Share Your Pain Story

1,000 Replies to “Share Your Pain Story”

1. The JacknBox Story: The Result of failed Policies

   On the way home from my primary care doctor appointment my mom, who drives since I am unable to, stopped at JacknBox. As she pulled up to the drive thru window I was in tears. In tears from the pain and the devastating news I had just received from my primary care doctor. All I wanted to do is bash my head on the dashboard from the unrelenting and excruciating pain caused by my Arnold Chiari Malformation-1, a pinhole next to my brain stem, spinal cord and spinal canal, and my neck that has a dead man’s bone and a metal plate with four screws that has been compared to that of an injured football player, arthritis and ganglions from a 2011 neck surgery. For 16 years I was treated successfully with 4 medications; 1 opioid, 1 controlled substance, 1 benzodiazepine and 1 antihistamine for my ACM-1 and pinhole. To make things worse my primary doctor had just informed me that since I was unable to find a pain management doctor to treat me, he could no longer treat me for my ACM-1, pinhole, and neck pain. He said he can treat me for everything else but that.

   So there I sat in the car with swollen red eyes and tears from crying. The young man who was at the drive thru window asked if everything was okay and my mom explained that my primary care doctor can no longer help me because we could not find a doctor willing to prescribe my medications due to the opioid epidemic. He looked at us funny and replied “Why … I get my pain medications all the time and there is nothing wrong with me. In fact, I’m high right now.” Astonished my mom asked him where did go, who was his doctor. His response should come to no surprise … as he stated … ”oh I don’t go to just one doctor, I go here, I go there, I go everywhere and they give them (opioids) to me and there is nothing wrong with me…”

   This occurred in July of 2018. As I pointed out to Christina Corieri who is Governor Doug Ducey’s senior political health advisor and who wrote some of the language that is in Arizona’s 2018 Opioid law. This law was based off the CDC guidelines and recommendations. The laws and policies that are being implemented to so-call “stem the tide of the opioid epidemic” has only accomplished two things: (1) those who medically need and depend on prescription opioids to function and have quality of life are no longer able to obtain them and (2) allows those who are actual drug addicts and drug seekers to obtain them when and how ever they want.

   Since this true story that occurred in 2018, lawmakers/policy makers and politicians, both state and federal, have continued to enact and support failed policies which produce the same two results. As I informed Christina Corieri who was speechless in response to this true story, I informed her those who are addicts or drug seekers, they will find a way to obtain opioids. You can enact all the laws and policies, however, you cannot save someone who does not want to be saved. Currently the only contribution that has been made to the “so-called opioid epidemic” is preventing Chronic Pain Patients, such as myself, from receiving their medically necessary medications that is now producing devastating results.

2. How ERs are treating CPPs: A personal account at St. Joseph’s Hospital

   In May 2018, I went to Urgent Care, which was my first time ever going to one. The doctors there had never heard of Arnold Chiari Malformation so they looked it up online. When the doctor who was treating me saw that if left untreated it can cause paralysis and/or brain damage he immediately referred me to the ER. Both my mom and I explained that all they will do is treat me like a drug addict and offer me that drug addiction IV which is why I don’t go to the ER anymore. The doctor informed me that because he is unfamiliar with ACMs and since St. Joes has merged with Barrows Neurological Institute they have neurologists on call. He also reassured me that he was contacting them to “give them the heads up that I was not a drug addict and that I was bringing my recent MRI. I immediately went to the ER.

   The nurse at the ER took my blood pressure and immediately asked if was overdosing. I told her no as she informed me that my BP was too high and heart rate was too fast for it to be caused by pain; the only explanation is an overdose. My mom told her that I was not overdosing. They finally called me back into the room. The ER doctor came in with the nurse and asked what’s going on. I explained that I had ACM-1 and pinhole and that I don’t have my meds. My mom told the doctor that I just came from urgent care and they were “giving you guys a heads up” his response … we did not receive anything and if we did it means absolutely nothing to me. He proceeded to point to the wall stating, ”you see those … due to the CDC guidelines and our opioid law I am unable to write you any type of opioid prescriptions so if you’re here for that I won’t be giving that to you.” As I handed him my recent MRI and my mom explained that I am exempt from AZ opioid law. He looked over my MRI and bluntly stated … ”yeah so what do you want me to do with this.” My mom and I were livid. I was in so much pain I couldn’t even respond to him but my mom told him … ”I want you to get someone down here to treat my daughter. Don’t you have on call neurologists?” He informed her they do but no one is going to give your daughter pain medications. I can offer her the drug addiction/overdose IV and that will take her pain away because it contains Benadryl and magnesium. We both stated I’m not a drug addict. He then informed both of us that was all he was willing to give me and stated word for word here … ”take it or leave it. it’s up to you but that’s all you’re going to get here, so I need to know what’s it going to be.” I told him no and he said that’s fine I’ll have the nurse get your discharge papers so just wait here. I was in so much pain and livid I told my mom let’s just go. As we were leaving the nurse gave my mom my discharge papers and told my mom she didn’t understand why I didn’t take the IV? My mom told her I’m not a drug addict, I have Arnold Chiari Malformation-1 and a pinhole and that IV will not help my daughter. The nurse then claimed that it “cures” Arnold Chiari Malformation and all of its symptoms. Unfortunately, there is no cure for Arnold Chiari and it comes with 25 different symptoms … all I got that day was a $1,000.00 ER bill and treated like a drug addict.

