Share Your Pain Story

1,008 Replies to “Share Your Pain Story”

1. My husband was in a car accident when he was 21, has worked standing on concrete for 42-plus years, fell out of our garage attic onto concrete, broke bones, punctured a lung and cracked open his skull, was in a car accident and broke his leg. He has ongoing chronic pain from these injuries. He’s had hip surgeries, knee surgeries, injections and tried the whole range of drugs. The one drug he tolerates and that works, methadone, he has tapered from 4 per day to 1/2. I have to tell you he is not pleasant to live with anymore. He doesn’t sleep well because of pain and that just makes the pain worse. We saw the best result at 1 full pill per day with occasional vicodin for breakthrough pain when he does the yard, etc. His current doctor wants to switch him to large quantities of vicodin or an equivalent. How does that make sense? And, of course, the doctor would prefer to do expensive injections. At this point the doctor has refused to continue with even the 1/2 after this latest appointment. It feels like they are playing a bait and switch game. At first this one said he would gladly work with us. Now he’s dictating and wanting to get paid for more expensive treatments that we’ve already tried. This website gives me hope. Thank you.

2. I’d like to share my story real quick. I’m 32 living with genetic and hereditary chronic pancreatitis. I joined this group because I suffer daily with pain and it’s become hard to get help even through pain management. I not only deal with daily pain and the stigma behind pain medications but also being labeled an alcoholic even though I never have been, and have medical proof showing that my chronic pancreatitis is not alcohol related.

   I’m tired of the labels. I’ve had the opiates that were helping taken away or cut down. I’ve been put on a medication for opiate addiction which they swear is for pain but the FDA has only approved it for opiate addiction. It doesn’t help with the pain. Not for me. I’ve never once abused my medication or given them a reason to think I do. When I am in a flare I am afraid to go to the hospital because I would rather suffer at home than in a hospital bed. I’ve left AMA because I felt the doctors wouldn’t help me. I shouldn’t and no one else should have to suffer or be afraid to seek help when they need it.

   I’m tired of living this way and I just want my life back. I want a better quality of life daily. I don’t want to struggle with pain on top of everything else that has come with this disease. I was promised all of these things before the “opioid crisis” but have not received it. We shouldn’t have to jump through hoops just to get a little relief. Most of us that suffer from chronic pain have to go to enough appointments; why should we have to go to pain management every month just to get help when they don’t even really help. I want to take a stand for myself and others!

3. I had treated chronic pain patients for about 16 years before resigning from my last position, as I had a major conflict with the way the pain clinic was treating the patients. I am an advocate for responsible prescribing of opioids in conjunction with non-opioid therapies. Because I’m not in a position to prescribe, I am looking for people who can share what non-opioid treatments they have tried and that have worked. I would like to get back to helping CPPs. I will be honest in saying I don’t think the opioid issues are going to get resolved any time soon, so I am looking for a way to provide some form of treatment, used in conjunction with opioids, that can help improve pain. I did my doctoral thesis on the use of music as a means to help reduce chronic pain, albeit temporary relief. My email is free to disperse if it will help.

4. I’m 47. My leg pain started as a child, waking up in the middle of the night with cramps so bad I cried myself back to sleep. At 20, I herniated my first disc in the military. Was put on Tylenol 3 and sent back to work. Since then, I’ve had two discectomies and now have Ankylosing Spondilitis (which is not where I had my discectomies). I have numerous small bulges from my cervical to my sacral. I am seeing my 4th pain doctor. Two I interviewed with and walked away from because they were insistent on getting me “off pain medication” which would be great if it were possible. But my problem, like so many others, can’t be “fixed.” As my surgeon put it recently, “We could fuse your spine at those two levels, but you’re like playing whack-a-mole. We fix one problem and 3 others pop up.”

   ALL doctors treat chronic pain patients first with disdain and suspicion, even pain management doctors. The burden is on the patient to prove he is not an addict. Legislation has made it impossible to get more than one month of pain medication, which means monthly trips to a doctor, taking time out of work. And forget trying to get an advance RX for an upcoming trip that coincides with your running out of medication.

   Many pain management doctors want to push injections (I’ve had dozens) and other inpatient treatments (I’ve had SI injections, Nerve Burns, steroids) when the reality is that a pill is just as effective, and a heckuva lot cheaper and more convenient. But you can’t tell a doctor that without immediately being put in the “addict” category.

   The data don’t support the war on opioids and its time we did something about it.

5. I’m 71 and was effectively treated with hydrocodone for 23 years by two doctors, both saying this was appropriate. Then out of the blue, it became unacceptable! No reason given, I was cut off March 2019. My life is now a living hell, and no doctor will take me. “I don’t prescribe opioids” is a ubiquitous statement these days. When and where do I go to get help so that I can go back to how it once was, when I had access to a life worth living. I am denied control of my own life. Clueless people have decided how I have to live. A life without adequate pain control. The message is clear. The government knows best and now is willing to destroy peoples lives for the greater good. What is next? War on the obesity epidemic? A database that monitors all food purchases, and red-flags you if you get too much of the wrong foods? That’s exactly what is being done to chronic pain patients.

6. Hello. I just found about your group. It’s nice to know there are people out there who share my views. In 2018 I was diagnosed with Fibromyalgia and chronic pain. I have a primary care physician and a pain management doctor. Neither one of them have helped me through the pain I feel every day of my life. I’ve never come out and asked for anything stronger than Gabapenten for fear of the stigma associated with asking for pain meds. There’s no cure for this disease and I feel hopeless a lot of days and don’t know where to turn. So this is basically my story. I like many others with my condition am hopeless.

7. I’m 68 female being treated for Fibromyalgia for 25 years. While I lived in Texas I was treated with opiates which allowed me to work and take care of my family. I’ve followed all the rules concerning this medication, never had any trouble with what I was taking. A year ago I moved to Oklahoma City to care for my 91 year old mother. Little did I know the devastating change I was going to experience. The pain clinic I go to helps, but I cannot receive the kind of care previously given. I don’t know if I can describe the desperation and depression because of these new government controls over such a very personal part of my life. The doctor I see tells me I should go back to Texas because doctors in OKC are not going to risk losing their license to prescribe the kind of medication some people need. I’m not giving up yet, but some days I want to and don’t see any reason not to. I don’t think the state and federal lawmakers care what a relatively small number of people need.

8. I had a car accident when I was 34 years old and I am now 60 years old. Right after the accident I didn’t feel anything and continued on to my appt. However, ten months following my accident I was walking in the park when suddenly the most unbelievable pain shot through my right knee. I sat down on a bench and waited for it to subside. After about an hour when nothing changed, I got up and went home. That night I remember going to emergency because I was in horrific pain. Since that night my life has been a living hell! I was diagnosed by a doctor from Stanford University who said that I had the disease CRPS (Complex Regional Pain Syndrome) known to be one of the most painful diseases a person can have. There is no cure! And most cruel is that you can’t die from it!

   At one point the doctor that I had at that time had me taking methadone which helped me to have some quality of life. But fast forward to now, when the opioid laws came into effect and my present doctor has me on only half the dose of methadone which is nowhere near to being adequate in treating the tormenting intractable pain that I suffer from daily. On top of that, in 2018 someone did a hit-and-run in which now I’m even in worse pain than ever, unable to bend or do any small activity let alone have any small quality of life whatsoever. Most of the time I’m in bed. I’ve been severely depressed and many times have thought about ending my life. This whole fake opioid crisis has scared me to death. And doctors have done nothing in the way of protesting or protecting their patients because they too are terrified that their licenses will be taken away.

   This attempt by the CDC, DEA and FDA to put the blame on those of us who have taken our medications responsibly and in no way would do anything to jeopardize having our medications taken have been nonetheless taken by this fake opioid crisis. We have all been lumped into one category making us all feel like we’re a bunch of drug addicts. I pray that God will see to it that those people who are responsible for having put these laws into effect while countless numbers of people have committed suicide because they couldn’t tolerate the pain they had will be punished. And here the CDC, etc., etc. has acted as though they were so concerned about the overdosed deaths but what about all the suicide deaths of innocent people who could no longer take the devastating pain they were experiencing so they took their lives??? Thank you.

9. Someone asked to share ER stories about mistreatment. I went to the ER here in New Orleans in 2018. My rheumatologist wanted me to have a Heart work up and said going to the ER for this was the best and fastest way. So I followed his direction and went to the ER asking for a heart work up. They did that and then the doctor came in and asked about my symptoms so I told him what was going on. His first response was “well you will not get pain medication from me”. I was taken back as I never asked or complained about my chronic pain during this visit. While I was there I had a neurological episode and only then did he start to take me seriously. He was rude and abrupt the whole time. I told him several times that I was not there because of my pain but he kept berating me for being on pain meds and the ridiculousness of me needing pain meds. I explained my conditions and again told him I was not there for that. Due to this visit, I have vowed never to go to an ER again!

10. My pain is real. My pain barely responds to Tramadol. If taken every 6 hours, the resulting constipation will be worse than the pain itself. Managing pain with what we have available is a delicate balance.

    The source of my pain: A 3mm syrinx covering T-3 through T-11. So far, it’s impacted heart, GI tract, and probably pancreas. It trips my body into fight or flight which makes controlling diabetes even harder. Before I had Syringomyelia as a diagnosis, no one believed I was suffering. They all seemed to think it was drug-seeking behavior. I begged UT Southwestern Dallas for help and they turned a blind eye because they don’t treat with narcotics.

    Luckily, HIV was found and I was already back into the healthcare system through charity. Charity honored my request for a full spinal MRI, which no doctor had ordered at any of the flare-ups during my 30-plus years of dealing with this. When no one would help with disability or pain, Ryan White Foundation funded my ACA insurance. Once that was in force, I had a GP who filled out the SSDI report and I went looking for pain management. Thank God, I found a group willing to listen as UTSW advised my spine had many problems that surgery could not help.

    As a result, we now do annual MRI studies to ensure that this syrinx never starts going sideways. And I’m stuck at home, taking things one day at a time.

