One Doctor’s Opinion: The Stigma of Neuropathic Pain

Posted online 3/14/07 by the Global Neuroscience Initiative Foundation at GNIF Brainblogger.* Used with permission.

In my work as a physician, one thing that has always bothered me is the patient with 'neuropathic pain'. Here is the typical scenario:

A patient with a history of chronic pain (usually back pain) and pain medication use comes to the hospital for surgery. Post operatively, the patient’s pain is poorly controlled, despite administration of high doses of morphine derivatives. On examination the patient is extremely tender to touch, in areas remote to the operative incision. Both the medical team and surgical team are uncomfortable administering higher doses of medication. They prefer to consult the pain management team, referring to the pain as 'neuropathic'.

In the medical profession, we are bothered by patients with neuropathic pain for several reasons.

Most obviously, we get frustrated that we can’t make them feel better. Despite high doses of medications and bedside counseling, we can’t seem to ease their pain.

The main reason we are frustrated is that our mission is to make people get better. We tend to overlook the simple fact that pain is a subjective phenomenon. What is painful to one person may not be as painful to another. When we administer high doses of pain medication to no relief, we get suspicious of our patients as drug seekers. We don’t want to promote drug seeking behavior, despite not really knowing what it is like to have uncontrolled pain.

Perhaps the worst thing about medicine is that once this term makes it in a patient’s chart, it follows him or her forever.

The stigma associated with having chronic pain issues can considerably alter a patient’s pathway of care. Doctors tend to shuffle problematic patients to those providers that are capable and willing to participate in their care.

Most of the health care providers I have dealt with who are comfortable with neuropathic pain patients are pain management specialists, neurologists, rheumatologists, and physiatrists.

Unfortunately, the rest of us seem to perpetuate this stigma throughout the health care system.
* The “open-access” site is sponsored by the Global Neuroscience Initiative Foundation (GNIF), which describes itself as “a non-profit charity organization for the advancement of neurological and mental health patient welfare, education, and research. We aim to further brain related studies, end stigmatization and discrimination, improve the well-being of afflicted individuals, promote the free and open-access distribution of brain related information, and institute universal and multidisciplinary distance educational programs.”

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6 thoughts on “One Doctor’s Opinion: The Stigma of Neuropathic Pain”

  1. crashcart says:

    Dear JC,
    Thank you for your candid statements regarding chronic pain patients. As a nurse with ER experience, wound care experience, several years in post-op recovery and as a chronic pain patient myself I know the complexities of this problem very well from “both sides of the railing”.

    I also know, as you pointed out, that not every practitioner is appropriately suited, emotionally or psychologically, to treat every problem that comes his or her way despite our desire to do so, and our professional “obligation” to do so. We must, as professionals, realize when to step out of these situations for the good of the patient…the sooner the better. And if you are in a position to teach this to others please do so. You will go a long way in helping many patients avoid a lot of time lost, and a lot of anguish, frustration, anger, humiliation, bewilderment and self-blame not to mention a lot of ill-spent money.

    You will also be doing your colleagues a favor in sparing them the notion that they *have* to treat these patients. They are doing the absolute BEST thing they could possibly do when they refer that pain patient to the nearest pain clinic. All it takes is a few minutes of their time to look up the address and phone number. Or have their staff do it. Or if they are in a busy ER setting and time is a problem, do a social work referral and let *them * take care of hooking the patient up with the right people. In these cases you’re doing them a favor to “turf” them because they certainly don’t need to be seen by people who are going to put them in that little box of names with “Drug Seeker” on it.

    More often than not, what they really need is for someone to just listen to them…really *listen* and give them some feedback. And doctors just don’t do that. That’s why reputable pain clinics have psychologists on staff, as well as other ancillary team members in order to meet the patient’s holistic needs. Just throwing more meds at them is not enough with chronic pain pt.’s. It’s not a “treat ’em & street ’em” problem and health personnel who are in it with that type of attitude would do everyone a favor by just honestly referring the chronic pain pt. right at the outset to someone who is a more appropriate practitioner. BTW, there are Holistic Nurse Practitioners who do very well with this type of patient.

    Again, I thank you for sharing your thoughts and thereby letting patients know that not all doctors are appropriate for *them*.


    Lynn M. Waugh


    1. AuntieLin says:

      As one who deals with chronic pain, I found this article and the reply by Lynn Waugh very informative and helpful. I have periphreal neuropathy, fibromyalgia, and arthritis. The intensity of pain is up and down, but never gone (pariticularly with the neuropathy). Fortunately, my internist is wonderful and very understanding — I don’t believe he sees me as a “drug seeker.” As well, I see a neuoroligist and rheumatologist.

      One of my problems is that I need surgery, unrelated to any of my conditions. I think I keep putting it off because I am terrified of waking up and being in great pain from the neuropathy, and no one doing anything about it! The medication I take for that needs to be evenly spaced out to keep the pain under control. Having missed a dose now and then, I am fully aware of how that greatly increases my pain.

