Share Your Pain Story

999 Replies to “Share Your Pain Story”

1. I have suffered for years from failed anterior/posterior fusion. Doc ground out my spine from tailbone to L1. He stapled the nerves to remaining bone, put a cadaver bone in, though he used nothing to stabilize what was done. He then flipped me over, refused to wait for opening surgeon, he then proceeded to cut the femoral nerve, the main artery to my heart I bleed out. My esophagus, larynx, trachea were damaged after being intubated. I received several transfusions that was not my blood. Found out later District Memorial Blood Bank gave out HIV-infected donated blood.

   My artery was repaired concave so I don’t have proper blood flow to my heart. My throat has scar tissue from damage. It is painful to swallow, I choke, I had to learn how to eat, drink, speak, all over. Then after car accident my neck was broken from base of my skull to C7. Again from back surgeries the scar tissue is bad but both surgeries have left me with stenosis, osteoarthritis osteoporosis, I am severely anemic, causing Brittle Bone disease, RA, sciatic groin burning into thigh, new fractures in cervical where I turn my head, have sharp pain, and you can actually see joint movement. I’ve had to have several spine surgeries to fix failed fusion. The graft fractured in eight places, also leaving me to get new fractures.

   The cutbacks have caused severe to unbearable pain to come back leading to my recent injury. I fell, I was knocked out, concussion. I had a CT scan showing a tear in lining of my brain, two hematomas, frontal lobe injury. My head burns. The pain in itself makes me nauseous but the burning hotness and tremors I get soaked blurred vision.

   Because of the most incredible doctor, I had quality of life, I gave back to the community, I loved my life. I drove school bus 7 1/2 years. My employer was fully aware as were my kids’ parents. They requested me every year, I was able to get my commercial license with tanker and hazmat endorsements. Not only did I take care of my own truck, I loaded my trailer and equipment. I drove dumptruck all over the city to pick up loads, to dump loads, I helped pave roads, airport parking lots. I had a life.

   Then my doctor gave me a choice – to have life or live as a cripple. I was drug tested at every job, even where I was hired to drive city bus.

   Not everyone is an addict as they portray us. We go on to be productive, have living families. But what has been done to me with these severe cutbacks has not only sent me to the ER with chest pains, heart issues, it caused my recent head injury. I’ve lost 47 pounds, I’ve aged 20 years, I don’t spend time with my kids, grandkids.

   These cutbacks have cost me more than anyone can possibly imagine. I can’t work. I’m sorry – if you think for one minute disability is a life, think again.

   I know struggle with bills, groceries, I’ve had my landline shut off, with lifeline, my electric shut off. I have no reason to carry my head high. I’m a disgrace. I didn’t ask for this. It was a doctor that brought this on.

   Now I’m being punished because I want quality of my life, dignity to be proud of being here. After what was inflicted on me by a doctor. Read my records, quit judging me as an addict, I’m not. I’ve never abused or misused. I have followed all the rules. Except my wonderful incredible doctor of 12 years lost her license because she believed people have the right to live life to the best quality possible. She was ruined.

   My pain management doctor has left because the DEA came and took all patient files, telling him to cut back everything, no matter the consequences to these amazing doctors willing to help, you’re forcing their hands to stop helping patients. He left because he sees first-hand people being crippled by these cutbacks.

   No longer able to exercise, keep my body strong, I can’t even stand or walk without falling from return of all the horrible pain that was once under control.

2. I am not a pain patient, but my husband has had three back surgeries. He is currently recovering from a spinal fusion surgery. He had one last year, it failed, and it has been redone with new hardware. When he was discharged from the hospital, we were told to make sure to stay ahead of his pain. Call in plenty of time for refills and stay on schedule. The current laws prohibit him from getting more than [so many doses] at a time. That is only an eight-day supply. I have to call the doctor every week for refills. While the doctor is more than willing to submit the refills, it often takes time and we run into issues.

   One time the pharmacy was out. They could not transfer the prescription to another pharmacy. He waited all day in pain for the doctor to call it in to another pharmacy. Another time, he ran out. I was puzzled. I had been meticulous about his medicine schedule and had even written down each dose as he took it. When I went to get it filled, I was told he had to wait another day.

   He was in pain all day and that night until he could get it filled that next morning. He came up short again the next week. Too early to fill. I started counting the pills when I brought them home. He was being shorted and there was nothing I could do about it. After all, who would believe me?

