Drug Seeker, Doctor Shopper… or Person in Pain?

Drug Seeker, Doctor Shopper… or Person in Pain?

By Jenni Grover Prokopy

Doctor shopper. Drug seeker. Pharmacy shopper.

These labels are often attributed to pain patients seeking appropriate pain treatment, but who get caught up in a system that is continually tightening controls against fraud. As a result, many people in pain are denied the treatment they need to be productive and happy.

Dan Carr, MD, president of the American Academy of Pain Medicine, says there are a number of factors that have helped create the current atmosphere that stigmatizes pain patients. One of the biggest, he says, is shame.

Shame erodes a sense of connection and community

To understand the history of pain in western society, Dr. Carr directs us all the way back to Roman emperor Marcus Aurelius, who wrote almost 2,000 years ago about the plight of those living with chronic pain. In The Meditations, Aurelius said that listlessness and loss of appetite could be signs of unrecognized pain, and that no one should be ashamed to be in pain.

Yet despite our culture’s very early recognition of the reality of pain, another force works to stigmatize patients, says Dr. Carr—this one biological. He explains that a kind of “herd mentality” often means weaker members of our herd (people with chronic pain and illness) may be ostracized and isolated, and only those who recover (stop feeling pain and other symptoms) come back to thrive in the herd (community).

Carr Daniel 2014

Dan Carr, MD

“People with pain, especially chronic pain, have a tendency to be marginalized and stigmatized,” says Dr. Carr. That isolation can be deadly.

Shame makes it more difficult for pain patients to stand up for their rights, to be effective advocates for themselves and to build collaborative relationships with their health care providers. Dr. Carr says this must change.

Antidote: Strong doctor-patient relationships

Health care providers are taught to be empathetic, to get to know their patients and understand them as more than numbers on a chart. But in reality, many health care providers are harried, overworked and heavily regulated, resulting in barriers to forming deeper relationships with patients.

Dr. Carr says the most important action a patient can take to avoid being wrongly labeled is to improve these relationships. For starters, “monitor what treatments have been done, and what has benefited you or not,” he says. Bring this information with you to every appointment. “This can be really helpful because even in the current era of electronic records, this information is not always at the fingertips of providers.”

When a patient shows initiative by providing accurate, concise records of treatment history, it goes a long way toward building fundamental trust, Dr. Carr explains: “If a person’s been tracking what’s helped and what doesn’t help, that starts to move in a direction of pre-empting an adversarial relationship where the doctor says ‘you’re doctor shopping’ or ‘you’re drug seeking.’” Whether or not you take controlled substances, make sure you’re getting your medications from a health care provider with whom you enjoy a trusting relationship.

“If that’s not possible, I think the benefits one gets by having trust and a good relationship warrant trying to find someone who can provide a good relationship,” he explains. If not your doctor, then he suggests building a bond with a physician’s assistant or nurse practitioner—someone in the practice who can be your advocate.

Pain patients can take action to avoid unfair labels:

Dr. Carr says there are a number of other things pain patients can do to avoid unfair and negative labels:

  • Determine who has the power to write prescriptions. The more consistent you are in having the same doctor writing orders, the easier it will be to get your medication.
  • Understand your pharmacy’s policies. Current prescription monitoring programs vary from state to state, and some may flag you if you submit a prescription with a new provider’s signature, even if the new provider works in the same practice as your doctor.
  • Keep communication lines open. If you must get your prescription from a new provider, inform the pharmacy or have your doctor’s practice communicate that you’re still under their care. This can help you avoid being flagged.
  • Stick with the same pharmacy. It may seem like no big deal, but trying to get a refill on your medication at a different pharmacy from month to month can also raise a red flag.
  • Avoid weekends. Do your best to anticipate when you’ll need a refill so you don’t run out of medication over the weekend. That’s when everyone’s suspicions are aroused, says Dr. Carr, and you’ll have trouble getting a short-term refill at emergency rooms or pharmacies—even if you’re using a non-controlled medication.

 About Dr. Carr:

Dan Carr, MD is a professor and director of the Pain Research, Education and Policy Program at Tufts University School of Medicine in Boston, Mass. He was named president of the American Academy of Pain Medicine in Spring 2016.

About Jenni:

Jenni Grover Prokopy

Jenni Grover Prokopy

Jenni Grover Prokopy founded ChronicBabe.com in 2005 and has been a boisterous advocate for people with chronic pain and illness ever since. A professional speaker and writer with more than 25 years of experience, Jenni believes all people have a story worth telling. She lives in Chicago with her boyfriend, Joe, and enjoys gardening, quilting and five-minute dance parties in her living room.

