How do pain patients feel they are treated by their doctors and pharmacists?

“I have to practically beg for pain relief medicine that I am constantly told they can’t legally give me.” “My doctor is more worried about the DEA than about treating me.” “My pain management doctor treats me very well. My pharmacist treated me like a drug seeker.” “Either they don’t believe my pain is real or they just don’t care. Either way, I wish I was dead.”

Those are some of the responses in an online survey of pain patients conducted by the National Pain Foundation. The survey was available on the National Pain Report over the last three weeks and attracted over 300 respondents, all of them self-described as chronic pain sufferers.

Over half (53%) said they were treated “well” or “very well” by their current pain physician during appointments.

Another 25% said they were treated “fairly” and 21% indicated they were treated “poorly” or “very poorly”.

Respondents also expressed plenty of frustration about their former physicians — indicating it takes time and effort to find the right doctor.

The vast majority — 82% — said they had stopped seeing a doctor because they were “treated poorly”.

Most patients (71%) had seen four or more physicians to treat their pain and 20% had seen a whopping ten or more doctors.

“Of all the doctors I’ve seen, only two heard me and understood. The rest assumed I was there for drugs,” wrote one pain patient.

Survey respondents did say that pain physicians and pain nurses treated them better than doctors and nurses in other specialties. About 40% indicated their (non-pain) physicians and nurses treat them “much worse” or “slightly worse” than their pain management practitioners.

Many pain sufferers spoke about their frustration in finding the right doctor.

“I’m treated well by my pain doctor now, but I never will go to the ER (Emergency Room). Non-pain docs need education,” said one.

“I have a wonderful team of doctors, but it took 10 years of being treated poorly before I was diagnosed,” wrote another.

That’s a theme that the Chair of the National Pain Foundation has been stating for years.

“Medical schools need to do a much better job of preparing physicians on how to both diagnose and treat pain,” said Daniel Bennett, MD, an interventional spine and pain surgical physician in Denver, Colorado.

Patients Worry about Pharmacists’ Perceptions

While generally liking their current physician, respondents are uneasy about how they are perceived by pharmacists. Over half (52%) said that they are “concerned that I may be viewed as a drug addict” and 29% were concerned that they might be “embarrassed” by their pharmacist.

“I have been degraded, humiliated, called a drug addict, told I take enough meds to kill an elephant,” said one survey respondent.

“The major issue is the pharmacy. Often have to go to several to find the one that will fill,” wrote another.

“This comes as no surprise given the plethora of media attention on prescription pain medicine abuse, addiction and death,” said Bennett. “The vast majority of people who use pain medicine need it and they should not be treated any differently than someone filling a prescription for an antibiotic or an antidepressant..”

While many patients were worried about how they were perceived by pharmacists, nearly two-thirds (62%) said they were treated “well” or “very well” by their pharmacist.

Fibromyalgia Survey Next

Nearly one in three respondents said they suffer from fibromyalgia.

“We will devote our next survey to asking fibromyalgia patients about some of their experiences with their physicians and with medications prescribed to treat their symptoms,” said Dr. Bennett.

The National Institutes of Health estimates that 5 million Americans suffer from fibromyalgia, a poorly understood disorder characterized by chronic deep tissue pain, fatigue, headaches, depression, anxiety, and lack of sleep. There is no known cure and the disorder is difficult to treat.

“We’re happy that the National Pain Foundation will explore the fibromyalgia experience for pain patients,” said Pat Anson, Editor of the National Pain Report. “When we do stories on fibromyalgia and ways to treat it, the number of page views notably increases. These people are looking for answers.”

The fibromyalgia survey will be available online on Thursday, March 13. Results will published in mid- April.

83% of the respondents in the current survey were between the ages of 35 and 64, and the survey attracted much more response from women than men (80% to20%).

Again Dr. Bennett wasn’t surprised.

“The issue of women in pain is a growing concern among pain physicians,” said Dr. Bennett. “We will be looking at some of those issues in future National Pain Foundation surveys.”