Tougher regulations keep meds from patients in need

Woman with Ehlers-Danlos syndrome defends needing over 90 days of pain pills

By Haley Hernandez - Health Reporter

HOUSTON - In the United States, experts said, there are 91 overdose deaths each day from opioid abuse. This week, the Centers for Disease Control and Prevention said that figure might be an underestimate.

"We have issues with drug overdose, suicide," said Dr. Uday Doctor, with Texas Orthopedic Hospital.

Therefore, the Drug Enforcement Agency is cracking down on pain pill prescriptions, forcing pharmacies to stop giving out drugs such as Vicodin or Lortab to anyone needing more than a 90-day supply.

"Every ounce of energy that I've got is going to go to my daughter," said Rosie, a 26-year-old mother from Cypress.

She defends herself needing more than 90 days of pain pills. She suffers from Ehlers-Danlos syndrome that causes chronic, debilitating pain. She said not allowing her access to pain pills is doing more harm than good.

"I turned in a prescription that was the exact same amount. It was for the same medication that I've been getting for, I think, four years and it was put on hold," she said. "I've had the same pharmacy for six years and suddenly there was great scrutiny ... comments were being made that I didn't look disabled. I didn't look like I should have access to it and so my file was flagged. All in all, it took six weeks to get the prescription filled."

Rosie said it was an abrupt stop, which she considers dangerous, knowing the potential side effects of quitting narcotics suddenly.

Due to her EDS, Rosie has undergone 12 operations. She has early osteoarthritis and her joints constantly dislocate.

"It's daily. Daily dislocations. You get used to them and that's why you have a level of chronic pain that never goes away," Rosie said.

The Texas Medical Board states doctors are protected from legal action when writing prescriptions in good faith. Rosie said her problem is not with doctors, but with pharmacists.

"No one with chronic pain wants to be taking opioids ... We don't like them. We resent the side effects. But there is no other option yet and if there is no other option and no other way to get out of bed in the morning, you're going to take it," she said.

Doctor said the restrictions are necessary to stop the spike in overdose deaths linked to opioid abuse.

"One of the reasons that narcotics is used incredible amounts in this country is because they never come up with a diagnosis. They never eliminate the pain so they continue on narcotics," he said.

Doctor recognizes the broad approach of a government crackdown on opioid access can hurt the chronically ill, including cancer patients and patients such as Rosie.

He believes, however, that in other typical cases, pain originates in the spine and can be treated without drugs.

"If you've had surgery, for the first three or four weeks, and even in those cases after three or four weeks, you've got to get them off of narcotics because all it takes is three or four weeks before you start getting addicted," Doctor said.

For Rosie, the challenge of getting pills to manage her pain became a bigger ordeal than her illness. So she stays at home now, unable to work without medication.

"I have a lot of hope that they're going to come up with something better," she said.

She tolerates the pain by meditating, using ice and heat and taking regular breaks.

"I only have so much energy in my day and I'd like to give it to my daughter. I'd like to give it to my family. I don't want to spend my time and energy having to defend myself," she said.

There are studies that show constant, high levels of pain over time can shrink the brain while creating or worsening fatigue, insomnia, depression and obesity.

If anyone is facing challenges with a provider, there are some patient advocacy groups that are recommended by the Academy of Integrative Pain Management. These groups are:

- U.S. Pain Foundation
- National Fibromyalgia and Chronic Pain Association
- The Pain Community
- International Pain Foundation
- American Chronic Pain Association

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