Someone help this woman! This is a crime! They treat animals better than people so what’s wrong with this picture? This must stop! People are committing suicide because they’re being denied pain medications! Please watch this short video and it will open your eyes to the TRUE OPIOID crises going on in the United Stated of America! Someone please help this woman and the other 100 million chronic pain patients who are in agony now bcz of what’s being misunderstood as addiction, hyperalgesia and worse! This lack of opioid pain medication to true legitimate chronic pain patients, has to stop! We are not disposables! We are in agony and we are human beings with rights like every living soul! Please learn about the difference between dependence and addiction! Addiction is a non-stop ruminating, craving and a need to get high from taking some kind of medication or drug! People with Chronic pain get “addicted” 1% of the time, due to pain medication! We are “dependent” NOT addicted! Our bodies will go through a physical withdrawal when the meds are taken away! But we do not WANT to need the pain medications. We do NOT get high or euphoric from the opioids! We get to live some semblance of a life outside of a hospital or a bed in our homes! Please help because too many people have died already! Stop being hysterical and blaming real and legitimate pain patients because someone you know died from an overdose! I’m so sorry for you, but don’t punish everyone because you’re in misery! Find compassion in your heart and watch this woman’s story for about 3-4 minutes! Thank you!
Untreated or under treated Chronic pain can kill! There are many articles that discuss this topic but I’m writing from the chronic pain patients perspective. Most things that are written are authored by Dr’s and others in the medical profession. But for me and for us this is real! Sudden cardiac death is a frightening topic to discuss. This is true especially because many chronic pain patients live with the risk factors that are written about in the articles and medical journals etc. Personally, I have a pacemaker for not only Dysautonomia & POTS, but for an Arrythmia called “Sick Sinus Syndrome”! Additionally, I. live with Atrial fibrillation, MVP & TVP (mitral valve & tricuspid valve prolapse), CAD (coronary artery disease) & long QT syndrome! In 2005, I had a heart attack and in 2006, a CVA or stroke. Enough about me, but I’m trying to paint the picture that I am not alone in this. Many chronic pain patients have several comorbidity’s. If the CDC continues with this crazy “war on opioids”; taking our pain medications down to dangerously low & restricted levels, people will die! I may die as well, and I’m not being dramatic!
So many people, including our clueless government representatives do not realize that severe untreated chronic pain can lead to death. They think it is just an innocuous “pain in the behind” for those that live with it. It doesn’t interfere with their lives or the lives of the CDC, FDA and several others such as, Big Pharma and the many physician run drug treatment centers in the USA. But when suddenly, chronic pain “hits” one of their family members, then they start advocating more. But why do they have to wait until it happens to their family members or even themselves? Why can’t they listen to our cries of suffering now, before more of my friends die suddenly from the agony of living with the daily unrelenting chronic pain without any reprieve? Does the government or the general public even realize that Veterinarians get about five times more education hours than medical students get for human beings living with chronic pain? I read that there was a study done in 2011, and the Journal of Pain found that the United States medical programs only allot approximately 5 hours of teaching time on the management of chronic pain. Our Canadian neighbors give their medical students a whopping 19 1/2 hours! This is where the medical professionals who educate the incoming physicians are at fault for their part in this “crisis” as it has been called.
Just this past week, the pain community, including the support groups that I administrate online, lost another chronic pain warrior. I lost my 7th friend in just over 2 years! This is the 3rd friend that I have lost to chronic pain and patients diminished access to pain medications. In my experience, it continues to be the same story; in that the chronic pain patient tells their significant other or family members that they are feeling worse. They go to bed to try and relieve their pain and they never awaken. My friends husband found her slumped over in her chair, late at night when he checked on her. It’s not unusual for most pain patients to stay up very late watching T.V. or “playing” online to keep our minds off of the pain for awhile. When the coroners do an autopsy on a person who has died suddenly, and they find “drugs” in the bodily fluids; they blame the opioids. These are educated people, toxicologists an forensic medicine physicians. They seem to just blindly blame these deaths on the opioids instead of seeing the possibilities that exist. It could have been death from pain that was unrelenting and untreated and/or misdiagnosed and under treated. Maybe more of my friends died from the sudden drop in their pain medications?