11. Gosh. Where do I start?

    General practitioner send me to orthopedic doctor 7 years ago. Result inoperable lumbar spinal stenosis and degenerative disc disease. 3 years of lumbar injections, 6 years of cymbalta, tramadol and zanaflex. 8 months ago changed to cymbalta, nucynta and zanaflex. After 7 months, I feel like I am now on a decent dose to handle everyday pain and breakthrough pain. Oh yeah 3 years ago I had a spinal stimulator put in. Amazing device, but let’s face it. At best it helps your brain handle more pain while helping you not feel it all. It’s used to help ease your pain, not rid you of all pain.

    3 years ago, my doctor started giving me issues with refills of tramadol. Pharmacy did pretty good on keeping my refills going. Not quite a year ago, my doctor sent me to a Pain Management doctor. It’s taken me 7 months to get on a high enough dose to get relief from my daily pain.

    I should probably add this. 27 years ago, I received a living related kidney transplant. As you may know, drugs like Advil are not supposed to be taken by kidney patients.

    Both my kidney and my spinal stenosis are hereditary issues from my mother’s side of the family. I watched my mother suffer in agony the last 10 years of her life, but hey, she got the good stuff back then. Oxytocin, Lortab and the like. Though I will admit, the last nail in her coffin was liver failure and kidney failure from pain meds. So yes, I’ve experienced the torture of trying to love the unlovable who suffer with life sucking pain.

    And I have a pretty good glimpse of what I will be facing in the next 10 years. But unlike Mom, I refuse to suffer silently.

    About 4 years ago, after having 4 doctors tell me MMJ would change my life, I began weaning my cymbalta dose down. I slept like a baby on black market purchased tincture with THC in it. But job changes and drug tests got me back to pain meds again.

    My story of pain punishment starts with the pharmacy. Thanks to state legislatures and CDC guidelines, my national chain pharmacy generally treats me like crap having to call every 30 days to get my Nucynta. “We don’t have enough. You just refilled that. First fills require 7 day dose at full copay.” Like every imaginable bullcarp line you can think of, I’ve heard when it comes to refilling my pain meds. Like I said, why treat me like a criminal or junkie?
    I have a script. You fill the order. It’s that simple.

    I have a 5 year plan to retire. At that point, I will probably drop big pharma and switch to MMJ. I have been reading up on how to grow it. Looking at ways I can, in my current Bible belt non-compassionate state, for my very own consumption. I’m tired of the hassle. I’ve told my wife, the good news is, we will only need one vehicle, cause I’m staying stoned 24/7.

    Will it all work out? Who knows. But I haven’t worked my entire life to put up with the legal way of how pain patients are treated by how the medical and pharmaceutical communities treat us day in and day out. What have I got to lose?

12. I am one of those patients caught in the “deadly” net.

    I have Ehlers-Danlos Syndrome, POTS, along with other conditions. I was happy, healthy, and functioning on 1 to 3 norcos a day (give or take). I didn’t take them every day. I never abused them. Have never abused drugs even. Then they took it away.

    They stopped seeing me after I had a ruptured ectopic (I informed them of btw that the hospital would temp be prescribing stronger medication). After my OB found out they refused to see me anymore, he even wrote a letter on my behalf (still they refused to see me anymore).

    I had two back to back laperotomies, lost over half my blood volume, and a few weeks later developed sepsis from MRSA in my abdomen.

    After years of trying to just “deal”, they finally put me back on, but this time only one a day. I thought okay, at least I have a little safety net so that when the flares come I won’t kill myself.

    But then my functionality got worse and worse. It had already become worse since they put me off. I became less and less active. When I asked for one AM and PM with hydrotherapy PT again at least 3 times a week (I wanted inpatient physical rehab), they refused and gave me a last prescription to taper off of. They okayed the PT, but now I was in too much pain to handle much of anything, let alone PT to help re-stabilize my poor joints.

    Now, no one will help me. I had to drop out of college. I can’t work, I’m on disability now. But I want to work (I’m one class away from the OTA program and 4 classes shy of a bachelor’s is psychology. I want to be happy and active, I miss my family (I’ve missed many holidays due to being in too much pain to be anywhere other than bed). I am so far de-conditioned now the pain is intolerable most days.

    The thing is, I have quite a high tolerance to pain. Save the repeated passing out, that ruptured ectopic didn’t phase me. I just sat there. Once the hospital found out I’d had a rupture, they asked me aren’t you in pain? I sat there calmly and said yes very much so, but I’m used to pain. I’m in pain 24/7. Some days are much worse than others.

    I’ve begged, I’ve cried, I’ve told them I’m at risk of suicide, I’ve asked for alternative therapies like prolo-therapy and ketamine with a hard no. None of which has garnered anyone’s attention to help me. All they want to do is give me painful steroid shots in already much declined joints.

    I am one of the abandoned…

    I want to end it, I think about it every single day. I have no quality of life. What am I supposed to do? How many of us have to become martyrs to make them see what they’re doing to those of us who are in legitimate pain, especially those of us with “invisible” illness (we face even more hell because we “don’t look sick” or “look too young”).

    At this rate, my life is slipping away. It’s as if I’m dead already anyway.

13. After being ejected from a Ford Explorer on I-77 I had brain surgery on Thanksgiving Day. My spine was damaged from bottom to top, my jaw was broken, and my right elbow came out of place and wasn’t set back properly so calcium deposits formed and hardened into bone in my joint – locking my elbow in a bent position with less than 40% movement. It grinds every time I move it, and arthritis has set in and will only get worse and worse as I age. My sinuses were obstructed from the impact and I’ve had constant infections as a result. 5 years ago my ENT diagnosed me with a bacterial infection called Pseudomonas.

    I’ve been on strong antibiotics and steroids steady for the last 5 years but my body just will not expel the infection and doctors can’t figure out why. They even tested me for Cystic Fibrosis as these patients are usually the ones battling this infection but that came back negative – thank God! I had a PICC line and IV antibiotics for 2 hours every day for a month but the Pseudomonas still came right back. The headaches are terrible, and my worst days are when the Pseudomonas, Occipital Neuralgia, and TMJ are all triggering at the same time. A couple weeks ago I consulted with a new pain doctor and he actually mocked me claiming that I didn’t need pain meds for my issues. He said this without even looking at my records yet, because he said he had not received them yet. Any trained eye looking at my scans has told me they would have questions if I didn’t require pain medicine.

    I was first referred to a pain doctor that immediately started me on percocet. I was thrilled to have a medicine that actually worked as nothing over the counter helped my headaches at all anymore. At that point I was afraid to wake up each morning because when I woke with a headache it would last all day long until the sun went down no matter what I took/did.

    I quickly became more and more tolerant to the low dose so the doctor just steadily increased me. Before I knew it I was taking [a higher dose] tablet [of a different med] [more often. I was concerned about my tolerance and asked if we could try to back down to a lower dose to try and leave some room to increase again when I have surgery. I knew I would be having several surgeries and wanted to be sure these meds worked well.

    He put me on the lower dose and I did okay at first. Then I was in Nashville recording on Music Row and had the worst headache. My tracking producer and the band could tell how miserable I was, so he pulled the plug on the session and told me to go back to my room and rest because I looked terrible. I called my doctor’s answering service and one of the on-call doctors called me back. I explained what was happening and he asked me if I had enough to take two of the [lower dose tablets] at a time until I got home from my trip. I told him I did, but that would put me running out a week early. He told me not to worry about that because clearly I needed the [double-dose] tablets, so he told me to get through my trip taking two of the [single-dose] at a time and then come see them as soon as I get home to get back on the [higher-dose] tablets.

    I did exactly as I was instructed to do. I went straight to their office as soon as I got home and my doctor came in and told me he wasn’t refilling me early. I explained exactly what his colleague had instructed me to do, and he responded with “well he is not your doctor, I am, and I didn’t tell you to do this.” I was furious! If I’m not supposed to listen to the on-call doctor then why would you have him calling your patients back after hours? He finally told me he would give me my refill early but if he did, it would be the last one he could ever give me. I had no choice. At this point I was physically dependent on this drug and the withdrawal on top of the headaches would probably kill me so I took the prescription and my primary doctor started treating me for pain. This was the beginning of the nightmare pain management rollercoaster I’ve been on for the last 13 years. I hate needing these meds but the reality is I will likely need them for the rest of my life. Every time a doctor finds a treatment plan that works well that doctor leaves/retires/changes clinics and my treatment plan has to change entirely despite the old plan working well.

    I have had several very bad experiences with pain doctors and sadly most of them seem to think they can treat patients any way they please because we are nothing more than drug seekers to them and many of them act like glorified drug dealers. When I started having surgeries and procedures to try to fix at least some of my conditions that’s when the pain doctors really started treating me horribly. I guess they don’t like the idea that other specialists will be watching everything they do with my pain management or that they will need to work with the specialists/surgeons to manage my pain after surgeries/procedures. One pain doctor actually blackmailed me and said he would not give me the pain meds I needed and had been on for years if I didn’t allow him to give me injections in my spine. Injections that would not help my headaches and that my neurosurgeon said would be “an insult to injury” and I should not have them at this time. But I was out of medicine again and had no choice. My neurosurgeon was right. I spent that Christmas not only battling the headaches but now my back/neck was hurting like it hadn’t hurt before thanks to that doctor’s injections.

    This summer has been the worst in pain management. I have less meds than I’ve had in 13 years and the pain hasn’t gotten any better in all those years. I’m doing what doctors tell me but somehow it always seems to blow up in my face. I wish there was a treatment that wasn’t controlled and didn’t have to involve pain doctors. I believe so many legitimate patients are being driven to illegal drugs just to deal with legitimate pain. This should not be happening in the USA! I’m horrified to have the 3 back surgeries I need, if I come out of surgery in worse pain, which often happens with back surgeries from what I’ve been told, how would I be able to stand it with these pain doctors not really treating pain anymore? Any pain patient that’s been in this for a while knows the constant struggle and I wish we had an advocate speaking on our behalf every time a politician uses the “opioid epidemic” as a campaign issue while ignoring the illegal drug trade in America. They need to leave me and my doctors alone and go after the illegal drug smugglers, but doctors and patients are a much easier target. Meanwhile half of Congress is probably getting their pain meds with no problem.

