Tell your story of living with chronic pain, by leaving a reply at the bottom of the page. Do not mention specific medications or dosages. Stories do not appear right away.
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Tell your story of living with chronic pain, by leaving a reply at the bottom of the page. Do not mention specific medications or dosages. Stories do not appear right away.
On March 8th and 15th I had a radio-frequency ablation procedure on the nerves on either side of my right and left lumbar spine, respectively. The procedure was done at OrthoIndy Hospital South (OIHS), located in Greenwood, IN, without proper sedation or pain management. Each time, I was given only four milligrams of I.V. Versed (midazolam) and was injected with small amounts of lidocaine (in my lower back) as a local anesthetic prior to having my spinal nerves burned off. I was then given an ice pack and told to take Tylenol at home. It was awful and extremely painful.
I was told that I would experience “twilight conscious sedation,” which was a falsehood. When I had to have a celiac plexus nerve block years ago (before pain was being punished as it is now) at a different practice, I was given I.V. doses of Versed AND Sublimaze (fentanyl) for true twilight conscious sedation (along with lidocaine as a local anesthetic). I didn’t remember the procedure, nor was I in any intense pain during or after the procedure. I’ve also had endoscopies requiring twilight conscious sedation that utilized Versed and Demerol (meperidine) each time.
For some reason, OIHS thinks that making a patient comfortable for a very painful procedure just isn’t appropriate. That’s despite the reality that there is no way for medications necessary for true twilight conscious sedation to be abused, either, as they’re being administered by professional medical staff in a highly supervised setting. And with Tylenol, my post-procedure pain was 7 to 8 out of 10 for a minimum of 18 hours within the first day. #DontPunishPain
Hello, I suffer from CRPS, pudendal neuralgia and interstitial cystitis at 24 years old. My doctors won’t allow me any pain meds. My doctor actually even took me off Gabapentin because she didn’t want a 24 year old on pain meds for invisible pain. A woman in my Facebook support group took her life because she couldn’t get pain meds, and everyone in our group could relate to her pain and suicide ideation from not having pain meds. Do you know a doctor in the Philadelphia area who would manage my pain? I’m willing to travel.
I’ve been a chronic pain patient for a very long time. I have bulging discs in my Lumbar and cervical area, osteoarthritis, degenerative disc disease, sciatica, meniscus pain in both knees that makes it hard for me to walk, and geographic tongue which is a very painful at times autoimmune disorder of the mouth. But I still manage to go to work. I’ve been driving a forklift for almost four years. Before that I was a nurse’s aid for 22 years … that I can no longer do because my pain is not managed. It’s getting to the point where I am not going to be able to drive a forklift any longer. The doctor I am seeing for my knees wants me to find something else to do. But my primary care doctor and my knee surgeon will not say I’m disabled. With as bad as my pain is, I think I’m disabled already.
I really am suffering, but I do not tell pain management how bad I’m suffering. I take the medicine they give me because I’m afraid if I tell them my pain is worse than what I tell them, then they’ll act like I’m drug-seeking for more drugs, and then they will just take what I am getting away. What I’m getting doesn’t control my pain adequately but it does make it almost manageable enough that I can go to work, but by the time I get home all I want to do is cry. I just want to be able to have somewhat a normal life. I know I will never be totally pain-free, but I would love to have my pain controlled enough that I could do the simple things in life without crying out in pain every time I stand up. And I’m tired of doctors and Pain Management acting like the goal is to make your pain tolerable but not to make it go away, when they’re the ones telling you what is tolerable. Why is pain management deciding when my pain is tolerable? I should be the one doing that.
