Beth Jersey is a home gardener. “Mostly roses, irises, and dahlias,” says the payroll manager at a S.F. nonprofit. But after undergoing ligament reconstruction surgery, called basal joint surgery, to treat osteoarthritis in her thumb, she experienced such extreme pain that she couldn’t tend to the garden any longer.
“I found that any gardening was painful,” Jersey, the subject of a recent Washington Post article, tells CreakyJoints. “Trimming, digging, weeding, and sweeping were all excruciating.”
In the Post article, Jersey describes feeling isolated and abandoned by physicians, who often didn’t return her calls, and when they did, often days late, they didn’t take her pain levels seriously enough.
“Being in intense pain is such an isolating experience, especially when the cause is invisible to most people,” she says. “When I first had the surgery, I thought my pain was ‘normal,’ but after a couple of weeks, I realized that this amount of pain can’t be what everyone experiences.”
So Jersey sought help from her surgeon’s office, only to find the staff “just would not consider my pain as anything but the rantings of a hypersensitive patient,” she says. (She asked that the surgeon not be named.)
“I expect they get their share of people who need more hand holding than others,” she adds. “But I believe that protocols should have been in place to consider the possibility that my pain had another cause.”
She was right. Jersey was later diagnosed with complex regional pain syndrome (CRPS), a condition which is often described as “‘burning,’ ‘pins and needles’ sensation, or as if someone were squeezing the affected limb,” notes the National Institute of Neurological Disorders and Stroke. “The pain may spread to the entire arm or leg, even though the injury might have only involved a finger or toe.” It also can involve “increased sensitivity in the affected area,” where “normal contact with the skin is experienced as very painful,” notes NINDS.
Jersey began experiencing the pain, which the Post describes as “stabbing” and “a burning sensation in her hand,” just hours after her surgery. “It was alarming and intense — and much worse than the pain that had prompted her to have surgery in the first place,” the article states.
When nothing seemed to ease her pain, Jersey got the impression that the surgeon’s office got tired of hearing from her, she told the Post.
“It was horribly frustrating to be brushed off as a hysteric,” she tells CreakyJoints. To other patients, she recommends: “Insist on an appointment; write down exactly what you feel and where; and get an advocate, like a family member or friend, to go with you. Be informed about CRPS, as I was not. Who knew that this could be a thing?”
Finally, three months after the procedure, a surgical assistant suggested the correct diagnosis. “There is no test to diagnose CRPS; diagnosis is made on the basis of symptoms and after ruling out other disorders,” the Post reports. “Treatment for the syndrome is believed to be most effective when it is begun in the first few months after symptoms appear.”
When the surgeon referred her to an anesthesiologist, William Longton, Jersey was happy to have an explanation, but she interpreted the surgeon’s referral as an indication he was done with her. “I felt ignored and abandoned,” she told the Post. And she was upset that the surgeon’s office hadn’t told her before the surgery that this was a possible result.
She was also angry at herself for her lack of skepticism about surgery, and for not trying other things first, she adds. She tells CreakyJoints that of course it’s a lot to ask of a patient to be more skeptical of the experts, particularly since a coworker had undergone the same surgery and “raved about how wonderful the result was,” she says.
“I think healthy skepticism is required, especially for older people,” she says. “Foreknowledge that CRPS could occur should keep pain sufferers from making poor decisions.”
After receiving injections in her neck, which block nerves and may ease pain, her pain dropped to a “manageable level” nine months after the surgery, the Post reported. But several months later, she experienced severe abdominal pain. (Dr. Longton believes that pain is separate from the pain in her hand.)
Since her first diagnosis, she tells CreakyJoints, her CRPS has spread to her shoulder (“frozen shoulder”), stomach (“visceral hypersensitivity”), and back. “I live with constant pain, alleviated by medication,” she says.
Although Dr. Longton didn’t think her stomach pains were CRPS, her neurogastroenterologist disagreed, and Jersey thinks the CRPS has spread throughout her body.
“I would like to have my experience with visceral hypersensitivity brought to light, as I think it is very compelling in its own right,” she says. “I ended up at Stanford’s ER and received a night-long infusion of lidocaine. This literally saved my life, because the pain had become so intense that I considered suicide.”