By Lorelei Bryan, Guest Columnist
I am a 51 year old wife, mother, grandmother and businesswoman, among other things. Along with all of those other titles and roles, I am a person who lives with chronic pain.
I do not like the label “chronic pain patient,” as it carries with it more stigma and derogatory implications than ever.
In 2010, I began to experience extreme pain near my left ear. Suspecting an ear infection, I went to my primary care physician. After examining me and asking a lot of questions, he said I had no infection and that he suspected this was related to the temporomandibular joint (TMJ) in my jaw. Like most people, I had heard of TMJ and thought it was the result of grinding or clenching my teeth. A visit to my dentist confirmed that there was no evidence of grinding or clenching. He was at a loss.
Thus began my two year journey of one oral surgeon after another, one therapy after another, and one failed surgery after another, trying to get this condition resolved. All the while, I battled between the primary care doctor and the surgeons on which of them was going to write the pain medication prescriptions I needed to keep functioning throughout this ordeal.
Finally, after two years and seven surgeries of various types, I was referred to an oral surgeon who specialized in TMJ patients with advanced and rare conditions. A cat scan revealed that arthritis had destroyed almost all of the bone structure in my jaw. I had to have two more major surgeries; one to remove what was left of the diseased bone and the second to install custom made titanium jaw parts.
The surgeon warned me that the procedures would restore function to my jaw (I could not open my mouth more than a few millimeters), but that I may be left with chronic pain. He was right on both counts. The combination of the multiple surgeries, scar tissue, damage to the surrounding structure, and permanent nerve damage left me with severe chronic pain from trigeminal neuralgia that will never improve.
During the final two surgeries, I was working with a pain management specialist who knew my surgeon. All was well, as they communicated regularly and I was receiving pain medication that allowed me to manage my pain to the point of having a relatively normal life, although not completely pain free.
In 2014, 18 months post replacement surgery. I received a letter from my pain management doctor explaining that he was no longer treating pain patients. No additional prescriptions would be given to any patient and no referrals to other doctors or pain clinics would be provided. Just like that, everyone he treated for pain was dropped. Of course, I panicked, as I’m sure many of his other patients did. Being dropped by a doctor for no reason and with no support for transitioning to another provider feels like betrayal.
I sought help from my primary care provider and, fortunately, he said he could treat my pain himself. I was very relieved and grateful to him. For three years he and I worked together to manage my chronic pain, including the trigeminal neuralgia that the surgeries caused. We were able to use a combination of Tegretol and oxycodone that reduced my need for oxycodone by 20mg per day, as compared to the dose I was on with the pain management specialist.
Never before had my pain been managed to the point it was. He and my pharmacist know each other well, and the three of us worked together to manage my pain.
The War on Drugs Targets the Wrong People
Fast forward to June 2017. I go in for my every other month appointment with my primary care provider. He does his exam, we talk about my other medical issues, and then he gets a grave look on his face. “I can’t write the oxycodone for you anymore,” he says.
I am thrown. He explains that the state has instituted strict limits on who can be prescribed narcotic pain medication and very strict limits on the amounts. I couldn’t breathe. Thoughts of what life would be like without having my pain effectively managed ran through my head -- reduced job performance, reduced job attendance, possible job loss, checking out of the lives of my children and grandchildren, suffering and crying all day like I used to.
When I gained a little composure, I said, “We are talking about my quality of life here. I know why this is happening. This so called ‘war on drugs’ is creating a war on the wrong people.”
My doctor agreed that I am a model pain management patient, a “poster child” for the appropriate use of narcotic pain medication. I see only him. I use only one pharmacy and he knows the pharmacist personally. I take the medication according to directions. I do not doctor shop. I do not ask for early refills. I follow all the rules and still I have to suffer, so that a bunch of bureaucrats who have no right getting involved in what my healthcare provider deems appropriate for me, so they can pat each other on the back and congratulate each other for “striking a blow in the opioid crisis.”
When I put it that way, the doctor agreed that I was a prime example of a responsible patient who needs this medication and is not a high risk. He agreed to continue writing the narcotic pain medication prescriptions, but explained that new state laws meant we had to almost cut my dose in half.
I am now trying to manage on much less medication. The increased pain level makes it difficult to concentrate at work. It has made me withdraw from my husband. And it has impacted my ability to be the mother and grandmother I should be.
These bureaucrats and politicians are causing needless suffering for thousands of people in pain, while doing virtually nothing to stem the heroin overdoses that are the prevailing reason for the opioid crisis in the first place.
Is there a serious issue with abuse and addiction to narcotic pain medication? Of course there is, and something should absolutely be done to address it. But taking away medication needed by people in chronic pain is not the answer. Limiting or denying medication to legitimate patients who need it to live and function with any quality of life only creates another crisis. More and more people turn to illegal drugs or, worse yet, commit suicide because their medication has been taken from them and they cannot endure without it.
My question is this: where is our voice? For all of the politicians and celebrities speaking out on the war on drugs, who is speaking out on the other side of this? If someone of consequence and influence does not speak out for people in pain, these new laws and limits will create just another silent epidemic and the war on drugs will take more lives than ever.
Lorelei Bryan lives in Virginia.
The Virginia Board of Medicine recently adopted emergency regulations that require doctors who prescribe more than 120mg morphine equivalent (MME/day) to a patient to document the justification for the dose or to refer or consult with a pain management specialist. It does not expressly forbid doctors from prescribing more than 120 MME/day.
Pain News Network invites other readers to share their stories with us. Send them to: editor@PainNewsNetwork.org.
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.