Chris Jolley

@romans8910o | contributor
I am a chronic pain patient and had my pain medication was stopped because of this opioid problem. I livedmin a dark room for the last 1 1/2 years.i

How It Feels to Be Force Tapered Off Pain Medication

It’s that time of the month again. I’m headed to my pain management doctor (more like my PO or parole officer) for a monthly checkup and prescription refill. It’s the same every month…I sit in an over crowded office for over an hour, after my actual appointment time. I’m called back by the nurse to a room where I am asked to leave all my belongings. I’m given a cup with my name, DOB and date on it to pee in. I go into the bathroom, clean “down there” with a sanitary wipe, open the cup, start peeing, catch the pee in the cup (sometimes I accidentally pee on my hand, gross!) close it up, wipe myself and place the cup within the little box in the wall. I open the bathroom door to let the nurse know I’m finished. She comes in to look everything over, flushes the toilet and lets me know I can wash my hands. I’ve never been arrested or gone to jail, but I certainly feel like I have now. It’s like I’m visiting my parole officer monthly, instead of my doctor. I go back to the room where the nurse originally had me leave all my belongings, and now I wait. My doctor comes in and doesn’t make eye contact with me any longer, goes straight to her computer and asks how I’ve been and if there’s any new symptoms or health issues since last visit. I tell her “my quality of life is slowly going down the drain since she started to force taper me off pain medication.” I must have struck a nerve because she finally looks me in the eyes and states “it is not her fault and her hands are tied due to the CDC guidelines” and “there’s nothing she can do about it.” I think about letting her know, I’m in on her little secret. No one is forcing doctors to taper their patients living with rare and painful diseases. Doctors have bought into the “Fear of Addiction” media, the US government, the Drug Enforcement Administration (DEA) and the Centers for Disease Control and Prevention (CDC) has sold us all on. Instead, I smile and shake my head yes. Yes, I know she’s afraid that the DEA will barge into her office, take all her patient files and threaten jail time. Yes, I know she’s afraid to lose her career she’s worked so hard for. Yes, I know about the kickbacks doctors (maybe not her) receive now, if they lower their patients under a certain percentage off their pain medications. Yes, I know that she is no longer my doctor, the government now controls what medications I receive, how much I receive and how often I receive it. My doctor stares at her computer monitor and asks me again, “do I have any new symptoms or health issues.” I tell her it takes me longer to get going in the mornings. One of my major health issues is complex regional pain syndrome (CRPS) in my arms, upper body and head. My hands usually swell three times larger than normal every morning. I let her know that my neck pain is getting harder to keep under control. I’ve broken it two times in two different car accidents, which led to five neck surgeries. She tells me that my pain levels will go up as she tapers me, and then will start to lower once I’m completely tapered and my body adjusts to having no pain medication. She must be kidding?! I understand withdrawal. I’ve tapered myself several times off pain medication when preparing for ketamine infusions. My pain always did go up as I tapered, but it definitely didn’t “go down” or “go away” after my body adjusted to no pain medication in my system. Maybe she doesn’t believe the several diagnoses is accompanied with pain. Maybe she doesn’t believe I’m actually in that much pain? She lets me know that I should prepare myself with the reality that she will completely taper me off all pain medications in the next few months. I don’t say anything. I fight with myself on how to respond. I would love to give her a piece of my mind, but I know that will do nothing except give her a reason to dismiss me as her patient, immediately giving me a one way ticket out of the little care I still receive and probably red flagged for life on my medical records. I decide to be the good and docile patient. I ask her if there’s any other medications or alternative therapies I can try? She smiles a little. She starts going through the different groups of medications I can try: gabapentin, different anti-depressants used for pain, blocks I can get in my neck, ketamine infusions, NSAID’s…I stopped listening at this point. I’ve tried what she’s suggesting at some point in my 25 year career as a patient. I let her know I will research everything she suggested and next month we can go over these new options. She hands me my prescription and leaves with a “have a great day.” I leave my appointment feeling helpless, hopeless and scared. How is it that as a United States citizen I am now treated as “junkie,” a criminal and a drug seeker? I’ve always taken my medications as prescribed. I don’t take illegal or street drugs. I’ve always been a great patient, following my doctors instructions and willing to try new medications and therapies when asked too. Living with health issues for over 25 years, I’ve tried most medications and “alternative therapies.” I’ve always been realistic and careful when taking my pain medications. Pain medication will never take the pain away completely. It takes the edge off just enough to sleep and function throughout the day. I’ve learned to use a combination of medications, therapies, diet and exercise in order to achieve the best quality of life. Taking away pain medication from patients living with constant and high levels of pain is barbaric and wrong!

