The Stigma of Neuropathic Pain




Anti_Stigmatization2.jpgIn 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 considerable 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 healthcare system.

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  • Giusebio Chocolino

    I disagree in one point, sir. Pain is not subjective. It may be imaginative, I would say, but when it is there, it is there. Some people tolerate it more, other less (a lot of reasons to this, including faith). This does not make the pain subjective. Sometimes doctors ask me the level of my pain. I don’t know the answer, but there is an answer. I just don’t know how to measure it.

  • James RN

    Pain is a wholly subjective experience, in my opinion, both as an RN of 30+ years, and as a middle-aged man that has had chronic pain for a decade. The problem is that there are simply too many myths about managing pain, what pain means for the individual, and health care providers – both MDs and RNs -respond poorly to an individual in pain, likely due to knowledge and skills deficits in the area of pain management.

  • Kali O’Malley

    Thanks for the great work.. Doc JC. 🙂

    I’ve suffered chronic bodywide pain from degenerative disc disease and what they tell me is fibromyalgia, a tarlov’s cyst at T9/10 and several foot surgeries. This has been path for for over 25 years. I have been prescribed EVERY possible narcotic pain releiver, anti depressant, had multiple nerve blocks etc…

    I refuse to take the narcotics for 99% of the time because it destroys my conscious contact with God. In my life, without that that I’m sunk and I haven’t a chance to control my pain naturally therough rest, meditation, aquatic exersise and swimming, and long soaking baths using essential oils. I fear a life of addiction no matter if it’s a pescribed addiction or not.

    At the current time a Tarlov’s Cyst is something that is poorly treated, poorly researched and 99% of Doc’s will tell you that they don’t cause symtoms. I have severe parasthesia and it can come anywhere in my body. It was so intense it was misdiagnosed as post herpatic neuralgia. My Neurologist is a good and honest man and very skilled but he’s honest enough to say ” I have never operated on a tarlov cyst nor would I at this point”

    I’ve worked with essential oils for 20+ years. I know that they also impressively effect the limbic system as well, just based on my own experiences with them. I’d also like to tell you that medicinal marijuana has also heled me tremendously. However, I dislike the smoking factor and stopped. I am curretly on Marinol and it seems that the canniboid DOES at least help me keep my “God Connection” up and the chronic suffering syndrome down. It takes some brain training ( God Conenction ) to say
    ” Okay, today you are in pain, that doesn’t mean the whole day is a wash” I am in severe pain 24/ 7 and I am not able to be as physically active as I’d like.

    Thanks again Doc, I look forward to more of your posts.

    Kali

  • buga.daniel

    But someones gotta do that job.. there are many people suffering of that.. they need to be cured! Don’t they?! Even though they have a slight chance of that.. And even though..they probably are addicted to those morphine derivatives.. They should be helped..

  • Shelley

    I use to be an RN until at 30 yrs old I was struck down with severe chronic pain. I have also had 28 major surgeries since I was 20 yrs old. I was put on SSI at 32. I was on 25 meds a day for 23 yrs for the pain. 95% of the doctors told me it was in my head! Right! Boy as soon as a doctor reads that on your history they automatically want to get you out of there office asap! It makes me so angry! I have been insulted, called a nut case and worse during my journey. I am now 53 yrs old and they have now found out that I have 14 bad discs starting from 2 past fusions in my neck and it goes down from there and then more in the L-3/4 – Sacral area. And through many EMG’s I was finally Dx’d with bi-lateral Peripheral Neuropathy. This past summer of 07’I was finally put in an wheelchair and scooter. I am to young for this and I felt at the time “all those doctors that just didn’t care enough or did not want to deal with me put me there!” Totally frustrated, I went on my own and got out of all the Medicare HMO plans and returned to original Medicare so more PPO’s would take me and I went to a 22 different doctors before I found 4 that did care. You want to know the difference of the 4 out of 22? The 4 have been patients and had experienced severe pain….had they time to be human and really take an interest in one for a change! In November of 07’these fantastic doctors implanted Neurostimulators in each hip. It is the first time in 23 yrs I am able to live almost pain free! I am off all of the meds that were hurting my liver and kidneys. I do have 2 meds for breakout pain but I hardly use them and I am out of my wheelchair. I thank God for those 4 doctors for “taking the time to get to know me”. I was Dx’d many times w/FMS over the years. I believe in FMS but I knew there was something else going on. Most doctors have said to me “it does not exist”. But, I do believe that many are getting just labeled with it so doctors do not have to deal with them. Throw them some anti-depressants and out the door. There are still good doctors out there but they are hard to find and you have to take control of your healthcare and remember your interviewing the doctor. If you do not feel comfortable with the doctor or Dx don’t just stop interviewing doctors for help and with all the medical websites, research your symptoms not to Dx yourself but it helped me know what specialists I needed to seek out. Your not paying to be insulted either, your already in pain enough without having to listen to uncaring doctor. Sorry for the length of this…maybe someone out there can relate.

