Share Your Pain Story

1,000 Replies to “Share Your Pain Story”

1. Hi,I have no discs left in my lumbar due to arthritis and being in a car accident in 1988.I have bone on bone in lower spine and the nerves are being squeezed,severe burning in my feet and it’s constant….Opioids alleviate this. Without meds the pain IS UNBEARABLE. I can’t sleep.I cannot get in a comfortable position it truly is unbearable and now my Dr is telling me that they are cutting my medication. I’ve always gone to Pain Management for medication. I’ve been taking medication for over 20 years and I take my meds as prescribed. I don’t drink nor,do I smoke. I’m self employed with a seasonal restaurant and I work my butt off. I stand for 10-12 hours a day with no breaks.I love my job and I like working my restaurant;it’s what I do. Without medication I will not be able to stand let alone work…let alone exist.
   IF they take away my meds I will be forced
   to find an alternative…I don’t know what and I don’t know where?

2. I’m a 47 y female I have had psoriasis Spence 13 I am now diagnosed with degenerative disease of the spine and inflammation is ridiculous I dont like Drs first off and dont go unless I need to see them well with the state of Fla s new laws I’m now labeled and they think all I want is there narcotics! Well wrong again I’m looking for biologics and my primary has dismissed me because I went to a different location for a second opinion. This is a sliding fee clinic and I have never asked for narcotics but it says in my chart do not percribe narcotics why

3. I’m a 49 year old woman who suffered many years from chronic pain in my lower back, sciatic nerve, and right shoulder. In 2016 I was in a car accident that required a disc replacement, plate, and screws. I also had 3 other surgeries on my wrists and left ulnar nerve. I had been on narcotic pain medications from 2010 due to my previous pain. After my accident I couldn’t bear the pain and so my Dr. Increased my doses. I was tolerating my pain with the new doses and refused any increases. Then in 2019 I was informed that the DOJ was “requiring patients have less than” a certain amount of opioids ( I can’t remember what the numbers were ) per month. This was “due to the opioid crisis”. My Dr started reducing the amount of narcotic pain medications I am prescribed. As a result, I am now more disabled due to my pain. My husband tells me I cry when I move at night and that he has seen how the decrease has made me experience more really bad days. Every day is bad, but sometimes even moving is horrific. I don’t understand how or why my pain levels are subject to what the DOJ is deemed adequate. Just before I was categorically placed in a group of people, that I really have nothing to do with, I had days where I could actually make it through the day without PRN doses. Now my doses of PRNs are the only reason I can move. I don’t use alcohol, I don’t break the law, I don’t cause problems for others, and yet because of this “opioid crisis” I am categorized as a “user”. I have been harassed by the pharmacists, made to feel like I am evil, and been denied medication by my insurance company because my doses are “too high”.

   If someone can explain to me why I am being punished for others choices when I had no fault in my current situation I would be grateful. I’m not looking to place blame. I just want to be able to try and be comfortable in my issues. Thank you for your support ❤️

4. I had some back issues and a torn rotator cuff. My general practitioner doctor told me I needed to be in pain management, I did not ask for it. I was prescribed some so-called weak medications and what’s called a pain patch. I had no idea what the patch was about however I did tell the doctor my surgeon wanted to do an MRI, he had no response. When I went in for the test, I was asked to complete a form prior to the MRI, which asked me if I was wearing any kind of patches, I replied yes and described it. I was told by the technicians it was perfectly fine to get into the MRI machine while wearing this patch but then it dawned on me why would they be asking on this form about any patches, what did that mean? Nobody could answer my questions they just kept telling me it was fine to get into the machine. I then asked for the manager, who came down huffing and puffing and yelling at me that I was holding up their schedule. I asked her again please just tell me about the patches, again I was told they were fine without any other answers. I asked her to please go look it up on her computer because I did not have a smart phone, I could not get hold of anybody to find out any answers about the patches that I was told to leave on for a week. She quickly came back and said it’s just fine, I looked it up, you can get in the machine. At that point she had me in tears she literally bullied me to get into the machine, threatened to cancel my surgery that I’ve been trying to get for two years.

