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I have intermittent nerve pain because of lumbar disc compression. Have never taken pain pills except on the days of nerve pain flare ups. Drs no longer want to prescribe even as few as 30 pills over six months just to cover the flare ups. Have never abused them. Seems crazy that because of abusers real pain cannot be treated.
Been suffering from chronic pain for 4years. No insurance and can’t wk due to pain but now my dr can’t prescribe me anything because of laws changing. I can’t afford to go to pain mgmt. So I have to suffer, when i did nothing wrong and neither has my dr. I tried to commit suicide so now i have to see therapist at county life help center. The new law has really hurt someone like me, I am poor so I have to suffer. It’s not fair, I wkd my whole life I’m 53 and can’t take pain any longer.
I have 2 herniated discs 2 pinched nerves and 2 bulging discs all are separate discs plus I’ve got arthritis through out my entire body I’ve also got shoulder pain in both shoulders without my pain medication I would be in agony therefore I wouldn’t be able to live anything close to a normal life as it is with my medications there’s times when I can do somethings like go out I’m just not sure what I would do if the government took my medication away the options open to me are not something I want to contemplate
Pain has become a way of life . Doctors seem afraid to help . Telling someone to do yoga that can’t stand up because their feet and legs hurt so bad makes them sound like idiots. One doctor wrote on my paper work that I was bipolar and in a manic phase because I was so mad about the lack of treatment. I have Had Lupus since 1988. With that comes chronic fatigue. Manic phase? I wish !!!! It would be nice to have some energy! But now it’s in my records that I’m bipolar and I’ve never been diagnosed with that! I’m tired of hearing about the opioid crisis. They created it . The crisis we have is getting proper health care. I’ve been in pain for years, I’m not a baby, I deal with pain every day. When it gets worse what am I supposed to do? You can’t get pain meds because that would make you an addict . The pain management clinic said they can’t treat Lupus. I just fell and broke my arm. I can’t get to see the orthopedic doctor for a week so the emergency room gave me 14 pain pills. So 8 days with a broken arm with 14 pills ? And the sad part is they will probably give me a pee test to make sure I didn’t sell them .
My 74 year old dad died on 3/4/19 from a massive heart attack just 34 days after his doctor was raided by the DEA. My dad was an otherwise health man with the exception of severe arthritis in his back, knees and shoulders. He had no other health issues and was not on any medications other than four pain pills per day. He worked until he was 72 years old at which time he became semi-retired. With his medication, he was able to tend his yard and spend quality time with his family. Everything change on 1/29/2019; he was in excruciating pain, he wasn’t dressing daily, spent and great deal of time in bed and rarely left the house. It took three weeks to obtain his medical records from the DEA and on 3/4/19; my mom was driving him to the hospital for an MRI in hopes of finding him a new doctor when he had the heart attack. She had him at the ER within minutes; however the staffs hour long efforts were unable to save him. My family and I are convinced that the abrupt denial of his medication resulting in undo stress and excruciating pain are the cause of his death.
My husband continues to suffer from chronic pain due to arthritis in his back, degenerative disc disease and disc herniation. We continue to seek care for him. His quality of life is poor and it pains me to see him suffer.
I just turned 60 and have worked most of my life. I have mostly worked in someway as a Caregiver ie worked with special needs children, school bus driver, childcare and elderly and have loved it and i was good at it. A few years ago i could no longer fake it and hide the pain. I have a severe scoliosis as well as having my tailbone crushed. I am a cancer survivor and have had chronic pain for years. I started on opiates about 8 years ago. Now i have to see my primary every 3 months and answer a 4 page questionnaire and do a pee test. I am about to loose my insurance and will have to get another plan as well as medicare. I am scared to death that i will not be abled to get my prescriptions. I have never asked my dr for more never said i lost them never have tried anything to falsify my medical condition but really am scared.
My personal story X a million others it’s not important.
There is only one solution, you must start some serious lawsuits to make someone accountable for the war on patients. Until there is a 10 billion dollar class action lawsuit for denial of medication nothing will happen. Charge everyone and see what sticks, doctors politicians city’s state federal governments etc. when a giant lawsuit gets filled they have to start setting aside money for a potential loss, nothing else will get attention or get the war stopped.
Start taking donations and hiring attorneys it’s how our system works.
