Misdiagnosed With Addiction by Patti

My Life With Chronic Pain After Being Misdiagnosed With Addiction

By Patti A.

I am writing this article from the perspective of being a patient who has a Chronic Pain Condition as well as having an unwarranted, Doctor imposed label of “Addiction”. What no one seems to really understand is that my Chronic Pain Condition is a result of a lower back injury and two resulting back surgeries.

As most people can imagine, having both of these problems—chronic pain and a substance use disorder—can be a very difficult problem for a healthcare provider to manage. Imagine though how harmful it is when someone is diagnosed or labeled “Addiction” and it is not an appropriate diagnosis. The new polite wording this is a “Chemical Dependence,” “Substance Use Disorder” or “Opiate Dependence.” But these terms are not helpful either since it has the same exact meaning to most Healthcare Professionals, as well as the general public.

I really need to share what types of problems I have personally experienced after being given this inaccurate Opiate Dependence or Addiction Diagnosis. To make matters worse, I was totally unaware that this diagnosis was ever made as it had never been explained to me that I had this diagnosis in my medical record.

The First Time I Thought Something Was Wrong

The first time I thought something was wrong was when I found myself having severe eye pain suddenly. I had called ahead to the Emergency Room to make sure they had an availability of an eye doctor and decided to go in based on their confirmation of availability. I was examined by a Physicians’ Assistant (PA) from a distance after he reviewed my medical record. He looked at my eye without using any diagnostic equipment and told me I had an infection and gave me the usual prescription for that. I thought it was odd since I had no eye drainage of any kind and I had never had such pain with an eye infection before.

Two days later the pain increased in my eye while using the antibiotic drops. What I found out days later was that I had a herpes sore in my eye. No wonder those drops were making it worse. I realized that not one medical doctor or PA had taken my pain seriously in that Emergency Room. I was taking a prescription for pain medicine at the time for my lower back. I was also labeled at that Emergency Room Visit as having, “Drug Seeking” behavior. But I did not know that until much later.

I was taking Opiate pain medicine prescribed by my doctor to treat my chronic pain due to the back injury. I would have flare-ups of severe pain in my left hip, groin and leg despite the prescribed Opiate drugs. I went another time to an Emergency Room in severe pain in these areas and was seen by another Physician’s Assistant. The PA, after looking in my medical record, then proceeded to tell me to get out and leave the Emergency Room as I lay there on the gurney. My husband, who was present, and I had no understanding at the time why 3 Security Guards came up to where I lay telling me I was to get back in my wheelchair myself or they would pick me up and put me there. My husband picked me up and we were escorted out the door. I was 59 years old and disabled and was no threat to anyone. It was at that point that I started to wonder, what “Red Flag” was in my Medical Record to make the helping Medical Professionals respond like that to me.

Later I did indeed find out what that “Red Flag” was.

red flagLater I did indeed find out what that “Red Flag” was. A different Medical Doctor finally wrote down on my first visit with him the diagnosis of, “History of Addiction”, as one of my diagnosis. This was the first time that I had ever been aware of this. I had since obtained all my actual medical records from all the healthcare providers and hospital that had been involved with my back injury and found no mention of a problem like this. I really could not understand since no medical person had ever even mentioned I may have this diagnosis. In fact, nobody involved in the care of my back had even mentioned the word “Dependency” to me. I also thought it to be odd that I was still being prescribed Pain Medication during this whole period of time since I thought that would have been counter-indicated

I had to move from the state where I was born due my disability since my medical condition prevented me from coping with harsh winter weather. I had great difficulty finding a Primary Care Physician (PCP)  that would accept me as a patient despite their office excepting new patients and who were taking others with my insurance.

Soon after I moved I found myself in a medical emergency with no PCP. Despite calls to my insurance company I could not get help for this emergency until I was admitted to the hospital weeks later. I believe no medical doctors wanted me as their patient when they saw the listed diagnosis of “History of Addiction”.

We all know how difficult it can be to deal with an individual with a drug addiction, however, I did not have this problem, but they did not know that. This is a diagnosis that follows people for a lifetime. Unfortunately, when it is made in error, it is very detrimental and possibly can be a factor in someone’s death. Some Emergency Room Medical Professionals will not take your Pain Symptoms seriously with this on your medical record. This is dangerous!

Not only can there be a huge physical ramification from a false diagnosis of Addiction but it can do harm to a persons’ mental and emotional health as well as causing family problems. I know it has affected me that way. Even though I realize that this is just a medical error on the part of a doctor, the diagnosis evokes many people to make judgments about the person.

I had many angry responses to me by the helping professionals in my times of real need. Believe me, the hospital professional staff that had me thrown out of an Emergency Room demonstrated their anger by tone of voice, gestures, and curtness. I felt hopeless leaving there and my husband was so stunned he had no words to say. It was a very dark time in my life that has become difficult to forget.

This absolutely gives Chronic Pain Patient even more undeserved problems. It has been suggested to me that I now suffer with PTSD and anxiety. My Blood Pressure is usually high at every doctor’s visit now. Doctors want me to take antihypertensive medications daily as a result. I feel very fortunate to have a Nursing background though.  I realize this very frustrating and damaging diagnosis has lead me to distrust the very physicians I have to go to for help now. My Blood Pressure is high in their offices but not at home.