Esther Smith

Why Friends Misunderstand Chronic Pain

Many communication barriers exist when it comes to describing chronic pain to family, friends, and other interested and uninterested parties. It has been said time and time again – something about chronic pain defies description. And if you are like me, you begin to dread those instances when you are faced with explaining your situation to healthy individuals who inevitably won’t truly understand. In the midst of chronic pain, few things are more frustrating than taking precious time and energy to go into the details of your pain, only to be met with unsolicited advice, vaguely related stories, and various other responses that miss the mark of what you just so honestly and personally shared. We all have stories of being hurt or misunderstood. Conversations seeking to explain our chronic pain so often go awry, bringing increased confusion instead of clarity. Likely there are many reasons for this. At times there is an unwillingness to honestly share and a hesitancy to carefully listen. The subjective nature of pain is much better described through metaphor and art than everyday conversations. At times people are unempathetic, make unkind assumptions, or even completely disbelieve you. Yes, these reasons are definitely culprits, but I do not believe any are the main culprit, the main reason, or the underlying thread that leads to the most confusion. So often I look back on conversations with friends, and the misunderstanding doesn’t make sense. Many of my friends are exceedingly kind, and they truly want to understand. I am blessed to have friends who ask questions about how I feel, and really want to know the answer.  But, good intentions aren’t always enough, and on many occasions, the conversation ends with my realization that despite both of our best efforts, my kind and understanding friends are still largely unaware of what I am actually experiencing. Why is this? When honest and careful conversations end in misunderstanding and confusion, what is the underlying issue that we need to address? A few recent conversations have brought to light what I believe to be the main reason for this misunderstanding. The number one reason our healthy friends fail to understand our pain is because as we speak our stories of chronic pain, our friends are listening and responding based on their past experiences and memories of acute pain. Besides a select few individuals born without the ability to experience pain, the general state of physical pain is a common experience that all humans share. As our friends listen to us, they think they get it because they have also experienced pain, and quite understandably, they draw on those memories to understand our pain. We all do this – when we are trying to understand someone else, it is common human behavior to seek to understand through the lens of our own life experience. You can quickly see some glaringly obvious problems when the differences between chronic pain and acute pain are not known or recognized in these everyday conversations. And many problems surface when we rely on our own experiences to understand the experiences of another. So what are the specific problems? And how do we address them? 1. The average person does not know the difference between “acute” and “chronic” pain; these words must somehow become embedded in our everyday vocabulary. To the average person, pain is pain. If we want to be understood, those who experience chronic pain must somehow convey the fact that chronic pain simply can’t be compared to the time-limited experience of acute pain. In the aftermath of acute pain, you slowly gain progress until you get better. Chronic pain persists with either an uncertainty of how long it will last or a certainty that it will never go away. The increasingly multiplying effects of pain over time cannot be overemphasized. Pain multiplied over time becomes an entity of its own kind, composed of many mental, emotional, spiritual, physical, and psychological consequences that combine into something much greater than the sum of its parts. We somehow must convey that our experiences of chronic pain are different than experiences of acute pain that seem deceptively similar. We must learn to say, “Imagine pain that never goes away – that is chronic pain, and it is much different than acute pain which has an end. The story you referred to is much different than my story.” 2. We too easily equate somewhat similar experiences; we must realize that our individual experiences are much different from each other than we realize. When someone shares a story, so often we have a somewhat similar story in mind that we are reminded of. We begin to think that human experiences are more similar than they actually are. Just like acute pain can’t be compared to chronic pain, no two chronic pain experiences are the same. Generalizing can be helpful because it lets us know we are not alone – we do feel similar things. But sometimes our responses to similar events are deceptively different. Assumptions are dangerous. Assumptions miss the person in front of us and make us think we understand when we really don’t. We must learn to say, “ I can see why you would think that experience was similar to mine. But I actually don’t relate to it. I wouldn’t want you to think that I feel the same way, because I actually feel much different.” 3. Pain memories quickly fade and we look back on past pain through the lenses of rose-colored glasses; we should focus on the person in front of us instead of our unreliable memories. On good pain days I look back at the bad pain days and they don’t seem as bad. Then the bad days come around and I am again reminded of the fiery intensity of what must be endured. Our mind and memories shield us, to some extent, from the intensity of our past suffering. If I can forget how bad my pain was last month, how much more so will a healthy person forget the surgery they had three years ago? It is just the way our minds work, and because of this, we must constantly be focused on the person, experience, and story being told instead of on what we remember. We must learn to say, “When you said that, I felt like you minimized my pain. Pain is easily forgotten over time, and my experience is likely more difficult than you are imagining.” 4. We misunderstand how to accurately “put ourselves in another’s shoes”; we must redefine and re-understand how to be empathetic and truly understand another person. Empathy has been defined as putting yourself in another person’s shoes. But, we must be careful how we envision this metaphor. If we imagine this metaphor as placing our own body in the other person’s experience we will miss the mark. We can experience the same thing, with vastly different results depending on personality, physical strengths and weaknesses, genetics, family background, and many other factors. Putting ourselves in another’s shoes means we actually see through that person’s eyes. We don’t wonder what that particular experience would be like for us. We seek to understand what that experience is like for the person in front of us. We must learn to say, “I think you are missing what I am trying to say. Let me try to explain again.” What barriers do you experience when trying to explain your pain to others? Have you given up explaining, or do you keep trying? What has worked well for you in helping others understand? This blog was originally published on Life in Slow Motion. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by oneinchpunch

