Pain Physicians and Pharmacists Panned by Patients in Survey

Pain Physicians and Pharmacists Panned by Patients in Survey

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.”

picture of doctor hands giving white pills and glass of waterThose 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.”

Authored by: Ed Coghlan

There are 16 comments for this article
  1. Jason at 7:50 pm

    I recently discussed this issue with my Pain Doctor last month about the DEA’s intrusion into a field they do not understand. My doctor said it’s an absolute nightmare plus the inexcusable harm that the DEA had created within the entire medical community whom treat chronic pain sufferers. He feels that he should not be under the radar because of his profession and anyone outside of this specialized field need alot of compassion and training when someone who is in chronic pain comes in for help. Most doctors/hospitals and such treat chronic pain patients as drug seekers and low life’s and which is morally wrong to pass judgement on patients whom they just met. It’s the lies and ignorance in the medical community whom are as much to blame for this crisis as the DEA. We then laughed and I said, “Wow 20 years of medical school just to become a drug dealer WHAT A LOAD OF CRAP!

  2. Christina at 1:05 pm

    Hi Joseph I’m not sure what your trying to say on your first comment. But everything I explained that happened in my state of Florida was also featured on one of our local news stations. I’m trying to locate it and will post it to my next reply. When I say share with politician I ment to inform them they don’t know what chronic pain is or what it is to live in it. They are calling the shots for us wether we like it or not. Which I do not like it but we have to get on some common ground to ever see thing change in my opinion.

  3. Joseph M. Symuleski at 3:07 pm

    CHRISTINA, on 29-March-14′, who by the way is in the profession! has said it with the precision of Marine SNIPER. The DEA HAS to GET THE HELL! out of our Personal LIFE. To go through B.S. THEY TRY, is UNCONSTITUTIONAL . For Good GOD MAN, Go Protect the Border, or LOOK for MAN who Harms Another MAN! DO ANY THING except PROMOTE filling JAILS and being COMPLICIT, in a FABRICATED WAR! IF Nothing Else, read THE HARRISON ACT, It States, REGULATE NOT PROHIBIT. And By the way? DID The 18th Amendment WORK? THINK HISTORY? Peace And Love!

  4. Heather at 9:43 pm

    I have tried all the approved and non approved medications used to treat fibromyalgia.They all made me very sick infact 2 of them nearly killed me.Medical Marijuana has been the only thing to help with the pain .With out medical marijuana i would still be in a wheel chair and bed bound.

  5. Christina at 11:43 am

    RPH This is just ridiculous to lock you up and then it gets throw out of court. The DEA is out of hand and why we need laws against this happening again. Frankly after you verify the perscriptions and verifying the doctors DEA number. Check the patients ID and tracking system that they have not filled that medication you should be done PERIOD. I have been asked and then they copy my MRI’s, blood work etc. I think this is degrading that I have to prove to a pharmacist after the doctor that I need theses medications. I know its because their scared and its WRONG that the DEA has made them feel they have to do this. I don’t see it anywhere in the rules. This is why pharmacist have to stand up too. They need patients behind them on how unfair and how profiling should not be part of their daily duties. Checking and verifying should be the end of the line. To have to get a pharmasict to like you to the point of helping you is ridiculous in my opinion. Their are SOME pharmacists out there that have personality issues. That take the power of filing narcotics for someone to another level. I’m begining to think the collecting of records at the pharmacy is a peak into our medical history without them having to obtain a warrant. I have tried other treatments then just medication. I have spent 7000 dollars of my settlement money on these treatment that all failed me. I have a thirteen year old son I’m trying to raise and these days I have to go without medications for as much as ten days at a time. Stretching becomes damn near impossible past five days. It’s making me have no quality of life or my family this is hurting families. I’m very sorry for the loss families have had to deal with from overdose. Sometimes family member should step in and write a letter to their doctors if they see behaviors that may take their loved ones life. If they cant make them see what they are seeing. But to make it damn near impossible for patients to get medications is not the answer. I feel pain mangement need a face lift. I feel that education is needed in pain mangement. Learning about foods that help and hurt you with what going on with your body is needed. Stretching and exercise if it’s possible for your situation should be part of pain mangement. Having massage therapy avaible in your physician office if it’s a benefit for your condition. Not all things will work for everyone but what can help should be offered in house. Now that everyone is forced to go to a pain mangement office it should stop getting a bad reputation because they write the narcotics. That’s what the DEA has forced pain patients to go. Pharmacies not wanting to fill them because thats what they are writing with other medications. We need DEA reform in the United States NOW to protect patients and pharmacist.

  6. Jason Warner at 1:14 pm

    @ Rph,

    I am so angry to here that you were thrown in jail for filling legal prescriptions. For what? So the DEA can use you as a scapegoat, plus a scare tactic? It’s so unfair what is going on. It is such a one sided war, which seems to be the case with everything lately. I actually feel like a prisoner and that I have to prove my innocence. Everything is upside down. It seems that we have all been wrongly convicted without due process , and then we have to prove our innocence. Is it not, :”Innocent until proven guilty? I thought I had read that somewhere.