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Authored by: Jenni Grover Prokopy

There are 16 comments for this article
  1. Layla Rose at 2:36 pm

    They really need to bring back “house calls”. Especially for the ones who sometimes can’t even make it to the doctor b/c they’re too sick or in too much pain.

  2. Layla Rose at 2:34 pm

    Everything today is all about being cautious and careful. It’s absurd. I used to get long-term muscle relaxers which helped me to manage and need less pain medication during my waking hours. But then new doctors refused to give me even mild ones. I ended up not being able to clean my apt. for over a year a few years ago b/c w/o pain meds, I’m unable to function or do household chores or anything. Suffering with chronic pain is such a horrible experience. And no matter how “careful” we are, we still get crap from everyone. I am looking for some medical advocate but have yet to find one. I need a lot of help. As I’m forced to skip doses of meds & stay in bed for most of the days that I skip. I’m not managing very well, even when I have a prescription. But it’s better than nothing. At least that’s what I tell myself.

    I’ve come to see that some of the very things that the DEA is trying to stop may in fact increase the “illegal” drug usage as some pain patients may have no other choice but to find ways of obtaining their much needed meds elsewhere and from non-reliable sources. And Heaven help them if anyone ever finds out, they’ll likely never be believed that it was desperatioin rather than addiction that drove them to find a way to treat themselves.

  3. Emily Ullrich at 2:07 pm

    Thank you for this. We need to stand up, speak up, and quit allowing ourselves to be bullied. There is an entire list of disrespectful, discriminating, and unprofessional terminology used by medical “professionals” to privately mock, insult, and perpetuate their pre-conceived notions about us. They use this terminology on our paperwork, even on our records, to let the other “professionals” know about the “piece of scum” they’re about to have as a patient.
    We need to ALWAYS get copies of our medical records (for multiple reasons, including the VERY high incidence of incorrect information that is in them) but in this case, we need to highlight these terms, find out what they mean if we can, share them with each other, and write hospital administration to say that we will not stand for this kind of disrespectful gossipy BS! One particularly harmful term, which I would venture to say every one of us on pain meds has in our files more than once is “LTDU,” Long Term Drug User. Not only is this term misleading, it serves NO MEDICAL PURPOSE, therefore should NOT be in our medical records! If the intended purpose is to let Drs know we’re opioid tolerant, then that is exactly what it should say “Patient is Opioid Tolerant.”

  4. Judy Wright Lott at 9:16 am

    I worked as a neonatal nurse, neonatal nurse practitioner, nurse practitioner faculty, director of a nurse practitioner practice, faculty chair of a nurse practitioner education program, and Dean of a School of nursing in a well-known university. For 40 years I managed to work productively despite increasing pain.! Then the pain began to interfere with my ability to do my job well,I had to retire. I was approved on my application for disability on my first application, a rare event in my experience in working in healthcare. With a good plan for pain management, decreased stress, and decreased physical exertion, I was able to function. I decided to travel with my husband, a pipe fitter to his various jobs throughout the US and Canada, in an RV. This worked well when he was on long-term job assignments. As the job market in his trade weakened and he had to move from job-to-job more frequently, this became a problem. My mostly recent experience was the most frustrating. We moved from two years in Bellingham, WA to Lubbock, TX and through referral from my provider in WA, established care with a great pain clinic in Lubbock. Unfortunately, what was supposed to be a 6 months or longer job turned out to be less than two months. We are now in Freeport, TX. I have d coded to give up on travel and return to my home in Dallas as soon as our house lease expires and the tenant leaves in February, 2017. Because of that and the fact that this job will also likely be a shorter term assignment and there is no telling where our next location will be, and that my provider in Lubbock is very good and provides me with every three months follow-up by giving me 3 prescriptions ( one for each month, written with appropriately-dated prescriptions), I opted to stick with that provider and fly to Lubbock for care. But that means that I need to have the prescriptions written by the Lubbock provider filled in Freeport. I have used Kroger as my preferred pharmacy for at least 5 years, but not a Freeport pharmacy, obviously. The Kroger pharmacy in Freeport refused to fill my prescriptions because they don’t know this doctor in Lubbock and they didn’t know me because I had never filled a prescription there. They would not look up my record to see that I had been taking these same medications over a long period of time.