Community Voices

Point? There IS no point...

There IS no point. Hotlines treat me as my thoughts and feelings are trivial. ER’s have treated my full blown anxiety attack where I can’t breathe and pulse is racing, like I’m wasting their time and space. I am worth NOTHING to EVERYONE....mostly myself. I woke up this morning and wish I hadn’t. I made sure (I thought) that I wouldn’t wake up. Obviously I’m a fuck up at that too. #Depression #Anxiety #Suicide #ChronicPain #ChronicIllness #Noonecares #allalone

42 people are talking about this
Chris Jolley

Being Forced to Taper Off Pain Medication

I was with my pain doctor on the same medication for 20 years when the medications that control my chronic pain were stopped without my consent. On that day in April 2017, I arrived at my doctors office for a routine follow-up when a doctor I had never seen before walked in. He told me he was brought in just to take everyone off their pain medication within one month. Because I broke into tears and begged for an extra month, he gave me one full prescription and began the forced taper the following month. My worst pain comes from chronic cluster migraines, a back injury with a rupture at T-10, T-11 and my neck is fused. I also have fibromyalgia, chronic kidney stones and severe facet joint degeneration. The fourth week of August 2018 I was having one of the worst cluster migraines have ever had, and it was on its 10th day. The T-10, T-11 was really hurting and kidney stones had started to pass. I was in horrific pain and considering suicide. My contract with a new pain doctor requires me to contact the clinic if there is a problem. My son called the clinic to tell them because of the horrific pain he was taking me to the hospital. He was told he could take me, but under no circumstances could they give me any pain medication. My son called three more times; on the last call they told him we must have the doctor’s permission and he had already gone home. No human should be forced to live in horrific pain. As a person in constant incurable pain I am one of the millions who were forced into a taper or the pain medication was stopped completely. A family pet would be shown mercy and never be forced to live in pain. I live in unbearable pain 24/7. I’m one of the many people in pain whose doctors have abandoned us and ignored our pleas for help. Many pharmacists profile us based on their perception of our appearance. Some will not even fill prescriptions from cancer patients. I have disability benefits awarded by my government for intractable pain, yet I suffer discrimination and cannot get treatment for that pain. Until our government admits the epidemic is about street drugs like fentanyl and heroin and stops persecuting people in pain, there will be more and more deaths by overdose from street drugs and more pain patients suffering. Where do we go from here?