   Prior to this opioid hysteria and losing my meds … In the 16 years that I was being treated with my medications not once did I have to go to ER. I have been all but bedridden. I found out Monday November 12, 2018 I have to go to a cardiologist because they found an irregular heartbeat. I have high blood pressure and a fast heartbeat. My primary believes it’s because I was taken off the Valium cold turkey after being successfully prescribed for 16 years. Prior, when the CDC published its guidelines, I was six months away from my master’s degree from Grand Canyon University with a 4.0 GPA in criminal justice with an emphasis on legal studies. The university had also offered me a job upon my completion/graduation and they were going to work with me and my medical conditions so that I could work. I suffer from depression due to all the threats I received. I do not trust doctors … it’s taken me a year just to trust my new primary … I have gone broke due to all the medical bills … I have all but been cut off from family because they don’t believe me. They think I’m a drug addict who needs to go to rehab. One neurologist I saw ordered an MRI in 2017, only to tell me that I had been miraculously cured. Claiming my brain shrunk and the pinhole grew shut … He ordered an MRI of my neck not my head but due to his diagnosis I was deemed as a drug addict who was doctor shopping and red flagged. My primary order a new MRI to be done in May 2018. You know it’s pretty bad when both you and your primary are hoping that a painful, incurable and inoperable neurological medical condition shows up on an MRI, and it did. However, because a previous neurologist who was not my doctor and was just a consultation diagnosed me as cured based off of an MRI that was ordered and done incorrectly. It is like I have to prove to the medical community that yes I have ACM-1. Despite 17 years of documentation and that there is no cure for ACM, only treatment. I have ER bills that I cannot pay from 2017 to most recently in May of 2018 and I did not receive any help or treatment. After my last ER ordeal I don’t even go to the ER anymore … why should I? They won’t do anything except charge me for non-treatment and further red flag me. I have been fighting for two years to find a doctor who will treat me. In August 2018 I finally found a Pain Management doctor who was willing to take me as a patient. However, due to the CDC Guidelines and despite being supposedly exempt from the Arizona Opioid law, he is unable to write my medications for the quantities and dosages that provided me quality of life for 16 years. Of which in those 16 years, not once did have to go to the ER. Why? because my neurologist and (then my pain management doctor who took over my treatment) not only prescribed my medications and the proper dosages but made sure I never had to go one day without them …

3. I live with chronic pain everyday for the past 12 years. It has changed the way that I live and deal with my own hurtles. Every single day is different from the other. Sometimes you feel stronger than others. If it wasn’t for my stimulator and my medications I wouldn’t be able to function or get out out of bed. Now today I was informed… after nerve damage, nerve infections, risodomys, disc replacements, shoulder surgeries, and not to have anything else done because of all the damage. They are stopping all their scripts for pain medication even though I am on a low dose and never failed a test! I have no idea what I am going to do, but the GOVERNMENT HAS TO STOP INTERFERING IN MY HEALTH…BECAUSE IF I CAN’T BEAR THE BURDEN OF THE PAIN AND HAVE NOTHING TO HELP ME, I WILL HAVE TO TAKE MATTERS INTO MY OWN HANDS, AND I WILL BLAME THEM!

4. We see to now have doctors without honor. An oath to do no harm is a faint memory. Many doctors already are egotistical (apologies to the good guys), self appointed saviors of us uneducated peasants who are supposed to worship and admire them for their wisdom. Their has increased with the “so called” opioid epidemic. We would all like to think that doctors chose their profession to comfort and save the suffering. (A few might do that) but Doctors are in it for the money and to make “mommy” proud. The Government has not taken away the prescribing authority from doctors. If they are licensed they can prescribe if they want to. They now like to say “I don’t want to lose my license!” Now who is being stupid? That is not why they withhold medication. An educated, intelligent doctor can prescribe within the law even if he or she suspects the patient is lying. Drug seekers know what to say. If they is doubt…..better to write the prescription than let the sufferers suffer. We know we have people getting drugs that don’t need them and others suffering that do. How often do we meet Americans who get disability with a sleezy lawyer with a “buddy” doctor? These fakers are getting plenty of drugs and taxpayers pay for it.