I have congenital disk disease, fibromyalgia, osteoarthritis, and nerve damage in my left leg. I have been safely taking pain meds for over 20 years. I have followed all the rules outlined by my doctor. Now due to the war on opioids my doctor of 30 years is afraid to continue with my prescriptions and wants me to taper off and quit taking the only thing that helps my pain and allows me to have some semblance of a normal life. The only alternative for me will be to find something off the street at great risk or live on my sofa in constant pain or decide life is not worth living at all. I am 70 years old. I do not care if I am addicted, all I care about is having a life without the constant pain. If you have the name of a doctor in PA who could help me and understand and be able to help me keep my quality of life please help me
I have psoriatic arthritis and degenerative disc disease. I live in Arkansas. I was diagnosed in 2006. My rheumatologist steadily increased my dosage over the years. And when the new CDC guidelines came along I was drastically tapered, and to make things worse my rheumy completely got out of pain management. So now I was at the mercy of pain clinics in the midst of this war against pain patients! They initially began to cut my dosage drastically. Which caused a huge spike in my blood pressure due to the onset of pain. The clinic then increased me but they refused to go past the CDC guidelines. Every single visit I explained that I needed more. Until just recently when they decided to fire me. Citing that they couldn’t fulfill my expectations!!! So now I am completely lost. I am a single father, been raising my daughter since she was 7. I have been disabled since 2006 when I had to give up a company I had to work hard for years to build, due to this disease. I don’t know what to do. I have lost all hope. I tried for months to get into a clinic out of state. Only to finally get there and be told that they don’t prescribe. Even though the nurses informed me that they did and that my med levels were too low for my condition. The doctor there offered me a referral and it’s been two weeks!!! To add insult to injury I was fired from my current clinic just for requesting an increase!!! All hope is lost. I am doomed. I am in hell. If anyone knows of a pain doctor who can help me. One that is compassionate. Plz help. I am willing to drive.
Hello to all.
In 2005 I had a prothesic disc replacement at L5-S1. The surgery was done anteriorly. The surgery was not successful and the doctor that performed my surgery is on administrative leave because of cocaine and alcohol being found in his system. I do not, and cannot, find ANY information regarding this. The conglomerate of doctors at this center did have my pain managed, which took some time to get the dosage correct. I was living some semblance of a “normal” life without crushing pain. That ended in 2016 and I have been suffering since. No doctor, and I’ve seen a plethora, will actually TREAT my pain level, reducing me to a point where it is nearly impossible some days to even get out of bed. I was informed by my last pain management doctor that I needed to get a letter from the Governor in order for him to adjust my medicine. I began the task of producing this letter. After about two months of me contacting through the appropriate channels, I received an email and a phone call. They sent me a letter from the Department of Health, Bureau of Narcotic Enforcement, stating that I was to be given the proper dosage of medicine. This letter was, in my mind, very positive. I thought I’d soon be getting some relief. My doctor told me that the letter didn’t mean ANYTHING to him. I asked him why, if this is what he wanted, and was met with animosity. I was discharged from his practice the following month. I have been trying to find a new doctor, but have been met with NO’s. They either will not take me on, or they say they will not dispense medicine, even at the lower dosage he was giving me. I could go on and on. I feel like I am a criminal, that’s how I’m treated at most doctors, and also by the pharmacies. I feel like there’s no help in sight. I’d like to be able to get through a day without crying. I’m a 52 year old man that used to be strong. I feel helpless. The past five years have been intolerable. I’ve read articles stating that they misinterpreted the “guidelines” the CDC issued in 2016 with more and more frequency, regarding those chronic pain patients that have been neglected. I have lost my “life” in all this. I’m permanently totally disabled, retired from my job where I worked for 18 years until this happened. I live in Long Island, NY.
I feel lost, sub human, depressed, miserable.
I’m reaching out here to see if anyone can provide me with a “light”. I feel useless and defeated.
I couldn’t even read all of these horrible stories. I hope that the CDC and all involved doctors and pharmacies realize that without pain meds you have sentenced most of us to a life sentence of torture and pain. Shame on you. My body my choice, not yours. I guess I’ll just continue on my journey nowhere and just sit here in pain waiting to die and it is taking forever … but at least I haven’t overdosed and died. Gtfoh with your BS laws that directly interrupt my pursuit of happiness. Thanks for the prison sentence. I’ll be sure to haunt those responsible when I die.
Hi, I have been punished with pain and abuse by some docs since 1990. I was at death’s door in ’95 but an angel doc intervened. I ended up on methadone which was a life saver. Only one doctor was able to help with procedures and the methadone needed to almost be pain free until the government and CDC stepped in. They made me change doctors because I had moved from SC to FL. I drove to SC monthly until scripts could no longer cross borders. Since then no doctor has been effective with procedures. Now I am being forced to cut the methadone to beyond what is tolerable, which is a death sentence for me. My days are numbered, if I don’t find a doctor who will fight for me. I started on a proper fairly low dose. After 10 years I went up 25% then back down, now 30% less. My body is on fire, so if anyone knows of a FL doctor who is able and willing to help please let me know, thank you; very sincerely thank you.
