Chronic pain patient stories: Withdrawal, pain and fear
For our story on chronic pain patients being terminated from their opioids as a result of the opioid crisis (see p. 1), we put out a call on Twitter, where these patients are very active, and received many responses — too many to include here. The responses came via email, and we had a back-and-forth with the patients to focus on what their prescriber gave them as the reason for being discharged. These patients were not drug-seeking, except to the extent that they needed medications to stay out of pain.
- A patient in Massachusetts is being forcibly tapered from opioids because she is a medical marijuana patient. Her doctor said the Drug Enforcement Administration (DEA) would “take his license if he continues to prescribe my low dose of opioids.” The marijuana helps to keep her opioid dose low, she said.
- A patient who had been getting opioids from a pain management clinic was told that the clinic had to close because of the Centers for Disease Control and Prevention (CDC) guidelines. “They no longer had a business model that could break even,” she said, and all patients and staff were given a month. She moved in order to try to keep access to care, but still had to be driven 10 hours a day once a month for the past three years.
- A patient in Texas had been on 40 milligrams of OxyContin three times a day, but a year ago, the insurance company, United Healthcare, notified the pain specialist that it would no longer cover that medication. She was forced to switch to Xtampza, and then, state regulations forced a second change to Opana. Ultimately, she lost insurance and was forced to change to methadone. Each time there was a change, the dosage was reduced. She has “a good doctor who honestly tries, drug tests regularly for any sign of abuse, but he follows every regulation and recommendation to the letter.” The patient’s husband says the doctor is “literally law-abiding my wife to death.”
- One patient with chronic pancreatitis — Lauren Deluca, who is the founder of the Chronic Illness Advocacy & Awareness Group Inc. — was told by her primary care provider that “I will not lose my license for you or anyone else,” and that she had detoxed almost all of her opioid patients off the medications. The doctor did prescribe 5 milligrams but said she would never do it again. “I only got this because I literally begged,” the patient said. When she went to pain management clinics, she was also told that opioids would not be provided. Apparently, one doctor had summed her up as a pill seeker, and said the most likely reason for the chronic pancreatitis was long-term opioid “abuse.”
- A patient in Maine who was forced to taper from opioids by her pain management physician of nine years was told he was afraid of the DEA and the medical board. This started three years ago, when the doctor told her he didn’t think she should be tapered. “In hindsight, I believe he was coached to placate his patients and that he was given step-by-step instructions as to how to mitigate his patient’s emotional responses in order to alleviate his stress,” the patient told us. When it became apparent that the CDC guidelines were going to become the law in Maine, he continued to lower her dose, to 100 MME by last July. “At my last visit, he told me that just because I have intractable pain it doesn’t give me the right to opioid pain medications for the rest of my life,” she said. “He now believes a dose over 100 MME is ineffective in abating pain. He also said he cringes every time he writes an opioid prescription and asks himself why he even bothers.”
- “I lay in bed with a heating pad and just cry.” This is from Rebecca Dauber, who has chronic pancreatitis and has been a pain patient for 16 years. “Without the pain relief I get from taking Vicodin, I don’t have quality of life,” she said. “There is a huge difference between being addicted and being dependent. I don’t need them to get high; I depend on them to have some relief so I can have a somewhat normal life.” She was told that the reason her medication was being cut off was her insurance company, Amerihealth Caritas. She lives in Pennsylvania, and cannot afford to pay out of pocket for the medication. “We have signed pain contracts with our primary care doctors, pain management doctors agreeing that we only get our pain meds from them,” said Dauber. “We go through urine testing as if we are druggies, treated like drug seekers if we end up at an ER and then we are turned away from the ER because it’s all in our heads, yet we are doubled over from pain, crying and passing out because of the amount of pain we are in.”
- A 60-year-old patient with spinal stenosis/sciatica and osteoarthritis on disability since 2012 was abruptly terminated from her opioids. Her primary care doctor’s reasoning: opioids were “no longer indicated or effective for long-term chronic pain.” The pain specialist she was referred to gave her Tramadol and Zanaflex prescriptions, but the primary doctor discontinued them. The primary care doctor then told her Lyrica, a STIM implant, and a laminectomy were her only options. When taking the opioids for pain control, she could walk up to three miles a day and manage activities of daily living. Last year, she had surgery for pain relief, but it only worked temporarily. Now she is back on crutches, and is forced to take Lyrica off-label, which has “horrid side effects” and is expensive. She believes that the primary care physician was doing what she was told by the business office. “My life is at a standstill. I can’t drive myself much or have my grandkids overnight anymore. My core strength is gone — can’t exercise at all. Life really stinks right now,” she said. She lives in rural Iowa, where it’s hard finding a new primary care physician; this patient had the same doctor for 25 years.