What is it going to take to get the government to listen to our pleas? I’ve written and sent the same letter to the White House twice and have gotten no response. I’ve made videos on YouTube to explain this crisis in Chronic pain community. I was hoping for at least one of them to go viral. But instead, the viral videos are about usually someone falling off of a chair or a baby biting his brothers finger! How do we get them to listen to us? I agree with the fact that Opioids should not be the first option for people with chronic pain. I also agree with the research that’s being done on medications that cannot be crushed or melted to become more potent for those that do abuse them. But for those patients who have been on a “normal amount” and steady dosage of Opioids for a long period of time; why not leave them to the physician(s) that know them? Let the Doctors who’ve treated them for many years, take care of their patients without fear of Federal agents breaking into their clinic during hours and scaring everyone half to death! If someone has been taking opioids for a long time and the dosage remains the same and it’s working for them, can we not leave them alone? Let them live some semblance of a life outside of their bedroom or recliner. When I say “them”, I mean “us” and we are dependent but not addicted to these medications. These are not “powerful, strong meds that loop us out of our minds” as I’ve heard on several occasions. These are the medications that we need, in order to have a small amount of active time during the days. We aren’t asking for more and we agree to the submissiveness and feeling of personal character attacks with urine drug screening. We sign the contract with our pain management physicians. So why not just let us live our lives and stop attacking us and calling people who live with chronic pain, “drug addicts”.
Anyone who calls people living with daily struggles of unrelenting pain, “addicted”; needs to learn more and be educated about opioid use with chronic pain patients who have several high pain illnesses. Not only do they need to learn more, but they need to be empathetic and try to put themselves in the pain patients place for a moment or two. People, especially those in positions of power; need to think about what their lives would be like if they could barely get out of bed in the mornings. What if they couldn’t go to their fancy dinners or dances, due to chronic pain and and unrelenting fatigue? I’d say they wouldn’t like it very much and neither do we! How do we get these officials to learn the difference between the words “addiction” and “dependence” before more of my friends die from under treated pain or lack of any treatment?
This writing turned into an article for the Health News Magazine that I author for, and have since November 2016! I love it and am enjoying this so much! I wanted to make sure to send you the link to the edited version of my blog post, which is the article of the same name. It is here: http://NationalPainReport.com/Opioids-kill-pain-not-people-8833207.html ….
I wanted to write something to enlighten the non-pain community as well as those who are in pain but are either new to the pain or have not had much of a relationship or experience with Opioids. Opioids can cause “dependence” just the same as many anti-depressants, blood pressure meds and Beta blockers. Dependence is not the same as addiction and I will try to explain that in this writing. People who take opioids for chronic pain illnesses that carry a # of 43 on the McGill pain scale, for example: CRPS or Complex Regional pain syndrome (and many others); do not get a “HIGH” from taking them. When you have very extreme chronic daily pain, the Opioids just relieve the pain and do not give a Euphoric feeling whatsoever. Of course, I am writing from my own experience and from the experience of being a patient health advocate since 2007 and a patient leader, as well as an administrator for several chronic pain illness groups.
Opioids do not kill people, but they do kill the pain for awhile. If you ask a person with chronic pain, if they enjoy taking these medications; they will all tell you “NO”! We do not like that we need or depend on these meds for relieving our daily high pain. We wish that we did not need the Opioids and we would prefer to just live pain free. Many people that do not experience daily chronic pain, have the notion that Opioids are killing people. This may be partially true, but not so, for the true chronic pain patients and the pain community. Those who die from taking Opioids are usually mixing it with other things from the “streets”. They mix it with Heroin or crack cocaine or other “street” drugs; sometimes alcohol too. Others, for example, celebrities who have passed away from taking Opioids, have mixed it with other substances. The news shows us that “another celebrity has died from an Opioid overdose”. That’s not the whole truth, because that person had other substances in their bodies, we would later find out; after getting the coroner’s report.