I was a long time patient of a pain pain management in Spartanburg South Carolina. I was stopped for a license check. I have my prescription bottle with my prescription meds in my pocketbook on the passenger seat. The officer saw the bottle and asked to see it. And because of the warning label on the bottle about not operating heavy machinery, my bottle was confiscated. I made a new appointment for my pain doctor and he saw me pretty quick but he had to inform me that because my bottle was confiscated by the police that I could no longer receive narcotics through a pain clinic! I also tried to talk to my family doctor and explained to him what had happened! He said that he could not prescribe any narcotics because of the incident either and that I was labeled now as a drug seeker, and blacklisted from receiving any narcotics for pain (which I desperately need). I have gone through tremendous withdrawals and depression and thoughts of suicide because of the pain and not being able to have a prescription! I fell three weeks ago and broke my hip. I had to go through surgery and my surgeon refused to give me narcotics for the pain! I am suffering so bad because of the situation! I have never failed a drug test or missed an appointment! I never asked for more than the doctor was already giving me, and never took more than I was supposed to! I want to support you and Don’t Punish Pain Rally in any way I can! Thank you so much for giving us a voice! we are not drug addicted! For anyone who reads this, beware – don’t drive with your medicine in your vehicle; they will take it like they took mine, and they ruined my life all because of a license check!
I am a 51 year old male. I was a commercial plumber in 1994 where I fell 16 feet down a shaft. I broke my neck, my back, both my legs, my left shoulder, and left wrist. I was put through h*** having multiple surgeries. After two years of suffering on enough pain medicine to where I would actually burn myself on the heating pad because I would lay on it unconscious, I was told by my doctor that you would be better off if you would have died instead of living through this. I got so depressed that I nearly tried to kill myself. I’ve been to rehab and always fallen back in to the pain medicine. I was sent to a physical therapy rehab for three months to where I was taught how to stretch and how to basically live with pain.
After leaving there I was prescribed enough narcotics to kill three people just so I would shut my mouth. I’ve suffered from extreme pain for over twenty years. I’ve been addicted to opiates for over twenty years. I’ve tried everything that you can think of, from marijuana to illicit drugs, just to try to get a night to sleep. I found something that truly helps me having the chronic pains that I have – it is swimming. I have to get up and swim for 45 minutes in the morning and 45 minutes in the evening, keeping my body loose so that I can get 2 hours of sleep.
I still suffer from anxiety, mania, sleep apnea, you name it. I’ve tried to ask for help in different ways and every time I’ve asked for help I was labeled a drug seeker, a drug addict, a loud mouth. I’ve even been arrested for crying and telling my doctor that I should break your a** apart like mine was, just so you could feel the pain.
With that I moved to Florida in 1998. The atmosphere in the heat from the sun down here in all the water has helped me tremendously. Not to find a terrific doctor, and that’s a really big word. You have to go out and actually test drive all the facilities. There is a big thing down here to where they call themselves an intervention pain medical clinic. This is where I was forced to have multiple injections every other month, and my prescriptions were basically hung in front of my face, and if I refused injections then I was refused my medicine.
I finally found a doctor that actually cares, and I mean out of thirty doctors this one doesn’t want to use me as a pin cushion – he truly wants to help. I mean he calls me just to see if I’m okay. When Covid-19 hit and I contracted the virus this doctor called me once a week to make sure I was okay and still alive. The staff is tremendous. Yes they offer injections but if you don’t want them you don’t have to have them. There is truly an epidemic with opiates in our country, and it’s not the pain doctors as much it is the patients. We the patients become so addicted to the medicine and we don’t know which way to go, so we start adding a little alcohol, maybe some marijuana, or maybe something stronger.
We were not trained as we were brought up on how to deal with pain. We live our lives trying to be normal, we heard ourselves and from our grandparents to our parents to stop the pain is to give us a pill. Mainstream pharmaceuticals like Tylenol, Ibuprofen, all have terrible side effects, but they don’t tell you about those. I am not perfect. I do know from all the years of psychiatry that old man time is what’s going to get me, but I’m afraid after twenty years of taking pain pills at high doses that eventually my liver or my kidneys or my whole body would shut down due to abuse of opiates. Whatever you do, don’t give up – there’s always someone out there that wants to listen.