14. Hello, my name is Journey and I suffer with stage 4 endometriosis, rheumatoid arthritis, osteoarthritis, PCOS, and fibromyalgia. I was diagnosed with fibromyalgia when I was 18 years old and was sent to a pain clinic where they did absolutely nothing but give me a TENS unit and Lyrica. Lyrica made me gain so much weight and I’ve had a past eating disorder. During middle school I had really bad pelvic cramps but didn’t start my period till I was 15 years old. Every OBGYN I went to as a teen, kept telling my parents that it was your average bad period cramps.

    Once I got older, around 2016 when the CDC guidelines came out, I was blacklisted at St. Mary’s Mercy Hospital in Livonia Michigan where I was listed as a complex patient because I frequently came to the ER several times, because I couldn’t control my pain. I had no PCP or no pain management doctor that would prescribe me opioid pain medication. I had to suffer and when it got so bad that I felt like I was dying, I would go to the ER. I would go to the ER like four times a month because it got that bad. Every visit was the same, doctors dismissing me accusing me of drug seeking. Don’t give me anything and actually kick me out because it’s not a medical emergency, but I do have a history of kidney stones and ovarian cysts. I have to be careful because I could have a ovarian torsion if there’s too many cysts, I would have to consent to emergency surgery. If they wouldn’t test me, I would be so scared thinking I was going to die. I heard ovarian torsions can cause death if not treated. I was dismissed so many times in the ER especially by male doctors because they think I’m over exaggerating and use my mental illness against me. I do suffer with depression and PTSD as I went through a sexual assault three times in my life.

    In late 2018 I met a wonderful OBGYN female who gave me a laparoscopy in 2019 of April, diagnosed me with one of the worst cases of endometriosis in her practice! She has been managing my pain with Norcos but then lately she has been having trouble with CVS pharmacy filling my 42 tabs for a month, and saying she’s “overprescribing.” She is force-tapering me and I don’t think she wants to do it, but she’s so worried about her license more than her patients. I know she needs to make a living, but her helping me with my pain was a godsend. Now I’m back to square one, not receiving any proper pain management. All pain management in Michigan want to use steroid injections, nerve stimulators, and physical therapy. They do not believe in opioids unless you beg them, or prove that you don’t smoke medical marijuana.

    I want to be an advocate for chronic pain patients because I felt like I was alone when I was accused of being a drug seeker at my local hospitals. I even brought my mom with me and they still treated me horribly, and my mom is my patient advocate. I have had chronic pain for 15 years now! I’ve been cut off of my hydrocodone and I am a big advocate for kratom and medical marijuana. Medical marijuana does not work for me but I am for it for other people that helps them. I also am an advocate for Kratom, Kratom works immensely! I feel 75% better with Kratom but however my Norco really helped me. I took it twice a day, once a day, or every other day if I’m having a pretty good pain day.

    I did not choose this life and now I have to suffer the consequences because of people who chose to abuse. I am so honored to be part of the Don’t Punish Pain Rally because I really felt alone and so glad I met other people who are going through the same thing but upset that they’re going through this! Nobody should be denied pain management and opioids that make your life bearable. Opioids are a human right and your quality of life. My PCP currently is giving me a hard time saying I’m too young for all this pain and too fat, when I’m 95% bloated from the endometriosis. I have the early stages of rheumatoid arthritis in my hands and feet. My hands swell up the size of a rubber glove and very stiff, swollen, and red.

    I told my current male PCP that my mom’s side of the family has a history of RA. He told me that rheumatoid arthritis does not hurt and does not affect the hands. I had to beg him for a blood test because he was not going to give me one, I told him I need to know if I’m okay. He sighed and rolled his eyes and said, “I guess I’ll give you blood work but I know your results will come back negative.” Got my test results back, diagnosed with RA. No apology from him or anything! How much gas-lighting can I take?

    I’m in the process of trying to change my PCP but every time I call for a new PCP, right away they’ll say over the phone, “We can’t prescribe narcotics!” I’m not looking for narcotics, I’m looking for someone to take my pain and other chronic illnesses seriously. I want to take tests knowing that I’m not a drug seeking junkie, and know what my actual diagnoses are. I have my OBGYN who was prescribing but right now I have been cut off completely. I hope to have my pain meds back and I hope this opioid crisis comes to an end.

    I went to Garden City Hospital one month after my surgery in 2019, I had a male doctor who said I forged my own laparoscopy surgical paperwork. He threatened to call the police and have me arrested for trying to steal drugs when I was curled over screaming in pain. I have a very low pain tolerance and pain hits me hard like a school bus. He mocked me when he kicked me out, and I was about to fall over in the hallway because the pain was so bad. He said out loud in front of everyone which is against the HIPAA law. He said, “There goes Journey walking out like she’s going to pass out, she’s so over-dramatic! She’s just a drug addict!” He even had the audacity to say that I made my blood pressure go up purposely so I could prove that I was in pain. My blood pressure was 160 over 105 when I got to the hospital. I was in so much pain and was curled over, I couldn’t even speak. He was rolling his eyes and laughing at me, and remembered me from a couple years ago. I felt like just giving up and ending my life right then and there. The suicide rate is so high, and I’ve been in that dark place many times. We need to end this atrocity and pain genocide towards chronic pain patients.

15. My heart is breaking just reading these stories of others pain. Journey, I dealt with the same issues you’re having, but fortunately for me, it was 25 years ago when doctors could help patients without fear of a politician pretending to be a doctor and a cop. It took 3 years of agony, and doctors treating me like a drug addict.

    We moved from California to Washington as I had attempted suicide three times due to the pain. In Washington, the first obgyn I went to, saved my life. He immediately knew what was wrong and wanted to confirm it laparoscopically. I’ll never forget, after the procedure, he came to my room, where my husband and I were waiting for news. Doctor came in and held my hand and said, “It looks like a bomb went off inside you.” He scheduled a complete hysterectomy, however my endometriosis continued to grow everywhere. He said in rare cases like mine, the endo will make its own estrogen to feed on and grow.

    For about a year, I would go in and have to have new endo cut out, burned and whatever else they do. My doctor actually purchased a special camera to photograph my insides for education purposes. Finally, I started passing blood in my stool so the endo had penetrated my colon. My obgyn sent me to a surgeon to have some of my colon removed. At the pre-op appointment I was crying, the doctor told my husband I better knock it off or he would reschedule. He thought I was being dramatic. After the surgery, the strangest thing happened. This man dressed in black leather from head to toe comes in to my room. It was my surgeon on his day off. He came to apologize for his treatment of me on our first visit. He had removed a couple of feet of my colon and new endo. I was utterly shocked that this pompous ass had realized the severity of my issue to the point of apology.

    At this point, my doctor said I could continue to get cleaned out every couple months or go to a pain doctor who can help me have some quality of life. I had a 2 and 4 year old at home that I could barely care for so we opted for pain management. Fortunately I found the next doctor who would save my life. He tried everything in the book to control my pain, but realized opioids were my only relief. I have an extremely high tolerance for opioids. For example, 6 norco is equivalent to an Advil for me. Luckily back in the day, doctors could treat each patient’s individual needs. (My mom and aunt have the same problem with pain medicine.) It kicks in fast but only helps for about two hours.

    The amount of opioids I was on back then shocks my doctors now. They think it should have killed me. But instead it gave me my life back. I could care for my family, work a part time job. I drove all the time and had no problem. After about 10 years, my pain began to subside and I decided to stop taking pain meds cold turkey. We were prepared for withdrawals, but nothing happened. I was fine. Fast forward 10 years. 4 kidney surgeries (I also have chronic stones) and 4 foot surgeries within two years and again I’m back in debilitating pain. But this time, politicians are playing doctor, like they have a clue, and doctors are afraid to help their patients. I have several problems with my spine causing pain almost everywhere. My pain doctor gives me injections which don’t help, and opioids equivalent to a baby aspirin for me. Suicide seems like the only option most days but I moved to Virginia a year ago to be by my grandkids and I’m trying desperately hard to endure this hell for them.

    It is insane how this “opioid crisis” is being handled. Personally I’m sorry that drug addicts are dying because they choose to abuse drugs. But that’s on them. I didn’t choose to be in so much pain, and to be honest, I thought about buying street drugs, but I wouldn’t even know where to begin. I’ll be 50 in 2 months and all I want is to live my life, play with my grandkids and not consider suicide every day.

    POLITICIANS, STOP PLAYING GOD, DOCTOR AND POLICE.

    One day you may be struck with unbearable pain or have to watch a loved one suffer, then you will understand but it will be too late for many of us. Go do your political nonsense on something that doesn’t hurt and sometimes kill the honest hardworking people you’re meant to protect and serve. You’re not equipped to handle or understand this kind of pain, so let the doctors who are, do their job.

    It’s ridiculous that we even need things like this website to fight for something that should be a given.

    First, do no harm. That is what physicians vow to do. I can tell you in my life, I can’t count the doctors who have harmed me since this ludicrous bull***t started. But I like to think it’s because they are scared of the repercussions and not that they don’t believe me or care.

    Where did our humanity go wrong? How is it even a thing to let innocent people suffer? Their deaths are on your hands so I hope you can live with it. Sadly you don’t seem to even care.

    Bonnie

16. My son is 19 years old. He had a kidney transplant at 12 years old and cannot take NSAIDs. He has a history of Chiari malformation, scoliosis, degenerative disc disease, rheumatoid arthritis, irritable bowel disease, and has a nerve impinged in scar tissue on his thigh from a previous surgery. For every one of these diagnoses it was like pulling teeth for the doctors to believe that something was wrong. Now that he has these diagnoses you would think he would get some pain relief! Wrong, he is told over and over again to take Tylenol and is prescribed a low dose muscle relaxer. He has been hospitalized twice for suicidal ideations/attempts because of his pain and feeling like nobody believes him. I work in healthcare and understand that there is an opioid crisis, but there are also those that have true pain. How is it right to leave those in pain because of those that abuse???

17. I have seen Sandra Erickson at The Pain Center and she cut my dosage of oxy by a quarter. I am in pain and I called to leave a message for my provider to go back to the original dose, the call back said she said no, and that I’m supposed to taper off. She said to give it a try for a month for my body to get used to a smaller dosage. What are my options?