In my research, I found an article on the website for RSDHOPE.org and it says this: In an article written by WebMD in collaboration with the Cleveland Clinic states, “Some medications used to treat pain can be addictive.Addiction is different from physical dependence or tolerance, however. In cases of physical dependence, withdrawal symptoms occur when a substance suddenly is stopped. Tolerance occurs when the initial dose of a substance loses its effectiveness over time. Addiction and physical dependence often occur together.” People who take a class of drugs called opioids for a long period of time may develop tolerance and even physical dependence. This does not mean, however, that a person is addicted. In general, the chance of addiction is very small when narcotics are used under proper medical supervision.” The article goes on to say, “Most people who take their pain medicine as directed by their doctor do not become addicted, even if they take the medicine for a long time.” You can read the original article in its’ entirety. (this was found on the RSDHOPE.org Website here: @http://www.rsdhope.org/addiction-dependence-or-tolerance-to-opiods.html). In that same article at RSDHOPE.org, they go on to explain that: “Another article, written by Leanna Skarnulis, states, “Chronic pain patients often confuse tolerance with addiction. They become fearful when the dosage of a narcotic has to be increased, but it’s normal for the body to build up tolerance over time, says Simmonds, spokeswoman for the American Cancer Society. “Patients don’t get a high, and they don’t get addicted.“
I was researching for this article and I read about Elvis Presley, Prince, Michael Jackson and others who died from what was called or labeled “Opioid overdose”. But if you read more and dig deeper, you will find that the larger percentage of these people and others, die because they have mixed a prescription Opioid with other medications, drugs, street drugs and/or alcohol. I’m not saying that nobody died from taking Opioids in an overdose. I will defend my cause by stating that the every single person that I’ve come across within my own pain community (*which is a large number of people because of my being a patient health advocate, Ambassador for US Pain Foundation, mentor for newly diagnosed CRPS patients and a patient leader for WEGO Health and founder/admin. for 4 different kinds of chronic pain support groups) has told me that they do not take more than what is prescribed, therefore they are not “addicted”. I will also state from my own experience, that people living with daily high pain illnesses, do not “crave” their pain medication. I have never craved my medicines, nor do I seek them out or think about them every day or continuously.
The chronic pain community has been talking about the Opioids more lately and we have been afraid and worried. This is happening because there are “people” with power who are trying to take away our small semblance of a “normal” life with lowered amounts of pain. I understand that there are parents who’ve lost children and Children who’ve lost parents due to drug overdoses. I realize that people who are uninformed or misinformed regarding chronic pain; think they are taking on a cause or “helping”others because of their loss. I feel deeply sad for anyone who’s lost someone that they love from a drug overdose or for any reason, for that matter. It’s a bit similar to what used to happen when we were children in a classroom at school. The teachers would punish the entire class for something that one child did and he would not confess to doing it. The entire pain community should not be punished because of the actions of some.
There are some other reasons for The Opioid Debacle that’s happening right now around us. There are those “persons” who make money off of our chronic pain and suffering. People who make a fortune doing invasive and dangerous surgeries on the pain community. Also the many different therapies and treatment modalities that insurance doesn’t cover, for the most part. There are PROP physicians and others who say that Opioids don’t help chronic pain! The latter is an untrue statement because I’m here today as a chronic pain patient who does NOT and has not gone up in dosage in many years. I have experience being with many persons in the chronic pain community who will testify that taking a routine and regular dosage of Opioids, does help relieve their chronic pain. We are not addicted, we do not seek out or crave the Opioids and we deserve to be able to just “take a pill” that has little or no side effects, for many.
Lastly, I would like to say that there are advocates in physicians and others who truly want to help those with chronic pain. One of our biggest advocates, is a physician named, Dr. Lynn Webster (www.LynnWbsterMD.com). He is someone who has been trying to help our community. Dr. L. Webster, M.D., has a book out called “The Painful Truth” (www.thepainfultruthbook.com) and now there is a movie with the same name on PBS also. For anyone who is interested in learning more about chronic pain and how medications like Opioids can help; here is the link to the PBS broadcasting : The Painful Truth .
**HEY, Please follow me on TWITTTER at these two Handles: @RASEforCRPS and @ Ppl_InPainUnite …(RASE stands for “Research,Awareness,Support and Educate)
Many chronic pain patients, like myself, have legitimate concerns that we didn’t have to deal with a few years ago. Just prior to this Opioid debacle that has occurred in these past few years, we had enough to worry about due to our pain issues. We worry about finding good and trustworthy physicians, pharmacies that have our best interest in mind, tests that we endure and then pay for; among other things. We have to find a way to arrive at our appointments, possibly find someone to go with us and find Dr.’s willing to help relieve our pain. We just need someone to listen to our ideas, concerns and take our feelings into consideration at the same time. These days we have so much more on our plates and it is adding worry, pain and an increase in suicide to the list.
