Share Your Pain Story

997 Replies to “Share Your Pain Story”

1. I lived a normal life. Was working as a Clerk for our school system. I started feeling bad during the summer of 2009. I thought I may have an ulcer. On Oct 5, 2009 I honestly knew I was dying. My boyfriend got me to the ER just in time. I had an Abdominal Anyseum that had dissected. They gave me a 10% of making it off the operating table. I was pit in a drug induced coma for 10 day in the ICU. They still didn’t know if I would make it thru the night. By the grace of God I did. Was in the hospital 23 days. Went home only to be readmitted 3 days later. Had to have some intestine removed due to a kink. I was placed on pain meds by my regular Dr. After about 6 months now day he said, “that’s it, I can’t give you anything bc you must go to pain mgmt.” I said no. So after 5 YRS and 4 more surgeries my quality of life was basically nothing. I had constant burning which they gave me gabapentin. It helped but then this pain that never went away. I stayed on the bed or on the couch. Do now just the constant burning but pain too. That S when I said enough and went to.pain mgmt. He asked how I had dealt with this pain for 5 yrs. I busted out crying. They gave me my quality if life back. Is my pain gone NO!!! But I can get up and do things now. I can enjoy my grandbabies. I can enjoy what life I gave left on this earth without thinking that I wished I had died on that operating table. I THANK GOD for pain mgmt. I’m scared of how easily they can treat ALL OF US like complete drug addicts. Not all ppl on medications abuse it. We are paying the price for those ppl that do. It scary and makes me angry that they dangle our medication over our heads and keep us in constant fear. Which they could have my life for a day, just 1 day. Then tell me about my pain.

2. I’ve had gastric surgery and hernia repair in early 2000’s. I was put on pain meds and taken off them after healing with no problems to follow. Then once again I had to have another surgery which by now was my 4th abdominal surgery. After this surgery I complained to my surgeon something was not right. I was in TREMENDOUS PAIN and passing blood after bowel movements! He told me it was due to my surgery being abdominal with my intestinal area and these types of surgeries are very painful and I would feel better soon it was just taking longer this time to heal and he wasn’t concerned about the blood due to again it was surgery to my intestinal area and this could happen.

   Well after my 4-week check up I was literally DYING WITH PAIN and passing larger amounts of blood when I was having bowel movements. I went to emergency room they did CT SCAN and told me I had air in my intestines. I stated to ER doctor that I was passing blood also after bowel movements that it did not make any sense to me that air in my intestines would cause that much pain along with bleeding. Dr stated I probably had hemorrhoids. I informed the dr I was a med-tech and attending nursing school and I knew what hemmroids are and this was not hemmroid bleeding. The ER dr told me he was going to do a rectal exam on me if I was going to be persistent on it not being hemmroid related. He was trying to deter me from not accepting his diagnosis and what CT SCAN stated. I told him do an exam on me which he made more uncomfortable then he needed to in my opinion to punish me for not taking his word.

   He did his exam and then stated I was right it was not hemmroid related blood. After this he got on the phone with my surgeons office and told them I needed to be seen right away. I went next day to my surgeon dying in agony and told him I was not leaving his office until he figured out what was wrong with me and if he wasn’t going to help me then he would have to call the police to remove me from his office. He then told me that he was going to call one of his dr friends who was a gastroenterologist and have him do a colonoscopy on me as soon as he could as a favor to him. I said fine I would accept that because I knew that this amount of pain and bleeding was not due to this last surgery. The dr gave me stronger pain meds and said he was going on vacation the following week and he would see me when he came back.

   As I was leaving his office the gastroenterologist called and said I could have my colonoscopy the following week. My surgeon said that when he came back from vacation my results would be in he would talk to me about them at my next visit. Well I went and had my colonoscopy the next week and I found out that I was ABSOLUTELY right about my pain and bleeding not being from the last surgery. I was diagnosed with with 3rd stage colon/rectal cancer and that I had to have immediate surgery. The gastroenterologist called my surgeon while he was on vacation and informed him of my results. My surgeon called me that night and told me he was getting a flight back to RI and would meet me at the hospital the next morning for surgery. After having colon re-sectioning I then had to endure 9 months of chemotherapy or I would only survive 6 months with no chemo that was my option.

   Being that I had a 6 year old I opted for the chemotherapy which was an experimental new drug I was going to recieve for my type of cancer. The Oncologist told me that he could not tell me any side effects from this drug because it was so new and I was going to be his first patient to recieve this drug. I was extremely sick from the chemo. I had to have a port put in due to they blew out every vein in both my arms and they could not put the IV needle in my neck because my veins were too small. So during my chemotherapy I was given even stronger pain med drugs on top of what I was already getting that still did not work completely I was still in a lot of pain. Also at this time I was given anti-anxiety meds on top of pain meds and then also given antidepressants because drs thought I was showing signs of depression.