I also wrestle now with the problem of feeling as if my reputation has been harmed. I am seen by Medical Professionals and especially doctors as untrustworthy since as we know most Addicted People are considered to be in denial if they disagree with that diagnosis. I am not that person. That is something I never wanted in my life but yet that is how I am treated. The very Medical System that I worked in for almost 35 years has now mislabeled me and treats me harshly now at a time when I need care myself.

there needs more understanding within the medical communityI strongly believe that there needs to be a change. I think there needs more understanding within the medical community as well as the public arena. There is a definite difference between a physical dependence on a substance versus an addiction to it. My understanding is that an addiction entails a mental disorder in which you must have that drug and take more than prescribed or start taking other drugs in order to satisfy some other need.

An Addiction Diagnosis suggests that one has misused drugs and did this to themselves. I have been judged as one of those types of people—It’s wrong. There should be a way to differentiate between these conditions, otherwise healthcare providers are doing harm to their patient. I had many Medical Professionals come up to me and congratulate me for stopping my Pain medication. I thought they were crazy. It was no mental feat to stop them but I must admit the physical body reaction was not good. That is normal for someone that has taken Opiate pain medicine for a period of time.

It’s past time to stop hurting and stigmatizing Pain Patients in this manner. It just makes their Pain Experience worse and can even lead to serious mental health problems and in some cases suicide.

Please healthcare providers, make sure your diagnosis is made correctly. I believe that an Addiction or Dependency diagnosis should be only made by someone who is trained in addiction medicine and who specializes in treating addictive disorders.

 

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6 thoughts on “Misdiagnosed With Addiction by Patti

  • What can we do to have rhis flag removed? I had almost the same experience..Lupus SLE, Addisons, Fibro, Bleeding Ulcers, Graves…a partial list of diagnosis I have…for years, on disability…recently i was hospitalized in ICU for 5 wks, with ocer 20 units of blood given, almost near death. I have my medical records from this latest turn at hospital…all those diagnosis is there along with chronic narcotic use???WHY??? Now, back to ur red flag issue, i was flagged at another hospital for “drug seeker” thrown out as well….WHY? HOW DO I REMOVE THIS BS???HELP!!!

    • This is a tough one. I think the first step is to find a competent and respected pain management doctor that you can work with to develop a multi-dimensional pain management program. For example, my pain management consists of several medications. The fentanyl is only a part of the program.
      By trying many other combinations with a doctor that has the patience and time to work with you to create a program that is effective you might be able, over time, to break free of that flag. I think it is important to also tell that doctor that not only do you want pain management that works, but that you are willing to do what it takes and that you want to work to have the flag removed somehow (even if that means it is just distancing it) by showing that narcotics are not what you are after, pain management is what you are after.
      It is not fair, not in the least that we have to do so much to get our pain managed because criminals have been the source of laws.

  • Ms. Young’s experience mirrors mine in many ways. My body was decimated by a couple motorcycle accidents, the first of which was almost 15 years ago. I started riding again far too soon and had a second accident 3 years later. I have five fused cervical discs, damage to my shoulder and back. I have six steel plates and some 25 screws holding my left ankle together. I have had a knee replacement and need another.

    After 14 1/2 years on morphine my meds were taken away a few months ago. Believe it or not I had very little trouble with withdrawal. But now no one will give me advice as to what to do about the pain. I have daily severe headaches, back aches, and knee and ankle pain. I have trouble sleeping and other complaints.

    From what I hear and read this is a common occurrence these days. Twenty years ago the medical professional said “Go ahead and give them the opiates. There is no problem.” Now all of a sudden they say “No, these are from the devil himself. You can’t prescribe them anymore.” The problem is these “professionals” have no idea what hell is. Would that each of them could experience 6 months of chronic pain. Then they would know what hell is and where the devil resides.

    • Your doctor took you off of your meds and provided you with no further pain management? That is awful! Some kind of continuity of care and the right to have your pain managed is certainly being violated!
      If your doctor knows you are in pain and disregarding that, I would simply ask “why? why are you disregarding the fact that I am in pain?”
      If your doctor does not have a good answer, it might be time for a new doctor. It sounds like you do not necessarily care if the relief comes from opiates, and perhaps you can find relief without it, that is not for me to say, I am not a doctor. I do believe that you deserve relief and if they have to start at the lowest measures and work up until they get to what relieves you of pain so that you can live a functional life, they owe you that. They took meds away and left you in pain. I believe that violates the very idea of “do no harm”.

  • A misdiagnosis of addiction can be based on an untrained physician’s confusion over addictive vs. pseudo – addictive behavior.

    Another problem is the blurring between addiction and dependence. The definitions of addiction in the DSM -5 contributes to this miasma of misinformation.

    A board certified pain physician (DABPM ) might help clarify your medical history.

    Sorry for your trouble. It is a sign of our opiophobic times.

    In telling your story, you help give voice to the many in similar situations.

    Now is the time for every person treated, mistreated, or under-treated for chronic pain to share their stories.

    We who are dependent on opioids because of intractable pain are not junkies. We must present the human face of pain and suffering.

    Thank you for sharing your story.

    @kwgmatthies

    • So many of the comments to this post got lost amongst spam. I think we resolved that. I agree that a large problem here is the lack of understanding that addiction is not the same as dependence. I explain to people that when I do not take my mood stabilizers for about 4 days I get a headache. That headache will not go away until I either a. take them again for a couple of days or b. finish the withdrawal. THAT is dependence and that is the same situation I am in with my pain medication. It is hard for people to see but that seems to help it make sense.

      I hope to make this a platform for any chronic illness story, but now, as the pain management universe becomes dire, this kind of story is very important. Even I, who has an amazing and very professional pain management physician, has been pressured and started to lower my pain meds. Fortunately, we are doing it very slowly and I am very stable. I am sure we will only get so far as I have EDS.

      Thank you for your comment, I appreciate hearing from you.

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