Engineering a Better Life Despite Pain
By Audrey Ingram
Preksha Gupta is a bright, bubbly, 23-year-old mechanical engineer. By day, she tackles research and development for a medtech startup in California. Off the clock, you might find her exploring the city, reading a good book, or tinkering away on a side hustle developing a patented patient-care device.
You might never know she lives with complex regional pain syndrome, a chronic illness characterized by severe neuropathic pain that is sometimes referred to as the “suicide disease.”
Her new life is hard won, the culmination of a years-long battle with the medical system that taught Preksha how to advocate for herself, even when it hurt.
A CHANGE OF PLAN
Preksha first experienced pain in her knee at age 18. She was a college freshman in Boston with a bioengineering major.
“No one jumps to a tumor as their first conclusion,” she says. “In the beginning, I thought maybe I was walking too much or doing too many things. I noticed that I couldn’t run, but I didn’t really like [running] anyway.”
Two weeks before her sophomore year of college, she got an X-ray that found a growth in her leg, and everything changed.
In September 2019, two days into her new academic year, she was officially diagnosed with giant cell tumor of bone. The mass was noncancerous, but growing aggressively, so she was scheduled for immediate surgery. She told her friends she’d be back on campus in a week.
The tumor had grown large while Preksha pushed through the pain. When doctors removed it, they used cement and metal plates to help her leg bear weight, a discovery she made when she awoke from surgery. She was sent on her way without so much as a lesson on how to use her new crutches.
“I don’t think they prepare you well in the health care system for things like that—they underestimate the recovery times for people,” Preksha explains. “It’s an insurance game at the end of the day, so they make sure patients leave as fast as possible.”
She did return to campus on crutches a week later, but there was nothing in place to help a student with a disability. When she fell walking to class in the snow and called campus police for help, no one came. Her academic advisors tried to push her to take a medical leave.
She fought through and completed the semester, but her pain didn’t improve. In January 2020, she pressed to see a new surgeon, and he discovered that a small tumor had grown back. Preksha was put on steroids and opioids until her second surgery in February 2020, which removed the metal plates as well as the tumor. She had to take a medical leave because a professor refused to provide online materials so she could keep up on her studies while recovering from her surgery.
Then COVID hit in March. Preksha had to manage her own physical therapy. And that professor wound up developing online materials anyway when all classes went online. “I am still bitter,” Preksha says.
By summer, her right knee was double the size of her left. But even though she had been correct that something was wrong after the first surgery, the people who were supposed to help her simply refused.
“Being a teenager and a female were not good combinations for anyone to take me seriously,” Preksha shares. “No one took my pain seriously after my tumor-removing surgeries.”
The dismissal was pervasive. Many people, including some of her closest friends, called her dramatic. Doctors and physical therapists accused her of overreacting. She overheard medical providers describing her as a “difficult patient” and a “hysterical teenager.” And during one appointment, her surgeon told her to “man up.”
“Once a surgery is done, the surgeon is done with you. Pain is not something anyone wants to treat,” Preksha says. “People like the tumor story better because it ties up in a bow, but with chronic pain—I will always be in pain to some extent, and no one wants to treat or deal with that. You’re a problem student, a problem patient.”
She continued to do her physical therapy exercises. The swelling went down. She returned to school for the fall semester. But when winter arrived, her health rapidly declined.
She took her concerns to a third surgeon. During a 10-minute appointment, he scribbled down a note—complex regional pain syndrome—and handed her the piece of paper without explaining the disease.
Complex regional pain syndrome (CRPS) is a form of chronic neuropathic pain that typically develops after an injury, surgery, stroke, or heart attack. The pain is out of proportion to the severity of the initial injury, and its cause isn’t clearly understood.
Preksha experienced extreme sensitivity to touch, where even a fabric draped across her leg would burn. She turned to over-the-counter medications to treat the severe pain, wanting to avoid the side effects she previously had experienced when taking opioids.
By July 2021, she was fully bedridden.
“There were nights I fainted from the pain, alone in my dorm room,” she recalls. “I could have called emergency services, but what would they do? CRPS is one of the most complex pain diseases in the world, and there’s no one right answer because different things work for different people.”
Preksha started to pursue alternative, holistic therapies and treatments. A nutritionist friend helped her implement an autoimmune protocol diet. She began using CBD creams and electrotherapy devices. Scrambler therapy, a treatment that uses electronic stimulation on the skin to overwhelm nerves that have been transmitting chronic pain information to the brain, dropped her pain from an 8 or 9 to a 2 or 3. But the treatments were expensive and far away—she had to get a hotel room each time she went—and the results wore off after a month or so. And as the weather cooled again, her pain levels began to ratchet up in proportion.
Preksha was able to finish her degree. In December 2022, she moved across the country, sight unseen, to take a job and start building a new life on the West Coast.
Her first trip back home reiterated the impact cold weather had on her pain: Her mobility quickly declined, and her pain levels flared.
“I didn’t want to move across the country, but when we’re talking about that kind of pain, there’s not anything I wouldn’t sacrifice to not be in that pain,” she says.
DON’T LOSE HOPE
“Hope is such an interesting thing in the end,” Preksha shares. “You have to change what you’re grateful for, what you focus on.”
The steadier, sunnier weather of California has leveled out many of the highs and lows she faced in the Northeastern climate. She still maintains a strict diet free of grains, legumes, dairy, and sugar. She takes anti-inflammatory medication as needed and has a pulsed electromagnetic field (PEMF) therapy device that mimics the effects of Scrambler therapy. Preksha has also added heated blankets, a grounding mat, and a meditation practice to her arsenal—anything that can help reduce overall stress in the body, she explains.
This combination of treatments, and a vigilant effort to pay attention to her body’s needs, enable Preksha to manage her pain and live life on her terms.
“I want to make my life and existence something where every day is exciting, not something you dread. I’ve always wanted to make a bigger impact,” Preksha explains.
She’s already begun: her first patent is for a temperature-regulating device for people living with neuropathic conditions. She and her team, who have been collaborating on the project since she was in college, are working to bring the device to market and get it to patients who could benefit.
“My experience as a patient has made me a significantly stronger engineer,” she shares. “I’m more passionate as a person because I had to be. I had to decide it was worth living. What kept me going those painful nights was that someday I’d be out of the pain, and I’d do something bigger than myself.”