I am almost in tears! Finally God has answered my prayers, someone is finally hearing those if us who in order to live have to take OPIODS! Claudia Merandi and the Don’t Points Pain Movement is literally God sent! I was diagnosed with Cervical cancer cells in 2004 and had a complete hysterectomy! 2008 I was rushed to the hospital and given an emergency surgery because of severe stomach pain and was then diagnosed with something that I knew nothing about, Adhesions! After the removal of them and 3 hernias I thought I was ok but then my stomach started hurting again but this time never ending and found a Dr who then let me know that once you get Adhesions there is no cure unless you get another surgery to remove then and then they ALWAYS come back but worse! Adhesions mean my intestines are glued together! I cannot live a normal life and would be literally bedridden without Norcos! I still have yrs of the ability to work left in me but unless I have pain medication I’m bedridden! I’ve had to leave school out of town because I didn’t have the capacity to stay because I couldn’t get pain meds! I can’t go far from home for long, can’t work long unless I have pain meds! My son and family is suffering! CVS, Rite Aid pharmacies treat me like a drug addict when I go to have a prescription filled when I was able to get them! Drs treat me like a drug addict when I cry out for help! I don’t understand why they don’t understand that Adhesions mean chronic pain, Duh! I have gone from local Drs and pain management clinics to University of Michigan and the Drs at University of Michigan treated me so horrible that I was in tears when I left! I know of one story where a Man suffering from a chronic illness has a gun in his house that his wife and daughter didn’t know of so that when the day came that he couldn’t stand that pain he was suffering from became so unbearable that he was going to take his life! Ppl I know are resorting to buying pills off the street in order to function and live normal lives but that even comes with a price! I know of someone personally who has been homeless for going on 4 yrs and drives a beat up car because she has to spend ALL her money on medication so she can live a somewhat normal life! She had to resort to back alleys and dark houses to buy pills so she won’t be bedridden! It’s horrible! I have written to major networks and talked to anyone who would listen to no avail, they don’t understand the extent of our suffering, it’s hard to explain and Drs think it’s all in your head or don’t want to go to jail! We look normal in the outside while our bodies are wracked with pain 24/7! I know there is a God because of the Don’t punish the Pain movement! I am in 2 support groups on FB and sometimes the stories are so depressing for me to even read! There are 2 sides to every story and our side was being so grossly neglected until now! I would love to volunteer for anything needed one the State of Michigan to help out our cause!
I was diagnosed with prostate cancer. Before committing to a doctor, I told a particular doctor I had a really low pain threshold. I was assured I wouldn’t be allowed “to be in too much pain.” After the surgery, I told the nurse I was at pain level 7 out of 10 on Friday. It got worse that night, and I was discharged on Saturday. Sunday morning I was experiencing suicide level pain, and called for help. I was told, “Dr. Auge doesn’t like to give a lot of pain medication.” I don’t know how I made it through the next few days. I expect in May this “Dr.” will tell me I need more surgery, which I probably do. It will be a real effort not to smash in his face.
I really feel for those of you with chronic pain who can’t get relief. Mine was horrible.
Fortunately it only lasted 10 days. But after being assured I wouldn’t be in “too much pain” I’m really angry. It’s seems there is now a cult of pain. Doctors don’t care how much you suffer, as long as they meet their numbers. It’s almost like they consider us a video game.
I’ve been living in constant pain for 17 years. I had a partial knee replacement that failed, and
then my other knee began to have problems. Surgery wasn’t an option for either knee for various reasons, so I came to be dependent upon prescription pain medication in order to function in my daily life.
I am an older person, and I run a business from my home. I’ve tried many alternative methods of pain control, attended a weekly pain group for a couple of years, and follow all advice from my physician.
Ever since this current war on opiates started, my life and my pain have spiraled out of control. Every time I try and get a prescription filled – at the same pharmacy I’ve been using all these years – there’s some reason it can’t be filled! They don’t have any in stock, my insurance won’t cover it this time (?), I suddenly need prior authorization, etc., etc., etc.
And now my doctor is being investigated!! The most caring, diligent, intelligent and responsible
person I think I’ve ever met. She always offers ideas for lowering my dosage, as well as being an advocate for me and making sure I’m not suffering.
This opiate war is politically motivated. The outcome is that people who honestly need them for alleviating their pain are becoming so desperate that they’re contemplating suicide. I’ve thought about it. If my doctor loses her medical license or has to close her practice because of the administrative burden the DEA and the CDC are placing on her, I don’t know what will happen.
All I know is that the bigger crime would be for our community to lose a wonderful physician.
And for my family and friends to lose me.