    This is just the latest example of the frustrations and stigmas honest, law-abiding people with documented chronic pain must deal with. I am so tired of this. That dream of travel and seeing the US as full-time RVers when my husband retires in two years is gone. I am going to go back to my home, stick with that one provider, and one pharmacy. But, I resent that is my only option. It isn’t fair to me nor to my husband. We were really looking forward to that.

    Thanks for letting me get this off my chest.
    Judy Lott

  5. Heather at 12:09 am

    I suffer from chronic pain and was on opiates for years till I weened myself off of them. I have found that Soma (a muscle relaxer) has worked great for me. The entire time I’ve been seeing my doctor I asked once for something bc the pain was just too unbearable. Then I went in for a follow up just to listen to his judgemental attitude. He accused me of being on a Tranquilizer and I wasn’t on anything; then my fiancé snapped at him and said of course she’s tired. She has barely slept in weeks bc of her pain. I didn’t ask for pain meds, all I asked was that I need my soma refilled. Well he went and got mad at me bc I’ve lost weight and then cut the one medicine that helps me in half, then went and prescribed me an antidepressant trying to claim it will take all my pain away and make it so I can sleep. Thankfully I have a great relationship with my pharmacist who called the doctor and told him straight out that not only am I allergic to some of the inactive ingredients but it also interferes with other medication I’m taking. But my doctor refused to change the medicine and said that the reactions I would have would be mild. So now I don’t know what to do. My doctor won’t listen to me and now I feel he doesn’t even care to try and help me. So what do I do, go find a different doctor, or just suffer?

  6. Cathy M at 9:15 pm

    Good points, both in the article and the comments. We do need to collectively insist (via this site and other organizations) that the institutions put in place a legitimate process for changing doctors when/if the relationship isn’t working. It will be a hard sell, because the corporate medical system no longer thinks the patient should have the right to change doctors – you’re supposed to take what you get. Not cost effective otherwise.

    A story today in the NYTimes suggests we may be getting to such a level of insanity with this “opioid epidemic” that even non-pain sufferers will start saying, “WTF?” Apparently opioid addicts who can’t get their meds are now moving over to… Immodium! Yes, the over the counter diarrhea medicine can cause a high if taken in massive overdoses… and what is the FDA’s response? “We will take appropriate steps as soon as possible.” That is, moving immodium (and the generics) behind the counter like pseudoephedrine was moved a while back (not that THAT had much effect on meth addicts!) Once those with the runs can’t get relief, maybe we will see some awareness that removing meds for all because some are abusing them is NOT the way to go! (I can only hope).

  7. Ewa Roy at 8:25 pm

    Great article & advice, however, it’s sometimes extremely hard to able to develop such relationships. I for one, had excellent team of doctors while living in Virginia. All that changed when my husband was transferred to Arkansas. The primary care clinic, which we are ENCOURAGED by the employer to be part of DOES NOT prescribe ANY pain medication. After a long quest of searching I finally found a pain management clinic who agreed to take my case. After almost 2 years, I was switched to a new doctor, well needles to say, things didn’t go well & according to this doctor I supposedly discharged myself by asking the staff if I could possibly see the previous doctor with whom I had a contract. Since then I’ve been referred to 3 clinics only to find out, that they did not deal with complex chronic pain (I have lupus, sjogren’s post Lyme, osteoporosis, osteoarthritis & plenty of other autoimmune disorders) Yesterday, I have made yet another trip to a new clinic. Despite the fact, that I brought my records, including recent hospital records & information with regards to my very, very recent third back surgery & second spinal fusion. My chief complaint was generalized pain & failed hand surgery from last year to rebuild my joint. Well, I almost fell out of my chair when the doctor indicated I needed an epidural on my back (the back I just had surgery on, 5 1/2 hour very difficult & complex surgery) When trying to question the safety of the said epidural so close post surgery, I was told it was fine & once I had this procedure, only then would the doctor continue my pain medication at a reduced frequency. Appointment was scheduled for couple of days later. I left shocked & scared out of my wits. This is my SPINE we talking about. I asked my husband, who by the way was unable to join me, per clinic’s policy, during my visit, to take yet another day of from work to bring me back couple of days later for the epidural. As I left the office, I had a nagging feeling that this was not right & I told my husband I’m going to call the surgeon to make sure it was ok. My husband being tired of all the charades, told me not to rock the boat. Yet I continued to have a nagging uneasy feeling & made the call. The surgeon couldn’t believe it & said absolutely NOT. Too early, too risky & so on. To his credit he or rather his nurse offered to intervene on my behalf. Well, I received a call from the pain management nurse today & she’s going to take my name of the procedure list, but as for the doctor continuing my pain management, well, she’ll have to talk to her & get back to me…. What do you think my chances are, I say zero to none. So, in the last few months because of the dismissal from the prior clinic, then being under the surgeon’s care, where my doses have been changing pretty much every 2 weeks, up, down, then up again & now yet another pain management doctor. All these scripts are filled at the same pharmacy. I can pretty much guarantee you I’ve been red flagged already.