   You are a stand-up, hardworking citizen until something happens and you need pain medicine. Suddenly, you can tell certain health care providers look at you differently. Even some workers at the pharmacy when you come in to get pain meds a day early according to their information give you that look. If we had been shorted on antibiotics or blood pressure medicine I could have spoken up, but I knew I wouldn’t get anywhere with this. We strategized about when it might be best to skip some doses.

   A surgery patient should not have to figure out when it might be best to do without pain medication. Has anyone else had issues with this? I am amazed that policy makers have not considered patient care. It seems they want it to look like they are doing something about the opioid crisis. It seems to me it hasn’t deterred drug abuse at all. Those that are abusing are still getting their drugs. It is the rest of us, law-abiding, hardworking, citizens that suffer. Where is the compassion for pain patients? It is appalling.

3. I do not want the government to control doctors that feel their patients need opioids to be able to live their life without being bedridden. I have bad discs in my back and I have to take a couple opioids a day to be able to get up and move around. I would not be able to if I wasn’t able to take the pills. Do I wish I didn’t have to take them? Absolutely, but I am not addicted because they don’t give me a high. What they do for me is lower my pain level from a 9 to about a 4-5 on a scale from 1-10. So please don’t take these away from the people that need them.

4. I have a disease called Arnold Chiari. I have a herniation of 17. I had decompression surgery in 2000 but with the herniation being so severe I continued having many symptoms after the surgery. I live with vertigo which comes with nausea and vomiting, blurry vision at times, terrible headaches from the herniation that Noyola a Demerol shot with sofrían helps me. I have trouble walking and with coordination of legs and hands.

   In 2008 I had an intense spinal cord surgery that lasted 12 hours. My spine gets very dry because my cerebral fluid doesn’t flow well. Any straining that I do brings on the headaches and vertigo. Just straining to go to the bathroom sets me into a 3 or 4 day flare up. I can’t even tell you the consequences that I pay if I cry too hard. I’ve been this way since I was 44. I am 67 this year.

   The first 9 years they controlled my pain with high doses of Gabapentin and Eladio and Diamox. After 9 years my body starting rejecting them and I had severe consequences and they switched me immediately to Percocet. After a while I was on low doses of Oxycodone fast relief and a baseline of OxyContin which is time released. I was able to let go of my wheel chair and my quality of life improved tremendously. For 14 years I was doing great and last year my husband retired and we moved from our state to another state.

   It has been a total nightmare here. Not only because they don’t know me but because their state laws are different here. I’m off the time release and am taking low doses of fast relief Oxycodone still being prescribed from my doctor in another state. I have palpitations all the time and have high blood pressure now because I have to suck up so much pain. They have told me they’re sorry but there is nothing they can do for me. It’s a terrible situation.

   Some days I just want to die because of the amount of pain I have live with. I have never been suicidal nor would I ever do that but I do ask God to take me. I am not an addict and in all the years I’ve used opioids have never had an overdose or have I ever felt high. It’s just not fair. I can’t walk more than 10 minutes and I can’t play with my grand kids anymore. I can do nothing nor do I have purpose any more. I’m sorry that there are people that abuse these meds but that’s not me and I am being punished. Will this ever change. I don’t know.

5. My pain started after the three tours I did during the Iraqi War. I was medically discharged from the service in 2006 and formally retired in 2010. I have full VA benefits and have been seeing the VA for 14 years now. My doctor tried exercise and physical therapy (note: don’t believe for one minute that organizations and insurance don’t limit your number of visits). Mine did, and while it was beneficial to an extent, the idea of limiting it to x-number of visits can be detrimental. Tried many types of drugs (Cymbalta/Percodan/Ibuprofen) but I either became tolerant to them, or the dosages needed to achieve the ideal effect became toxic. And for 5 years my care team and I coordinated to find the ideal combination of medication. I could not use steroids or nerve blocks due to high blood pressure and a heart attack in 2014 (stress induced but also arteriosclerosis).

   We finally found a combination of Gabapentin and Morphine that worked well and seemed very tolerable and it IS low dose – I must stress that. And for the last 8 years I have had a relatively comfortable quality of life. That was until the drug epidemic and governmental crackdowns on the use of Oxycodone/Hydrocodone/Morphine.