5. I would not mind If my email address is shared here. I am a victim of the “opioid myth”. We really need to unite for the right reasons. You never know who you can trust these days. I think some of the “pain” forums are filled with people that just want to tell stories and it is true that “misery loves company”. That is not doing us any good in regards to reversing this “stigma” and national ignorance. There are thousands of Compasionate Doctors that would help but they are victims too. I am sure that many want to prescribe opiates but they are labeled as “OLD SCHOOL” and citizens by the doctors and politicians on a “mission” to degrade them just as they do chronic pain patients. With all of our valid complaining we still lose ground. I would ask people here if I could post my email address for one reason only. Unite. Pain patients are a minority but have civil rights that get crushed at the mention of opiates. Lets stop the murder of innocent human beings by the doctors and politicians that have sworn to help all Americans, not just the healthy who do not want drugs and have decided that no one else needs them either. The only way they could possibly understand is if they were inflicted with a painful disease, got relief with opioids and then have them taken away.

6. After almost 18 months of existing on a greatly reduced dose (70 pct.) of a once-effective opiod med, I’m in dire circumstances, my overall health deteriorating. Surgery postponed 2x due to impaired nutritional status. I can’t eat with increasing chronic pain. Adjuncts (Lyrica, cannabis) not effective. This governmental seige akin to genocide. It’s the new “Red Scare.”
   R. Moreland, RN (Ret)

7. I’m a disabled combat veteran. I served in the Active Army and I was injured in 2007 during the end of my second tour to Iraq due to a Vehicle Born Improvised Explosive Device (VBIED). Yeah, it’s a rotten deal when it comes to pain. I’m not going to give along speech on what happened next but you have a vivid imagination….months in hospitals, recovery, surgeries, and various treatments. It would be 10 years before I could successfully sleep on my sides again…. I had to wait for the proper procedure. Again, I volunteered for my country so this is not a forum for me to complain. I’m just pleading for those who sincerely are suffering like myself to be allowed to continue their medications in peace. My doctors all trust me even though I take quite a bit. I am compliant!!! However, my body feels like knives stabbing throughout my brain down my spine down through my legs 24/7. I have two caregivers and a nurse weekly to check on me. Mental competency helps as well. It’s just important to be self aware. On the other hand, I’m not defending the “addicts” who abuse the medicine….not for a second. I’m only defending others in my shoes who sometimes can’t even wipe their own…..you get the message.

8. I was injured on May 10 1981 the front bucket from a backhoe came off the machine and fell on my (R) foot crushing it. From that RSD developed in that foot and leg. My doctor had a leg brace made for me and after learning how to use it i could not stand for long so in 1985 i went back to work as a backhoe operator.

   In 1994 of May i was injured again. We were at the end of the day and i needed to cover the pipes with dirt so i went down in the trench to make sure the pipes was good. it was, so i told the men everything looks good and after we finished with the backfill we can set the manhole cover and go home. When i said that one of the men tried to put the cover on by himself and the 400 pound manhole cover fell on my head and left shoulder, then fell on my (R) leg and brace breaking my brace and injuring both legs, both feet, my left hip, my back, my neck my left shoulder, both my hands and elbows. It put a crack in my head, and now i have 80% loss of hearing in my ears with a ringing that never stops??? I’m in pain all the time, it never stops.

   i was getting pain meds for that and now I’m being told that what the doctor was giving me for 20-plus years i will not get anymore and i will never get the meds i was getting again. I go to pain management for my meds and they have been giving me testing for other meds that I’m not supposed to be taking for over 20-plus years to make sure I’m not taking something that’s not on my list of meds.

   Why am i being punished for what other people are doing? I’ll be 66 years old in November and now i am in more pain than i can take. They tell me to call the people we put in office, they are the ones that are pushing the new law without even thinking about the people that go to war, the people that do your pipes under ground, the roads, buildings you live in and (SO MUCH MORE). Also i was told that when people start taking their life then maybe someone will listen to the people that are screaming for help for someone to care because one day it could be (YOU). Thank You.

9. I developed severe scoliosis of the spine as a teenager, late 1950. At that time back surgery was unheard of. My lower back is curved like a snake that is crawling, I was diagnosed with Lupus at 45, the kind that attacks the joints, and then arthritis set in. I have been on pain medications since then, I am now 72 years old. I use my medication responsibly, but when the weather changes, I still have pain. Sometimes I just have to go to bed. My spine doctor is amazed that I still can walk upright. He says as long as I take the pain medicine as prescribed, and can tolerate the residual pain, he will not operate. The disc in my lower back have slipped and they press against the nerve in the spinal column. My doctors, there are 4 doctors that I see for my chronic pain, all understand my specific need for pain medication.

10. Ima living with breast cancer, suffering from chemo & radiation treatments. Neuropathy in legs. Bone on bone arthritis in my knees. Ankylosing Spondolitis. Bulging discs, degenerative disc disease. Fibromyalgia. Forced taper, quality of life is the worst it’s ever been. This is why so many people are on disability. Please stop the suffering & people from committing suicide. Our meds aren’t the problem especially when we follow Drs rules & contract. Always have good UAS. The real problem is illicit fentynol being put in presser with oxycodone, presser MMpurchased on Amazon. These pills then sold & people OD.