Chris Jolley

Being Forced to Taper Off Pain Medication

I was with my pain doctor on the same medication for 20 years when the medications that control my chronic pain were stopped without my consent. On that day in April 2017, I arrived at my doctors office for a routine follow-up when a doctor I had never seen before walked in. He told me he was brought in just to take everyone off their pain medication within one month. Because I broke into tears and begged for an extra month, he gave me one full prescription and began the forced taper the following month. My worst pain comes from chronic cluster migraines, a back injury with a rupture at T-10, T-11 and my neck is fused. I also have fibromyalgia, chronic kidney stones and severe facet joint degeneration. The fourth week of August 2018 I was having one of the worst cluster migraines have ever had, and it was on its 10th day. The T-10, T-11 was really hurting and kidney stones had started to pass. I was in horrific pain and considering suicide. My contract with a new pain doctor requires me to contact the clinic if there is a problem. My son called the clinic to tell them because of the horrific pain he was taking me to the hospital. He was told he could take me, but under no circumstances could they give me any pain medication. My son called three more times; on the last call they told him we must have the doctor’s permission and he had already gone home. No human should be forced to live in horrific pain. As a person in constant incurable pain I am one of the millions who were forced into a taper or the pain medication was stopped completely. A family pet would be shown mercy and never be forced to live in pain. I live in unbearable pain 24/7. I’m one of the many people in pain whose doctors have abandoned us and ignored our pleas for help. Many pharmacists profile us based on their perception of our appearance. Some will not even fill prescriptions from cancer patients. I have disability benefits awarded by my government for intractable pain, yet I suffer discrimination and cannot get treatment for that pain. Until our government admits the epidemic is about street drugs like fentanyl and heroin and stops persecuting people in pain, there will be more and more deaths by overdose from street drugs and more pain patients suffering. Where do we go from here?

Chris Jolley

Being Forced to Taper Off Pain Medication

I was with my pain doctor on the same medication for 20 years when the medications that control my chronic pain were stopped without my consent. On that day in April 2017, I arrived at my doctors office for a routine follow-up when a doctor I had never seen before walked in. He told me he was brought in just to take everyone off their pain medication within one month. Because I broke into tears and begged for an extra month, he gave me one full prescription and began the forced taper the following month. My worst pain comes from chronic cluster migraines, a back injury with a rupture at T-10, T-11 and my neck is fused. I also have fibromyalgia, chronic kidney stones and severe facet joint degeneration. The fourth week of August 2018 I was having one of the worst cluster migraines have ever had, and it was on its 10th day. The T-10, T-11 was really hurting and kidney stones had started to pass. I was in horrific pain and considering suicide. My contract with a new pain doctor requires me to contact the clinic if there is a problem. My son called the clinic to tell them because of the horrific pain he was taking me to the hospital. He was told he could take me, but under no circumstances could they give me any pain medication. My son called three more times; on the last call they told him we must have the doctor’s permission and he had already gone home. No human should be forced to live in horrific pain. As a person in constant incurable pain I am one of the millions who were forced into a taper or the pain medication was stopped completely. A family pet would be shown mercy and never be forced to live in pain. I live in unbearable pain 24/7. I’m one of the many people in pain whose doctors have abandoned us and ignored our pleas for help. Many pharmacists profile us based on their perception of our appearance. Some will not even fill prescriptions from cancer patients. I have disability benefits awarded by my government for intractable pain, yet I suffer discrimination and cannot get treatment for that pain. Until our government admits the epidemic is about street drugs like fentanyl and heroin and stops persecuting people in pain, there will be more and more deaths by overdose from street drugs and more pain patients suffering. Where do we go from here?