   I was quietly told I would have to submit to both blood and urinalysis to continue being prescribed this. I had no choice, and my care team suddenly made me feel like I was a drug addict!!! Calling my medication an “addiction”. I was angry and appalled, but I said nothing so to at least continue receiving my medication. I cannot begin to tell you how the VA constantly misplaced my script. I was on the phone to them reminding them that delays in my Morphine can lead to withdrawal which makes you feel ashamed, embarrassed, and just plain worthless (and in enormous pain). And despite my numerous calls and nearly resorting to begging my team to be consistent with my treatment, the VA was on the bandwagon (despite numerous pleas from the FDA and AMA to stop being so overreaching and respect the patient). “We have to combat addiction!” Umm I take my medicine meticulously, I submit to dehumanizing tests to satisfy their “studies”, and am continually called an addict. What is my crime again? What did I do wrong? I did what you asked, and what you pretty much ordered me to do?

   Well in 2021 my primary physician at my clinic retired. In doing so, he left a horrific mess and a literal gang of doctors who were quick to deride and criticize his “pain management” methodology. This man had DECADES of experience while the physician’s assistants that had replaced him weren’t even born when he became a doctor! So it seemed that the VA put “yes-men/yes-women” who would follow their mandate and immediately decry, “I won’t prescribe narcotics”! Even though many of the former doctor’s patients were well managed, and had been on them for MANY years. But now here we are, not in the middle of a drug epidemic, but a far FAR greater epidemic – and that is of paranoia, fear, and overreaching rules.

   So in frustration for the VA’s sudden draconian rules, I used my private insurance to get a referral to a local pain management clinic. I got processed, the kind nurse took my information and questionnaire in, and asked me to wait. Right off the bat, the doctor that was practicing at the clinic immediately chortled, “I don’t prescribe opiates”! Okay? But I at least wanted to know if there were alternatives? Perhaps new medication? Or perhaps new therapies? But instead, I got the standard/substandard “lecture” on why the VA set me up for failure. And he would not let me speak once. He told me I would be a quadriplegic by age 65 (I’m 54) and that I’m not interested in therapy. He offered the steroid blocks and I said I couldn’t do them, but immediately started (again dominating the conversation) telling my about my bad life choices, that it’s all about what “I” want and that I’m just seeking Morphine. And he has had this conversation with a lot of others, and how I refused treatment (he didn’t again let me explain), and that he could do nothing for me. That my Morphine and medication treatment was meaningless and my my memory is going. I know I know! This is hard to believe, but it is FAR more common for us recipients of narcotics to hear this demeaning, degrading, and disgusting diatribe about how WE are the bad ones, that I am wasting (insert doctor’s name here) time and that the script just keeps getting more and more humiliating by the year.

   For the record, I’ve been in war, I served my country in every war and campaign since 1994. I ask for nothing! And am grateful to my fellow Americans for their support of me in my time of need. I’ve been shot, stabbed, impaled, and I’ve broken close to as many bones as Evel Knievel. Yet this doctor in my hour of need and vulnerability made me feel like an addict, like I was worthless and not worth treating, and that I was a waste of his time, a waste to my society, and a drug seeker. I left. Even the nurse shook her head and told me, “I’m sorry”. She knew this doctor had done this before, but could not say anything to a doctor, lest she lose her job. I made it to my SUV, got in and broke down crying!!!

   Is this what we have become? Where due to the drug crisis we now are “scripted” to marginalize people who are on narcotics for their very quality of life? Are we the same addicts that are so over-reported on the news that the mania now is, “Oh you must be an addict”. I know this is full of emotion and I know it’s long, but I think it’s time as a nation we now have this conversation. How many lives are being torn apart by a paranoid, over-reaching, and senseless government who is marginalizing the very citizens who not only support it, but have defended it, made their lives in it, and only ask to simply be treated as a normal, decent human being that had a misfortune they did NOT ask for!!! This madness and insanity has to stop!!! Even the FDA, AMA, CDC, and many articles have regretted their overreaching actions and words and are trying to help control the damage that this epidemic has caused.