18. Some of your stories sound so familiar, they are all heartbreaking. I honestly never knew anything about pain and suffering until 2016 when I was diagnosed with Ankylosing Spondylitis and Fibromyalgia at 36 years old. I had never been to the ER, had stitches, broken a bone, or ever really been sick at all. Needless to say, I wasn’t able to accept being bed bound due to chronic pain gracefully. I still haven’t fully accepted that I was served a life sentence without the possibility of parole (AKA pain management). Try not to let my next sentence shock you or cause you any additional pain from lol’ing too hard… I had absolutely no idea that patients in America were told to go home and suffer for the rest of their lives! Lol! No lie! How many of you have been told to just eat a healthier diet, continue exercising in excruciating pain and to practice breathing techniques to reduce your pain level? Or just take a few NSAID’s to help control the pain. At this point is when I started to question the credibility of all these medical professionals. For some reason, I continued to schedule appointments with the best of the best because I was still somehow naive enough to believe that someone would actually help me.

    I was wrong. I eventually lost my job as a Special Education teacher, a job that I loved dearly. That financial hardship lead to us to losing our home as well. I can’t even describe the level of fear and panic that I started to experience. I have a wonderful husband and two beautiful daughters. I couldn’t remain bed bound and watch them struggle to care for me, that wasn’t an option. I made the choice to seek help in alternate ways and discovered hope again. I can’t even begin to describe what our lives are like now. We were forced to go from the Brady Brunch to an episode straight out of the Ozark series with the quickness. I never knew this world existed but it’s very real. The only thing that the opioid restrictions changed, was whose hand that the prescriptions land in first. The elderly population along with the high poverty population who receive Medicare and Medicaid, use their monthly covered prescriptions to help supplement their income. For some reason, they are freely prescribed. No questions asked or diagnosis required. The majority of them sell their entire prescriptions, minus the 3 pills they keep in order to pass their drug test the following month. They usually only sell to specific people, these people are the “drug dealers”. They usually pay them $500-$800 for 117 opioids. That’s where “we” come in, all of us who are suffering and bed bound without medication. The ones who are desperate to stop the pain and willing to pay any price for an ounce of relief and a sense of normalcy. The ones who have lost all hope in our healthcare system. The ones who have been forced to live like criminals. The ones who have stood in line at a pain clinic and been treated like a drug addict. Those are the ones I am speaking of, the ones who are just like me. Those of us that love life and want to continue living it to the very best of our ability. We wake up every single day and hustle our hearts out just to hand it all over to these “drug dealers”. We pay $15 per opioid on a good day. When the supply starts getting low, we usually pay $30+ per opioid. Did y’all hear me clearly? $30 each! An average chronic pain patient requires at least 5 opioids per day, that averages at least $100-$150 per day.

    This is the “America” that we live in.

    Wake up people.

19. I am a 52 year old mother of 4. In the past 6 years I have had 3 spinal fusion surgeries resulting in 14 screws in my spine. The screws were to stabilize my spine, but have not relieved my pain. In addition I have new discs that are bulging which will probably eventually require more spinal surgeries. I was diagnosed with Fibromyalgia 22 years ago as well as an autoimmune disease, Hashimotos Thyroiditis. I am in pain 24/7. Do you know how exhausting it is to work, have relationships and just function when you are in pain every second of your life?

    A good day for me is when my pain level is at a 2-3, but it is never a zero. When I am flared up (which happens when storms roll through, I over-did it at work, or just pissed off my back by turning just a little too much when I buckle my seat belt) my pain shoots to an 8. That means my entire back is on fire, I have nerve pain searing down my legs that feels like I am getting poked by hundreds of burning hot needles, and my spine feels like it has a vice on it. In addition my cervical spine has flares that will give me excruciating pain at the base of my skull which tenses up my muscles so badly my skull is raw and tender to the touch resulting in a migraine. A new added twist is the pain will make me throw up if it gets bad enough.

    I will get these flare-ups several times a week. But I still need to work to provide for my family, and put on a smile because people don’t like a complainer. I have tried physical therapy, acupuncture, exercising (which even just walking is painful now), over the counter meds, ointments, injections into my spine and even using lasers to kill the nerves in my neck to get rid of the pain (the nerves eventually regenerate). My pain management doctor has prescribed opioids and they help. But because of new regulations I can only get a very, very limited amount. So I have to wait until the pain is unbearable, like curl up in a ball and rock back and forth completely unable to sleep before I allow myself the luxury of taking one of my precious pain meds … gotta make them stretch.

    I have been told to take a bunch of Benadryl when the pain is really bad at night to try to sleep through the pain. The stigma and negative messages about pain meds out there make me feel guilty when I take them. I am made to feel guilty for needing a medication to help me get rid of the horrible pain. Guilty! Are diabetics made to feel guilty for needing insulin? Or course not. But chronic pain sufferers with legitimate causes for their pain are made to feel like junkies, or weak because we need help. How is that fair or just? Why am I a bad person for not wanting to be in pain ALL THE TIME?

20. I suffer from CRPS/RSD and full body neuropathy. The pain with CRPS and neuropathy is so intense that I cannot walk most of the time. When I walk it feels like I am stepping on glass and my bones in my foot, leg, and pelvis feel like it is crushing every bone. It’s like getting cut, if you picture a knife is filleting my muscles. Like when you fillet a fish.

    Imagine experiencing that and having to feel it every second of every day. There is no reprieve and no relief at all. The burning is like somebody has poured gasoline in my body and lit me on fire. At the same time, the skin feels numb, as if you were standing in a block of ice how it begins to burn and you could not ever jump out. It feels so cold at the same time as burning and on fire. It is unrelenting, burning, crushing, and never goes away. For a lot of chronic pain sufferers, pain comes and goes. But CRPS patients feel this pain non-stop. There is no getting out of it. It is the most horrific pain a person could ever feel.

    They say the pain is worse on the pain scale than cancer, amputations, and childbirth without any anesthesia. Being a mother of 3, they’re not wrong. I know it’s much worse than childbirth. I’ve never experienced cancer or an amputation, so I couldn’t attest to that. But it wears on you every day. It is dubbed the suicide disease because the agony is unbearable and there’s no hope out there for getting better for someone who has it and goes undiagnosed and untreated for years. Because it is so ignored by the medical community and not taught to every doctor, as it should be in school, it went undiagnosed in me for four years (there are thousands out there that go undiagnosed to this day).

    It is at a stage in me where treatment is only about keeping me as comfortable as possible until the end of my life. No help in anything over the counter. I have had 2 spinal stimulator implants put in, which has done absolutely nothing for me. It actually made things worse. I have tried injections, nerve blocks, nerve ablations, and countless medications. You name it and I have most likely tried it, to no avail. I understand the narcotic epidemic. I get why things need to be addressed and the system needs to have checks and balances in place. But taking away narcotics from the people who desperately need them to be able to live as comfortable of a life as possible is NOT the answer!

    We need to have our doctors treat us by whatever means necessary, so that we can live life and be there for the ones that we love, so we don’t have to be miserable and in so much pain that we don’t want to go on living. You have seen a rise in suicides because doctors are scared to treat their patients. The government should never presume to know what’s best between a doctor and a patient. A doctor should be able to treat a patient as they see fit to have some semblance of a life.

    I can understand a system where one can look and see if patients are doctor hopping or hospital hopping to score drugs. That should be done. But someone who is going to the same doctor or same ER is not trying to hide anything. They are just trying to get relief from this hell we are living in. The hospitals and the doctors should be able to discuss their patient’s options openly, honestly, and freely. Not have their hands tied. They need to be encouraged to feel free to assess and treat each individual patient’s needs. Don’t let people who abuse it ruin it for the ones who truly need it and choose to use it responsibly. Don’t force these people to go on the streets to get relief or worse: take their own life! Help us patients that need it! Please! One more day is too much for us.

    Thank you so much for taking the time to read mine and all of the pain patients cries for help. May God bless you and keep you, and may he lay on your heart to do the right thing. Please untie our doctors’ hands, and fight for the forgotten pain patients, and help take away our needless suffering.

21. Why isn’t anything getting done? I’ve been writing letters to politicians for over 4 years, how long are we supposed to hang around? Stuck in bed now have to battle bedsores, 53 years old. I thought maybe it would be possible to get a couple of years of life in. Can’t lay in bed forever. It’s so damn irresponsible what they have done, the junkies have options. The patients don’t have that choice. Maybe if everyone’s medicine was taken away for everything, since chronic pain patients don’t need medicine, no one else should have to need it either. Going to Hell would be a holiday

22. I have a severe and complex case of Trigeminal Neuralgia which came with Cluster Migraines. I have had 4 brain surgeries to somewhat help with the pain. I have had this for 19 years. It is classified as the worst pain known to man. Of course it just added to other medical issues, but it’s the only one to take me down in an instant with no warnings. I’ve had to advocate for my medications because at first they just kept piling more pills so that I could barely walk and treatment wasn’t helping. Since my neurologist at the time refused to take away the pills that weren’t working, I took it upon myself to wean myself off them slowly. When I reduced the number of different meds, I was more alert.

    I moved and found a neurologist that I’ve had now for 16 years. He actually listened to what I was saying, instead of telling me how I was feeling. He helped me go from 30 meds for that disease to 4. I was extremely thankful and trust him dearly. Opioid treatment is the only thing that helps the Cluster Migraines. Plus after my third brain surgery, when the weather’s barometric pressure changes, my head where my incisions are on both sides of my head, indents severely and puts extreme pressure and a feeling of electrical ice picks stabbing me. Opioids are the only thing that helps break a lot of the pain. Doesn’t help control my Trigeminal Neuralgia; for that I am on both Lyrica and Gabapentin. I also am on meds for PTSD which includes Xanax.

    When I moved to Florida 6 years ago to help the progression, I needed to go to Pain Management doctors. They kept trying to increase my opioids and add Fentanyl (which scared me) and I refused. I have been leveled on what works for me and didn’t want more dose. They wanted me on higher drugs, and the next time treated me like I was a drug seeker or addicted. My background is in Law Enforcement, so I ended up telling them off. Went to several Pain Management clinics because of different reasons. Was so upset and took it personally. I went to my neurologist who is in Minnesota. He mailed me my prescription each month. Since mail was delayed and slow, I decided time to try in Florida again.

