wouldn’t change a thing since it made her more mature and gave her the drive to complete her business degree from Mount St. Mary’s University in two years.
Despite dealing with her own health issues, she graduated from the Mount in May 2022 and is now working online on her master’s in management from Shorter University, her mother’s alma mater.
Just before the COVID-19 pandemic — with symptoms including losing vision in one eye — Meghan was diagnosed with Lyme disease.
She has muscle aches and fatigue, is sensitive to touch and some days wakes up feeling like she’s been hit by a bus.
Meghan doesn’t know if she is more susceptible to health problems because her parents have CRPS. Like CRPS, conditions like Lyme disease, fibromyalgia and migranes fall under the chronic pain umbrella.
What are the symptoms of CRPS?
There’s a lot that’s unknown about CRPS, some doctors don’t believe it exists and it is considered a rare disease with fewer than 100,000 diagnoses a year, Cindy said.
“There’s no test, the doctor has to be in tune with the patient … if you just treat the symptoms, you will never know the root,” she said.
“Physicians do not know why it develops or what causes it, but CRPS is a nerve disorder that usually occurs after a traumatic injury, surgery, sprain, fracture or a period of dramatic immobilization. The principal symptom is pain dramatically disproportionate to the injury,” one brochure says.
- Pain described as deep, aching, cold, burning and/or increased skin sensitivity
- Abnormal swelling of the affected body part
- Abnormal hair or nail growth
- Abnormal skin color changes
- Abnormal skin temperature
- Abnormal sweating
Issues associated with CRPS can include limited range of movement, weakness and other motor problems, GI disfunction, nausea, bladder infections, insomnia, anxiety and depression, brain fog and poor memory, headaches and migraines, TMJ, lowered immunity, difficulty swallowing and changes in voice.
How does this facilitator help people with Complex Regional Pain Syndrome?
At one time, Cindy led support groups meetings at the Greencastle-Antrim Chamber of Commerce office. Today, meetings are online and she provides phone and email support and resources to anyone dealing with chronic pain, including people as far away as Canada and the United Kingdom and as young as 9.
“You have to find what works for you … there are so many options,” she explained.
Occupational therapy and physical therapy both can have good results. In addition to traditional medicine, there are homeopathic possibilities, including different spices and foods.
Information she provides runs from basic rights and self-management skills to COVID-19 and from going to the dentist and from inspirational stories to poetry.
Cindy can help people find a doctor or just lend a listening ear.
And she believes a good dose of positivity also is in order.
“If you let it take control, you lose control. If you speak positively, you will see positive results. What you speak about, you bring about,” said Cindy, who can be reached at 717-262-8839 or email@example.com.
Shawn Hardy is a reporter with Gannett's Franklin County newspapers in south-central Pennsylvania — the Echo Pilot in Greencastle, The Record Herald in Waynesboro and the Public Opinion in Chambersburg. She has more than 35 years of journalism experience. Reach her at firstname.lastname@example.org