LOS ANGELES (CBSLA.com) — Micaela Bensko says she began suffering from a mysterious pain so unbearable that the active, working mother became bedridden and practically unable to move.
“My neck and spine were on fire…There is no way to even describe it. It’s the kind of pain you can’t see yourself having for 40 more years. I had 40 more years to live,” Bensko said.
She suffers from a chronic illness called Complex Regional Pain Syndrome (CRPS). It can potentially strike anyone at any time.
“There would be times I crumbled on the stairs and my kids had to hold my head up,” Bensko said.
Sharon Glasper, of Compton, knows the pain all too well.
“The pain started in my hands, then like radiating, like knives cutting me…like someone stabbing me,” said Glasper, whose hands were delicately cupped in her lap. “I can barely touch you.”
One day, 74-year-old Elaine Holiday, from Mar Vista, woke up with pain, swelling and an intense heat in her right foot. It’s been eight years of agony and she still can’t stand even having a sheet touch her foot.
“Do I feel lucky that I have it just below my ankle? I guess so,” Holiday said.
CRPS is difficult to diagnose because it has no clear cause. Doctors do know that it’s a disorder of the nervous system, causing nerves to send constant pain signals to the brain.
“We really don’t know why one person gets it and another person doesn’t,” said Dr. Joshua Prager, a pain management specialist at University California, Los Angeles.
Prager says a quarter of his patients get CRPS spontaneously, like Holiday, and for no reason at all. Other patients reported feeling CRPS after enduring a trauma, and that could be anything from a car accident to something as simple as a bump or a bruise. It soon turns into debilitating pain that doesn’t easily respond to treatment.
Anyone can fall victim to CRPS but most patients tend to be women between 20 and 40 years old. Most go from doctor to doctor, misdiagnosed and, in some cases, being told it’s all in their head.
“I just knew something was wrong. I mean, I would have thought I was a hypochondriac if I looked at the list of everything I had done, but not a thing was showing that anything was wrong,” Bensko said.
“Medical schools don’t teach about it so physicians don’t know to look for it,” Prager said.
Although there’s no cure, doctors can help patients manage the condition with an integrated approach that can include physical therapy, medication and implanting devices to dull the pain.
“I’m not going to let this win,” Glasper said to CBS2/KCAL9 reporter Lisa Sigell. She leaned in to give Sigell a hug, a difficult task given the pain in her hands: “I’m going to give you a hug. Thank you for telling people about this.”
And after all the pain Bensko has endured, the determined mother has undergone intensive physical therapy and a surgical implant so that she can walk again.
“We have taught her to walk twice now,” her father said.
While Bensko still struggles to walk, she considers every day a blessing.
“It’s being able to wrap your brain around a diagnosis, understanding life is different — Ok, let’s have a good cry — still, you pick yourself up and keep moving forward,” Bensko said. “I hate that I had to go through this but it’s made me realize the meaning of life. There are two sides of the coin when it comes to pain, there’s a side that takes everything away and there’s a side that gives it all back.”
The avid photographer blogs about her life so that her experience may give hope to others dealing with this mysterious condition.
To read more about Micaela Bensko’s experience with CRPS and her treatment visit her blog at www.moanavida.com.
For more information on CRPS and how it’s diagnosed go to National Institutes of Health online.
More information on Dr. Joshua Prager can be found at www.californiapainmedicinecenter.com.