    I did find a wonderful doctor 14 months ago. I then started having problems getting my prescription, because Walgreens got a new Pharmacy Manager. Now I have to argue with the pharmacist, and I don’t have a problem making a scene when someone tries to belittle me. He has an issue with my being on both Lyrica and Gabapentin. They have insisted on speaking to my Neurologist personally, his nurse or assistant. He was not happy and took it out on the pharmacist. He supposedly noted it in my account so there would be no issues. Yeah, that worked for a month. Second call was brutal because the pharmacist tried belittling my Neurologist, who has over 30 years of practice and is the senior neurologist in the clinic.

    Every month I still go through this with those meds. Then 2 weeks later I have to fight with the pharmacist to get my opioid and Xanax. The pharmacist even tried to bully me into accepting Narcan in case I overdose. That is calling me an addict, so it became another scene to the point they don’t ask me that anymore. I’ve been told by the pharmacist that Lyrica and Gabapentin are killing me; I told him if that’s the case then I should have already been dead 19 years ago. I have enough medical knowledge and have worked in poison control. So I am very direct and remain firm, but polite. I can fight for myself, but I shouldn’t have to!

    I hate being lied to by someone thinking it’s going to intimidate me, I know so many that will back down instead and end up in tears. I hate seeing people bullied and treated so badly.

    I suffer every day, every hour with electrical stabbing in my face, ears and head. I have nerve damage from head to toe. I am never pain free, even with meds.

    Knowing so many who have Chronic Pain and need opioids to be able to barely get out of bed, or to live some type of life. I believe in quality of life, not quantity. My doctors will drug me up with all these meds but with all the side effects, it’s no life.

    I am now starting to truly fight for those who can’t. I know how badly doing so will affect me, but it’s worth the added pain to fight for everyone’s rights of getting back the doctor-patient relationship. Your PCP knows you, knows your actions, tendencies etc. Pain Management doctors don’t know you, they don’t look at the paperwork or your records.

23. The government doesn’t give a hoot about real pain patients unless they’re not dying fast enough. Junkies are cared for without end. A nearby city houses, feeds, and delivers the drugs of their choices to them so they won’t go without. It’s disgusting what is happening. Anyone who cares at all needs to join with the pain patients to be the loudest voice possible so maybe some better change will happen. I saw pain patients come out to the rallies in their wheelchairs, walkers, and scooters. They need to to keep coming out to be seen and heard. Even come out on gurnies if need be so all can be seen and heard. Because if we don’t speak out for ourselves who will?

24. I have cirrhosis stage three, upper and lower scoliosis, spinal spondylosis, spinal stenosis and epilepsy. I also recently had surgery. I had a full hysterectomy and a uterine, rectal and bladder prolapse surgery. I work as a caregiver for disabled children and adults. Two months ago I was told that I had to taper that they were tapering down the whole clinic due to CDC and DEA guidelines! I have followed the rules of my contract 100% and I feel like I am being punished for others actions. I am terrified that I will lose my job and housing and be living in a tent, in pain. I will have no quality of life because I can’t get out of bed without them and my stretches. I wrote to Dan Sullivan and all he wrote back was something about Covid. It had nothing to do with pain management, I’ve joined this wonderful group, U.S. Pain Associates. I’ve written to CDC and DEA. If anyone knows who else to write to please post it and I will write to everyone I can. Thank you so much, Angelita Torres

25. I’ve been out of work for years only working when possible since my doctor took me off pain medication. I’m now homebound fighting severe pain and suicidal thoughts because of my pain causing me to not work, showering regularly, missing so much of my kids’ life events of their success etc. Being on hydrocodone with some tramadol to help the between pain was very successful for me but doctor got scared and took me off. I have torn ligaments on my neck and ankle from many car wrecks through my life so my endometriosis, fibromyalgia, scoliosis, osteoarthritis, and disk disease are severe suffering. I’m broke so I’m fighting to keep a roof over my head. I don’t have legal help to fight for me, if there’s a way to help me please contact me.

26. I have severe fibromyalgia, connective tissue disease and a spinal cord injury in my neck area. My pain is constant. I require daily pain medication therapy in order to have any function and quality of life. Prior to my illness, I was a practicing RN, and I loved my career. Currently, I have a doctor who is willing to treat my pain and also respects my dignity as a human being. I am lucky. I know my doctor could be pressured to stop treating my pain at any time. Prior to each appointment, I wonder if this will be the day my doctor dumps me.

    There is judgment and stigma labeling chronic pain patients as addicts. There is legitimate use of pain medications as medical therapy when other options have been exhausted. Some pain conditions are not curable. Pain is hard to bear. I struggle with suicidal thoughts. Each day I have to decide if I can get through another day of pain. My suicidal ideation is not depression-driven, it is pain-driven. Society does not offer any compassion for chronic illness and pain.

    Chronic pain is different from acute pain. Try to imagine what it would be like to have pain every moment of every day. I describe pain in terms of sound. Sometimes the pain is low volume in the background and there is mild distraction. Sometimes the volume of the pain intensifies, amplifies and radiates, overwhelming the senses and making it impossible to function. Sometimes the burning pain feels like the body is on fire. Pain medications can lower the volume of pain and allow functionality, thereby improving quality of life. Other modes of complementary pain therapies can be of some benefit but are expensive and often not covered by insurance.

    I have been victimized by pain management physicians who prefer to do invasive and expensive procedures and spinal injections. One doctor wanted to do an epidural injection on my lower spine, which did not hurt. Luckily, my insurance company denied the procedure because it did not address my primary complaint which was neck pain. I say luckily, because if the procedure had been approved and I declined to follow-thru, I would have been labeled non-compliant and likely would have been discharged from the clinic without further pain treatment. I reported the incident to my primary care doctor, so he took over my care. I am no longer able to work and financially my life has had a downturn.

27. I was diagnosed with a rare placement of Endometriosis at age 15 after coughing up blood intermittently for 2 years with no known cause. They finally found that in my short years since becoming a woman the endo spread to my colon, diaphragm, liver, and up into my right lung. After 19 isolated ICU stays thinking I had TB or some form of lung disease, they tracked it to my period and we ended up finally finding it by scope in 2007. From then on out I have had 3 collapses, 5 pulmonary embolisms (from the countless hormone treatments), and one DVT. Just this last year after a rough pregnancy with my son who was born early at 3 pounds 2 ounces I ended up coughing up 55 CCs of blood within an hour, and they rushed me to the ER (in May 2020 so Covid was popping).

    I meet with a cardiothoracic surgeon who thinks the glassy stuff in my lungs is either my endo getting so bad we can see it on a CAT scan, or it’s Covid because the pneumonia that goes along with it looks similar. I spent 3 days in the ICU fighting with them to just give me the allotted pain meds I get at home, let alone a stronger med because I was obviously in a flare and breaking my ribs I was coughing so hard. Fast forward to my Covid test coming back negative and then planning an open thoracotomy because they finally see where they should attack, and I’m scheduled for a right upper lobectomy. I am told they try not to do it invasively like that anymore, but since he will have to stick his fingers in and feel around for the margins they will be sure to make sure I’m comfortable because the first few weeks will be rough.

    I already had to have major surgery and do the hospital healing alone. The nurses were in there the bare minimum to avoid Covid and would speak to me by phone if they could get away with it. They always just rushed in and told me to hit my button for the pain. My hair got so knotted we shaved it the day I left the hospital. I was there for 3 days and the last day before leaving they lowered my pain meds to a LOWER dose than I was on before the surgery just to keep up with my normal pain. I tried to explain to the nurses about tolerance and being a pharmacy student before parenthood I thought I could get my thoughts across professionally enough to get them to see I wasn’t medication seeking. I was just used to the meds I was on, treating my normal pain, not the pain from opening me up like a lobster with 3 already broken ribs and having 2 chest tubes still in, draining the funk out and pushing on all those surrounding tissues and nerves.

    They literally wheeled me to my husband’s care and handed him the discharge instructions – didn’t even ask him if he had questions about the remaining tubes or follow up care for my bandages, or when the nurse would be there. They actually forgot my heart monitor was on and then we had to go back from halfway home when my chest started beeping and I called them to see what was up. Fast forward to being home 11 hours post-op and I can’t move or breathe and I end up in the emergency room. Surgeon calls the nurse and says I can’t be in that much pain. He was not doing his homework, and just assumed I was an opiate-naive patient. I relay to the nurse to call him back and check my medical history: I’ve been on the med at this dose 4 times a day for almost a year, and my pain was still so bad I decided removing my lung would help me care for my family more than the meds. It was like all common sense went out the window. The nurse refused to bother him again and gave me an IV since I hadn’t even drank water from my chest pain since I left the hospital.

    I don’t know what to do anymore. They see the proof and say things like, “I’m such a warrior and they couldn’t live with this type of debilitating pain with a 9 month old, and a 5 and 6 year old. They say I’m inspiring but they question my honesty when I am telling them I can’t deal with this pain. They call all of us strong until we can’t be anymore, and they see how many chronic pain sufferers just give up by killing themselves by their own hand, or by seeking help on the streets or in the bottle.

    These doctors are afraid to uphold their Hippocratic Oath because they hear all these horror stories of young doctors losing their licenses before the ink had dried for overprescribing, when that story is just a lie. I do believe there was a time when maybe some doctors were a little lax, but why does that have to mean I don’t deserve a quality of life, or my husband, or our kids, our dogs, or the houseplants, at that! I can’t even keep up with all that sometimes because I have been up for 4 straight nights falling asleep crying into a cooling bathtub just praying for a few moments of peace.

    When they compare medication to a crutch it makes me laugh! What is a crutch for? To help you stand or walk. It’s not going to fix your leg, it’s there to aid you while you do the healing – if there’s healing that can be done.

28. I had a work related injury for over 15 years. During that time I went to pain management, following all the rules, and continued to work for 5 more years in my profession. I was medically deemed unable to continue in that field due to sleep apnea. For 7 years I applied for and was denied Social Security Disability and told to find other work, at which point I started out making much less than before. Still continued my pain management until this week. John Q. Law charged my pain doctor with over-prescribing meds and he closed his practice. All of us are now discharged and receiving our records. And my family doctor won’t prescribe the pain meds I’ve been on for years, although he does prescribe to his other patients. I run out tomorrow with nowhere to turn.

