There’s Such a Hysteria Going On When It Comes To Opioid Medication
By Barby Ingle
A few weeks ago I got a phone call from a ‘pain patient’ who said he was from California. He kept referring to questions that didn’t make sense based on his reported pain story. He ended his phone call saying he needed me to make sure that everyone vote for (his candidate of choice). I laughed first as I don’t talk about where I stand politically and I really don’t care who anyone else votes for. I care about other issues such as access to proper and timely care for patients around the world. My verbal response was ‘I don’t talk about politics and I don’t promote any one candidate publicly or privately’.
One of the other things I did say to this caller was “There’s such a hysteria going on about those who have died from overdoses and from patients who feel that opioids are helping them but they have or may be taken away. We need to find a way to address prescription drug abusers and chronic pain patients at the same time. We cannot forsake one for the other.” I have made similar statements in other media interviews. The first part of my sentence has been used in recent AP stories that have run, leading me to believe either my phone was tapped, or this ‘patient’ was lying about who he was and he was trying to get quotes for his story. The thing is, I would answer the same to the patient as I would to the reporter. My beliefs are my own, no one can buy them. You could change my mind with new presented information, but you don’t need to pay me to change my mind, just show me believable evidence.
It’s like the doctors who call me saying, I have a cure. As soon as you say cure, I am not going to believe you. All means all and that is all, all means. So slow down track stars and check out why I think that there is a hysteria going on, both sides included.
I strongly believe that the patient and their properly licensed providers should be making the decisions for what is best for the patient. I also believe that we need better access to care. And as I state in my book Remission Possible; Yours If You Choose to Accept It, published in 2011, “opioids activate glia”. When you have a nerve pain disease like I do our glia is already activated due to neuroinflammation. Opioids make it worse, they make us not care, but they also make our condition worse on a neuroinflammation level. (You can look up Dr. Linda Watkins for more scientific explanation on this).
We need to use a multimodality approach to chronic pain management over monotherapy (one treatment type such as only using opioids). Having lived with chronic pain for nearly 20 years and 14 of which is having diagnoses including reflex sympathetic dystrophy, arthritis, TMJ disorder, hypothyroid, ischemia, seizures, and thoracic outlet syndrome I am pretty sure I know what living life with chronic pain is like. I have tried many different treatment options. I have avoided opioid use since realizing it didn’t help my severe nerve pain, it only made me not care. I found a way to go from wheels (wheelchair) to heels (walking). Am I out of pain? No, I am not, but I have found effective treatments that work for me to help management my pain, and out of the top 5, 1 is a medication, and it’s not an opioid or NSAID, both of which have caused me additional challenges such as OIC and internal bleeding.
I also advocate for other patients. In doing so, I have heard from thousands of patients (of the millions who do use opioids on a daily basis) who swear by two things. First, they have no other treatment options being provided or access to those options due to costs. Secondly, there is no other option that they have been able to try that is successful or as successful as the opioids they use daily to have some sort of improvement in their daily life.
I know that there is not good evidence – based on scientific scores either way. Every test, needs assessment, research study can be torn apart by the ‘other side’. For me it comes down to, if I have something that helps me live a better quality life and function better, I want to have access to use it. For me that was not opioids, but that doesn’t discount the millions who do say it is helping them live. Or even those who were denied access to care, (any care including opioids) and they decided to commit suicide, or those who have the addictive gene causing them to abuse medication and other things in their life, some to the point of losing their life. I have lost many friends to suicide and a few to addiction. For those who were in pain and could not get access to proper and timely care, I don’t blame them for wanting to go to heaven and be out of the daily pain we feel here on earth. It is not my choice, but I do understand how someone can get to that point and want to die because they are not being helped here on earth. For those who use illegal drugs (and if you are abusing prescription medication that is illegal mind you, according to our governing laws) there is help and hope for you as well. It is becoming more and more available over the recent years. I can’t watch TV on any given day and not see the advertising for the rehab centers and help for you once you are ready to get it.
So where do we go from here. I believe that we do need more cautious prescribing and in bringing the opioid crisis to an end for abusers of prescription medications. I believe that opioids are an extremely important class of medication, especially when used to ease suffering at the end of life and when used short-term for severe acute pain. I believe that we need more efforts in abuse deterrent options both in medications as well as in lifestyle changes such as mindfulness and psychotherapy for abusers. Will ADF’s and behavioral techniques stop abuse? No, if an abuser doesn’t have access to one they will find a way to get the chemical change they seek. But will it help, yes.
I also strongly do not support legal constraints on clinical decision-making. Again, I believe it should be between the patient and their providers as to the care they receive. I believe that opioid prescribing can be reduced by providing accurate information about medication risks and benefits. I hope that providing all humans with the information on medication risks and benefits and letting them and their provider make the choice will help stop the hysteria on both sides. I think that we all have more common ground and if we could find a way to help both abusers and chronic pain patients get the proper and timely access to the care that they need that (and all humans for that matter), that our goals would be accomplished faster and safer. Let’s not forsake one for the other.
As the president of the International Pain Foundation our goal is education, awareness, social events and access to care. I have never spent any iPain funding on giving it to any legislators or lobbyist. Our funds go to our awareness and education projects. Our access to care projects are not funded, it is all done on volunteer time, effort, energy and story sharing by patients. I am 100% volunteer as are all iPain board members, delegates, and volunteers.
For the past two years iPain has been focused on creating the Music Moves Awareness project to accomplish our mission. Over 95% of the raised funds in 2015-2016, were used on our Music Moves Awareness projects in 2015-16. You can see the music video and purchase the song HOPE IS TRUE at www.hopeistrue.org The Music Moves Awareness project involves featuring patient stories, (We have 24 featurettes with a variety of pain conditions and using many different treatment options), iPain Webinars, HOPE IS TRUE music video/song for the public, and the 12 steps to patient empowerment. You can check out GuideStar to see our 990’s – International Pain Foundation is a dba so you will find us under Power of Pain Foundation, Inc. tax id: 47-3080556.
International Pain Foundation (iPain) supports the notion that chronic pain is a real and complex disease that exists either by itself or it can be linked with other medical conditions. As a charity, it campaigns for effective pain care through an array of treatment options, which are widely inaccessible. It also underlines that chronic pain is an unrecognized and under-resourced public health crisis with devastating personal and economic impacts. Most importantly, it operates under the belief that allowing people to suffer with unmanaged pain is immoral and unethical.
Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.
More information about Barby can be found on her website.