   In summary I have only this to say. We are NOT addicts, we ARE decent, honest people who are responsible, humanely, and diligently using our medications with responsibility to our neighbors, our fellow drivers, and ourselves. WE ARE NOT THE ENEMY!!! I say this with a heavy heart and tears in my eyes and I plead with any and all of you, to please help educate and remove the government and medically imposed stigma that profanes me and all my fellow pain sufferers. We do not ask for the removal of restrictions, we only ask that common sense, professional medical evaluations, and compassion be the guides to giving us a sense of dignity and purpose. Please, do what is right to combat drug misuse, but do not make it to where our people’s most vulnerable citizens consider illicit drugs, OTC medication abuse, and even suicide, due to their suffering.

6. My sister is currently in Cooper Hospital in Camden, NJ. She is terminal with stage 4 laryngeal cancer. She has a trach and cannot speak. They removed her lymph nodes, which caused lymphedema in her face. Her eyes are swollen shut, her face and lips are completely swollen. Her face hurts to lay on in any manner. The tumor is growing around her trach and cutting off her airway slowly, causing all kinds of pain in that area. She has been there since Sunday. I’m very happy with the pain care she received at home. However, I found out today when I visited that she has not had any scheduled meds. She had to REQUEST them when she needed them. She spent many nights there alone. She has to pull her eyes open to write a sentence when she could get a nurse in the room. I did ask the doctor today why they couldn’t be scheduled and he said that they “don’t like to push opioids”.

   I’d like to know if they think she gave herself cancer to get them? Is she going to shoot up heroin tomorrow when she leaves for hospice? Her husband requested tonight to be given slow release meds or IV drip as he has several other times, and the doctor refused. They told us earlier today that they believe that she has started the process of passing, so what is the issue?

   This is disgusting. I’ve seen more compassion for animals. I’m sorry to be so angry but this is unbelievable. I’m happy she is being transferred so she will actually receive humane care. I wish more people understood how out of control this is all getting.

7. I am a veteran who was seriously injured during service. This was before the opioid epidemic hit the public eye. I was on high doses of opioids, benzos, and sleeping meds (narcotic) until I received my medical discharge. The VA continued the same meds at home. After about two years of this medication regime and surgeries, I decided myself that I had better find a way to get off these meds. Introduce Suboxone!

   I was told by doctors that Subs were the best way to get off opioids. I was on Suboxone for about three years until I relocated to a different state. At that time, the local VA didn’t have a licensed Suboxone provider. So I was sent to a local methadone clinic instead. I was put on Methadone, and again benzos and sleep meds. Eventually the VA got Suboxone providers and I was switched back to Subs. Now I’m on Subs, Gabapentin, and a variety of other meds. NONE have done anything for my pain issues. I’ve also had three teeth extractions and two root canals with crowns. I never even had a cavity in my life until now (57 years).

   Suboxone and Methadone do NOT treat pain! They treat withdrawal from pain meds. Methadone costs about $16/day and Subs cost about $25/day! Neither are covered by insurance! And they are both more dangerous to get off of. I got off methadone cold turkey and that two weeks was pure hell! The VA had me start Subs to fight methadone withdrawal! All the while still dealing with pain. Opioids would have been much easier to deal with than those two dangerous meds! And my pain would be dealt with too.

   Suboxone and Methadone doctors are not helping pain patients. It’s all about money for them. I’m stuck in a life of pain and now addiction to Subs. Go to a local Methadone clinic and check out the sheer number of sick patients who spend every day standing in line for a cup of watered-down Methadone! It’s sad and pathetic what these meds have done to people who are fighting addiction with a more powerfully-addictive medicine.

8. Years ago I was severely and permanently injured in a car accident caused by a drug addict under the influence.

   Yesterday was the last day to add comments about the 2022 revised CDC opioid prescribing guidelines at the Federal regulations site. I gave my opinion and told my story about how I was treated by doctors ever since the CDC guidelines had been created. I said, every doctor in whose care I have been, started saying they must follow the guidelines so they won’t get arrested by DEA, go to jail, and lose everything they own to civil forfeiture.

   I was always told by my doctors that my extremely painful incurable condition warranted continuing the opioid medication therapy, but it didn’t matter because the guidelines say 90 MME threshold. Some of the doctors would ignore my documented medical information, saying according to the guidelines the amount I need to control my pain exceeds the MME threshold, so that means I’m addicted, and I have to stop taking what I say works for me, and accept the government-approved addiction program. They wanted me to start taking a lot of Buprenorphine and receive shots in my back as well, or I won’t get anything at all, and to find someone else for medication.