29. I have been dealing with a progressive disease for almost 20 years. I have a congenital heart condition that interacts with biologics and some other possible treatments for my AS and psoriatic arthritis also have been told recently I need to do some testing because they believe I also have ulcerative colitis.

    2 years ago I moved to Lane county, Oregon. I was forced to taper down over half of the quantity/dosage I was on. I have been miserable for the past 2 years. Prior to moving I was on a great treatment plan, I was still having daily pain and had flare ups, but it was overall manageable with the pain medication. I have had days where I think, “I just can’t do this anymore”.

    I see my kids and think how unfair it is to them… they nor I asked for my body to become so sick and disabled. I didn’t wake up one day and say, “You know what sounds great… having my spine fuse together slowly on its own, causing excruciating pain any time I try to turn, bend, stretch, tie my kids’ shoes, etc. Oh and for kicks and giggles let’s have my hips, pelvis, feet, hands, neck and every other bone ache, throb, crack, freeze up, heat up and swell, and let’s add that charley horse sensation come and go up and down my legs. Ohhh, but don’t forget to add the funky patchy goosebumps up and down my legs with that horrible numb, tingling and burning sensation. But don’t forget to add some stomach/intestinal issues that just cause me to sit on the toilet crying in pain. Oh, hey, that’s right, don’t forget the hemiplegic migraines. You know, being born with a heart condition and having several open heart surgeries, cardiac caths and stents”.

    I thought like many people, that when I grew up I would get married and have children and have a good life. yes, my life is good. I love my kids and in all honestly if it weren’t for my kids, I would have given up a long time ago. They give me a reason to fight and to push myself each day. What breaks my heart is there are medications out there that can take my pain away just enough so I can focus on life, on my kids and my family and have a better quality of life. I had a glimpse of that 2 years ago. I will keep fighting…

    I am permanently disabled. My condition will just keep progressing, nothing can be done o slow it down for me. The few medications that would not compromise my heart? My liver did not react well to them and I was pulled off. I have tried everything: injections, otc, therapy, spinal injections, therapies of all different kinds, acupuncture, chiropractor (which actually damaged my neck and back worse, causing more problems).

    I am now 42 years old and am one of a few oldest living/surviving people with my heart condition. Many doctors say “It’s all about giving you a good quality of life and controlling the pain.” Yet, they limit me. I know the right meds, the right dose and combo, I was on it over 2 years ago.

    Each day I wake up just trying to make it through. I’m sick of being in pain, I am sick of telling my kids “not today”, because the pain is so bad. I try to hide it from them, but they can see it. The hardest thing is having my 10 year old son have to assist me walking, or standing… It’s not time for them to do this… they are still too young, and so am I.

    I need better pain treatment so I can be in less pain each day and give my kids the mom they deserve.

    I’m sick of my pain and diseases taking from my kids, but most of all I am pissed because IT DOESN’T HAVE TO BE THIS WAY… Doctors, CDC, government – need to STOP punishing the pain patients. I pray God will open their minds and hearts to see we are not the problem.

30. I have had 3 back surgeries on top of a spinal birth defect which affects my entire spinal column. I have experienced pain my entire life. Since January 2019 I have been jerked around by the pharmacies, the insurance company and I’ve seen 6 different doctors in 20 months; I am now only on a fraction of the pain meds (prior to January 2019 the pain meds I was on was working perfectly). I have over 1/3 of my spine fused with rods, wires, screws… I am in constant pain that affects my daily life.

    I literally have zero say in what my doctor prescribes me. If I beg him to please not decrease my meds, he totally avoids my pleading and tells me I have to come back in 2 weeks to get more shots in my back… If I do not participate in those shots, shots that literally know NOTHING about; I do not know what they are. I do not know if they are FDA approved. I do not know the risks, I do not know the long term risks… I do not think the doctors care as long as they get paid.

    I have been over-billed, I’ve had to do expensive testing that I never, not once, got the results of. I am ruining my stomach with Arthritis BC Powders and other OTC medicine that causes me to vomit and feel sick to my stomach… None of the options I have work well and the long term effects are MUCH worse than the opiate medicine that DOES work. I am So. Sick of being labeled with the title of Opioid Use Disorder. I do not like labels. Everyone has a label for this that and the other. I am not a mental patient. I am not sick. I do not have any “Disorders” or “Diseases”.

    I am simply a 40 year old woman, with a family of 4. I have been on disability for 10 years. Surely that means something when standing before a medical doctor… I am a woman, desperate, that seeks functional pain relief and nothing more. My dad is being jerked around and he is 70 years old and has back issues from injuries and surgeries and arthritis and just old age.

    Everyone should have the right to pain relief so that they can function in life and simply participate in life. I feel like “pain clinics” and the anesthesiologist doctors see $$$ pushing these injections that we as pain patients are pushed and forced into if we want to keep the tiny amount of medicine we get. It’s wrong to be “forced” to do things that you do not want to do just so you can get a tiny amount of medicine.

    I have never bought or sold any illegal drugs… BUT within the past 20 months I have seriously considered seeking out these streets rats to purchase something, anything, to relieve a little pain so I can function. I’ve considered that and I have began to wonder what the future holds for chronic pain patients. I believe the real statistics of those that have gone from functioning in society with pain medicine to seeking out illegal drugs (which is what this opiate crisis thing is about to start with, to prevent exactly what is about to happen) and those that have or will commit suicide will be much greater than those that overdosed from opiates that they bought on the street. I do not believe the overdoses have gone up because of LEGAL prescription medication… I do not believe that is the problem… The problem is NOT the Chronic Pain Patients… because those that have an actual real need are not the ones that are selling those drugs to begin with.

31. This under prescribing needs to stop. Some people on long term opioid therapy develop a tolerance and need to be increased not decreased. We need to speak to our congressman and demand fair treatment.

32. Without pain medication, I could not funtion at all. A surgeon permanently damaged a nerve root in my neck… woke up in level nine pain. I was 50 years old and had never taken pain medication. I even detoxed once only to find the pain was till there and literally unbearable. Some kinds of pain take away your entire life. I have a family, children, grandchildren. I have done brain re-wiring for pain, and deep meditation, as well as other modalities. I am not an addict and for some fortunate reason have never needed to up my dose. Most of the time I am still in bed due to neck immobility, now at 65. Many people would rather take their own lives than live with unbearable pain. Many of the same people function well and do not abuse their pain meds. A good doctor should be able to discern those who abuse and those who really must have it. It should NEVER be the suffering patient who pays the price for this epidemic. NEVER

33. I couldn’t agree more with either one of you! I have been in chronic pain for 20 years. I have been on opioids for most of that time. My pain has spread to other area of my body. I’m to the point that I can’t stand it. However my dosage has never changed. I’m in desperate need of help.

34. Hi My name is Deborah Molitor. I am 56 years old and have had more surgeries than my age … and I have had 46 surgeries and over 300 Spinals and I can barely stand for 3 minutes. I wake up in excruciating Pain and go to bed the same way. I have had 28 LP shunts and 9 VP shunts. A few Doctors have told me I am in Hypertensive Heart Failure and Pulmonary Hypertension, and my diaphragm is 75% paralyzed. They were helping with the god-awful Pain until the CDC guidelines and just recently they put me on hospice care, and 3 weeks later they switched it to palliative care. I went to see a pain doc and I told him the red x my chart cuz of all the injections and he said to me oh shit that puts him in a hard place and he cut me off. No injections, no meds.

    I have the scans of my neck and back and most doctors say I am lucky to walk 3 feet. I’m writing to you in hopes someone reads my story cuz there is a lot more to tell. I’m just weak and now on palliative care. Please help us all.

35. I have been living with Chronic Pain for at least 20 years. Have had 2 lower back surgeries with BAK rods implanted, broke my neck, have a fusion and plate, and now they want to do another surgery as another disk is herniated. Can’t have any more surgerys as I have Emphysema, 1 lung partially collapsed and 1 side of heart no longer pumping – doctor has said I won’t make it through surgery. I have Scheuermann’s Kyphosis in my spine, Thoracic area spine is collapsed and twisted. Need a new back brace. I now go to a pain clinic for my meds, get injections that don’t work, meds that don’t work. No life, just existing.

36. I have had two spinal fusions and a broken L2. Fused from L2 to S1. Chronic sciatic pain in both legs. I live in constant pain. The pain management doctor I had left the state and I was left to find a new doctor. The only one I could find isn’t as good as my old one. The government needs to stay out of this. They have taken away all our rights as a patient. We suffer because of wrongdoings of others. Please this has to stop. Our quality of life has been taken away.

37. I’m going to the rally on October 7th. I’m going to be wheeled out from my handicapped van. I’ll have several helpers to make this happen. I’m not going to show a fake smile trying to hide my pain. I’ll show how I really feel every day so my suffering can be seen. I want to represent the people who can’t be there to show the suffering pain patients are enduring and the ones who couldn’t endure any longer. The treatment pain patients are living and dying with is inhumane. The real doctors wanting to take care of the ill is not a crime. The government creating legislation and programs not in the best interests of the people and harming them is a crime.

38. I had my first appt with my new pain doc. I was out of the US for 7 years, and my how things have changed. Came back to the States, after being in pain management in another country, and I’m ready to go back already. No meds, wants to do injections, and MAYBE down the line some med therapy. Been cut off cold. I have no idea how they can do that, and why legislators are deciding what’s best for peoples’ treatments.

39. I have chronic migraines and receive a very small number of pain killers per month to take as needed. Half the time, they are sufficient. The other half they are not, and I cannot function: I vomit, I can’t see, the pain is searing, and I have to miss work. My neurologist flat out said she is AFRAID to give me a few more despite my being on them for six years (and on a benzodiazepine for 12 years) with zero issues or dose increases. I don’t drink or smoke. I just want to be able to control my pain and function more of the time. I’m truly sorry that pain killers have harmed so many people, but I am not one of them and resent being punished for the difficulties of others.

