Harriet’s Story: Stopping Opioids, Regaining a Life
Eighth in a series
On an otherwise ordinary day in 1999, Harriet was driving home from work on Interstate 295 when the vehicle in front of her slammed to a stop.
In a fraction of a second, as Harriet’s car hit the other one, an airbag exploded into her face. The impact launched her into a journey of pain and opioid addiction that lasted five years.
By the time she was able to wean off the opioids, find pain relief and rebuild her life with the help of a MossRehab doctor, Harriet had endured not only intense pain but also disability that left her isolated and at times unable to walk, eat or sleep.
Harriet, a South Jersey resident in her 70s, agreed to tell her story to help others realize that opioids are not the only way – often not even the best way – to treat chronic pain.
Now, she says, “I always tell my doctors I want to avoid narcotics if possible. I hate what they did to my body.”
At first, the problem she had after the accident wasn’t pain but “terrible congestion” in her nose. To fix that problem, she had a series of surgeries at an area hospital – procedures that work and don’t cause lingering pain for most people. In her case, she says, the last surgery triggered “excruciating” facial pain.
“I called up the doctor and I asked for narcotics because the pain was so bad and they prescribed probably Percocet or something like that,” she recalls, referring to a brand name for oxycodone plus acetaminophen. “Then the pain spread to the rest of my body.”
Complex Regional Pain Syndrome
Harriet had complex regional pain syndrome, a difficult-to-treat condition that develops after an injury or other trauma, sometimes even a heart attack or surgery. The cause is unclear, but is believed to be related to a disruption of the nervous system. (See “Why We Feel Pain and Why It Can Last So Long.”)
Harriet had to quit her job as a health-care professional as her life shrank into a daily struggle against pain.
She took “heavy doses of steroids” as well as – at various times – the opioids Percocet, Dilaudid, fentanyl and methadone.
“I couldn’t eat and I couldn’t talk,” she says. “The pain was so bad they had to put me on a feeding tube, and then I was fed through a vein. I was down to 68 pounds.”
Along the way, she lost touch with many friends. “Some of them deserted me,” she says. “My whole life was watching the show Criminal Minds because the mystery was the only thing that could distract me from the pain.”
Eventually, even the opioids didn’t help. Harriet believes she had developed opioid-induced hyperalgesia, an oversensitivity to pain caused by opioid use. They also caused terrible constipation and turned her into “a zombie,” she says.
Harriet visited a psychiatrist who tried some techniques to reduce her pain sensitivity, but for her they didn’t work. The psychiatrist then referred her to Leonard Kamen, DO, a physiatrist and pain specialist at MossRehab.
Reducing Opioids, Adding Other Medications
Dr. Kamen recommended a program of treatments to wean her slowly off high doses of opioids. He introduced non-opioid medications to decrease her pain hypersensitivity. They included dextromethorphan, best known for its use in cough medicines, and mementine (Namenda), often prescribed for dementia. Both drugs also can help relieve nerve-related pain.
As those two drugs helped manage Harriet’s pain, Dr. Kamen also prescribed decreasing doses of Suboxone, a medication used to treat pain, opioid dependence and withdrawal symptoms. It combines two drugs: buprenorphine and naloxone. Buprenorphine is a newer opioid that blocks euphoria, the drug “high,” and has less risk of abuse or breathing problems. Naloxone blocks opioid effects and is also used by itself to reverse an overdose.
“Suboxone is a strip that you put under your tongue,” Harriet says. “I would cut it into tiny little strips, all the same size. So instead of taking the whole thing, I took seven-eighths of it.
“And I would keep it at that level for a week and then the next week six-eighths, and keep it at that level for a week until I was down to nothing. But it wasn’t easy.”
With the help of a MossRehab speech therapist, she was able to get rid of the feeding tube and gradually learned how to eat again. She also has done physical therapy.
New Life and a Regime That Works
Now Harriet takes gabapentin (Neurontin) for lingering nerve-related pain and uses a heating pad; celecoxib (Celebrex), a prescription nonsteroidal anti-inflammatory drug (NSAID); and an over-the-counter cream, Penetrex, for arthritis pain. She also takes naltrexone, a non-addictive medication that is used in larger doses to treat substance abuse.
But no more opioids.
And she has her life back. “I go out to lunch with friends, I’m in two book clubs, I’m active in our synagogue, and I’m in the American Association of University Women. My husband and I take classes together at Rowan University. And I do my exercises at home.”
Harriet urges others to realize that they can get off opioids, too. “Definitely see a pain specialist, look for an online support group, and don’t be discouraged. And if you slip, it’s not the end of the world. You just get back on it.”
“It was gratifying to see Harriet slowly return to talking instead of writing questions and integrate her intellect and personality into taking charge of her life again,” Dr. Kamen says.
“Interaction between a motivated patient and physician is critical to success in recognizing and treating these complex pain and medication-induced problems.”