What Chronic Pain Patients NEED You To Know

This is an article that has been written perhaps thousands of times by as many different people with as many different conditions that fall under the umbrella of chronic pain. At the beginning of 2018, Utah was the first state in the US to battle test a new set of opiate guide lines meant for a single purpose-stop the rise in opioid related deaths by bench marking the legal amount of schedule 2 narcotic medications that a health care provider could prescribe.

In theory, its sound. Level the playing field where all doctors practice by the same standards, thus eliminating the ability to doctor shop, or find what doctors are willing to offer the most medication. Many people, including myself, went through drastic decreases in medication in order for our doctors to now stay on the right side of not only their DEA licenses, but of the law.

Everyone wants a safer world, a world with fewer tragedies and accidents like happens so often when dealing with chronic pain patients. Dosage varies to condition. Condition varies by person. Doctors vary by practice and prescription history. One thing here does not vary. The Hypocratic Oath. When doctors stop governing their behavior by that sacred oath, which vows to “do no harm” and instead treat their patients with “do no wrong”, problematic escalation is not a side effect, it is a guarantee.

That brings it back to the patients. The ones who need the medication. The ones that are either in recovery of some sort or those who have inherited through life or genetics permanent impairments that simply cannot be treated by physical therapy or other non-medication based best practices. There are a world of solutions outside of ingesting medication, and for that we are grateful. Yet, take a patient with a genetic kidney disease. What form of physical therapy, anti inflammatory or even surgery is going to make a difference once the condition has progressed beyond the means of a person’s self management?

Regardless of how we got here, we are here. We need help. Not just from doctors, but from the people that surround us in our daily lives. It is truly one of those monsters where if you haven’t experienced it, you couldn’t possibly imagine. Everyone has felt tremendous pain at on point or another in their lives. Everyone has a moment to reflect on to offer empathy. We don’t want you to walk in our shoes….ever. There are things, though, that we truly need you to understand.

We are not trying to live pain free. We are trying to live pain managed.

Think of the last time your back ached. Think of the way it effected you. Now imagine that back pain persisting to a level and length that you could only sleep sitting up, and for only short periods. Situations like this don’t deliver a mind set of “I want to get high”. Sleep is the agenda, and if a pain relieving medication can help achieve that, it is not an attempt to reduce the pain of being human, it is to sleep. We know we will always feel pain. We just want bright moments to live our lives like you do and most importantly, with you.

We have tried every course of action made available to us, repeatedly.

The majority of us know that the only time pain medication should be a first response is in emergency situations. We want to improve out bodies to reduce the pain, to decrease the burden we feel we place on others and to enjoy a quality of life that often feels out of reach. We have done physical therapy when it was a logical course of action. We’ve tried massage, chiropractics, alternative solutions like acupuncture. Every new method that is presented into the world of chronic pain as a tool of relief, we try. When all else fails, we turn to medication.

We are not all addicts.

Every single one of us is as aware as you are that narcotic medications are habit-forming. Yes, we know! For us, it is a chance that we have to take after all other options have failed us. We are happy that there are now doctors and clinics that deal with nothing but pain management. Working with doctors that understand usage and side effects helps to minimize the risk of addiction, overdose or just plain loss of control. Those that do use the channels of pain management centers are held to high account for the medication prescribed to us. We have random urinalysis to make sure we are taking what is prescribed and nothing else, as well as actually taking what was given to us and not selling or trading medications away. The penalties for failing random urinalysis is expulsion, with carries with it the high chance that other doctors will not treat you. We take this seriously. It is our lifeline.

We don’t rely on medication alone, even if it is the only thing that has helped.

Taking medication for pain is pure cause and effect. When you cut yourself, you disinfect and cover with a bandage if needed. If the cut is infected or you need stitches, you don’t just keep washing it and applying bandages, you see a doctor. Using my kidney condition as an example, I have a urologist, a nephrologist, a family practice doctor, a psychologist and a pain management doctor. These things are required of us because regardless of the chronic condition, we’re dealing with it for life. There is no one place that supplies all the answers. We have well rounded teams of specialist, each communicating with the others to ensure that everything possible that can be done is being done.

If/When there is a better way, we will take it.

We place our hope in ongoing research, both for our respective conditions and the treatment of pain as a whole. New doors are opening all the time, such as the legalization of medicinal marijuana in several states. Ketmaine (normally used as an animal tranquilizer), at proper dosing, has shown promising possibilities not only for pain management, but anxiety disorders, depression, memory loss and synaptic gap repair. We wait anxiously for something better. We search for studies we can be involved in to help the science along for others. We are, as much as possible, actively engaged in the pursuit of alternatives as the medical minds of our times are. We all want the same thing-a life where our decisions aren’t made based on the level of our pain.

We desperately need your support and understanding.

Living with chronic pain is nearly impossible to describe sufficiently to another person for the bonds of empathy to be reached. We know. We understand. We don’t want you to feel what we feel or experience what we experience. We don’t want to be coddled, we want to be supported. Pain is just one of many things we deal with. We develop emotional problems. Our appetites are changed. Our sex lives become destabilized. There are simply some things that we can’t do and other things that we many only be able to do rarely. We feel isolated when we’re surrounded by people that are active and full of life. We feel alone when we are the only ones not participating. We have had to surrender passions, goals, aspirations, dreams and hopes in order to cope with the daily grind that has been given to us. We need you to love us in spite of ourselves, to tell us that things are going to be OK when last minute plan changes happen. We don’t want this any more than you do and most of all, we’re trying. Every day.

I write this in hopes that someone out there who knows or loves a person with chronic pain issues will help to build more bridges and fewer walls. We often feel scorned by the media blitz that our current President began about the opioid epidemic in America. We know its real. Many of us have lost people to it as well. It scares us because it doesn’t apply to all of us. Please, try to remember the individual inside the pain and not the pain inside the individual. We are forever trying to make our way back to you and ourselves. With time, hope and understanding, we know it can be done.

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