By Ellen Lenox Smith.
As the country seeks solutions to address the opiate crisis, those living in extreme chronic pain appear to be ignored. Many of these patients have utilized opiate-based medications for years without experiencing the negative impact of addiction. For many, opiates are the only effective treatment for their pain. For many, there is no alternatives left for them, since other medications have not been as successful for them. I understand that there are side effects to these medications, but what about those who have relied successfully on these medications to manage their pain and thus experience a higher quality of life not dominated by relentless nauseating pain? If this could give you a chance for a better life living with chronic pain, wouldn’t you have consider using them too? Many of us would love to never have the need for any medications, but sometimes we have to do what is necessary to sustain any quality of life.
I have recently had a good friend be informed by her pain doctor that she is the last of his two patients to whom he is left prescribing opiate-based pain medication. But unfortunately, in one month, he will no longer prescribe the medication that has helped her. This individual has been utilizing these medications for years.
She had not become a drug addict. She is a pain patient receiving sound and effective medical treatment. She has been closely monitored by her doctor. But now, she is being told that he will no longer be able to prescribe her medication due to the pressure on doctors concerning prescribing them. He told her he would instead, put her back on medication that was never compatible to her body. This medication made her feel sick thus violating the most fundamental and universal principle “To Do No Harm.”
This frightening news caused this vulnerable, compassionate woman to return home feeling frightened and scared to death as to how she would be able to cope living with CRPS, EDS, RA, Gastroparesis, Chiari & more without her effective medication regimen. Since 2003, she has been successfully maintaining her pain levels using 8mg Dilaudid & Fentanyl patches. In one month, they will no longer be prescribed and she will be facing serious sustained levels of pain, loss of quality of life and the feeling of being abandoned. Does anyone even take the time to understand not only the physical impact but the emotional impact the lack of effective pain management has on all pain patients, but particularly those suffering chronic conditions? The lack of effective pain control will most often trigger a whole host of other medical and psychological issues as it did with my friend.
The following morning after receiving this news, she ended up having a mini stroke brought on by this stress. And she is just one example of the trauma that is being brought on by announcing to one living in chronic pain that their medication will no longer be prescribed. Fortunately, she survived this stroke but stories such as this do not always have a happy ending. Many chronic pain patients deprived of the tools to manage their pain have felt so desperate. The end up feeling lost and alienated from society and the medical profession, in particular with the knowledge that such a cruel, inhumane and unnecessary action can return them to the hell from which these effective medications had delivered. Sadly, many are making the choice to end the misery imposed upon them by committing suicide. To those unable to secure medical treatment to manage endless days of anguish and pain, suicide is for many, a rational alternative to a permanent condition. Is this really how we want to treat these people living with chronic pain?
When you live in chronic pain, your choices are not always what you would hope for, your particular condition may dictate that you are forced to deal with your issues and consider choosing life over medications that others may find controversial and not considered the better choice. I personally have to live on antibiotics for life to help ward off the effects of sarcoidosis. I know that is not a great thing to put into your body daily, but without that small dose, my body rapidly declines into a state of pure exhaustion and listlessness with no hope of any quality of life. So, what would you do, take the antibiotics that work or become bedridden? The same is for those of us that have had to turn to cannabis and ketamine, both controversial mediations to many in society. But those happen to be all my body can metabolize. For me, these relatively controversial medications have proven empowering. These drugs have allowed me to take control of my life to the extent possible. I can think, feel and be active on my better days with Ehlers-Danlos Syndrome. To this day, many in the medical profession and in society at large would, if it were in their power, not allow these two medications to be used and I would either be dead or permanently confined to a wheelchair. I had to fight for the right to obtain access to these medications which for me, proved to be both life giving and life enhancing. If I got caught up on others attitude about these two medications, again, I would perhaps not be alive at this point. These two medications have allowed me a chance to live. And for those using opiates successfully to treat their medical issues, do they not deserve the opportunity to live a better quality of life, too? Just because others in society have had a negative result from using them does not mean all should be eliminated from their use, especially those that have successfully been using them to live their life not being a slave to their pain but effectively managing their pain.
According to an NBC article written by Maggie Fox, July 10, 2018 entitled Pain Patients beg FDA for more options, easier access to opioids, people with chronic conditions cope with prescription restrictions and limited alternative therapies amid the nation’s opioid crackdown, the CDC and FDA is not regulating physicians. Instead, it is the states doing this. She reports that twenty-eight states have some limits on opioid prescriptions and seventeen limit prescriptions to three to fourteen days. This is according the National Conference of State Legislatures.
One suggestion I do have for those that are also being taken off their opiates is If you, too, have an issue with metabolizing medications and are at a loss as to what to turn to, consider having a DNA Drug Sensitivity test done. With a simple swap of your mouth sent back to their lab, you will receive a list of what else your body is able to tolerate. For the rest of your life, you will be able to use your DNA results and be sure a new medication is safe and is compatible to your body chemistry. In this way, you don’t have to worry as to whether you are going to react and not have positive results.
For those who are watching family and friends suffering due to the reduction and/or loss of their opiates, take time to call or write your state legislatures and your Senators and Congressman. Keep this other side of the story alive and share the horror this is doing to these people you care about. Also, consider writing letters to the editor of your local papers. Keep educating others out there who feel this is only about addiction issues to be resolved and help to share the stories of those living in chronic pain who are now left to feel alone and with little to no hope for their future. They may not be able to speak out, so try to be their voice!
May Life Be Kind to You!
Ellen Lenox Smith
Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/
Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!
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 National Pain Report.