Chris Jolley

Being Forced to Taper Off Pain Medication

I was with my pain doctor on the same medication for 20 years when the medications that control my chronic pain were stopped without my consent. On that day in April 2017, I arrived at my doctors office for a routine follow-up when a doctor I had never seen before walked in. He told me he was brought in just to take everyone off their pain medication within one month. Because I broke into tears and begged for an extra month, he gave me one full prescription and began the forced taper the following month. My worst pain comes from chronic cluster migraines, a back injury with a rupture at T-10, T-11 and my neck is fused. I also have fibromyalgia, chronic kidney stones and severe facet joint degeneration. The fourth week of August 2018 I was having one of the worst cluster migraines have ever had, and it was on its 10th day. The T-10, T-11 was really hurting and kidney stones had started to pass. I was in horrific pain and considering suicide. My contract with a new pain doctor requires me to contact the clinic if there is a problem. My son called the clinic to tell them because of the horrific pain he was taking me to the hospital. He was told he could take me, but under no circumstances could they give me any pain medication. My son called three more times; on the last call they told him we must have the doctor’s permission and he had already gone home. No human should be forced to live in horrific pain. As a person in constant incurable pain I am one of the millions who were forced into a taper or the pain medication was stopped completely. A family pet would be shown mercy and never be forced to live in pain. I live in unbearable pain 24/7. I’m one of the many people in pain whose doctors have abandoned us and ignored our pleas for help. Many pharmacists profile us based on their perception of our appearance. Some will not even fill prescriptions from cancer patients. I have disability benefits awarded by my government for intractable pain, yet I suffer discrimination and cannot get treatment for that pain. Until our government admits the epidemic is about street drugs like fentanyl and heroin and stops persecuting people in pain, there will be more and more deaths by overdose from street drugs and more pain patients suffering. Where do we go from here?

Chris Jolley

Being Forced to Taper Off Pain Medication

I was with my pain doctor on the same medication for 20 years when the medications that control my chronic pain were stopped without my consent. On that day in April 2017, I arrived at my doctors office for a routine follow-up when a doctor I had never seen before walked in. He told me he was brought in just to take everyone off their pain medication within one month. Because I broke into tears and begged for an extra month, he gave me one full prescription and began the forced taper the following month. My worst pain comes from chronic cluster migraines, a back injury with a rupture at T-10, T-11 and my neck is fused. I also have fibromyalgia, chronic kidney stones and severe facet joint degeneration. The fourth week of August 2018 I was having one of the worst cluster migraines have ever had, and it was on its 10th day. The T-10, T-11 was really hurting and kidney stones had started to pass. I was in horrific pain and considering suicide. My contract with a new pain doctor requires me to contact the clinic if there is a problem. My son called the clinic to tell them because of the horrific pain he was taking me to the hospital. He was told he could take me, but under no circumstances could they give me any pain medication. My son called three more times; on the last call they told him we must have the doctor’s permission and he had already gone home. No human should be forced to live in horrific pain. As a person in constant incurable pain I am one of the millions who were forced into a taper or the pain medication was stopped completely. A family pet would be shown mercy and never be forced to live in pain. I live in unbearable pain 24/7. I’m one of the many people in pain whose doctors have abandoned us and ignored our pleas for help. Many pharmacists profile us based on their perception of our appearance. Some will not even fill prescriptions from cancer patients. I have disability benefits awarded by my government for intractable pain, yet I suffer discrimination and cannot get treatment for that pain. Until our government admits the epidemic is about street drugs like fentanyl and heroin and stops persecuting people in pain, there will be more and more deaths by overdose from street drugs and more pain patients suffering. Where do we go from here?