   After that I still had another 3 or 4 abdominal surgeries which kept me in extreme pain and on pain meds. My dr who was prescribing my pain meds had a couple of his employees steal his prescription pad and they were writing out illegal pain med prescriptions to themselves and their friends which led to my dr having his privileges taken away to prescribe pain meds. So my dr gave me a 1 month supply and told me that he had to let me go as well as all his other patients that were getting pain meds because he could no longer prescribe them at that time. He told me he would give me a letter for a new dr so I could stay on my pain meds because he knew that I truly needed them due to my condition. Well that turned out to be a very UNPLEASANT task. His letter only stated that he had let me go as a patient and gave a list of what meds I was getting but he never stated in the letter why I was let go.

   So I looked for a new dr with this letter in hand and when I showed it to a new dr I was told I was not gonna be able to get those meds I was taking and the dr stated that to him it looked like I was let go because I was a difficult patient with pain meds and pain control. I tried to explain to that dr why I was let go what actually happened with my previous dr that it was not because I was a difficult patient. He still told me I was not going to be allowed those meds he then gave me a very low dose of a pain med and told me I was going to be cut down lower and lower until he would no longer prescribe them to me. He told me I would be lucky if he prescribed them for a year as he felt that these types of drugs were a problem and that I would have to learn to deal with my pain.

   So that’s exactly what happened with this dr I was cut off of pain meds and I now have to live with chronic pain on a daily basis not to count all the side effects I have from my abdominal surgeries and the ravage to my body the chemotherapy drugs did which have left me a total mess in so many ways along with chronic pain. I’m literally in so much pain now and I have to continue to have procedures done and surgeries mostly due to me having had colon/rectal cancer. I literally am in pain everyday and have severe abdominal pain when having bowel movements because of all my re-sectioning of my intestines. There are days I can’t even get out of bed because of my pain. I’m literally fighting with my surgeon right now begging him to do another surgery on me because of what my CT SCAN and MRI SCANS are stating that I have new issues and significant changes to my insides from previous surgeries that is causing me even more pain.

   My surgeon is saying I have a 10% chance of surviving another surgery and if I survive it could make me worse or I could have severe complications from another abdominal surgery. I literally having mesh, pins, clips and other stuff inside of me to keep me together so a new surgery would mean my surgeon would have to undo all of this and he does not want to do this. And yes I did try to go to another surgeon and when this surgeon had read what my actual surgeon had done to me with all my previous surgeries he told me he would not touch me he was too afraid of the outcome. So now as I said I’m trying desperately to get my orginal surgeon to do surgery because my pain is EXCRUCIATING and I just can’t live like this.

   My general practitioner will not give me anything for my pain nor my surgeon. I have had the same drs I have not dr shopped to get pain meds I don’t go to ER or any other place to get pain meds. So I’m not an addict or an addictive person to pain meds. I have not been on pain meds for years however because of all thses surgeries and what the chemotherapy did to my body my pain is getting increasingly worse and all though I have the medical reasons to back up why I’m in so much pain I can not get anything for pain and I’m left to suffer because the drs are afraid to prescribe something because of RI Laws they don’t want to lose their medical lisence.

   I have actually gone to ER 4 times in the past 8 months because of my pain and the first thing the ER dr will ask me is what kind of drugs do I take for pain after they read my medical history. I state I do not take any kind of pain meds they then will ask me if I take any kind of illegal illicit drugs I tell them NO they then run a drug test on me which always comes back NEGATIVE and they state that they just can’t believe I’m not on any kind of pain meds with my medical history. Even these drs are afraid to give anything for pain. I was given Tramadol shot once out of the 4 times I went and sent on my way and told after doing CT SCANS I need to see my surgeon and gastroenterologist.

   his is so unfair I was only 32 years old when I was diagnosed with cancer I have by the grace of GOD outlived what the drs thought I would. I’m now 48 years old and my body is giving out from all of this and I’m in pain everyday and it just gets worse. People should not have to SUFFER like this this should be considered cruel and unneeded punishment along with mental anguish. I’m not a drug addict I don’t use any other type of drug I suffer with my chronic pain which gets worse. However the drug addicts that use illicit drugs can go to Methadone clinic or Suboxone clinic so they dont have to suffer from their addiction and pain. Most of the people who go to these clinics still use drugs they claim they are addicted to and still get their dose of Methadone or Suboxone which is abused and their take homes are also sold put.

