CRESTVIEW — Complex Regional Pain Syndrome Awareness Month is technically in November.
However, unlike with Breast Cancer Awareness Month in October, you probably saw no local public service announcements, ribbons or 5K runs to support this cause.
One Crestview woman hopes that changes, because living with CRPS symptoms isn't just a one-month occurrence.
It's something she copes with every day.
LIKE FIRE AND ICE
In 2000, Kellye Van Dyke was just six months from earning her bachelor's degree —and closer to her dream career as an industrial psychologist — when she hurt her right ankle during boot camp as a U.S. Navy Reservist.
"The next thing I knew was my life, as I knew it, was over," the Crestview resident said.
Van Dyke has complex regional pain syndrome — also called reflex sympathetic dystrophy, or RSD; and causalgia — a rare, chronic disease. Symptoms can include severe pain, swelling and skin changes.
"Complex regional pain syndrome typically develops after an injury, surgery, stroke or heart attack, but the pain is out of proportion to the severity of the initial injury," the Mayo Clinic's website states.
True to form, what should have been a routine injury, with fast recovery, Van Dyke said, became so much more:
"They thought I had tendonitis," she said. "It turned out it was a stress fracture.
"I walked with an unsteady gait because I had to protect this leg, so now I have chronic back pain… it just affects your whole body."
Then there's the "continuous burning or throbbing pain … sensitivity to touch or cold … joint stiffness, swelling and damage, according to the Mayo Clinic.
Van Dyke, 47, describes it as fire and ice.
"My leg, it is so cold sometimes that it feels like it's on fire, and the bone inside feels like it is about to burst," she said. "It's almost like sticking your hand in an ice bucket for awhile and then running hot water over it — but maybe 100 times worse.
"And when the pain goes that high, even the wind blowing hurts like fire."
Walking is out of the question, so Van Dyke doesn't get out much — trips typically include doctor's appointments every three months; maybe a visit to the store, here and there, she said.
"I use a walker and I have a scooter, but my pain makes even the littlest wiggle on anything unbearable," Van Dyke said.
TREATMENT AND PHYSICAL THERAPY
CRPS's cause isn't understood, but improvement — even remission — is possible with early treatment, according to Mayo Clinic staff.
Infusing ketamine — medication primarily used for administering anesthesia — into the bloodstream, under nurses' and doctors' care, can help control the pain. However, receiving any kind of treatment is challenging when some doctors haven't even heard of CRPS, Van Dyke said.
"A doctor in Mississippi … refused to believe me … I had to print out information to bring to him … He thought it was all in my head until I had a (test) that showed I had causalgia," she said.
Faith and physical therapy have been Van Dyke's saving graces as her children — Kari, 28; Alisha, 24; Mishari, 22; and Bobby III, 18 — watch their mother suffer.
"If it has not been for my faith, I would have given up on my life a long time ago," she said. "I'm blessed. I have the best husband, Bobby Jr., who is my caretaker and my kids' mom and dad; he works a full-time job, cooks, cleans, does the shopping, doctors' appointments — everything."
Physical therapy is key to her treatment, she said, but, like with doctors, PTs need to know about the disease.
"I've only seen two PTs that helped: one in California and then here at Manual Therapy," Van Dyke said. "Because we move a lot, I've seen way too many PTs that have caused my condition to worsen, and the one I (saw) before (Manual Therapy) is why I was on bed rest for four years."
The Crestview PT "helped me regain some of my life back," which includes being able to sit in a chair again, Van Dyke said.
LIFESTYLE AND AWARENESS
Having CRPS, and being in pain "all day, 24-7," in her case, means saying goodbye to the " 'you' you used to be," Van Dyke said. "I am unable to work and raise my family in a traditional sense …
"It's like you have to learn how to deal with a whole new life … you lose your life, as it was, first; then your friends; then your family — and then, if you are not very careful, you lose yourself."
CRPS advocates — like the RSD CRPS Fibro and Chronic Pain Support Group for North Florida and South Georgia on Facebook — want people with the disease to know they are not alone, and they are pleased to see the issue rising in public consciousness.
For instance, in Florida, Gov. Rick Scott proclaimed November Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy Awareness Month.
The proclamation "will provide the opportunity to share experiences and information with the public, in order to raise awareness about CRPS/RSD … (and it) will provide an opportunity for families whose lives have been affected to celebrate life and know they are not alone," Scott stated.
Van Dyke said she felt blessed when Scott issued the proclamation.
And there is a ribbon. But instead of a single color — like pink, for breast cancer — CRPS advocates adopted a multi-colored flame, which symbolizes "the intense burning pain most patients experience every day of their CRPS-life," RSDHope.org states.
Still, Van Dyke said, "we really need to educate others. There are so many of us who suffer from this and they do not even know they have it, so awareness is the key to getting help for everyone."
Educating the public, along with helping those who have just begun CRPS's uncertain journey, is another way Van Dyke copes with its challenges.
Particularly the aspects of life that she lost.
"I had goals, dreams, a career," Van Dyke said. "And I lost it all over a stupid accident that most people would recover from in a week or less."
"I had goals, dreams, a career — and I lost it all over a stupid accident that most people would recover from in a week or less."
Kellye Van Dyke, Crestview
This article originally appeared on Crestview News Bulletin: Crestview woman shares struggle with pain as governor raises awareness