Chris Jolley

Being Forced to Taper Off Pain Medication

I was with my pain doctor on the same medication for 20 years when the medications that control my chronic pain were stopped without my consent. On that day in April 2017, I arrived at my doctors office for a routine follow-up when a doctor I had never seen before walked in. He told me he was brought in just to take everyone off their pain medication within one month. Because I broke into tears and begged for an extra month, he gave me one full prescription and began the forced taper the following month. My worst pain comes from chronic cluster migraines, a back injury with a rupture at T-10, T-11 and my neck is fused. I also have fibromyalgia, chronic kidney stones and severe facet joint degeneration. The fourth week of August 2018 I was having one of the worst cluster migraines have ever had, and it was on its 10th day. The T-10, T-11 was really hurting and kidney stones had started to pass. I was in horrific pain and considering suicide. My contract with a new pain doctor requires me to contact the clinic if there is a problem. My son called the clinic to tell them because of the horrific pain he was taking me to the hospital. He was told he could take me, but under no circumstances could they give me any pain medication. My son called three more times; on the last call they told him we must have the doctor’s permission and he had already gone home. No human should be forced to live in horrific pain. As a person in constant incurable pain I am one of the millions who were forced into a taper or the pain medication was stopped completely. A family pet would be shown mercy and never be forced to live in pain. I live in unbearable pain 24/7. I’m one of the many people in pain whose doctors have abandoned us and ignored our pleas for help. Many pharmacists profile us based on their perception of our appearance. Some will not even fill prescriptions from cancer patients. I have disability benefits awarded by my government for intractable pain, yet I suffer discrimination and cannot get treatment for that pain. Until our government admits the epidemic is about street drugs like fentanyl and heroin and stops persecuting people in pain, there will be more and more deaths by overdose from street drugs and more pain patients suffering. Where do we go from here?

Chris Jolley

Being Forced to Taper Off Pain Medication

I was with my pain doctor on the same medication for 20 years when the medications that control my chronic pain were stopped without my consent. On that day in April 2017, I arrived at my doctors office for a routine follow-up when a doctor I had never seen before walked in. He told me he was brought in just to take everyone off their pain medication within one month. Because I broke into tears and begged for an extra month, he gave me one full prescription and began the forced taper the following month. My worst pain comes from chronic cluster migraines, a back injury with a rupture at T-10, T-11 and my neck is fused. I also have fibromyalgia, chronic kidney stones and severe facet joint degeneration. The fourth week of August 2018 I was having one of the worst cluster migraines have ever had, and it was on its 10th day. The T-10, T-11 was really hurting and kidney stones had started to pass. I was in horrific pain and considering suicide. My contract with a new pain doctor requires me to contact the clinic if there is a problem. My son called the clinic to tell them because of the horrific pain he was taking me to the hospital. He was told he could take me, but under no circumstances could they give me any pain medication. My son called three more times; on the last call they told him we must have the doctor’s permission and he had already gone home. No human should be forced to live in horrific pain. As a person in constant incurable pain I am one of the millions who were forced into a taper or the pain medication was stopped completely. A family pet would be shown mercy and never be forced to live in pain. I live in unbearable pain 24/7. I’m one of the many people in pain whose doctors have abandoned us and ignored our pleas for help. Many pharmacists profile us based on their perception of our appearance. Some will not even fill prescriptions from cancer patients. I have disability benefits awarded by my government for intractable pain, yet I suffer discrimination and cannot get treatment for that pain. Until our government admits the epidemic is about street drugs like fentanyl and heroin and stops persecuting people in pain, there will be more and more deaths by overdose from street drugs and more pain patients suffering. Where do we go from here?