- A patient in Maryland who had been with the same pain management provider for four years is now being cut back. Prior to pain management, the patient obtained the opioid prescription for six years. The primary care physician sent her to pain management “because he knew the crackdown was coming.” She had been on the same dose of methadone — 60 milligrams divided in three doses daily, plus 30 milligrams of oxycodone for breakthrough pain. She is now down to 40 milligrams of methadone daily. She has pain from scar tissue from bile duct surgeries, spinal stenosis, osteoporosis, failed back and neck surgeries, and a cyst on her lower spine. The pain physician gave the patient two reasons for cutting her back: that she was on too high a dose, and so the physician could “sleep better.”
- One patient was cut off from her opioids abruptly; she had vomiting and diarrhea that was so bad she needed to be hospitalized for rehydration. (This is the likely response of all chronic pain high-dose patients who were abruptly cut off, but most told us that the memory of the withdrawal was overshadowed by the resurgence of pain.)
- A patient in California who takes Tramadol and Flexeril for back pain and sciatica was laid off last year, losing her job and health insurance. When she finally got coverage again, she had to go through a list of plans. Eventually she got back on health insurance, but the wrong primary was assigned, and she can’t get in to see any doctor. “I have yet to see a PCP under Health Net because they first assigned me to the wrong primary and it took 3 months to get to the correct one, and she is backlogged on appointments,” she said. “Our entire health system is a mess; people can’t get in to see their doctors, and when they do they are just basically told to take Tylenol and put ice on it.”
- A patient who had severe spinal injuries from a motor vehicle accident in 2000 “tried everything,” including surgeries. “I accept I will never be the same again but that doesn’t mean I have to die a horrible painful death.” After she was on opioids in a pain clinic setting — 180 milligrams of oxycodone a day, which enabled her to function well — the clinic reduced her to 60 milligrams, “which I’m still trying to adjust to,” she said. The reason for the tapering was the CDC guidelines, she said. Tapering has resulted in her pain going from an average of 4 to a minimum of 8 on the pain scale. “I never had a bad test, never went to the ER. I was a model patient,” she said.
- From Canada: a patient who needed morphine for ovarian hyperstimulation syndrome was forcibly tapered off it, halving her dose on a weekly basis over a period of four weeks, leaving her in “bedridden agony” for the condition, which would take several months to resolve. The reason, according to her doctor: “We’ve created too many opioid addicts from overprescribing, and it is our responsibility to make sure that does not happen to you.”
- A 54-year-old patient in Florida with fibromyalgia, osteoarthritis, herniated discs and an injured spine from a car accident had been taking 120 Lortabs a month. Her physician referred her to a pain physician, who wanted her to have spinal injections, but she had a bad reaction to the first one. She went to a second pain physician, recommended by her chiropractor, and was promptly told that she could have hydrocodone, one month of one low-dose pill per day. Her new doctor would not prescribe anything. She is now using Kratom, which helps. “I never considered complaining, but I definitely blame the CDC guidelines,” she said. “He said he doesn’t prescribe pain meds — too much risk.”
- Even people without chronic pain, but with low-level pain that is treated well by opioids, are being affected. Last year when Victoria got rear-ended in her new car, she paid out of pocket for a chiropractor, deep tissue massages and acupuncture. There was some whiplash and lower back pain, but not severe. A few months later, she was given low-dose opioids. When she went back for a follow-up, the doctor said he was going to have to cut her dose. She is now afraid that she “looks like a junkie” and hasn’t gone back out of fear of getting refused more medicine. She doesn’t need it; she has saved some, which she did not take, but she is worried that there will be a flare-up that ibuprofen won’t fix. After stretching every day, paying out of pocket for acupuncture and massages, the pain isn’t that bad, she said. “And I do have some left, so I can’t be an addict!” she said.