   Not to count these drugs themselves are extremely addictive and they literally ruin your organs but no one says anything about this or try to stop this new epidemic of people being addictive to these drugs. These drugs not only cost a tremendous amount of money that is giving out the cost is also to run these clinics and down the road the medical expenses from the side effects of these drugs will be a medical crash from expenses of hospital care. But chronic pain suffers can’t recieve anything especially with medical back up and then society wonders why people just give up some go down that bad path of illicit drugs some kill themselves others like myself just try to survive everyday with pain and not give into self destructive behavior.

   As I stated I have been pain med free for years now and now my pain is reaching a point where I literally can not get out of bed and I have no quality of life living in this pain. Not only am i miserable and suffering so is my family on a daily basis. I truly know life is what you make it but I did not ask for cancer or these surgeries I have had to endure and I have tried to make my life good despite this but now I’m truly paying a high price for surviving cancer and it truly SUCKS!

3. We need help in California! I take care of person who suffers from extreme nerve pain resulting after many back surgeries for discectomies, fusions, and numerous other procedures. After trying every possible therapy and medication available, only a certain opioid medication and form worked for some pain relief to have some quality of life, and without being high. After being a patient at a local pain clinic for two years, a new doctor took it over and stopped prescribing the pain medication. Even with all of the medical history documented and the many years of using the opioid medicine with a perfect record of responsibility the doctor then marked the patient as a drug seeker and addict, and then prescribed withdraw medication that made the patient high but did not treat the pain. Later during another visit to the clinic the patient told the doctor the pain was becoming unbearable. The doctor’s only reply was That’s Good! Now, the patient can barely move and has told me he can no longer stand the pain and wants to die to relieve his suffering. There is no recourse or solution for this person. Why is there no help? There are so many other stories being shared across this country of medications being taken away from pain patients then ending their suffering with suicide. The government is aware if this and yet continues to persecute pain patients and the good doctors who want to help them while using the deaths to add to their opioid crisis statistics and giving sadistic doctors protection and power to harm.

4. My story begins with making kidney stones. I had my 1st one at 21, then every other year after, until when I was around 35, I started making them 7 or 8 a month. I would pass 2 at a time, but the doctors never did figure it out until much later, a GP doc showed me real compassion and found a simple drug that pretty much stopped them. I had papers published on me and I was the top producer of stones in the western US to shorten my story.

   I was working on a roof one Saturday and fell off, tearing my diaphram, and shattering my arm. I almost died due to hospital negligence, and was off work six months. I gradually got better, and returned to work with a messed up back as I called it then.

   Then, a year later, coming home from work one day, I was rear ended at 50mph in a 3 car accident. I suffered severe double whiplash with spinal injuries. I went without any medications to speak of, for over 2 years. Then I had a terrific heavy truck accident, my trailer lost a wheel and I went over a 30 ft. embankment, rolling over. I suffered spinal injuries once again. Then I could not work any longer and was disabled.

   Later on, I went back to my compassionate doctor, the one who cured my kidney stones, and he put me on a regimen of opioids and my life suddenly changed for the better. I have a high tolerance for them, but never abused them. I was gradually not pain free, but able to raise my two sons by myself, and work part time. After a few years I had to have one, then two spinal fusions, and my pain increased. My doctor increased my meds, monitoring me closely for 15 years. There were no problems ever. I would see my pain doc, signed a contract, and my doctor continued to monitor me closely thru those years.

   Then the CDC ruling or “recommendations ” appeared. Now my doctor was scared for his license, as all doctors are. I am being “weaned” down to as of now less than a third of the meds I was on. I can’t enjoy my life any longer. The doctors all used to use a pain scale of 1-10, now all those have magically disappeared from ALL doctor offices and hospital rooms. Now, us chronic pain patients are supposed to take advil and do Thi Chi. What a joke! I am in constant pain every day, I can’t sleep because of it. And all the government has done by putting forth these guidelines, is give a death sentence to thousands of people including veterans.

   I really think it is an agenda put forth by the insurance companies to save them millions of dollars in opioid scripts. No one seems to care. It used to be that opioids were used to control severe pain. Now the doctors and the government says and I quote, “Opioids only control pain in 30% or less of chronic pain conditions”. Whenever bad rulings come down from the government, you should follow the trail of MONEY, and that is the case here. Obama started it with his LOUSY healthcare plan, and now Trump is going along with the big Insurance in this country.

   The bottom line is, now I am a senior citizen, and I get to look forward to my last years in severe pain, that gives me a low quality of life, or I can end it all, as even suicide is legal in Oregon. Many are doing just that, because unless you have went thru what I have, and other severely injured people, you simply CANNOT understand what severe pain is like to deal with 24 hours a day, with NOTHING to ever stop it, or even slow it down now that the GOVERNMENT has meddled once again into the lives of private citizens where they don’t belong.