I suffer from 2 broken vertebrae, and a herniated disc. I also need both hips replaced and have severe osteoperosis. Last April I got a shot in my shoulder for bursitis, and the doc hit my tendon. Now my left arm is almost useless.
I am one big throbbing ball of pain. And none of the doctors here will give pain meds. Tylenol doesn’t even begin to touch it. I’m so depressed, and can get no relief. Sometimes I feel suicidal, but I go to counseling and so far have been able to rise above it. My question to doctors would be how much of this can you stand? It’s like having a throbbing tooth ache all the time. They could never do it. Women are so strong. I’m only 66 and feel like I could have some quality of life if I could move.
20 years ago, I fell backward 15 feet onto asphalt. My neck was fractured, had a traumatic brain injury and a compression fracture in the thoracic area, lumbar fracture, both my feet had bones on the top fractured. I now also have osteoarthritis, spinal stenosis, fibromyalgia, bulging discs, etc. Before this fall, I had been treated for severe depression. Chronic pain and depression are a deadly combination. The only hope I have is to have the pain treated enough so I can function. Living in pain this much now that my meds have been tapered is very hard. I just want to function for what life I have left. Is that too much to ask?
I’m a 62yo Registered Nurse who is now on disability. My specialty was ER-TRAUMA. I said years ago this would happen some day to legit pts. All the addicts we saved. Believe me they were NOT happy! I ruined their high! Ha almost dead. I am a chronic pain patient & I live alone. I may not need my pain med for 2 months sometimes. Then I may be in agony for a week. I take them as directed. I have to as I at least get around my apartment. Pain lessens, I stop taking them. I have lived with a pain score from 4-5-6 for YEARS!! I can’t remember what it’s like to be pain free anymore so this is my ‘normal’. I don’t take my pain med for this. Only when it’s intolerable 8-10. You couldn’t live with my pain level!!! You’d be begging for medication!! Don’t think you’re special & you wouldn’t!!
There are those of us who take personal responsibility seriously!! When you have chronic Pain you don’t experience euphoria!! You’re lucky if it takes the edge off!! Only addicts experience euphoria!
We need our medication to function as human beings. Don’t we deserve that right???
We are collateral damage & the government should NOT be interfering in MY Dr patient relationship!!!!!
Patients with broken limbs can’t get the Dr to write prescription as they’re afraid of repercussions!! Let me break your leg like I have. You’d be begging & carrying on like a baby! It’s the law you want to make permanent. It will effect you or someone you love!
I know there are bad Drs, I’ve worked & had to over ride at times.
You people want to go after all physicians!! Go after the bad ones!! Don’t lump them all in the same category which is now the norm!!
When I was 14 I found out I had tethered spinal cord syndrome and had my first back surgery. At 15 I fractured my back at L5 while cheerleading. I had to have surgery (my second back surgery) at age 16 to have bone removed from my hip and placed I my back. I wore a bone growth stimulator for three years because I had to have a third surgery when my second surgery didn’t take. At age 18 I had my fourth back surgery to remove bone spurs that had overgrown causing me significant pain.
I am now a 25 year old female who is trying to live with chronic back pain. I’m have fibromyalgia, early degenerative disc disease, spinal stenosis, a herniated disc, and constant back spasms. I currently live in a city in Kentucky where the opioid epidemic is out of control. I get scolded by the pharmacists every time I go to pick up my pain medicine even though it’s prescibed by a pain management doctor. They don’t know my story and they don’t care. They just see me as a junky and think I’m addicted to pain pills even though I’ve been taking them for ten years and have never once abused them. I started crying when I saw this movement existed, it’s just so nice to know I’m not alone.
I have RSD/CRPS I hurt every day all day please help me keep my mefs
My pain journey started at the age of 45 with extreme pain in my hips one night while in bed. I talked to my gynecologist about it since I was basically healthy and really only went to him. He put me on antidepressants and said it was my age and my job. One evening the pain in my hips was so extreme I went to the ER. They did X-rays and said nothing was wrong and made me feel as I just wanted pain medication. I really just wanted answers.
I noticed the pain started to travel to different joints. It came and went so for a year I just lived with it.