There are rumors flying on Twitter, Facebook and in the news media, that we have an “Opioid epidemic” in our midst. Lawmakers and those who don’t have a clue what daily life is like for the chronic pain patient; have just blindly accepted this hype. I totally agree that deaths from overdose of Heroin and other “street drugs” are happening. It is real and people are dying. I do know that the true “drug addicts” are mixing and/or changing some very helpful pain medications, with illegal substances and making more dangerous drugs that kill. But taking the small amount of relief away from pain patients is not going to fix the problem. The CDC, FDA, lawmakers and the Physicians who “don’t have a clue about chronic pain from a personal standpoint”; are taking away truly needed medications that lessen our pain on a daily basis. The chronic pain patient deserves to have some semblance of “normal” life. When they take away our pain medications, they are putting us back into our beds; where we are “sick” persons just waiting for relief. Hoping and waiting for someone to help us “fix” this Opioid conundrum that is happening around us.
The problem that I have found during my research, is that these groups of people that have “power”; meaning the CDC, FDA etc.; are “lumping together” true chronic pain patients with the average drug addicts. We are not one in the same! Apples are not oranges; just because both are called “fruits”. Dogs are not cats just because they are both animals. People who abuse drugs and chronic pain patients are not one in the same; just because both are human beings that need Opioids in order to live. The craziness will not end and drug abuse problems and/or deaths will not be over, by taking Opioids from the true pain patients. The chronic pain community has been living in fear and agony since the new guidelines started. What I’m talking about is a real public health issue that is being made worse and not getting solved. Denying the chronic pain community the one thing that may give us some small quality of life, is definitely not going to fix anything.
What I have noticed after speaking with a Governor’s secretary, a Senator and officials within my community, is that they don’t realize that there’s a difference between being an addict and being dependent physically. I heard a Senator say that she never thought about how a chronic pain patient may be physically dependent but not be “addicted” or crave the pain medications. They don’t truly understand that Opioids are sometimes the only choice and last resort. Some of us are not candidates for other treatment modalities. Frankly, there are others who just don’t want or cannot have another surgery that might increase pain and medical issues. I was told by one Senator, that we need to be a voice. They need us to make phone calls, write letters and these kinds of articles. We need them to really listen and then make real changes.
The drug addict needs and craves their drug of choice in order to function. They get a “high” from taking drugs. They mix drugs and change medication from its original form sometimes, in order to get that “high” . A drug addict lives for their daily “fix”. The chronic pain patient, on the other hand, does not get a “high”from Opioids. We take prescribed pain medications in order to live some sort of life outside of our beds. We don’t live for the pain medications. We take them in order to have a life with lessened pain. The Opioids give a slightly higher quality of life to some of us and the unbending hand of the Government is slowly taking this quality of life away from us.
I totally agree, that Opioids should not always be the first drug of choice for chronic pain. There are other modalities to start with. But in the end, if the only thing that works for certain patients who live with daily debilitating pain, are Opioids; then these patients should be allowed to have them. The chronic pain patient should be allowed to live without feeling like a criminal or as though we are “bad” or “flawed” people. We also should not have to take a slew of lesser medications in order to “try and fail” them before getting what a board certified pain Dr. may prescribe as first choice if his /her hands weren’t “tied”. The persons with power to do something about this debacle are continuing to deny tens of thousands of chronic pain patients the only treatment that may help lessen their pain, our pain, my pain. They are holding us hostage to a life of agony and they need to be informed. Those persons who have the power to help chronic pain patients with this confused issue, are listening to misinformation. They are looking at skewed and manipulated data. They are basing their choices, ideas and guidelines on poor medical analysis and data.
The guidelines for the use of Opioids in the medical setting should be changed immediately. Those persons on the committees who wrote these newer guidelines were those who have a monetary stake in getting rid of these medications. By this, I mean those who own other forms of treatment centers.They are also the “Prop” Dr.’s who have only one point of view and it’s not the same point of view as those who truly know what its like to live with daily chronic pain. The initial’s “PROP” stands for “Physicians for Responsible Opioid prescribing”. But they don’t really approve of any kind of Opioid prescribing. They and others who wrote the current guidelines, want Opioids eliminated for the afore mentioned monetary reasons and due to the propaganda surrounding celebrities deaths from overdose. In the celebrity cases, and many other high profile and even low profile deaths from overdose; there were other medications and street drugs mixed in with the Opioids. That is truly how those persons ended up dead.
