Sparta woman’s disease causes chronic pain
By SETH AUGENSTEIN
SPARTA — A burning pain shoots up the arm and shoulder of Doreen Berg.
She describes it as sticking a finger in a electrical socket, and then lighting a fingertip on fire.
The pain’s not a single, senselessly self-inflicted injury; it’s an everyday, chronic occurrence for Berg in the past four years.
In January 2005, Berg slipped on black ice, upending herself, tearing her rotator cuff and leaving her bicep “hanging by a thread.” She had the surgeries to repair what had ripped in her body, and she worked at recovery. The muscles healed, but the true recovery never came.
“After the surgery I was not getting better — and the pain was getting worse,” she said.
The former aerobics instructor eventually was diagnosed with reflex sympathetic dystrophy syndrome, or RSD. She had never even heard of the affliction, and didn’t understand its full import until she looked up the complex-sounding symptoms online, and until she began to feel the characteristic, burning pain of RSD.
The syndrome is not completely medically understood. It’s basically a malfunction of the nervous system. Most people unlucky enough to have Berg’s injury will feel pain, but the nerves eventually will stop flashing pain signals to the brain once the healing process is finished. In RSD patients, they don’t, and doctors don’t know exactly why.
Essentially, Berg continues to feel the effects of her fall four-plus years ago.
According to the Reflex Sympathetic Dystrophy Syndrome Association, any number between 200,000 and 1.2 million Americans suffer from the condition — and may follow as many as 5 percent of all nerve injuries. The syndrome even can follow a simple ankle sprain. Often, it goes undetected for a painfully long time; people with the disease see an average of five physicians before they are diagnosed.
Berg’s injuries were more serious than a routine sprain, but they were wounds that, given time, normally heal enough to avoid constant, lingering pain — at least when the right steps toward healing are taken.
She’s had several procedures — removing scar tissue from her shoulder, 16 separate injections in the sensitive nervous system locus of her stellate ganglion, a bicep transfer to strengthen her tendons, ongoing infusions of ketamine — a strong tranquilizer — every six weeks. Simple balms and ointments do little but distract from the constant transmission of burning pain. A litany of medications have done nothing to dull the relentless pain.
“I’ve been on and off nearly every medication you can think of,” she said.
Of course, she also keeps active as much as possible. Although she needs some help with household chores, most notably vacuuming and mopping, she keeps pushing her body to its maximum effectiveness. Berg also walks at least six miles each day.
She’s also taking her daily walk for the greater cause, as well. On June 28, she will be a part of the Achilles Walk for Hope and Possibility in Central Park for the second year in a row. She will walk the five miles to raise money for various causes, perhaps the closest to her heart being the Reflex Sympathetic Dystrophy Syndrome Association and its push for a cure to the baffling disease.
In the meantime, the daily pain continues for Berg. She continues to work part-time at a doctor’s office. This week she departed for Northwestern Memorial Hospital’s pain clinic in Chicago. She’s applying for a month-long boot camp of sorts plotted to help people cope with unrelenting pain without the crutch of medications. Berg said she’s hopeful about what the future holds, including the possibility of a cure.
“I always say, I’ve got RSD, but RSD doesn’t have me,” she said.