   I broke down and got into the machine. I did notice the uncomfortable burning which I thought was the torn rotator cuff. Had a hard time getting out of the machine, five minutes later I was already out the door and in my car. My right hand started burning like it was on fire. I had to stick it in a cup of ice. Noticed my fingers were literally beet-red and curling up into a claw position which I couldn’t move for 10 months. Of course the surgery was canceled when they took one look at my hand that was swollen out of shape and extremely painful. The next day I noticed my other hand and my feet were very painful. Then I had double vision, my hair started falling out, confused, depressed, double vision, malnutrition, vitamin deficiencies etc. I had to be held down by four people to open my fingers to tape up so they wouldn’t curl back up. I felt like they were breaking them.

   Now 4 1/2 years later I am on those medications they were scared of to begin with. Before the so-called opioid crisis, they had me on the correct medication that made me feel pretty normal, I was at least able to carry on my life. I could feed myself, bathe, do my laundry and so on but then he decided he couldn’t deal with me anymore. I’ve been to a total of four pain management doctors who don’t want to prescribe anything for me. Says my case is too difficult and they don’t understand it. What it has turned into is called perpetual neuropathy, not the kind diabetics have, this kind is throughout my whole body. It has gone into my vital organs two different times that sent me to the hospital.

   I literally have no will to live anymore at 59 years old, told nobody’s going to help me. I’m in the system now, I’m in pain management and disabled, so give it up. Nobody’s going to help me. My doctor says I don’t have cancer so he’s not going to give any medication to me anymore… I can’t handle this pain, I’ve never felt anything like it ever in my life. Maybe when the time I accidentally was electrocuted, but I could pull my hand away. There’s no answer and now no pain medication. A doctor did this to me, I didn’t do this to myself, but I’m sure punished like I’m a criminal. All this because the extreme overreaction towards somebody who did not have a profile of abusing drugs when they had had previous surgeries. I’m going to end up one of those statistics that doesn’t make it. My life is over.

   My point is, not everybody fits in to the same category. Just because somebody you knew ended up abusing drugs, doesn’t mean everybody else is going to. Even though the doctor did this to me, I’m going to die. I can’t even get the medication to relieve my suffering. How is this right? Why do we have alcohol legal? Some people become alcoholics, it ruins their life, but they don’t take it away from other people, yet look how many it’s killing. Everybody is different and people need to be treated as individuals. Doctors are not taught that people are individuals, not everybody is the same. Why do I have to die because of somebody else’s stupidity?

5. I’ve been a Chronic Pain patient for 30+ years, was very stable with 30 years of pain medications until the CDC Guidelines cut my daily dose by 70%. This has caused nothing more than hell on earth for me and my family. I was very independent before the forced taper, now I’m unable to function without the help of family. I’ve tried all the alternative therapies over the years with no success, the only thing that made me functional was the higher level of pain medication. Been in pain management with the same doctor for 23 years, was told by my doctor sorry I know your higher level of pain medication helps your quality of life, but I have to cut to below 90mme or I could lose my license and face prison. Something needs to change and soon, we are losing the war on Chronic Pain by politicians and 24-hour news media. It’s a heroin and carfentanyl problem not prescription pain medications. Without proper pain medications, fellow United States citizens will suffer needlessly, and many more will pay the ultimate price of death by heart attacks, stroke and suicide.

6. I have both fibromyalgia, spinal stenosis and very aggressive osteoarthritis. I was managing well. Taken off my meds, and the pain has come back with a vengeance. I have been hospitalized twice with bleeding ulcers so I can’t take over-the-counter NSAIDs. Last year I had half of my collarbone removed because it had been eaten away by the arthritis. I never abused my meds yet I was deemed a career junkie by the CDC’s definition. The government has no business being involved with my healthcare. This is a devastating policy for so many people. I just want to manage my pain and live my life.

