By Carol Levy, PNN Columnist

Decades ago, my pain management doctor suggested that my family doctor write my codeine prescriptions. “Dr. Feld” had no problem doing so.

The last time that I saw Dr. Feld and asked for the prescription, he had me sign the opioid consent form and provide a urine sample. Then he called in the prescription to my pharmacy. No muss, no fuss.

Dr. Feld just retired, so I saw one of the new doctors in the practice. I was there for another reason but asked, “As long as I'm here, can you call in the codeine prescription?”

To my surprise, the new doctor said, “Yes, but I will only give you 30 milligrams, not the 60.”

“Dr. Feld has been giving me 60 milligrams for years.”

“Well, I won't. I'll only give you half the dosage.”

This was the first time the new doctor had seen me, so he knew little about me or my diagnosis. There were no questions about my level of pain, when I took the codeine, or why had I been taking it less often. Nothing. He decided I was going to get less and reality didn't matter. 

This jumping to conclusions seems to be pervasive. I had neuropsychological testing a few weeks ago. I was having some issues with recalling words and wanted to be assured all was well with my cognitive abilities.

When I received a copy of the report, I was upset. The doctor had couched many of the results in his preconceived notions about me, rather than reality. Some of it could have easily been rectified in the follow-up appointment, if he had bothered to ask. He could have asked why I seemed anxious throughout the testing or if I was depressed. Instead, he drew his own conclusions.

Missing from the report was the fact that I had to stop at one point during the test due to the pain. When I told the tester that I needed to take a pain pill, she told me they didn't want me to do that.

So yes, I was anxious for the rest of the test, not because I had anxiety but because I had pain and knew that each additional part of the test could well make the pain worse.

The depression he thought he found was in response to questions about my life circumstances. I checked yes to “Do you feel isolated?” and “I do not go out much.” That is my life circumstance, because of the pain. 

Understandably, many doctors are afraid to give us the opioids we have been on for years or to give us the same dosages. They’re afraid of the FDA. But I am also finding, in my singular experience, that it may be because they just don't care about our circumstances, our pain or the benefits that opioids provide, allowing many of us to have fuller lives.

It is not acceptable when our medical records contain falsehoods that are based on preconceived notions or the laziness of those who examine us.

When I went to the online portal to see my medical records, I noticed the doctor wrote about tests and exams he didn't do. The results for them were patently false, indicating I could do things like move my neck fully, which I am incapable of doing. I contacted him through the portal, telling him what he wrote was wrong. To his credit, he changed it.

At first, I didn't like the idea of a portal and too much personal information being online, even if it was behind a firewall. But now I find it is an excellent instrument for seeing if the doctor, nurse, or tester posted accurate results and if my records contain falsehoods.

We don't have a lot of power when it comes to what is put in our medical records, what is ignored, or flat out wrong. I used to think getting my records when they were on paper was not worth the effort, because there was no way to set the record straight. But now that I can read the reports online, I fell like I have been empowered to correct them.

We must take back as much power as we can. Take a moment and check your medical records. And, if necessary, tell them what they got wrong. 

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.