What To Do When You're Labeled A Drug/Opioid Abuser
Answered by Heather Grace
First, I'm so sorry you're dealing with such a serious issue. It can be hard enough to find effective pain management if you're the average chronic pain patient. This is a tough spot to be in, as you've already discovered...
Any patient in your shoes would need to focus even more intently on the advice given in the article, "Tips & Secrets: How to Find a Good Pain Management Doctor ."
It becomes especially important to ensure physicians see that you are suffering from chronic pain. How do you do this? It may be useful to provide prospective physicians information on the OBJECTIVE signs of severe pain: http://pain-topics.org/pdf/Tennant-PainSigns.pdf. Medical professionals often refer to pain as the 5th vital sign, but how many actually look for it in their patients? Why not give them their own copy of this article, to keep? (Personally, I think it's groundbreaking information. So many doctors believe pain is a subjective complaint, when in fact, there are many signs!)
Now, let's address the label you received: What is the reason you were called a DRUG/OPIOID ABUSER? Was it a legitimate label--did you have a problem with substance abuse? Or, was it perhaps from a doctor who misunderstood your behavior, classifying you as an abuser for signs that were actually pseudoaddiction? Remember, patients who are UNTREATED or even those UNDERTREATED can be very confusing to physicians who don't truly understand pain!
Here's more on pseudoaddiction: http://www.addictionmanagement.org/Pseudoaddiction%20versus%20Addiction%20in%20a%20Pain%20Population.pdf. You may want to bring this to a doctor's visit, as another piece of information for the doctor to keep.
More on Pseudoaddiction
Many doctors don't know enough about pain. They can be completely in the dark about pseudoaddiction, or dismiss it as an excuse. It's very possible these physicians have dismissed patients needlessly because of it. I wish there was better education about this condition on both sides. When there's not adequate pain relief, pseudoaddiction is just as scary for patients as it is for doctors. Neither may be quite sure what to make of it, which only makes pain management that much more elusive.
Now let's discuss your records: I know it's frustrating to believe that the doctors you've seen aren't writing down any information that is useful to document your history of pain. However, you should STILL bring all available documentation you have regarding past treatment of scoliosis and associated chronic pain/nerve pain. And, for any lost records, request copies from those doctors/hospitals. You will especially need to provide: info on the diagnosis/treatment of scoliosis and your pain, as well as records for all care SINCE the label. Also be prepared to explain the classification of "addict" from your viewpoint, how your pain level has been since then, what you've been doing to treat pain since, etc.
Keeping a pain diary is vitally important, even if you start today. What to include: What's your pain at it's worst for the day, and at the best? What's the average pain level for the day? Take a paragraph or two to describe how you felt and what you did about it... how you tried to lessen the pain, even if it was trying to fall asleep.
Though it feels like you have no "proof" of a "serious" problem, this is not entirely true. Having a stack of past records with you is impressive. Most people don't bring much evidence of past treatment. Your past treatment was extensive, so why not let prospective doctors see this? In your case, this helps combat the negative label. These records show you have stuck with it--seeking treatment for 35 years. This is proof YOU know something's wrong and aren't giving up the quest for appropriate pain care. You didn't drop out, as an addict might.
Try to be as detailed as you can when putting this together--it can't hurt. You might want to organize your files using tabs for "doctors records" vs "diagnostics" or "hospital stays" and organize everything in order of year, much like you see in medical settings.
Showing consistency means something. There are other ways to prove yourself than a series of doctors who may not understanding your pain. Such as: your own 35-year history, concisely worded on a single page front/back if you can. List of all treatments (prescription, non-prescription, specifics of physical therapy, creams, whatever) you've tried for the pain, all docs you've seen, all surgeries, xrays/MRIs and other diagnostics(copies if you have them), number of years in treatment, date of diagnosis, etc. In addition to the records, bring all pain diaries. Bring all info on YOU/your illness that you can. Even if you only show him the overview pages, that stack of data is proof that you are not a flaky person. Not just a drug-seeker. (Don't hurt yourself! You may want to get yourself a cart that holds paperwork--they sell these at office supply stores.)
Bring all your info, as well as an advocate... a loved one who believes in you and knows how much you desperately need care. Let them chime in from time to time, explaining their concern for you--what specific issues they've seen, etc. And, even if you are having a tough pain day and feel awful leading up to your appointment, pay special attention to grooming: shower, clean clothes that have no signs of wear, neatly done hair, etc. Same with your advocate. You are representing yourself as a patient in everything you do, leaving that doctor with no doubt in his mind.
Be prepared for a skeptical attitude from some doctors. Pleasantly answer all questions, even if they seem overly intrusive or harsh. Never act out or show anger--show that doc you want his help and are prepared to work for it. You want to prove yourself 100%. You will undoubtedly be asked to sign a contract regarding appropriate medication use. And, you will also likely be tested at every appointment for compliance, typically using a Urinary Drug Testing (UDT). If at any point you get a result which puts your honesty in question, your behavior at that point is key. Explain you believe there must be an error. Ask immediately and calmly for a BLOOD TEST. (UDTs are problematic and can be inaccurate.)
HOW/WHEN TO DISCUSS THE ISSUE:
When making an appointment, it is best not to bring this issue up. Instead, wait til the visit. And, be prepared to bring this up as part of your medical history, but don't make it a huge deal. Tell the doctor whatever the situation is, in the same tone as you told all other details. Do so at a point when you've built a decent rapport with the new doc.
I'd do so during a brief overview of care in the last 5-10 yrs. After you've told him all the history leading up to this two-year period, you tell him the situation calmly. You might say something like: "Then, I saw Dr. X. Unfortunately, he did not understand the extent of my condition. My treatment under Dr. X did not adequately manage the pain. Because I was in so much pain--I became desperate, calling him several times in between visits. I explained to office staff that it was an emergency and I needed medication asap--more than he had previously prescribed. I believe this is why I was given the label 'opioid addict' when in fact I was exhibiting signs of pseudoaddiction. As I've explained, I have severe nerve pain from scoliosis."
Be sure to let the new doc know what you've had to do to attempt pain care since then. Continuing to seek care at a drug abuse clinic because it's the only option you could find? In my book, that means you are desperate for pain care and want help any way you can get it. This means something too. You need someone to just hear you, understand you, help you. Be open and honest with any prospective physician, but always represent yourself in the best possible light. No emergency calls. No lost pills. No suspicious behavior of any kind for any reason.
I believe you will find someone who will help you, because I have personally seen it happen. A woman with severe pseudoaddictive problems was self-medicating with alcohol and hard drugs. She was given a chance by a doc I know. If she can, I have faith that you can as well.
You haven't given up hope and that's huge. Keep fighting for care til you find someone who will listen. If you have a tough time finding a doc in your area, please feel free to contact me for further assistance on Twitter: @IntractablePain. Best wishes, I know it's tough! -HG
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