The guidelines for the use of Opioids with chronic pain patients should be withdrawn now! They should be rewritten by a group that consists of board certified physicians who have true experience with chronic pain patients. Better yet, add some physicians who actually experience chronic pain themselves. Excluded in the group to rewrite the guidelines, should be anyone with money to gain from getting rid of Opioid medications. Let’s get real! People die from NSAIDS! In fact, I’m not allowed to take them because of my chronic renal disease. Others die from Liver issues from taking too much Tylenol.
At one point, there was a group of U.S. Senators that introduced legislation to put a federal tax on all Opioid medications! It was called the “Budgeting for Opioid Addiction Treatment Act”. In a nutshell, they wanted to make chronic pain patients pay one cent for each milligram of active opioid ingredient in their daily pain medications. This money was then going to be used for treatment centers for drug addicts! How ludicrous is that? Would anyone ever think about taxing my grandfather for taking insulin, because he is diabetic? Would they put a “fine” or so called “tax” on high blood pressure medications? NO! Nobody would place a “fine” or a “tax” on illnesses such as high blood pressure or diabetes, yet the medications taken for those illnesses also make people “dependent” on them. A person can’t just stop taking insulin or they could die! The heart medication that I take cannot be stopped abruptly, or I could have a heart attack! So you see, there are many medications that people may be “dependent” upon. That doesn’t make all sick persons “addicts”. We all take the medications that we need for our diagnosed medical conditions. The drug addict actively wants, craves and seeks out their drug of choice. Those of us living with chronic pain truly wish that we didn’t need to take any medication. Chronic pain is an illness just like any other.
I’d gone to a pain Dr for 3-4 yrs s/p a MVA . I had multiple injuries/surgeries. They forced me to take opioids! I was afraid of them. Not for any reason; because I have no history of smoking or drinking or taking any kind of meds! I have a letter that the pain psychologist wrote, stating that I “don’t have an addictive personality.”…..so then I did all of the injections etc. & all of the PT-OT, Biofeedback etc. They wanted to give me an Intrathecal pain pump. Then we found that I am not a candidate due to Combined Immune deficiency disease. Soooo then the pain Dr “dumped” me off back to my GP for pain meds only! He said the the “Govt. looks at him through a microscope” so he wanted my GP to do the meds. So that was 2005 and in 2014-Dec., my GP had Feds at his office & he was removed from that office & sent to an urgent care! I was stuck because nobody wanted to prescribe the fentanyl losenges and patches for me (with Dilauded for emergency). I went back to my old pain Dr and he refused to see me! He said that “he didn’t want any part of that other Dr.’s (the GP) mess”! He wanted to send me to his “pain Dr. friend!” I researched the guy to find out that he was or is actually an addiction specialist. There was no way I was going there! I’ve never even smoked cigarettes! There’s no way I was allowing “that” to follow me around in my medical records. So I did it on my own! The partner GP offered to help me for a few months but asap I was told to find another pain Dr. But I wasn’t just told that, I was badgered over & over again to go to that specialist. I lowered my doseages myself. When I finally found a kind pain Dr. who was respectful towards me; he told me that even though I’ve had a CVA and an MI, I was to “stop the Fentanyl losenges cold turkey!” I had gotten myself down to half of the amount of the patch. I stopped the losenges on my own, on the day that the new pain Dr. told me to. He told me that I never should’ve been on them in the first place. They’re for terminal cancer patients and even he’s not fond of them! He was visibly upset that I’d been on them for about 10 years! So I got down to half of the patch amount and to zero losenges! I was very very ill! The new pain Dr. told me that my body would be “fooled” because he gave me a smaller amount of opioids & I was still on half of the amount of the patch! Well, I’m here to tell you that my body was not fooled! Nothing was fooled and I was sweating, nauseated, had diarrhea and got very high fevers and blood pressures! I started researching withdrawals myself. Nobody was helping me, except my poor husband, who was feeling helpless. Nobody felt as alone and helpless as me during those dark days! I was so happy to have my loving husband to take me by the hands & walk with me through it all. It was a horrible 1st week; like the flu, but worse because the pain was so much higher. After about 6 weeks, things got better. But I must tell you that I never once craved the medication! I was happy to be rid of those losenges, actually. I’m very proud of myself for what I did all on my own, for the most part. I now have a wonderful pain Dr. Who cared enough about me to let me go and not treat me if I couldn’t do what needed to be done. I did it and I’ve done it and now I’m on about half as much medicine as I was on during those 10 years. I also feel like my pain Dr and I mutually respect each other. I did something by myself, that many or most people couldn’t do even with help!