   Before the guidelines I had stable medical treatment with adequate dosing of opioid medication. I was able to have a good quality of life that included contributing to my family and community. Now, without adequate pain medication, I have become bed-ridden as I’m in too much pain, and trying move has become an impossible torture. The so-called experts who made up the guidelines, and the politicians that think they know better, obviously don’t know what they are doing. It was admitted there was a conflict of interest for the writers of the guidelines who were benefiting from [implementation of the guidelines] financially.
   Though that didn’t change the application of the guidelines to pain patients.

   Too many people have been suffering and dying from uncontrolled pain. People are dying by overdose more than ever from illicit fentanyl drug combinations – not [from] prescribed medications. The guidelines are not helping to stop this. The enforcement of the guidelines is causing great harm, and only helping people to die.

   I read the entire 2022 guideline version. It’s not very different from the 2016 guideline version, except for repeating of sentences and the advocation of 50 MME threshold. The doctors will use 50 MME as the new threshold limit, as they did with the 90 MME threshold in the 2016 guidelines. The real-world facts show the guidelines are not needed.

   Now, the senators who set up this situation need to do the right thing for the chronic and intractable pain patients. Make a bill like the state of Arizona’s SB 1162 that allows doctors to prescribe opioid medication as needed for the patients with intractable and chronic pain conditions that have medical documentation of their illnesses. Bill SB 1162 is reasonable. When followed it will save lives, and revive the lives of people who otherwise without pain medication won’t be able to physically function.

   Pain patients are medically dependent on opioids for functionality, productivity, independence, and healthful well-being. Addicts are neither [medically] dependent nor interested in betterment for themselves, their families, or their communities – only to be in a state of constant oblivion or extreme adrenaline. There is a distinct and enormous difference between these two groups. They should have never been included together in any consideration of any kind.

   Enough is enough. If through the courts or some other way, it’s time to correct this situation before it costs even more lives.

9. I got in a car accident and almost died. I still have a dislocated hip and drop foot. I also had a brain injury. They sent me to jail like this. Here’s a list of everything else that was wrong with me. Dislocated right hip, fracture of left acetabulum, fracture of right acetabulum, multiple fractures of ribs, fracture of body sternum, fracture of right pubis, fracture of left pubis. They took me off my pain medication saying I needed to gain weight. I’m in excruciating pain and can’t eat much.

10. I am a chronic pain patient who was treated and stable on pain medicine for 17 years, but that may be coming to an end. I have had pain conditions for much of my life and was initially diagnosed with a plethora of spinal conditions, fibromyalgia, and more. I saw five of the top pain management doctors in the nation (who I was referred to after numerous surgeons told me my conditions were inoperable and incurable, and I could only receive palliative care). All of them agreed on my treatment plan. We tried everything: painful injections and procedures, physical therapy, acupuncture, pain psychology, even an intensive outpatient chronic pain program that is the one of the best in the nation. My doctors have been thoughtful and conservative with my medication, but they all knew and agreed that I needed medication.

    When my pain was under control, I had a life. I had friends, peers, and work. However, this has drastically changed since 2016 and the CDC Guidelines for Opioid Prescribing. I have been subject to repeated forced tapers, and I am at the point where nothing more can be cut. Nonetheless, I am at risk of losing an integral part of my healthcare because of the war on pain patients, and because my pain doctors have told me that the CDC Guidelines, which I am supposed to be exempt from, are a hard limit.

    I worry because I do not know how much longer I can endure this – each month, I wonder if it will be the last one that I have medication that I need and that I have been stable on for so long. I thought that if enough things were “wrong” with my body, my doctors would understand. I was wrong. Then, I thought that if I did everything “right,” it would be okay – always complying and jumping through every possible hoop doctors, pharmacists, insurance companies, and others have asked me to. I was wrong about that, too. It doesn’t seem to matter if my body has terrible pain that can be treated and stabilized. It does not matter that since I began as a pain patient, I have been diagnosed with more intractable, painful conditions, including CRPS. It doesn’t matter if I am a “model patient,” because there seems to be no such thing. I am starting to lose hope, and I am maybe a month away from a taper I cannot handle.

    Please stop punishing pain patients – please stop regulating the practice of medicine. My doctors are threatened, and so is my life. Thank you.