Pain Requires New Path for Retired Doctor
Sharon Berenfeld has been on the same opioid medication for more than two decades to treat chronic neuropathic pain. But after she moved to Nashville, Tennessee, four years ago, a new pain management doctor didn’t take her pain seriously and refused to write her a prescription.
Choking back tears, she felt at the mercy of a doctor who didn’t know her or her story. Instead, she says, she was treated like a criminal.
“He said, ‘If you think I’m just writing your prescriptions, you can leave.’ So many doctor appointments made me feel like a drug addict rather than a cancer survivor living with pain,” Sharon says.
Sharon, a 62-year-old mother of two sons, takes two opioid pills a day to treat chemotherapy-induced peripheral neuropathy (CIPN) in her left leg. In 1998, when she was 37 years old and her sons were babies, she was diagnosed with non-Hodgkin’s lymphoma. Her chemotherapy left her with lasting nerve pain in her left leg.
“Chemo kills all sorts of things. It can be neurotoxic. In my case, it fried my nerves,” she says.
Sharon couldn’t return to work because she couldn’t stand for more than 20 minutes at a time or walk very far. The chronic pain changed her entire life.
“I call my CIPN my consolation prize for surviving cancer,” she says. “I survived cancer but lost my identity and career.”
A LIFE ALTERED
Before her chronic pain developed, Sharon was a doctor at a thriving internal medicine practice in Cooper City, Florida. But life after cancer with CIPN looked much different. Her marriage ended in a messy divorce when her ex-husband began stealing and using her opioids. She raised her sons on her own as a single, disabled mom. CIPN robbed her of the life she had planned.
“I wasn’t able to run, hike, travel, or play with my kids the way I wanted to,” she says. “There’s so much I wish I could’ve done.”
Sharon experiences constant nerve pain between her foot and knee. While she is on medication, she describes her pain level as a three, but when it wears off, it can get to a 10.
She describes the pain like a cheese grater on her shin or a blow torch burning her lower leg. Even the feeling of water or a bedsheet on her leg hurts. It’s worse when she’s walking or sitting in a car; her leg needs to be elevated in a chair, recliner, or bed. The continual pain makes everyday life difficult, and she never knows how bad it will be from hour to hour.
“It’s awful. It has taken so much from me,” she says. “I wouldn’t wish this on my worst enemy.”
CIPN isn’t the only chronic pain Sharon experiences. She also has neuropathy above her left knee due to transverse myelitis, inflammation related to a lesion on her spinal cord, likely due to the autoimmune disease Sjogren’s syndrome; she takes an anticonvulsant medication for this nerve pain. And since having a second blood clot in 2017, her entire right leg is affected by post-thrombotic syndrome, which causes the leg to swell three inches larger than her left.
Over the years, people around Sharon have questioned why she stopped working or why she uses an accessible parking space. Chronic pain—the fact that the pain doesn’t go away—is a difficult concept for other people to understand, she says. It’s been painful emotionally for her to be misunderstood or mischaracterized as lazy.
“I have lost many relationships because of my pain and my limitations,” she says. “Invisible pain is terrible. I’ve often wished for some type of device that could show others the severity.”
Over the years, Sharon has tried various medications and procedures. Adjuvant pain medications, which include various forms of non-opioid pain relief, either did not help or caused too many side effects. Spinal stimulator trials, where an electrical device is put near the spinal cord to override pain signals, failed twice. And myofascial release hurt too much.
She’s found some things to be helpful, though. Restorative yoga lessens the intensity of her pain, and strength training exercises above the waist take her mind off her lower-body pain and stimulate blood flow. Talking to a psychologist has improved her mental health, validated her feelings, and encouraged her to consider new perspectives. She also gets an emotional boost from her sons, now in their 20s.
“Both kids are musicians, and my greatest joy is watching them play, write music, and watching their bands perform,” she says.
A REIMAGINED LIFE
While Sharon’s chronic nerve pain completely changed the course of her life, she’s managed to find a few silver linings.
She recognizes that if she had continued working as a physician, she would have been working 80-hour weeks, with less time with her sons. Instead, she got to raise her sons herself, instead of leaving them with a caretaker.
“They see how I must live, and they are certainly more aware of people living with an illness,” she proudly says of her empathetic sons.
Sharon may not have been able to travel to Italy with her children as she once dreamed, but she found ways to create special family moments as they were growing up. On evenings when she was in too much pain to cook, they’d have a pizza party in bed. For vacations, the family went on cruises to the Caribbean, which was easier since activities happen all in one place.
She also feels fortunate that she purchased private disability insurance before she got cancer. This saved her financially, she says.
Living with chronic pain requires constant preparation. When Sharon goes shopping, she brings a cane. When she’s not home, she needs a plan for how she’ll take care of herself if the pain worsens. And when she makes social plans, she tells people upfront that there’s a likelihood that she may need to cancel, depending on how she’s feeling.
MEDICATION ACCESS BARRIERS
One of Sharon’s biggest sources of frustration is getting her medication each month. Since she takes an opioid, her medication is monitored. Her 30-day prescription can only be refilled 24 hours before it runs out. This is a problem when the pharmacy is out of stock, if it’s a holiday, or if an emergency prevents her from getting to the drugstore.
“Getting the meds filled every month is a hassle. It’s very anxiety-provoking,” she says. “Your whole life revolves around your fill date.”
She’s also required to see a pain management doctor in-person once a month, where her remaining pills are counted, and she is subject to random drug screenings. She must sign an extensive “pain contract” with 40 questions agreeing to strict stipulations, including that she can be called in for evaluation with just 24-hours’ notice or lose her right to medication. She says that the 2016 CDC Guideline for Prescribing Opioids for Chronic Pain aimed at reducing opioid overdoses and deaths has resulted in a level of oversight that is very stressful and at times inhumane for individuals with chronic pain who need the medication.
For example, when her father was dying in Florida, she had to fly back to her home state just to refill her prescription. “It’s not fair,” she says “I [shouldn’t have to] leave my dying father’s bedside to go get my prescription that I’ve been on for 20 years.”
A DOCTOR’S ADVICE
Sharon recommends that other individuals in a similar situation take a proactive approach by getting to know their pharmacist and calling the pharmacy a week before their medication is needed to be sure it’s available.
As a chronic pain patient, Sharon’s advice to others is to bring someone with you to every doctor visit so they can take notes and help you advocate for yourself. She also emphasizes the importance of listening to your body and asking others for help.
As a retired doctor, Sharon offers this advice for physicians, especially dismissive doctors who are quick to judge their patients’ medication usage: “Believe your patients. Nobody wants to have pain.”