  8. ROCHELLE DORIS TYNER at 8:02 pm

    THERE IS A HUGE DIFFERENCE BETWEEN ADDICTION & DEPENDENCIES, BY CHRONICPAIN PATIENTS TO WHO MAY BE ABLE TO FUNCTION BETTER WITH MEDICATION, BUT, THAT WITHIN ITSELF IS DEPRESSING. I AM EXTREMELY INTERESTED IN THIS TOPIC, AND OPEN COMMUNICATION, IT COULD SO BENEFICIAL TO ALL..I WOULD LIKE TO HELP, I AM QUALIFIED AS I HAVE BEEN IN CHRONIC PAIN SINCE 1998 AND I FEEL LIKE AN EXPERT IN THIS MATTER, ALL TOO WELL & MANY MORE INTERESTED IN HELP, ADVISE, COMMUNICATION WITH OTHERS WITH SAME BIG PROBLEMS. SINCERELY, Rochelle D. Tyner

  9. Sandra at 6:30 pm

    I hear talk to your doctor over and over…….the doctor is the one that stops your pain meds. The Doctor has been threatened to not help you or there will be a problem. They are not going to risk helping you with your serious pain . Just ask them they will tell you or most will. Some of my doctors have also told me that most pain clinics do not help people in pain that I should not go to any in this area. So we are left with uncaring medical profession . That’s just the way it is. Or just keep voting for the same good old boys that have made it this way. Dig deeper you will understand this last sentence .

  10. Sonja at 6:18 pm

    The “random” advertisement that came up on this page for me was an ad for an opioid dependence clinic. There is money to be made curing people of their dependence. If we keep fueling the flames of stigma against the drugs that help, more will search for an end to the dependence out of shame or they are forced into it by well-meaning relatives who stage an intervention. Protests of not being addicted are chalked up to denial.

    I have seen statements in articles that say that opioids should not be used to manage pain long-term, but I see little information on alternative pain treatments that are realistic, affordable, and actually work for a majority of patients. Nor do these articles offer solid reasoning as to *why* opioids should be avoided long-term.

    Pain patients crave relief from the pain, not the narcotics.

  11. Pam at 3:37 pm

    Dr. Carr makes it sound so easy with all his suggestions, sadly in todays society and the DEA’s war on legitimate pain pts, the mass hysteria the CDC, DEA, Government and media have created, the stigmatizing and labeling of legitimate pain pts, we can’t even get our foot in the door to have our pain addressed, well the majority of us who have been on opiods for years can’t. We are judged over the phone no sooner we state the meds we are onnd treated like pill seeking junkies. I try to address my concerns with my dr of five years, but the past year Ive heard degrading comments from him. He lowered my meds last March, said he had to lower everyone, but I found out that was a lie. When he lowere the MG on my immediate release, I lasted as long as I could but the pain was overbearing. Finalky around Oct/Nov I pleaded to be put back on the correct mg that worked for me. He told me I was “bargaining for pills” I immediately broke down in tears and told him to not make me feel that way that he knows dam well I am a legitimate patient. He walked out of the exam room, called my pharmacy, oh BTW my pharmacist happens to be his wife, came back in and agreed to put me on the correct mg BUT told me he could onky do three a day. My extended release has been cut to one a day, which does NOTHING..I exist in a level 9 pain all day every day. He mentioned to me back when he put me on the correct mg that his hands were tied.. And for me not to ask for four a day, Im in severe pain here..He knows it, he sees it, but refuses to put me on what works. Ive been calling drs all over NJ to find a new dr, but have been unsuccessful, but I sure as heck have heard everything from “we dont treat with meds” to ” go to detox” from people who have never met me or looked at my records. Gone are the days of compassion and empathy from the medical community. The CDC with their one size fits all attitude, has many pts turning to the streets for relief or worse committing suicide to escape the pain.

