It started with a rolled ankle during a routine Army training exercise. Shannon Hubbard never imagined it was the prologue to one of the most debilitating pain conditions known to exist, called complex regional pain syndrome.
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The condition causes the nervous system to go haywire, creating pain disproportionate to the actual injury. It also can affect how the body regulates temperature and blood flow.
For Ms. Hubbard, it manifested years ago following surgery on her foot – a common way for it to take hold.
“My leg feels like it’s on fire pretty much all the time. It spreads to different parts of your body,” the 47-year-old veteran said.
Ms. Hubbard props up her leg, careful not to graze it against the kitchen table in her home east of Phoenix. It’s red and swollen, still scarred from an ulcer that landed her in the hospital a few months ago.
“That started as a little blister and 4 days later, it was like the size of a baseball,” she said. “They had to cut it open and then it got infected, and because I have blood flow issues, it doesn’t heal.”
She knows it’s likely to happen again.
“Over the past 3 years, I’ve been prescribed over 60 different medications and combinations; none have even touched the pain,” she said.
Ms. Hubbard said she’s had injections and even traveled across the country for infusions of ketamine, an anesthetic that can be used for pain in extreme cases. Her doctors have discussed amputating her leg because of the frequency of the infections.
“All I can do is manage the pain,” she said. “Opioids have become the best solution.”
For about 9 months, Ms. Hubbard was on a combination of short- and long-acting opioids. She said it gave her enough relief to start leaving the house again and doing physical therapy.
But in April that changed. At her monthly appointment, her pain doctor informed her the dose was being lowered. “They had to take one of the pills away,” she said.
Ms. Hubbard knew the rules were part of Arizona’s new opioid law, which places restrictions on prescribing and limits the maximum dose for most patients. She also knew the law wasn’t supposed to affect her – an existing patient with chronic pain.
She argued with the doctor, without success. “They didn’t indicate there was any medical reason for cutting me back. It was simply because of the pressure of the opioid rules.”
Her dose was lowered from 100 morphine milligram equivalents daily (MME) to 90, the highest dose allowed for many new patients in Arizona. She said her pain has been “terrible” ever since.
“It just hurts,” she said. “I don’t want to walk, I pretty much don’t want to do anything.”
Ms. Hubbard’s condition may be extreme, but her situation isn’t unique. Faced with skyrocketing drug overdoses, states are cracking down on opioid prescribing. Increasingly, some patients with chronic pain like Ms. Hubbard say they are becoming collateral damage.
New limits on prescribing
More than two dozen states have implemented laws or policies limiting opioid prescriptions in some way. The most common is to restrict a patient’s first prescription to a number of pills that should last a week or less. But some states like Arizona have gone further by placing a ceiling on the maximum dose for most patients.