I am guessing that we pain sufferers all feel the way that I feel today, at one time or another. Today it feels as though things are piling up.
Not to me, I say. After all, I’m a Health Advocate, Awareness Warrior, Pain Warrior, Ambassador, Mentor, fundraiser, event planner, writer, fact finder and guest blogger. Of course, I’m also a chronic pain patient, but feel that I should have big shoulders, whether they hurt or not. That’s been my place in this not so new life, since 2002. The pain is not my choice, but how I choose to deal with it is up to me. I choose and have chosen to help myself and others. By advocating, fighting, writing, posting, protesting, tweeting, & attending conferences for all of us. Like Ghandi said “Be the Change you want to see in the world.” I say change starts with me!
I try to listen. I don’t mean just “hear what is being said” but hear what’s not being said and try to make something good happen in all our lives. I like to make change that is good, even if it is only to put a smile on someone’s face for one day. I truly enjoy caring about other people and making them feel good or better about themselves or their situations. I remember one time, in one of my own support groups that I still moderate today; I got to do something extraordinary. One woman had a wheelchair that was too big for her. I found a man who had one that was too small for him. I got the two of them together and they swapped wheelchairs. The joy on their faces and the feeling of warmth that I got from that experience, was the best medicine that I could’ve ever had to help “me feel better.”
And yet it is suffering that is happening right now, today in many doctors’ offices, pharmacies, emergency rooms and patient homes. But I won’t allow us to suffer in silence. It’s happening and has happened to me. I’m not watching the “Opioid War” play out on a television show – I’m living it. My husband dropped off my legitimate prescription for opioid pain medication 6 days ago. He took it in 2 days early, as per our routine, to be filled on the 3rd day. This happens monthly, not only to me, but to many other chronic pain patients. After suffering for 3 days without my pain meds and being at the mercy of the Pharmacy/Pharmacist, I finally obtained my medication. It’s not safe to abruptly stop taking these meds for several days. I’m in a small subset of pain patients who are candidates for opioids for medical reasons because they do help to lessen the pain.
This is not an “Opioid War.” It’s a “war” being fought by chronic pain patients and some supportive physicians and organizations that stand tall with us. It is all of us against the mainstream media, PROP, addiction specialists (who only see dollar signs in our pain), the CDC, the DEA and some unfortunate people who’ve lost someone to an overdose, I’m afraid.
The reward for my advocacy work is inside my own heart and soul and gives me an inner happiness or peace that nothing material can top. It feels good in my heart and soul when I’ve helped another pain patient feel revived or even just a little bit better, less afraid, less alone.
But today, I am feeling sad. This is the harder part of my journey; along with the loneliness, stigma and then of course my own pain which echoes within me and vibrates like an earthquake. I know other pain patients feel that it seems insurmountable at times. I am a chronic pain patient just trying to survive one day at a time, like everybody else.
So, let’s remember this! These opioid pain medications are available, have low side effects and they are not expensive. People who need them and who get relief from daily chronic pain, should be able to have no problem getting these medications. A true chronic pain patient is not “addicted” but “dependent” on the opioids. We do not get a “high” and we do not “crave them.” We take our medications responsibly.
These opioids help many of us who’d suffer in pain daily without them. My favorite advocate, Helen Keller, once said “I am only one, but I am still one. I cannot do everything, but still I can do something. And because I cannot do everything I will not refuse to do the something that I can do.” I will continue fighting for our cause as long as I can breathe.
We must fight because we cannot afford to lose.
In light of this 2016 “Pain Awareness Month” and with what happened so recently to my friend, fellow pain warrior and fellow U.S. Pain Foundation Ambassador; I feel the urge to tell a story. It’s actually two stories, hers & mine, but they are within the same idea and fit in this article.
So our own dear Emily was out of town doing some advocacy work and ran out of her pain medication! She takes a synthetic opioid “Tramadol”. Her Dr nor pharmacy would help her as she was miles away in so much pain that she could not drive! She tried to call in and ask if she could just “get a few meds to get her through until she returned home”. Again, the answer was “No”! She was crying and almost hysterical calling around to different places, asking for help. She knows, she said “what she must’ve sounded like” to those on the other end of the telephone! But just like me, Emily never wanted these medications! Like me, she was reluctant to start them because she never wanted to be dependent on the meds! I went through that same dilemma for 3 years, until the PMD had his pain Psychologist, talk me into it and told me “not to ever be afraid” and to “trust them”! They even tested my psychological profile, which proved that “I don’t have an addictive personality “!
