A Frustrating, Determined Search for Answers
In 2004, Kristina Bailey was driving home from work by herself in Durham, North Carolina, when she was in a bad car accident. The driver behind her reported that she swerved off the road. She hit a telephone pole, knocking out power to the road and totaling her car. Kristina doesn’t know if she lost consciousness before the accident or because of it, but she hit her head, and when the ambulance arrived, she was having a seizure.
She was in Duke University Hospital for three days, and doctors put her in a medically induced coma because of bleeding and swelling in her brain. The neurologist at the hospital couldn’t find a cause for her loss of consciousness or seizure. Kristina still thinks about that accident 18 years ago, wondering if it’s the cause of her neuropathic pain today.
“I don’t know if I am getting multiple sclerosis or lupus, or if maybe these symptoms are an after-effect of that head injury,” says 39-year-old Kristina, living in South Carolina. “I’ve been fighting, trying to get some sort of diagnosis.”
For the last four years, she’s gone to more than a dozen doctors: primary care physicians, neurologists, psychiatrists, therapists, and a rheumatologist. After two brain MRIs, countless blood tests, and several medications, her doctors have yet to identify a reason for the neuropathic pain Kristina is experiencing.
“I don’t know what’s causing it,” she says. “It just comes and goes when it wants to.”
Kristina consistently experiences numbness, more prominently on the right side of her body. The right side of her face is numb, including her tongue and lips. She has burning in both hands, along with arthritis in her joints. She also has chronic upper and lower back pain. Her nerve pain feels like crawling sensations around her shoulders, phantom water drops on her legs, and strange sensations in her feet.
“If I’m walking around barefoot, I feel like I have socks on when I don’t,” she says. “And sometimes they will just get tingly, like when you sit the wrong way. But it comes out of nowhere.” At other times, her feet feel itchy, as if she’s been bitten by ants.
The random and sudden occurrence of her symptoms makes it hard for Kristina, a wife and mother to a 13-year-old son, to plan activities or work. Her pain level varies, and she hasn’t found any patterns or triggers, except stress. Her anxiety further affects her well-being. She experiences panic attacks, and sometimes she’s been unable to get out of bed for days at a time because of anxiety, pain, and medications that made it difficult for her to function normally.
Kristina can no longer take the online continuing education classes she was completing to learn medical billing. She hasn’t been able to volunteer at her son’s charter school. And she had to stop working after the initial development of her neuropathic pain in 2018 while she was cleaning her landlord’s house—a work exchange that was allowing her to pay lower rent at the time.
“If I went and cleaned her house on a Wednesday, it would take me literally two days to recover to be able to do it again,” Kristina says of the pain and fatigue brought on by the repetitive motions of vacuuming and cleaning. “It gradually got worse to the point where I could barely move at the end of the day.”
MORE APPOINTMENTS, NO DIAGNOSIS
Despite numerous visits to doctors, Kristina’s blood tests and scans haven’t revealed a cause for her neuropathic pain. She’s been told she doesn’t have fibromyalgia, rheumatoid arthritis, or multiple sclerosis. She has been told, though, that her symptoms are psychosomatic and that she has bipolar disorder—later determined to be a misdiagnosis.
“They have told me it’s all in my head. I know for a fact that there’s something going on in my body that’s not right,” she says. “It’s not all in a person’s head. Why would anyone want to live like that?”
Kristina doesn’t feel like she’s been taken seriously by doctors, especially by male doctors who have suggested that she’s overly emotional or made her feel dismissed and stupid.
One visit to a male doctor was particularly hurtful. After a recurring rash on her torso that came back after a round of oral steroids, Kristina was “told that I probably have AIDS, and I have been with the same man for almost 15 years.” The doctor said this without a blood test and without referring her to a derm Kristina and her dog, Joot. atologist to help diagnose the rash, she says. The experience left a lasting, negative impression.
“I had never felt so bad for that man to look at me and say that the way he did,” she says. “I don’t think people should be treated like that. They’re going for help. There was a different way he could’ve said it, even if he did think that was what it was.”
Despite her adverse experiences with doctors, Kristina hasn’t given up on finding answers.
In recent months, Kristina started seeing a new care manager, primary care physician, psychiatrist, and neurologist. She also started taking a selective serotonin reuptake inhibitor again for panic attacks, which relaxes her and feels like a positive step after antipsychotic, antidepressant, and nerve pain medications didn’t help.
She is learning to cope, bit by bit. She tries to eat well, get enough sleep, and pace herself, and she’s learning to ask her husband for help.
Her husband John, who works as a foreman for a landscaping company, offers support by doing the laundry and cleaning, but learning to communicate with him about her pain has been a process, Kristina says. Initially, it caused friction in their relationship.
“The longer that it’s been going on, the more he’s kind of opened his eyes to the possibility that there is something actually wrong,” Kristina says. “So, it’s gotten a little bit better between us.”
Before her symptoms started, Kristina says she was full of energy, creative, easygoing, and happy. And her home was spotless. Now, she is unable to drive her son to school some days, she keeps her house presentable but can’t do a “deep cleaning,” and she gets terrible back pain from standing in the kitchen while cooking meals.
It’s been difficult for her to see how her health impacts her family, because being there for them is the most important thing to her. “I just want to be the best mom and wife I can be,” she says.
FOCUSING ON SIMPLE PLEASURES
Living with chronic pain has taught Kristina to appreciate the little things in life. She enjoys reading paranormal and psychic books—medium Kim Russo’s book Your Soul Purpose is a favorite. Music lifts her spirits, and she gets energy from listening to Britney Spears, Nirvana, Green Day, Nikki Minaj, and Lady Gaga. And she loves being with her dog Joot, a white pit bull and beagle mix who follows her around the house and opens doors for her.
She found a group of friends online, which she says is pretty awesome, because her anxiety makes it difficult for her to talk to people in person.
Talking to friends or to her therapist has offered new perspectives. Four months ago, her new psychiatrist said that her panic attacks brought on by driving are caused by post-traumatic stress disorder related to her car accident back in 2004. This diagnosis felt like progress, an explanation for the way she feels emotionally that makes sense.
As Kristina continues to search for answers to account for her physical pain, her advice to other people in a similar situation is not just lip service; her words of encouragement are also the positive messages she is following herself.
“Keep your head up. Don’t ever give up,” she says. “If your doctor isn’t listening to you, change your doctor. You know your body, not them.”
“They have told me it’s all in my head.
I know for a fact that there’s something going on in my body that’s not right. It’s not all in a person’s head. Why would anyone want to live like that?”