  • A New Blog from The Patients Voice – about Back Pain

    Dear Friends

    Welcome to the newest blog from The Patients Voice. In this blog we are very keen to explore your thoughts and ideas about the experience of suffering from back pain.

    We would therefore like to invite you to participate in the blog. Firstly by having a look at the blog and secondly by participating yourself. It is a great opportunity to share experiences and information about back pain.

    To visit the blog please go to
    http://www.thepatientsvoice.org/Back_Pain/Live_Blog_ver2.asp
    Blogs are a wonderful way for patients and their carers to connect with each other. But not just that they are a great way to disseminate information with people who suffer from back pain.

    You may also notice that our site has been re-designed so please feel free to have a look at other parts of the site. If you have any suggestions regarding the site please do feel free to email me about them.

    Remember The Patients Voice is a great opportunity for you to share with others.

    Best wishes

    Belinda Shale
    The Patients Voice
    http://www.thepatientsvoice.org

  • Amy

    Another resource is this brain and spinal cord blog and TBI and SCI website. The blog is frequently updated with the latest pain relief technologies, and comments and suggestions are always appreciated.

  • Michele

    I’m currently trying to find a doctor that I can connect with to help me with my chronic pain. I found out that I have had a stroke in my Cerebellum, and have white matter on both hemispheres of my brain. I’ve had a lumbar stick to r/o MS, and have had multiple tests to try and figure out what is wrong with me??I’m also one of the unlucky patients that has a hard time finding a doctor to help me with pain management!! I’ve had a low grade fever, and weight loss (not intentional), and am totally frustrated. I’m glad I am able to vent here, and I’m sure I’m not alone.

  • Nickolas

    Well the way I look at it if someone is in pain they should be given meds and or treatment to help them with their pain. If a person really is in pain they will have x-rays, mri’s, etc to back up their complaint. People that are drug seekers probably don’t have documents like us who really have pain and just go Dr shopping to see what they can get. I have had back problems since the 1980’s and have taken I don’t know how many different meds and also have had quite a few procedures done.

    Nothing works or helps me but a good pain killer. All those injections and electrical devices along with therapy didn’t do much of anything for me and my pain. Problem with the Opioids though is you have to keep upping the dosage to get relief. I am on some pretty potent meds and I also function quite normal and not walking around like a zombie thank God. Everyone is different on how they respond to whatever pill or other procedure they have done to them.

    There will always be drug seekers and there will also be folks in real pain that need these meds. I think a good Dr can tell if you really have a problem or you are just seeking a high. I have never had a problem getting medicine for relief. They pretty much ask me what I want and nine times out of ten give it to me. I don’t go overboard though I am conservative so maybe that’s why I have never had a problem.

    Anyway we need Opioids for pain and should be able to get them if nothing else works. I surely don’t want to walk around in sever pain every day and thankfully the meds work good enough to make it tolerable and make it through the day. I have had three back surgeries and they want to do a fourth but I am tired of being cut open so I said I just want to take the meds as that helps me the most and it isn’t any issue. They do regular blood work to monitor my organs and stuff so I’m ok there. I wish more people had easy access to these meds as I know some people in pain and they can’t get anything stronger than Tylenol.It isn’t right and pain will ruin your life. I could go on and on but I’ll stop there. Just wanted to post my thoughts on the subject.

JC, MD

Dr. JC is a medical doctor who has a passion for health promotion and education.
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