NEW FRANKEN — Take a moment right now to hope that you never experience the kind of pain Lu Ann Boulanger says she went through.
We’re not talking about the pain of loss or the pain of sorrow, which are excruciating in their own right. But in those instances, the word pain is really a metaphor for a high degree of emotional suffering. What Boulanger went through was actual pain, the screaming, rolling-on-the-floor-sobbing pain, the get-me-drugs-now-I-don’t-care-what-they-are pain most of us can’t even imagine.
That’s pain to a level rated by McGill University’s pain scale as being higher than childbirth, non-terminal cancer or having a finger chopped off, and it doesn’t subside but just stays with you 24/7, sometimes for years.
Complex regional pain syndrome. You probably haven’t heard of it either. A neurological condition, it’s far from common, but it’s not exactly rare, either. Dr. Ahmet Dervish, a pain specialist at BayCare Clinic Pain & Rehab Medicine, is one of the handful of go-to pain experts in Green Bay. He says he probably comes across it once every couple of months, although he’s not Boulanger’s doctor and has never seen her.
“It’s known as the suicide disease, because so many people can’t tolerate it,” Boulanger starts to say, before choking back a slight sob as if it were the memory of a fleeting thought she once had but doesn’t want to say out loud.
It’s not really even a disease — more of kind of a condition, Dervish says, but it’s a painful condition. And a mysterious one.
“Why it happens, we don’t really know,” Dervish says. “It’s typically after a small injury or surgery, carpal tunnel surgery or a fracture. Ninety percent of the time, there’s some kind of initiating event. But the cause of the condition is not known, why it happens, why the body is reacting the way the body is reacting.”
For Boulanger, that was hip replacement surgery back in 2015. She wound up with a blood clot from the surgery, and after a second surgery for that, she slowly started getting worse, with more and more pain — but in her foot and lower leg, not the hip.
“It’s from mid-calf down,” she says. “The pain ranged from a sharp knife to burning hot. Touching it was just unbelievable.”
It’s tough to diagnose. There is no testing for it.
“With cancer, you can see the cancer cells under a microscope,” Dervish says. “With infections, you take samples and you find evidence of strep or whatever it is, but it can be diagnosed. Those are solid; you can put your finger on it.
“This is clinical, so you’re relying on what the patient is telling you.”
That includes swelling and color change in the affected area, which often, oddly, is remote from the original injury or surgery, like it is in Boulanger’s case. The affected area will be extremely sensitive to touching, even blowing air. Then there’s pain. Out-of-proportion pain that doesn’t go away.
“There are cases where, no matter what you do, the pain is relentless,” he says. “If you have back pain, for example, I’ve seen lots of cases where there are certain positions you can get in where you can get rid of the pain or it is at least diminished. With this, no position helps; it’s constantly hurting …There’s just ongoing, constant pain. That’s the major hallmark of it.”
For Boulanger, that pain has been life-altering. At 59 years old, she missed much of her granddaughter’s early years. She wasn’t able to go back to her 23-year job in day care, something she thought she was putting on a small hiatus for the hip replacement. She couldn’t clean, wash dishes, couldn’t even lie down with a blanket on the affected foot, she says.
“The hardest thing is, it’s not only the doctor saying it’s in your head, but even your friends look at you …” she says. “It’s an invisible disease. People look at you, and there’s nothing wrong. But just because there’s no puddle of blood doesn’t mean you’re not in pain.”
Boulanger believes almost no one recovers. Dervish disagrees. When people as young as teenagers get it, they almost always recover, he says, and for most other people, if it’s diagnosed early enough, a combination of treatment and therapy often brings about a full recovery.
Aggressive physical therapy, started as early as possible, is crucial, according to Dervish.
“We need to keep that extremity moving, because one of the worst things is to avoid moving it because it hurts, because then stiffness develops,” he says. “If you start early and are initially aggressive, there’s hardly any residual effects.”
That said, Dervish has a patient who has had the condition for 15 years.
Boulanger was lucky. While her condition mystified several doctors, she eventually came across one who referred her to a pain clinic, where she was diagnosed with CRPS, She began an aggressive holistic counterattack that included physical therapy and no painkillers. Within about a year-and-a-half, she now says she has sensitivity but no pain.
She lives in constant fear the pain will return — something Dervish says is unlikely.
“If the pain is gone, it’s most likely gone forever, unless there’s another injury and it reoccurs,” he said.
Boulanger continues to do therapy once a month and exercises by walking in water.
Boulanger has also set herself up as kind of the regional CRPS advocate. She hosts a support group that meets on the second Tuesday of every month at the Aging and Disability Resource Center in Green Bay. As many as 13 have attended.
One woman who attends regularly lives in the Fox River Valley but drives up every month, glad to meet “finally with people who understand her,” Boulanger says.
Boulanger has been working to increase awareness of the condition among area emergency medical technicians and emergency room technicians so that if they come across a patient suffering from CRPS, they know enough to try not to touch the affected area and cause unnecessary suffering.
She also is working to put the word out just to increase awareness generally about the condition, so that it can be more quickly diagnosed and combated with therapy, and so that sufferers can have some degree of hope, or at least, support from their peers.
“I remember how scared I was,” she says. “It was ‘somebody’s got to figure this out. I can’t live like this. My life was upside down.’”