40. I had a knee replacement done and the doctor left medical gauze in it. It was in there for a year and it got HORRIBLY infected. It took over 30 surgeries to fix and ultimately had to be cut off. Needless to say A LOT OF PAIN is involved. The bone is shaped like a knife at the end which is poking into my bone and causing neuroma problems. I am always treated like a person who uses pain meds for fun when I have real pain!!! We shouldn’t be punished for the people who do misuse them!!!

41. I was just told by a pain doctor that he would not write me a script for pain medication. This is in spite of the fact that I am almost bed bound with it and without it I probably will not be able to even get to the bathroom. It is ridiculous. I know all about the “opioid crisis” but damn. Those of us who live with chronic pain (35 years and counting) need a little more care and understanding. First it takes forever to get in to see someone, then they refuse to help you and you have to start over. The system is broken. Even those who work in Pain Management have no heart when it comes to the management of pain.

42. I’ve suffered for over 35 years (most of my adult life) from migraines, back pain, fibromyalgia, chronic pain all over my body even neuropathy. I’m a senior now but my pain really started when I was a child having me miss a whole year of school and haven’t been right since.

43. I was in a car accident that was not my fault and it destroyed my back. I’ve had many surgeries since then to repair my back. My surgeons said they have tried all they can to make me better. They said the only thing that can be done is to control the pain. Life seemed to be going okay with a certain medicine to control my pain. Ever since this new twist in the war on drugs, I’m beyond lucky to find a doctor who is willing to help with writing a prescription for my medicine and a pharmacy that will accept it. Even with all of the documentation from my medical journey showing my need for pain control, I’m turned down. My last pharmacy let go of all of the pain patients without any warning or explanation. Even if the patient’s medications were due to be filled they were turned away. There are plenty of doctors who have joined the government-paying program pushing Buprenorphine and epidural shots. The medication made me higher than a kite but didn’t do anything for my pain. I have already tried the shots which just made me worse, and my surgeons were against me getting more. Because I won’t accept something that doesn’t help me I too am being punished. Life is terrible now as I’m trying to get by with what little of the medicine that does help that I’ve been able to get. I’m not able to walk now without enough medication and I don’t believe I can stand the pain much longer.

44. I was diagnosed with esophageal spasms. They are equivalent to the pain of an actual heart attack. The doctors refused to give me pain meds (even though I was monitored and in the hospital) because I wasn’t actually dying. No history of pain med abuse EVER! I had pain as severe as an actual heart attack! Same pain! No pain meds! I had to scream all night and beg for help … no help was there because they were worried for their license. I’m scared now to ever go to the hospital ever again because they are not sympathetic to pain and treating it. I’d rather die than go to the ER for pain relief anymore. That’s sad. I’d rather kill myself than go to the ER to get relief from pain.

45. I started having odd pain in 1988. The pain moved from area to area. Was officially diagnosed with fibromyalgia in 1992. I continued to work in spite of bad pain days. I lived on Ibuprofen and Acetaminophen. Various doctors gave me vioxx and other treatments. Physical therapy was a constant in my life. In 1997 I hurt my back in a work related fall. More pain issues. Strained muscles and other diagnoses. I finally got an MRI, after my dear sweet mother decided to advocate for her daughter. Mind you I am now 55 years old. L5-S1 disc bulge. Put on permanent light duty. In the healthcare industry there is no such thing. You are always put in position of lifting, pulling, pushing, bending, stooping and reaching. Fast forward to 2015.

    Shoulder pain was extremely high one day after carrying a gallon jug of milk. My doctor put me on pain meds for 5 days as PRN and get MRI of my neck. Yup, spinal stenosis C4-5. Neurosurgeon said I needed surgery. Heck no! My doctors at my prior clinic all knew me. I was not a narc taker. Do PT and whatever. Well insurance comes from the county. I wanted to keep seeing my old doctor. That was no longer an option. Start with a new doctor and a new sober journey from alcohol. My last drink was 2014. So new doctor and this crisis put me at a disadvantage of automatic pain med seeker. Anxiety meds taken away as well. I had to have my hubby come with to advocate for me. I now have arthritis in SI joints, hips shoulders and left ankle. I could not even get lidocaine patches for pain. Well now I have CRPS in my left foot from dropping a 16 pound drill on it.

    I want to now see a pain management doctor. But for the second time, I’m being referred to the pain rehab program. Tried it once, didn’t work. I’m only allowed 10 percocet for 20 doses per year, then 10 tramadol. Same deal. If I have a bad pain day. I am afraid to take a med. What if the recovering alcoholic decides to like pain meds. To be clear, I hate taking them. I can’t function on them. I won’t go to meetings, drive or anything where I have to think. I have had to earn the respect of every doctor I’ve had to see since transferring to this clinic system.

    Now in November I get to go up in front of a team of psychologist people and whoever else. They told me if I was on any narcs to wean off of them!? Really!!! That’s so unfair. I told the gal, I only take when I need to. We are treated poorly. I am considered a risk because of my honesty with my past drinking problem. I have repeatedly told doctors I refuse to give up my sobriety on meds that make me dumb.

46. I’ve had a life of pain but what I’d call normally “bad” pain, for what’s it’s worth.

    I was born with a soft cleft palate and had more than the average surgeries to fix my palate, sinus cavity, and ears by the time I was five. At fourteen, severe migraines and seizure activity joined my days.

    As I aged, more pain and surgeries came my way, topping out at twenty-five, a relatively low number compared to my husbands thirty-nine, but the last one – my right knee replacement – gave me a present I wasn’t expecting, Complex Regional Pain Syndrome, Type 2 or Causalgia.

    And that’s when I discovered pain on an entirely different level. How is that possible? The odds.

    I’m what you call the exception to the rule.

    I only had a 1 in 100,000 chance to be born with a congenital soft cleft palate, and I was.

    There is only 3% of the population of the entire world who are allergic to Nitrile, and I am one of them.

    I had a 6% chance to develop hormonally-related grand-mal seizure and migraines, and I did.

    And finally, at forty-eight years old, I could no longer walk. Osteoarthritis had destroyed my knee and I could no longer function … as a pharmacy manager, a caregiver, or wife.

    So I finally caved and signed on the dotted line and had surgery number 25 in my life – a total knee replacement on my right knee and became one of 2-5% in the world who develop CRPS or Complex Regional Pain Syndrome.

    Story of my life, right?

    To continue on with the tale, after the onset of CRPS, I was told that the pain was caused by “pulled muscles”, “weak tendons”, “too much therapy”, “lack of therapy”, “imagined pain”, and on and on. I saw provider after provider, year after year.

    I was diagnosed with bulging discs, inflamed joints, ankylosing spondylitis, and of, course, nothing, until finally, the truth was discovered, and a neurologist diagnosed me with Lumbosacral Plexopathy with a severed plexus, and a referred pain specialist confirmed his suspicions that I had the most painful disease on the planet, Complex Regional Pain Syndrome, Type 2 or Causalgia, a condition that has been around since the Civil War.

    During this time frame, I realized there was no possibility of a cure and little to no chance for remission.

    As time progressed, my doctors attempted to control my pain which stayed at a level of 42 on the McGill Pain Scale. If I was to try to use the Mankoski Pain Scale for Pain (1 to 10), it would be a 8-9, leaning toward 9 most days and 10 on very bad days.

    After six months, and making no headway in pain control, a recommendation for a DRG SCS through Abbott-St. Jude was offered and taken. The trial offered 85-90% pain relief, whereas the permanent implantation only provided 20-25% of that.

    Various other treatment options were pursued, nerve medications (anti-seizure and newer nerve pain medications) either failed or produced side effects such as lowering the seizure threshold and causing seizures, or migraine headaches. Newer CRPS therapies such as Ketamine were nixed due to pre-existing conditions.

    The only therapy left to treat the pain I suffered was opioids, the one type of drug I had always avoided through all of the pain I had endured except for my migraines.

    I didn’t want to admit that I needed the drugs I abhorred. In fact, I told myself I could take the intense pain. After all, wasn’t I the one who had taken on 54 hours worth of labor without taking a dip of an opioid? Hadn’t I spent the last fifteen years standing for twelve hours a day on a destroyed knee using nothing but anti-inflammatories and a smile?

    But eventually, I realized I couldn’t live with non-stop agony. I needed relief and the only way I could find it was with opioids. So I yielded.

    The regimen wasn’t perfect and it didn’t give me complete relief but it helped. I wasn’t in tears all the time. In fact, I could at least lift my head. My life wasn’t completely over. I still had the battle of a lifetime ahead of me, but every step, every breath I took, wasn’t backwards.

    Then I realized I’d never work again as a pharmacist. I’d never drive again for more than a mile or two. I’d never be able to balance my checking account or write a book in a month. My life as I knew it was over.

    The surgery that was supposed to restore my life … had destroyed it as I knew it. And I lost it. I screamed, cried, denied, laughed, cried over and over again, until I realized I needed to build a new life as a disabled person with CRPS and Chronic Pain.

    Since then I have faced many challenges. My pain provider has attempted multiple times to reduce my dosages due to statewide DEA pressure when my pain hasn’t been managed to our goal of 50%. My goal at the maximum has reached 40% with the SCS. I have been involuntarily had nerve therapy re-attempted that has caused night seizures (grand-mal) as was listed in my Chart’s Reaction Profile.

    The COVID-19 Pandemic has caused my DRG SCS adjustments to halt so I have been in maintenance mode with the stimulator. After a few months of virtual appointments, it’s back to driving 3 hours one way each month to my pain management provider for very little but her to ask what my pain level is and to try to get me to go lower on my opioid dose which I voluntarily did two months ago. (She was happier than a coyote in a hen house.)

    My plans? I’m tired of people like my husband and me being the villains and the criminals when all we want is our pain controlled and to live productive, quality lives. I spent twenty-one years as a pharmacist fighting doctors and the DEA to make sure addicts didn’t get the drugs and chronic patients did, and now I’m known as a disabled, chronic patient. I’m still a licensed pharmacist and I know how it works on both sides of the fence, and I’m using that knowledge against them.

    I’ve started a national petition, started talking to legislators in Wyoming and Washington D.C., and working on making everyone being stripped of their rights to life, liberty, and the pursuit of happiness as the disabled and elderly suffering from Chronic Pain and on opioids.

    I won’t stop until big brother gets the message. Just because we take opioids to have a halfway decent life, albeit not necessarily successful and working, but tolerable, does NOT make us criminals or addicts.