I have been through this similar situation once on a trip and then again at the end of my journey with one type of pain medication.
My family and I were returning home from AZ during our February break vacation. It was about 2009 & many planes were not leaving on time or at all! I had my wheelchair, which had already been boarded onto the airplane. I was prescribed Fentanyl “lollipops” for breakthrough pain and only brought enough for the trip. Suddenly on a loud speaker, it was announced that our plane could be delayed until Wednesday or Thursday! This was Sunday at noon! Let alone the fact that my husband is a teacher and had to return to work that next day, Monday! I was frantic, afraid, hysterical and worried all in one big thought pattern!! My wheelchair was already gone onto the plane and I could be in pain for those next 3 or 4 days! I’d already lived through a heart attack and a stroke /CVA ! I would go through withdrawals! I’d feel horribly ill and possibly suffer seizures or subsequent stroke!!??? I was so afraid and finally relieved when at the last minute they told us to board the plane quickly “because the pilot & staff had to be up in the air within 10 minutes or they’d be grounded due to too many logged working hours”!! We made it home without a trauma, but I knew in my heart that I absolutely despised being “married” to these medications!!
I relented and started taking the Opioids after 3 yrs of epidural, injections, PT/OT (for 8 yrs total), biofeedback & more! I was convinced to take them and told “not to fear”!
In 2014, I got a letter from our medical insurance company, stating that I “had to have a pain management physician agree with my General physicians treatment plan” or they’d stop paying for my medications altogether! The very next day I had an appointment with my GP. (*side note: after 3 + years of the misc treatments , including pain meds, my pain managemnt Dr. told me that due to my Combined immune deficiency disease, I was no longer a candidate for the Spinal Cord Stimulator or the Intrathecal Pain pump! He told me that he was “looked at under a microscope by the Federal govt.. Therefore he was “passing me over to my GP” for medications only. He said he’d consult whenever needed for ideas etc.)
I went to my scheduled appointment with my GP of 13 -14 years, the next day. I spent the entire appointment crying, while the Dr. I’d entrusted with my medical care for all of those years, blankly stared at me! He only muttered the words “I’m leaving, today’s my last day. I want to spend more time with my kids so I’m going to work at an Urgent care!” First of all, that was very “fishy” from the start! When he became a Dr., married and later had 2 kids; he knew what he’d signed up for!
I left and had to pay a $30 co-pay to cry for 40 minutes! Most of that time was with the M.A. Consoling me as she reaffirmed that “nothing would change”! That Dr., his nurse & his MA, told me that “the other Dr. in that practice would take over my care & nothing would change”! My ex-Dr also told me that he’d “personally speak to my old pain Dr. & get him to sign the papers for the insurance co. Not to fear”! Secondly, he said that he’d forward my treatment plan and records to that PMD, and all would be fine, and everything would stay the same!
A few weeks later, I went to see my old pain Dr and he told me that he knew that “my pain was real and that I have multiple real and high pain issues”! But that I was to go to a “treatment center “! Then afterwards I could possibly see him again. But only after I went to his “friend”! He next explained to my husband and me, that “it wasn’t me; but he wanted no part of that other Dr.’s mess!”(my old GP). He explained that my old GP had been investigated by the Feds and had to go work at an Urgent care because he was fired from that practice & unable to write “for pain meds”any longer! I was in tears crying and begging him to take me back! I cried and through my tears, I explained that “I had never even smoked cigarettes, did never do any kind of drugs and had not drank alcohol!” I promised him that “I was strong & I could get down off of the Fentanyl lollipops all by myself, with my husbands love and support! I made an appointment with him for 2-3 weeks later and I promised him that I’d wean down by myself. He allowed me to make the appointment!
I returned to that PMD’s office 2-3 weeks later and down off of the Fentanyl lollipops by about 70%! He had a young 17 yr. old office girl come to tell me that “he still won’t see me unless or until I see his friend, the addiction specialist” (I researched & later found out this info.)! I cried and begged for help and I was afraid!
I visited at least 5 Pain Management physicians! All of them looked at me like either I was a “Lepar” or my case was too difficult and they did not want to bother ! Time was drawing near when I’d be totally out of those lollipops for good. Finally, the partner, actually the owner of the GP’s practice,(who’s known me and my family since the 1980’s), told me that I’d proven to him that I could go down on my own and he’d “take me on only if I was 100% off of the lollipops AND the oral meds &/or patches that I’d been prescribed”! I promised that I could do it. I was terrified because no one had my best interest in their heart or mind! I had no way for future pain relief and the nation was going berserk over pain management Opioids!