7. I have been on pain medications since 1997 following 9 surgeries. All my surgeries were due to one simple, one-day laparoscopy that went wrong due to a doctor’s mistake. I lost my career and my money; my life has been very hard ever since. For years, I was able to get all the medications I needed to live with bearable pain and take care of myself with moderate help. However, for the last 3 years, I had to cut down a lot of medications.

   I have a very compassionate doctor who has kept on prescribing as much as she can. But, I live in fear of what will happen if she retires or gets more afraid and stops prescribing. She is always telling me that she is afraid one day the DEA will take her license away.

   Filling the prescriptions that my doctor writes every month is very difficult. Many pharmacies won’t fill the prescriptions, others have their own rules no matter what the doctor writes.

   I have talked to many people that went through horrible withdrawals. Doctors did not cut their medications 80% or 90% in one visit with total disregard as to the consequences.

   I believe the protocol used to be that narcotics were weaned slowly, by 10%, as tolerated, and stop when the patient told that she/he could not decrease any more because the pain became unbearable.
   These patients not only suffer the consequences of rapid withdrawal but also their lives became intolerable. Many of them now are bed-ridden, have no family lives, and some are contemplating suicide.

   How long will this travesty keep on going? I think as a group it is time to find an attorney.

8. I have had CRPS for 27 years and have been on pain medications for those 27 years

   In 2009 a friend asked me if I had considered pot. I never had used it but found that it helped me.

   I live in Kansas, a state that unfortunately has not legalized marijuana. I was honest with my doctor about my use of marijuana and for SEVEN years he knew I used it and kept prescribing morphine and hydrocodone to manage my pain. I never asked for refills early, I rarely have a drink and have never nor would I try any hard street drugs.

   A few years ago I was asked to sign a “pain contract “ that stated that I would not use any drugs including marijuana. I signed it but didn’t really worry as the doctor was already aware that I used marijuana.

   A few months ago I went for my usual 3 month medicine check and saw his PA. I was not feeling well at the time and she suggested I might have a UTI and wanted a UA. She also apparently added a drug test to the UA which came up positive for marijuana. A few weeks later when I called for a refill I was informed I would no longer be seen there because I failed the drug test.

   In the SEVEN years I had seen this doctor he had never ran a drug test and kept prescribing my pain medications, the fact that he knew I used marijuana had not seemed to bother him ALL that time. His office manager said that it was written in my chart that he had asked me to quit (untrue). I asked to make an appointment to talk with my doctor and was basically told to go to the ER and that I was not allowed in their office again

   Losing a doctor is difficult when you are on Medicare, many doctors that accept it are not taking NEW Medicare patients. As a result I have been left with ZERO pain medications and can not seem to find help anywhere.

   I live alone, and as I lay on the floor of my bathroom, sweating, vomiting and shaking from withdrawal I thought I might just die. It was nothing compared to facing what came next which is facing CRPS/RSD with no pain medication on board. Now I WANT to die… the pain is unimaginable.

   NO doctor should be able to do what mine has done to me. I am literally all alone in an enormous amount of pain and am constantly thinking of ending my life because I can’t find anybody In Wichita to help.

