Brave woman vs. disabling disease CRPS
Kathleen Belliveau of Barre took advantage of a quiet Saturday afternoon last fall to finish some housecleaning. The next morning, she woke up and couldn’t move.
“I couldn’t get up,” the mother of seven remembered. “There was a burning pain on my right side and I couldn’t put any pressure on my leg.”
Her husband brought her to Barre Health Center, where she was given a shot and a painkiller and sent home. The next day she went to her doctor, who gave her another shot and some OxyContin. Nothing worked. A few days later, the pain was so intense that she was admitted to the UMass Memorial Medical Center.
She was hospitalized for two weeks before being transferred to Harrington Memorial Hospital for rehabilitation. Only then was she diagnosed with a poorly understood condition called Complex Regional Pain Syndrome, also known as Reflex Sympathetic Dystrophy, characterized by severe and relentless pain.
“It hurts,” Ms. Belliveau said simply. “It’s very, very painful, and it never stops. I’m 42 years old, but I feel some days like I’m 100.”
CRPS is a chronic neurological syndrome in which nerves misfire and send constant pain signals to the brain. It develops in response to an event the body regards as traumatic, such as surgery, stroke, an accident or injuries. An early diagnosis is the key to recovery, but many doctors are unaware of the condition’s symptoms.
Unfortunately for Ms. Belliveau, her diagnosis came late, in the third or last stage of the condition. Known as the atrophic stage, it involves the loss of motion or body function. While the syndrome isn’t fatal, there’s no cure for the atrophic stage.
What this means for Ms. Belliveau is constant burning on her right side and the loss of use of her right leg. She uses a cane, brace and walker to get around and takes a cocktail of more than 15 pills a day. She described the pain as ice water coursing down her leg, with a “deep flame” heading the other way. “Some days I’ll feel good and can do stuff, but then I’ll be in bed for four days. And it’s going to be like this forever. It stinks, but it is what it is. My body doesn’t work, but my brain is still strong.”
Looking back, Ms. Belliveau remembers that she would sometimes trip, be clumsy or feel pain long before she was diagnosed, but she attributed the symptoms to a previous shoulder injury. Plus, she was busy working and raising her kids. A divorcée who has since remarried, she put herself through dental hygienist school while waitressing on weekends, but she was forced to quit her job last year when she was diagnosed.
“As a hygienist, you have to have control of your instruments or your patients won’t like you very much,” she noted wryly. “I can’t do a lot of what I used to do. The most frustrating part of this is having to depend on other people. But my husband has been a rock through all of this. He’s the best thing that ever happened to me and my children.”
Mark Belliveau, her husband of 12 years, is a sergeant at the Worcester County Jail and House of Correction. He had planned to retire this fall now that their kids are older; the couple looked forward to going on hikes and taking trips to the Cape and the mountains.
CRPS has changed all that.
“This condition comes from nowhere and whacks you,” he said. “I love my wife and I hate to see her like this, but there’s nothing anyone can do. It’s very heavy on my heart. We had everything, and we were looking forward to everything.”
Sgt. Belliveau has been active in the Knights of Columbus at Our Lady of Mount Carmel Church, and the Knights will hold a dinner dance and fundraiser for the couple at 6 p.m. Aug. 29 in the church’s recreation center. Tickets are $20 and can be obtained by calling Pasquale Totaro at San Remo hair salon, (508) 755-5852.
Ms. Belliveau said she agreed to the fundraiser on the condition that it includes an educational component, to raise awareness of CRPS and the importance of an early diagnosis. “I’m learning a lot about this disease myself. I’m at a crossroad, so I just have to take a different road. You deal with it, and the sun comes up again the next day.”