What happened to this nation? Why am I suddenly categorized and scrutinized? Some movie stars and magazine reporters family members had died from over dosages; therefore now I’m an “addict”!?? There’s a big difference people!!! There’s a huge personality profile difference between an addict and someone who is dependent on Opioids for several nerve pain diseases and high pain diagnosed illnesses! An “addict” craves their “fix”! They live to take medications, whereas, I take my medications to live! The addict gets a “high” from the Narcotics or Opioids. I wouldn’t take them if they did not relieve my high amount of nerve pain due to RSD/CRPS and other pain illnesses from A to Z!
I did finally find a good, kind and respectful Pain management physician. He did tell me that I had to discontinue the Fentanyl lollipops if I wanted him to be my Dr. He told me to take my last one on the eve of July 12, 2015. He gave me different Opioids and he was pleased that I’d gone down by myself, to 1/2 of the amount of Fentanyl patch than what Id been on under that first GP’s care.
I took my last Fentanyl lollipop on July 12, 2015. I had to go through withdrawals even though I’d decreased the lollipops by 90%! It was a horrible, awful and painful experience that I’d never wish on my worst enemy! I needed something for my blood pressure spikes! The nausea and vomiting too! I needed meds for calming me and I just needed time to get off of them 100%! I was in pain and miserable for a good 3 weeks, then down just a notch for 3 more. It’s was scary for my husband and a nightmare for me. I thank God that I’m a very strong willed person. I did it and I came out the other side! I NEVER want to go through that again!
I never want to be dismissed and sent to an opioid treatment center because….. I did it myself! I certainly didn’t want that following me around in my medical records for the rest of my life; when I never have never been and never will be an addict!! Yes, I’m still taking an oral Opioid and 1/2 of the amount of Fentanyl patch that Id been on under that GP’s care!
I thought he cared about me as a long term patient! I thought he was kind and that he was the best Dr ever, because he “listened” to me! Well, do you know what? That’s all he did! He listened to me & then he wrote prescriptions and stared off into space with a kind look now & again. He never tried to help me by physically “doing” something for me–except lifting a pen! He knew how much medication I was on! He knew it was a dangerously high amount of Opiods for someone like me; No…for anyone!! He was not doing me any favors and he was digging me an early grave! He didn’t care at all for my husband, daughters & granddaughters; my family or my life.
What happened when my ex-GP got in trouble and left, was a blessing in disguise. Yes, I had to go through a lot to get where I am today! I’m thankful that I have God in my life and that I’m a strong person. I thank God that I had my husband there by my side to help me through it all! I also thank God that I am here today and that I can tell my story. I only pray that my writing & my story will help someone else in the future.
It’s because of Doctors like my ex- GP, Dr Bullach, who didn’t truly care about curing or attempting to fix medical problems and/or pain; but who only wrote prescriptions. Also then due to the actions of some celebrities like Prince, Michael Jackson and the others that abused medicines for pain; that we are in this situation today. Also the “regular non celebrity people” that abuse, modify & sell these opiods. It is all of them who’ve ruined it for all of us. We are the faces of the people who are dedicated to getting well and trying to live some semblance of a life. All the while we are also struggling with the management of our high pain illnesses. We fight against labels and against those physicians involved in the group called “PROP (Physicians for Responsible Opioid Prescribing)”, and others in the medical profession who give us these labels!
Lastly, I need to say one more thing while Im on my “soapbox”. If someone who you loved died from an overdose, I send you my most sincere condolences. But because of your anger, loss and fear; please don’t take it out on the people who are diligent in taking these medications responsibly?! Please don’t pull the rug out from under my life, our lives because you are mourning. Maybe you feel that you must right a wrong! Please everyone, do not put all of us into the same category as those who abuse illegal substances! Most importantly, if you are in a position of being a reporter or news writer or Television newscaster, please don’t abuse your privileges by using your job as a stage for fighting against your own personal demons!
-References: Emily’s story from U.S. Pain Foundation website at: USPainFoundation.org (originally from Rep-ap.com article: “Side effect of drug fight means some are left to suffer”)
-Feature photo is originally from: USPainFoundation.org