   That is my story, a little long, but I really left a lot out, as you can tell, as I write this I am in a lot of pain. Once again I am having a bad day.

5. i have had fibromyalgia most of my life. now i also have osteo artehitis . have had no luck in my town getting help with pain dont know what to do anymore the goverment . has taken most of us with cronic pain off of the meds that helped with some of the pain. i live in grand forks northdakota. wondering if a rally is going to be anywhare ner me.

6. My husband is 76 I am 70. My husband was hurt at work quite a few years ago and was disabled. He also was hit by a car about 15 years ago. I am 70, I’ve had one hip and both knees replaced and will need the other hip done. I also have torn rotator cuffs in both shoulders and arthritis in my spine. We both had a pain doctor and both took pain meds.. About 3 months ago we got word that with our next refill the meds were going to be “ weaned” down.. Within a few weeks of that my husband was really hurting and so was I. my husband is diabetic and his A1C has risen from 6.8 to 7.5. His doctor said that pain will affect his diabetes. I need to tell you that we both are careful to take our meds correctly. We don’t doctor shop and neither one of us has ever taken an extra pill. We follow all the rules put in place by the government. ( urine tests, bringing pills in to our appointments to have them counted etc) We went to see our pain doctor 2 weeks ago and she was planning on cutting us back further.. we don’t blame the doctor, we know she has no choice.. I have written letters to all of our representatives in Washington and hope everyone else will. Thank you for reading my story

7. I have had many unsuccessful neck surgeries. The list of my chronic pain issues is to long to list. My medications have been cut drastically and now have no life. I want to fight for my right to pain medication. I take them as prescribed and have been in chronic pain management for 18 years. I want to get involved in your organization. Thank you.

8. I was injured on the job car accident self insured fought everything I had to wait til they closed my claim a second time to get treatment through my medical insurance I was in debilitating back and leg pain had surgery in 2009 fused 3 disc hardware left me with leg damage chronic pain nerve damage scare tissue over grown bones in spine from cadaver bones patched with spinal stimulator. Second surgery they could not sucesfully remove overgrown bones or hardware punctured my spinal canal causing spinal fluid loss. My pain dr has treated me the last 9 years and now my insurance is refusing to refill my pain meds. I’ve never failed s urine test or taken my medications other than directed by doctor. Never taken anything other than prescribed. I was suddenly cut off pain meds I’ve been on consistently for 8 years o work full time and was in chronic pain and withdrawals. My doctor is trying to fight Cigna and jump through there hoops. Please help us fight punishing compliant non drug addicts pain management patients. Please share how I can help.

9. It begins one day. And after that day you think life will be normal, pain free again. . Dr appointment after Dr appointment…..sleepless, painful night after another……pain getting progressively worse….worry turning into anxiety and depression….lonely desperate nights….with no one coming to save you. Never would I imagine that this could happen in America…such an injustice maybe in 3rd world nations. I am an every day, retired, American in pain….wondering and getting more angry , as to why our government is not looking at this “opiod epidemic” fairly. Many suffering are not drug addicts…but people who need appropriate pain medication for an illness that they hope with all their hearts will go away. Please fix this.

10. I suffer from horrific nerve pain from a shredded nerve in my spine. A few months ago the government stepped in and took my pain management Doctors license to write narxotics. I keep trying to find healthier ways to deal with this unbearable pain. I have always done better in summer being able to take only a few pills in those months. I am terrified of what’s going to happen if the DEA doesn’t allow him to start treating his patients again. My doctor knows his patients and told the DEA he can’t ignore his patients he knows the needs. He has been cleared of wrong doing but still hasn’t had his license reinstated. The weather is still a problem now but is allowing me some better days. I can’t imagine not having relief from my pain. I do have a high tolerance to pain but the nerve pain is completely unbearable. I can’t be around people because I get angry easily and I can’t control my attitude with such a high pain level. I love my family and hate not being able to go to family get togethers. My life has been reduced to laying on my couch covered with heavy blankets with a heating blanket under them. I don’t wish this kind of pain on anyone but I find myself wishing they could feel my pain for 10 minutes. Only then could they possibly understand!!!
    I have this shredded nerve because a physical therapist moved the plate and I started having nerve issues and my workmen’s comp refused to allow my doctor to fix it. My life as I knew it is over unless doctors can figure a way to fix or cover the bare nerve where the sheathing has been shredded.
    There has to be a way for the government to stop punishing patients and the doctors who help them!!!