   I am being punished for marijuana????? Ridiculous

9. I’m writing this for all those I’ve offend who now desperately seek to punish me by making my life a living hell. They do this by legally seeing to it I am inconvenience as much as possible such as seeing to it no one can call ahead to save me anytime so that I have to go from pharmacy to pharmacy like a dam beggar to fill a doctor’s order. By ensuring that I can in no way refill 24 hours before 30 days has expired regardless of holidays or a work schedule. They know nothing is open past 6 nor is anyone who’s in charge working on weekends. Also by putting me on medication that they know has severe withdrawal symptoms knowing the odds it always being in stock when I (the last on the list ya know the patient) have been granted permission by the exalted ones to refill, seeing as how it’s been limited by those who also hope I suffer more due to my arrogant expectations. They’ve even turned my raping insurance company who rips large chunks of money out of what meager earnings I can scrape together in my “It’s my own sorry ass fault loser” condition. So yes to those I sincerely apologize for my errant ways. I humbly seek your forgiveness for the problems I know my problems have caused you. I am very sorry for mistakenly seeking treatment, relief or even ever once thinking the 1,000s of dollars I spend on insurance and office visits was actually for my benefit. How stupid of me. So from today forward I promise never to ask and only pay with out any expectations. Because trust me I too am very sorry the accident didn’t kill me. Sincerely It’s all my fault.

10. My name is Christine, and I have chronic pain. At 43, I never thought I would be in this boat. It is an absolutely horrible boat… More like a carved out canoe that has been through a hurricane… I not only have back issues, but diabetes, bipolar, PCOS, endometreosis, diverticulosis, Tachycardia, high blood pressure, stomach ulcers. As of now I have had more than a dozen surgeries for various issues. I have lower levoconvex scoliosis, and straightening of the cervical lordosis. Those came with “surprise” you have 7 herniated disks. One, in my neck, was so bad that it had ruptured and calcified, causing a bone growth that was cutting off my spinal cord at c5-6. To quote my neurosurgeon, “All you need is a good case of whiplash to be paralyzed from the neck down.” That was chiseled out and fused. Then my voice never came back. Had surgery for that and have to have it again. Then stenosis surgery to remove the remainder of the calcified deposits that caused my left arm no feeling or use. BUT…

    3 weeks after my first fusion… My pain doctor informed me that I did not need opioids… I could take ibuprofen or have injections. UMMMMMMM… My surgeon told me I should not touch ibuprofen for a year. It causes a decrease of positive bone growth for fusion and healing. And I should not have a needle in my spine that has been degraded from surgery, and it will not help my pain anyway. So… I had to leave that idiot of a doctor. He was new at a pain clinic I had been with for years. I knew the voice surgery would be coming and he still told me I did not need any opioids after vocal cord surgery… I left that practice and now have a doctor that has actually looked at my MRI’s, talked to my surgeon, and sees my plan… I am blessed to have a TEAM of 6 doctors that work together. But that one was a weak link, my pain doctor.

    I am one of the lucky that was able to find help, but could you work with 7 herniated disks? Could you walk? Could you even function? With no help, I can’t… I have them from C2 to L5. I take 17 prescriptions, and most I cannot take over the counter pain meds because of liver interactions. I have even had H. Pylori, causing many ulcers in my stomach, so no ibuprofen with that or I poop blood. Many doctors, because of the FDA guidelines and FEAR, don’t even look at that.

    If I walk into an ER with severe abdominal pain… I walk in with a 2 inch file of my history. I say, “I do not want pain meds. I am under a pain contract. My doctor cannot diagnose diverticulitis without a CT scan, and he does not have a CT scanner and he sent me here. Here are my last hospitalizations from diverticulitis in CT form, and discharge papers.” Why? I have been improperly discharged with diverticulitis while labeled as a “drug seeker”, and nearly had my colon rupture because of that.

    If you think you are doing good for true pain patients, you are making our lives a living hell. If you think this is fun, or I want to be on pain medication, you are SORELY mistaken. But, as with my heart, bipolar, or diabetes medication, it is part of me just functioning. STOP PUNISHING US!!! Spend money on stopping illegal drugs. Hire more officers, detectives… Keep that crap out of our country. Let us live. Let us survive. I am not a drug seeker. Currently I am a survivor. I am a pain warrior. I have had 3 major surgeries in 2019, and had my pain doctor, at the beginning, tell me I did not need opioids to get through a surgery that cut through not only the front, but back, and main muscles of my neck. You do that with Tylenol.