    It’s time for our rights to be protected instead of trampled upon.

47. I have degenerative disc disease, which I’m sure a lot of you know about but for those that do not, it is in part the discs between the vertebrae of the spinal column deteriorate or break down. This causes pain in my back but the leg pain is like nothing else. I describe it as someone trying to dig out of my femur with a dull spoon. Because of the leg weakness I’m not able to walk very well or stand for more than a few minutes. Orthopedic surgeons say they can’t help and have referred me to a neurologist… I feel like they all think I’m crazy or pill seeking. I have had the same doctor/PA for 8 years and the same pharmacy. I’ve never asked for my meds early or “lost my prescriptions”. I’d rather not be on any narcotics at all, while I do have a very high tolerance naturally I thankfully don’t get high or messed up, I just don’t like having things like this in my body. I routinely ask if they have any new recommendations that are non-narcotic because I’m open to new meds, therapies or treatments that might help.

    It seems that I am faring a bit better than most on here when it comes to my medications being filled, however I have been taken off or lowered so far that any quality of life I did have is slowly slipping away.

    I’m 40 years old and have a 17 year old son, it breaks my heart that I haven’t been able to do a lot of things that I wanted to do with him growing up. That is time we only had once in our lives and thinking about that just makes me feel like a horrible mother.

    I’m not sure what I’ll do if the neurologist says that he can’t help me either. I’m not sure how much longer I can handle living like this.

    I agree with what a lot of you have said about the fact that our government needs to remember that while fighting the war on drugs is important and I agree with it, that doesn’t mean that some of us don’t still need those drugs. I’m willing to do whatever is requested of me to get treatments that help. Wishing you all well, Blessed Be )O(

48. My name is Renee and I live in Wyoming. My story with pain is long and varied but intense. Needless to say, I have what we in the Pain community call a “high pain tolerance.” In medical terms, it simply means I have more, many more, pain receptors and can bear a lot of pain before losing consciousness. Women have this feature versus men but for me, it’s always been a blessing.

    It meant I could bear surgery after surgery, a 54-hour long brutal labor, untreatable migraines since teenage years, and the intractable, unbearable nerve, muscular, and joint pain of lumbar-sacral plexopathy following a rushed total knee replacement surgery and its resulting development of Complex Regional Pain Syndrome, type 2, or what it’s otherwise known as RSD or Causalgia — a disease which has been around since the Civil War and remains to this day incurable and for all rights and purposes remains untestable to this day.

    I live each day in agony from one pain pill to the next, afraid that the next time I visit my pain specialist that I will be denied care or the medication I require to live a productive and useful life.

    I wake up unable to catch my breath with the pain and wonder if my husband is feeling worse than I am and hear him in the bathroom before I realize his chronic pain has him by the throat while mine is simply got me immobile.

    It’s hard to believe that at times my pain is a blessing compared to others but that is the case. There are others who do suffer more.

    I’ve been told this pain that cramps my body and contorts me into an old woman before my time is:
    1. In my head
    2. A passing thing
    3. Is surgery related
    4. Is rehab related
    5. Will take time
    6. Is my fault
    7. Is the surgeon’s fault
    8. Is nobody’s fault
    9. Is God’s fault
    10. Is society’s fault

    In fact, it took nine providers over the entire state and multiple procedures and tests to discover where and what the pain was even caused by — COMPLEX REGIONAL PAIN SYNDROME — the most painful disease known to man — more painful than having a limb amputated without anesthesia. The highest ranking pain on the McGill Pain Scale.
    Did I want to give up? Yes. Did I want to put a bullet in my head? Yes. Did I want revenge? Yes. Did I scream, cry, beat at the pillow, walls, and sky? Of course! Did it change anything? No.

    So what did I do? I grieved for a life lost and built a new one. One that would never stop learning and NEVER, ever, give up the fight for a good one.

    And if that means fighting the entire world for it, so be it.

49. My pain story is similar to so many others. That alone should scare the average American. How many of us are there? This medical field, yes it is an actual field of medicine, devoted just for pain.

    I’ve been told I needed surgery! Then told it’s inoperable! I didn’t like having injections, I actually have a fear a needles, but I would do ANYTHING my doctor said to stop this pain. Finally, after 7 long years I was told I needed a pain pump. The catheter is surgically placed in my lower spine, the pump is in a sack under my skin right near my hip bone. At first I thought this was a miracle, I can walk, sit, stand, I can move with less pain. Yet I still had migraines and pain that would shoot down my right arm. They forgot to tell me, I couldn’t have anymore MRI’s, but I’m severely allergic to the dye used in CAT or CT scans. I would need to rely on xrays and CT scan without dye for any future diagnostic purposes. I possibly had MS, but without an MRI, we couldn’t really be sure. The surgeon decided we would go ahead and treat as if positive for MS. Then the pain grew steadily worse, the pump was increased every visit! Which was every 3 months.

    Finally after a year the surgeon said I needed surgery on my neck, a cervical disc fusion, right away, or risk “breaking my neck with a simple sneeze”. I was told this in February, flu season, where I live! My family was gathered around me, my children urged me to please have the surgery. But I was scared, already my pain pump was at a very high dose and it was only 1 year after implant! I was given oral meds to help control the neck pain. The surgery was scheduled, the office called to arrange pre-op bloodwork and chest xray. Pre-op was complete, I received the date for my surgery. I was scared, I went to see the surgeon in his office, I said, I don’t want to do this. That’s fine, I just can’t prescribe the oral pain med any longer. After a week, being physically ill on top of the pain I was in, I relented and proceeded to have this “life-saving” surgery.

    I woke up after surgery, I knew something was wrong, very wrong! Apparently 4 days had passed and the surgeon decided to go through the back of my neck even though it has been proven that going through the front is less painful for the patient. Instead of increasing my oral pain after surgery, as we had discussed prior to operation, my meds were DECREASED! I was literally driven out of my mind from pain! The doctor brought my family in and said I needed a psych eval and should be committed ASAP. Thankfully my daughter refused to sign anything. After seeing a psychiatrist in the hospital, all oral meds were discontinued and pain med was increased. Within 24 hours, I “woke up” or so I had thought.

    I have been fighting my pain ever since 2009. My neck took several months to heal. A CT scan taken post-op by 2 years showed 3 surgical screws penetrating my central nerve. But being placed in “pain management because of new federal regulations” has just steadily led to more incompetence in actual patient care! This “regulation” has steadily caused more pain for me by forcing me to see someone that knows nothing about pain pumps or the management of the unit. I was “accidentally overdosed”, and under-medicated. I’ve been told “the pump takes care of all your pain, therefore you don’t need an oral med”. My favorite one, “it’s all in your head” sent me searching for a new doctor.

    I was advised to sue for malpractice for my neck. After learning this doctor had done numerous surgeries on patients that he was NOT qualified for performing, I decided I would file a lawsuit. I learned that it is standard practice for surgeon offices to perform more than one procedure per patient in order to keep their spot in an office. The doctor that placed my pump screens patients to search for reasons to perform second procedures! Most surgical groups require a certain number of procedures per month from its members. My doctor claimed he was forced to do this to stay in the group. They aren’t the only ones! The hospitals demand a doctor perform a number of procedures to keep their rights and privileges in that hospital! But that’s another problem.

    I was able to file a lawsuit, but finding a new doctor? I’m still dealing with getting the medication I need to live a normal life. Searching for a doctor to prescribe the medication was not easy with the regulations and new laws popping up each year, or every session of congress in Washington DC! But that is in itself classed as “doctor-seeking drug-seeking behavior”. I’ve even had a pharmacist tell me I couldn’t have my medication! A pharmacist!

    Now 11 years post pump, I was sent from doctor’s office to doctor’s office trying to get my pump filled. In the past 3 years I’ve had 3 different doctors! One was forced out of practice because of being reported by a pharmacy for prescribing “too many pain medications”. The second was nice but she left her office. I was forced to see the only person left in pain management there. She said she simply did NOT believe my diagnosis, that I am simply one of thousands that have been caught up in the opioid crisis. She attended the government sponsored seminar on dealing with addicted patients, and she would wean me off my meds and send me to a third doctor for pump refills only. I couldn’t believe this was happening to me! I pointed out the CT scan of my neck, the reports after reports of the collapsing discs in my spine! Lies, she claimed! How could I possibly fake a CT scan? The xrays? They weren’t mine, no one could actually be walking if this was their spine! What about my heart attack after the doctor stopped my meds IN THE HOSPITAL?

    After having my pump replaced I was there to get the battery changed, but the unit would not restart. I was in and out the same day, however the anesthesia caused severe vomiting several hours later. I was admitted through the emergency room, the doctor was called up to my floor because the pump apparently shut itself off, causing the severe pain, plus the reaction to anesthesia. The doctor stopped all of my pain meds, refused even my oral dose! I “signed myself out”. I called my pain management and was given an appointment right away the next morning. My doctor was able to restart my pump and that night I was rushed in to the emergency room with a heart attack. The doctor who placed my stent, heard my story and ordered that I be given my oral meds every 4 hours plus a morphine IV! He said that although he could not go on record blaming the doctor that discontinued my pain meds, the stopping “certainly HELPED in causing the cardiac infraction”. Was that “all in my head”?? Yes! I went to the third doctor to have my pump filled. You’re just an addict, he said! Even as he admitted he still had NOT even looked at my record!! He agreed to help ween me off the morphine so I could have the pump out, then left his practice, without referring me anywhere!

    My pump ran dry and I am now going through withdrawal, but thank God my new doctor is here! He is helping me every step of the way. I’m still frightened. I still get on my knees every night and thank God for my doctor and ask that he be able to continue treating me!

    I am lucky I found a good doctor. It only took 20-plus years and 5 different doctors, in 2 states, but I know I am lucky. I know there are others like me, that are the walking wounded right here in our homes! It has to stop!

50. Such sad stories I am so sad no one cares to change things. Especially since they are legalizing so many street drugs for fun and leave people screaming in pain. It’s so disgusting go to CA governor Newsom will give you mushrooms, pot, or decriminalize your arrests for narcotics. But try to get real treatment and you’re a junkie! WOW where is the compassion?