      The other issue about folks with chronic pain is that it doesn’t “show” to other people, so they tend to not acknowledge it, or to forget that it’s with you all the time (even family members).

    2. AuntieLin says:

      Lynn, thank you so much for your encouraging words, as well as the helpful “hints” about having surgery. I feel better informed now about how to handle things with the doctors and anestheseologist.

      You are right — SOME nurses (like SOME doctors) just don’t understand and cannot relate to severe, ongoing pain. Thank
      God for those that do, and who – like you – take the time to educate the others.

      BTW, the reason I chose this screen name is because I have two great nephews and that’s what I want them to call me — when they start talking (my name is Linda, and their parents call me Aunt Linda).

      Thanks again for boosting my courage, and for your prayers!

    3. crashcart says:

      You’re welcome! We’re all in this together!


  2. crashcart says:

    Dear AuntieLin,
    First of all, I like your screen name…that’s what my nieces and nephews call me. (Auntie Lynn)

    Now to your post. I well understand your concerns regarding your surgery. Did you notice on this week’s issue of the FM/CFS issue that there are guidelines for those with FM and neuropathy having surgery and a fact sheet that they can print out to give to their anesthesiologist so this person can best treat them before, during and after surgery to minimize the chances of exacerbating a flare or having the neuropathy get worse?

    Also, you can request to see the anesthesiologist the day or so before your surgery so you have time to go over these concerns when you and the doctor are not pushed for time. The day of surgery is not the time to do this as this tends to be a very hectic time for the surgical team. They have a schedule to maintain, so getting these issues taken care of a couple of days before makes it much easier. (They are usually already scheduled at least a week in advance so they will know what cases they will be covering.)

    If you have not planned your surgery yet, try to schedule it for being either the first or second case of the day. You will be much less likely to encounter any delays. Also make sure you have all lab work (and an EKG, if you are over 50 years old), done at least the day before. Most hospitals will do this as routine pre-admission testing.

    I hope you will be able to go ahead with your surgery and feel comfortable about your decision. I’ll keep you in my thoughts and prayers.

    As for your last comment about those of us with FM, and neuropathic pain having this *invisible* pain, I can really relate!! My fellow nurses are some of the worst. The younger ones who have never had to deal with anything worse than a few cramps here and there…even in the face of constant education regarding how a person’s pain is subjective, and one is never to pass judgment on how that person rates his or her pain…they still whisper behind the patient’s backs about so and so being a “baby”. Believe me, I take those opportunities to educate those kinds of people. I do so in a professional, calm, clinical manner with facts and literature to back me up. But my gut feeling is that until they actually have to deal with some significant pain on their own, their prejudices won’t change.

    And that’s what it is. Prejudice. It’s the way they were brought up to react to pain. It’s a learned response just like any other kind of prejudice is. Unfortunately it’s very difficult to “train it out” of a person. So you just have to ignore them and be your own advocate and keep being the “greasy wheel” until you get what you want.

    I’m very glad you have primary practitioners you trust and with whom you are comfortable. That’s half the battle!

    Take care and best wishes!


  3. r47mb says:

    Hello All,
    One thing that is not mentioned in this article is: Emergency surgery! Trying to put up Christmas lights I had the ladder slip out from underneath me. I knew that my leg was broken (tibial plateau). I have both Cfs, or now Myalgic Encephalomyelitis, and FM. My first words (after sceaming several expletives , was call 911, and then call my doctor because I knew the trouble that was on the way when they were about to hear the amount of pain medication that I was on! My doc is semi-retired but has kept a few chronic patients, maybe six or so. But everything happened just as I suspected it would: small dose of Morphene throw me in an ambulance and ignore my directions to the cheaper hospital that was approx. five times farther than my usual hospital! And rather than just start the surgery, they debated for about four hours while they debated how to anesthetize me!

    I am in my sixth year of my soc. sec. disability fight and it took me two-and-a-half years to find a doctor who would treat me! But from that experience, I have learned: never get in another accident as long as I live! My family and I have been living on welfare for over six years, when the cap is two! My doc has to jump through so many hoops just to keep us on welfare, my wife is my 24-hour caretaker. But as a result of my accident, all the docs came to the conclusion that I shoud be detoxed via the coma method and forced off my medication and I am also listed as a seeker!

    I have never wanted out of a hospital so fast in my life! They forced my doc to lower my pain med dose, and the whole time I was in the hospital my pain was never handled adequately except when my wife would sneak in my regular doses!

    My point is that not one person in that hospital believed that my pain was real! (Or as bad as I said it was)!

    P.S. I have gone off pain meds three times in the past to show docs. that I was not faking it- and not one cared, but it put my body through complete hell! I do believe that no medical personel will understand unless they experience it!

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