By Heather Graves
Correspondent
GREEN BAY – Once an avid runner, 68-year-old Linda Yatso of Suamico is now trapped by her body, controlled by unrelenting pain in her left hip.
“The pain always feels like I have fallen from a two-story building,” she said. “It is very rarely that I can spend 5 or 10 minutes in a day not aware of the pain.”
Yatso suffers from Complex Regional Pain Syndrome (CRPS), a rare and not fully understood disorder of the nervous system that usually occurs after a traumatic injury, surgery, sprain or fracture.
Normally, while it may take awhile, as an injury heals, the pain from the injury subsides.
For people with CRPS, the pain never ends, but rather intensifies.
CRPS is difficult to diagnose because there is no specific testing for it.
Those afflicted with the disorder are often diagnosed through a pain clinic.
There also is no cure for CRPS.
On top of the pain, CRPS can cause swelling, skin color changes and extreme sensitivity at the affected area.
When every facet of life revolves around how much pain someone will be in that day – depression, frustration and often hopelessness can easily take over.
“The pain is almost indescribable,” Yatso said. “You have to completely change your life. There is no break from the pain.”
Lu Ann Boulanger, 60, New Franken, knows the pain Yatso describes all to well.
“My life was completely turned upside down,” Boulanger said. “The only way to describe the pain is you feel like you’re on fire, hot or cold, for no apparent reason. It’s known as the suicide disease, because so many people can’t tolerate the pain any longer.”
Her struggle with CRPS also stemmed from hip replacement surgery that later resulted in a blood clot.
From there, Boulanger began getting worse until unyielding pain in her foot and her lower leg took over every aspect of her being.
She said CRPS was life-altering.
Boulanger wasn’t able to return to the job she loved, she couldn’t do simple day-to-day tasks around the house, was unable to have a blanket on her affected foot and being doubted by some family and friends only added to the physical pain she was facing.
“It’s about 40 percent of family members question – ‘well how can it be that bad?’” Boulanger said. “It’s an invisible disease.”
After seeking help from multiple doctors, she was finally diagnosed with CRPS at a pain clinic.
Boulanger said on average it takes seeing five to seven doctors before patients are diagnosed.
She calls herself a walking miracle.
Following her diagnosis and many months of hard, painful work, Boulanger found relief with physical therapy.
While her lower leg and foot remain numb, she said she no longer feels pain, something not many suffering from CRPS can say.
Boulanger still does therapy once a month and keeps herself moving by water-walking.
She said she still fears the pain will return.
Yatso had to adapt to her new way of life as well.
“You have to own it so that it doesn’t own you,” she said.
To help her sleep, Yatso’s husband built her a structure out of PVC pipe so the the blanket doesn’t touch her affected area in bed, which causes her extreme pain.
It also prevents her from rolling onto her affected hip during the night.
Boulanger and Yatso aren’t alone in their struggles.
They are part of Voices Behind the Fire, Northeast Wisconsin’s CRPS support group.
Boulanger, who started in group, said its goal is to help create a safe place for those diagnosed with CRPS to share their journey and to promote family, friends and caregivers to join.
“The first thing a lot of people say when they join the group, ‘I’m finally with people who understand me and when I say I hurt I’m finally surrounded by people who understand,’” Boulanger said.
The support group meets from 6-9 p.m. the second Tuesday of every month at the Aging Disability Resource Center in Green Bay.
“The group feels connected,” Yatso said. “And it’s not sympathy, its understanding and empathy.”
Knowing the obstacles those with CRPS face, Boulanger has taken it upon herself to be an advocate, a voice for those affected.
She has been in contact with area emergency rooms to increase awareness of CRPS and share information with them on how they can better serve patients with the disorder.
“One day I hope we get to where we can go to the ER or get on a plane and can say I have CRPS, and they will know what that means and what to do,” Yatso said. “That is where we hope to be one day for people with CRPS.”
Color the World Orange is an annual event held the first Monday of November to help spread awareness of the disorder.
To show its support, the City of Green Bay will light up a downtown bridge orange on Nov. 4.
“The knowledge to be informed, to be aware, to be accepted, to be believed, to be validated, to be justified, those are all the things we want,” Yatso said.