  12. Dave at 10:58 am

    Our institutions and experts have a role in stigmatizing, labeling, and mistreating people in pain. Pain specialists, for example, are quick to label people in pain with the pejorative and insulting term “catastrophizer”. And while pain specialists talk about “patient centered” care it is clear their focus is not on the person in pain but on the technical aspects of care and on medicocentric symptom- oriented care. The research which informs pain care is depersonalized and based on statistical averages and not on single case studies. So the assumption behind evidenced based pain care is that whenever someone in pain walks in to the pain specialists office- they should receive the same average care as any other person in pain- hence pain care is by design depersonalized(and often ineffective).
    Institutions can and should allow more democracy, more individualism, more freedom for people in pain in designing pain research, pain education, public education efforts, more direct access to diagnostics and treatments. And even pain specialty organizations can allow some people in pain to be on their boards, and register concerns, and opinions on their web page. Our institutions- government, the health care industry have too much control over not just tangible resources that people in pain can use-they dominate people in pain symbolically and have relegated people in pain to largely being serfs who must plead to our institutions to recognize a right to humane pain care.
    I know that our society has been unwilling to have, or recognize the need for, greater regard for the person in pain and their opinions, values, and make the structural changes in medical boards, medical schools, oversight committees, and in NIH, departments of health, educational institutions that would lead to reverence for their lives – but frankly without these needed changes– talk about improving the human aspects of pain care is less then polite reformism. In fact its just another form of social control in the form of moral containment.
    If there will be a change in stigma.
    Whilst Modern medicine would like to point a finger at the rest of society for problems in pain care- they are very much a part of the problem. Instead of telling people in pain what they should do to work around the many injustices in pain care- they can and should work with people in pain to transform pain care into something more democratic, more individual rights based, more humane, and much more evolved in our Darwinistic , costly, burdesnsome, and depersonalizing pain care system

  13. Angel at 10:34 am

    All very good solid advice! I find a huge difference between the way my husband is treated vs myself too by providers. Maybe it’s just me but I feel like being a woman automatically puts me at a disadvantage when seeking care

  14. K. Rhoma at 8:18 am

    It sounds like a relationship needs to be established with a pharmacist as well as a doctor. I have some questions perhaps someone can answer.
    1. What happens when a person is “red flagged”. What exactly does it mean?
    2. Why can a pharmacist refuse a valid prescription from a qualified provider?
    3. If you are flagged, how can it be removed?

    My sister is also a chronic pain sufferer. She is retired and travels to a warmer climate during winter. While at her summer home she had a terrible experience trying to see a doc and then having a pharmacist ” red flag” her and refuse to fill her script.

    This amazing and highly respected retired nurse, who trashed her back helping women in labor and delivery, was treated like dirt. She still cries about it. She came home early.

    Final question. Do pharmacists have training about chronic pain management?

    Thank you for the post.

  15. Eleanor Drewniak at 6:35 am

    This article has been so helpful for me. A chronic pain patient for quite a few years. I have dealt with every kind of judgement and labeling there is because my body looks “normal “. Please stay an advocate. Sounds like your personality, interests and attitude will keep you from burning out in this field Those of us with chronic pain need to know how we can help ourselves. The guidelines you have given are such a help. Thank you for your knowledge and caring.

  16. Hallie Winchell Williams at 5:02 am

    Excellent article exploring the stigma faced by patients seeking adequate pain relief, as well as ways to develop deeper and more respectful relationships with your doctor and pharmacist.

    The discussion on addressing ways to reduce stigma of chronic pain patients and Fibromyalgia specifically among the greater society and community. Any ideas or suggestions to work to reduce the stigma we face during the recent media reporting onslaught of constant stories about opioid use = addiction, are welcome. Please let me know if you have some jokes that will help an average person understand that the hypocritical standards we live with make every day. I have noticed humor can break down misunderstood barriers.

    Or some other ideas include working with me to develop a public awareness campaign on FM and chronic pain, which would include a human interest perspective by sharing our stories — showing we are functional non-addicted populace, and a big support throughout our local community. I also want to comment on media bias related to our use of opiates by prescriptions for improved quality of life. For example: Have you noticed only 1-2 of 160 or more of the media articles published in the past week (I am sure this is a mere drop in the bucket of these articles since Prince passed away), have included thoughtful, non-addiction agenda driven content? Reacting to these articles would be one easy method of bringing the US Pain Foundation and volunteers for the foundation looking for a way to point out misinformation, inaccurate data, or correct. There are many low-energy ways to be involved and make a difference, please email me at hallie(dot)winchell @ gmail.com.