  7. RPh at 10:30 am

    They are refusing to fill because the DEA and state regulators are arresting pharmacists for filling legitimate prescriptions. I spent nine days in jail and was facing 40 years in prison for filling legal prescriptions for patients with documented physical conditions. The case was thrown out, but not before the damage was done. No pharmacist in their right mind would fill an opiate today for anyone that they do not know personally. If they do, they risk being thrown in prison for a long time. The DEA is beyond out of control.

  8. TerraLee at 12:18 pm

    I have had to detox off of my pain meds because my pharmacy (Walgreens) keeps refusing to fill my valid prescription. I have been red flagged in their computer. Why I hasn’t no idea I never have tried to pick up early I pass every drug test my doctor gives me, yet they test me like a drug seeker. So now I’ve been without pain meds for a month all because of the DEA and they pharmacy who flagged me. Now I cannot get them filled anywhere.

  9. Wendy at 2:37 pm

    Please do share with politicians. They need to know the harm being done and that it is past time for an honest review of the DEA. Is that even possible?

  10. Mike Fogarty at 1:43 pm

    Kate, that’s the horrible thing about the situation. For the first time, pharmacists are being prosecuted for filling legitimate prescriptions and pharmaceutical wholesalers are being prosecuted for shipping to pharmacies which sell more than an arbitrary amount of controlled substances. Everyone is afraid, and pain patients suffer.

  11. Kate Johnson at 11:47 pm

    Wow. Seems to me it should be illegal for a pharmacist to refuse to fill a valid prescription. They aren’t doctors. They don’t have even remotely the education of doctors, and deciding who gets pain meds is not in their job description. They are there to fill valid prescriptions, period.

    I’ve had Fibro for 14 years and my advice is to grow cannabis. It’s far more effective for neuropathic pain like Fibro, and doesn’t have the same addiction potential and overdose risk of narcotics. Then the doctors aren’t the ones in control. Most doctors I’ve met are almost entirely clueless about chronic pain, and being dependent on them for my quality of life was completely untenable to me. I’ve done much better since I switched to cannabis, and have a much more amiable relationship with my primary care doc, since I never ask then for anything for pain.

  12. Mike Fogarty at 6:37 am

    The nurse at my Pain Management clinic was taking my vitals the other day and remarked she couldn’t understand why my pulse rate was so high. I realized suddenly that even after seeing so many of us every day, they had no idea what the life of a pain patient was like. We never know when we walk through that door every month if our life is going to be ruined. Has there been a regulatory change that is going to reduce my meds to the point I can’t work and feed my family any more? Will my meds be available at the Pharmacy? It has happened, and will again I’m sure, that the doctor will be very sorry, the pharmacist will be very sorry, but I will have no meds. They will calmly explain that it’s OK though, because it’s not their fault. Regardless of whose fault it is, I’m going to have to figure out how to work with excruciating pain and puking my guts out in withdrawal. And they wonder why my pulse rate is high? Blood pressure a little elevated?

  13. dave at 6:32 pm

    Modernism in America is the culture that needs to change if we are to dream of a better future for people in pain. The Capitalism and scientific materialism on which pain care is based has become perverse and autopoetic-such stuff as cynical philosophy books are made of. For the irony of the culture of pain care is that it serves culture more than it serves people in pain. It has become a parasite feeding off people in pain and leaving them sickened. It has become a simulacra and too far removed from people in pain.
    Unfortunately, I belive more people in pain will suffer before others in pain realize it is up to them to demand change in pain care and dream a new and better dream on which pain care should be base. Until then people in pain will array the rebel powers and suffer dearth.

  14. joe s at 12:56 pm

    This problem is only going to get worse. When the DEA is charging doctors with murder for prescribing pain meds, fewer and fewer doctors are going to be prescribing narcotics. This is complex problem that is political, not medical. There is currently no test that can reliably distinguish between a well informed drug seeker and a true chronic pain patient. Until a test is invented, politicians will have to weigh the rights of chronic pain sufferers vs the rights of dead drug seekers who knew full well they were dancing with the devil. It seems like the politicians have chosen to protect the drug seekers at the expense of chronic pain sufferers

  15. Christina R at 5:10 pm

    Thank you for doing the survey please share with politicians. How much they are hurting legitiment patients. How pharmacist are reacting to the DEA hand in scare tactics. Patients are suffering having to pharmacy hop is measures that should not exist. You should be able to find a pharmacist to help you just like your filling antibiotics. Not to judge a patient intill you know all there health history.

  16. Jim Adair at 10:20 am

    Walgreens to me is the worst, they constantly give me a hard time with my pain pills….I’ve been told by a pharmacist I didn’t look like I needed it and he was going to hold refilling them for a few days……