Pain Stories: Dania Palanker
45 year old Dania Palanker has lived with pain for most of her life. At 14, her knee swelled so badly that she couldn’t bend her leg. In her early 20’s, she had debilitating pain in both hands and wrists. By her late 20s, Dania began to suspect that these were not isolated incidents. It was then that a Physiatrist diagnosed her with fibromyalgia, a disorder characterized by widespread musculoskeletal pain, and prescribed both a low dose of Oxycontin, an opioid painkiller, and Lyrica, a medication used to treat nerve pain.
“I feel very intense pain pretty much everywhere in my body,” she says. “There’s pain that impedes on your quality of life and there’s pain that impedes your life.”
– Dania Palanker in Vox article.
After receiving the diagnosis, Dania wept in her car – feeling both validation of her pain and anxiety about what it might mean. She was working in advocacy at the time, and had always planned to go to law school. The diagnosis was a wake-up call: she decided she needed to go immediately in case her condition got worse.
But it was only a couple years ago in 2017, when Dania got more conclusive diagnoses of the reason for her ongoing pain. Abnormal results on skin biopsies and nerve conduction studies led to the dual diagnosis of small fiber neuropathy, which arises from damage to the small nerves just beneath the skin, and chronic inflammatory demyelinating polyneuropathy, which stems from inflammation in and destruction of the protective covering of the body’s nerves. Both are extremely painful conditions.
“like a sunburn lurking just beneath her skin… as if someone were digging into her body with a knife.”
Dania experiences a variety of pain sensations. The pain covering the right side of her face and body feels like a sunburn lurking just beneath her skin. In her pelvis and hips, she has stabbing, slicing pain, as if someone were digging into her body with a knife. And Dania has whole body pain. “At times, I hurt everywhere,” she explained, “I hurt so much that I just want to lie down.”
Her pain limits Dania’s ability to do a lot of things. “I don’t need help with personal care,” she explains, “I can shower and I can dress myself. But I can’t lift my child or hold her as I would wish to. I can’t stand up to do the dishes. I can’t keep the house.” If she exerts, by standing too long, for example, she inevitably spends the next few days in bed. Fortunately, Dania has a supportive husband, who assists with the things she cannot do.
Like others with high impact pain, Dania has made life choices that allow her to juggle pain’s demands. She did go to law school at Georgetown University and got a masters of public policy degree at Harvard University’s Kennedy School of Government, but she chose to work in research because she felt it would be a more controllable environment. Having been in advocacy and under frequent tight deadlines, she learned the hard way that stress intensifies her pain. Dania now works as an assistant research professor at the Center on Health Insurance Reforms at Georgetown University’s Health Policy Institute.
Yet even with access to good medical care, it took 28 years to diagnose Dania’s condition, and a few more years to adequately treat it. Dania is now experiencing a reprieve in the intensity of her pain, due to a new treatment known as IVIG, or intravenous immunoglobin, which is increasingly given for immune and inflammatory conditions. It took a while to find the right dosage, but she is able to work part time, and cautiously hopeful for the first time in years. “I’ve had so many ups and downs in pain, and I hope my current progress holds,” she said, “but who knows.”
Read about Dania’s experiences trying to get pain care during the Covid-19 pandemic, here and here.