Then I moved to Tampa. I was starting to have more pain more migraines and was exhausted all the time. I finally found a doctor and the first visit I broke down in his office. He said he wasn’t sure what was going on but he was going to find out. The first blood tests he ordered showed my thyroid hormone was low. He sent me to an endocrinologist. After an ultrasound on my thyroid and more blood tests I was diagnosed with Hashimotos and 5 nodules. A biopsy showed noncanserous, thank goodness. But my ANA was also high and after being on thyroid medication for a few weeks my symptoms were not getting better and the pain was increasing. I was also experiencing my left hand going numb now. My doctor sent me to a rheumatologist and an orthopedic doctor. After several more tests and an MRI of my neck, I was diagnosed with SLE (Lupus), APS, and my spinal column was being pinched from a degenerative disk. I had surgery a week later with a C5-C6 fusion. Also started treatment for Lupus and APS.
Next my knees. The same orthopedic doctor ordered MRI’s of both. I was then diagnosed with chondromalacia patella in both. I’ve since had one failed micro-fracture surgery on one. Now they are both bone on bone. Waiting to find out what is next treatment for them.
I also have bulging disks and pinched nerves in both my cervical and lower lumbar spine.
I have tried physical therapy, I’ve had more injections than I can remember. I’ve had surgeries. I’ve gone through having my knee drained when it was so swollen I couldn’t move it. I’m am diagnosed with anxiety/depression disorder on top of it all. But who wouldn’t be I suppose.
My life was literally torn apart. I isolate. I have almost no enjoyment or interest in the things I use to love.
For the years in Tampa I was treated with dignity and compassion from all of my doctors. My disease, disorders and illnesses were treated and so was my pain. I went on disability. My husband then decided we were moving back home to the panhandle of Florida were my daughters and granddaughters were for help or at least to be near them for my happiness. But my new doctors would not refill my pain medication I had been on for years after it ran out. And now my primary is tapering me off my anxiety medication. I am back to having zero quality of life. The pain is real. I have the records and images to prove it. I was approved for disability on my first filing without ever being made to see their doctors etc. They said my Tampa doctors kept very good notes and I didn’t have to. It was all there in my records and images. For that at least I’m thankful. It helps financially for all the doctors and hospitals and bloodwork and MRI’s.
My life is my family. Without them I wouldn’t want to be here anymore. Nobody should have to live this way. I’m not an addict. I’m a patient. I took my legally prescribed pain medication as prescribed for years. Now nothing….
Thank you for letting me get this out. It’s been a lot to go through. I am 52 now and feel my life should be worth something more than this.
15 years of chronic pain from degenerating discs. I was on perm. disability for majority of those years, but with the help of my internal medicine doctor and her reassurance that pain medication would be available I was able to return to work. She helped guide me to a more functioning life using pool therapy, physical therapy, cognitive behavioral therapy, etc.. End of last year the bomb was dropped and I must cut my pain medication therapy by 50%. The worst part is they have taken me off long term pain medication. I recently was written up at work for missing days and not being as productive. Kaiser is requiring all pain patients to fit in the same box, no matter what…I wonder if I can get back on disability…ha, ha good luck.
Before my life changed I had been at my job for 15 years. I enjoyed life, working music festivals with friends, camping, hiking, potlucks and crafting parties. I was social and outgoing. I had a dream of finishing school and becoming a hospice RN.
Then in January 2016 I started feeling really bad. Like I had the flu all the time. I went to the Dr every month and he had me do labs. My white count was creeping higher and higher. Then in June I went into SVT for 15 hours. By October I had lost 40lbs, had zero appetite, debilitating gut pain, food and water were being regurgitated, I had developed SVT and AFIB, was running low grade fevers and my white count was high.
My Dr retired, and I got in with a brilliant Dr who was not accepting new patients, but saw my situation, and became my saving grace. I had already been seen by the oncologist (high white count), GI Dr, and due to being 8 hours from any big city or the cool technologies they have in them, was undiagnosed.
This new Dr sent me to Stanford GI and Neurologist. The GI specialist diagnosed me with Type 2 sphincter of ODDI dysfunction, gastroparesis, and achalasia. The neurologist diagnosed me with a autonomic dysfunction that makes it so I can no longer perspire, is the cause of my arrythmias, my gastroparesis and my ODDI dysfunction.
When I got back home my Dr tested my blood and sure enough It showed that I had a mycoplasma infection, the one my neurologist suspected went to my brain wreaking havock on my autonomic system.
I can handle the 4/10 pain from any food ingested from the gastroparesis. What was making it so I could not work was the constant spasming of my sphincter of ODDI.
I had my 1st attempt at a ERCP with sphincterotomy at UCSF in Oct of 2017. The Dr could not get very far and I ended up staying in hospital for 7 days due to getting pancreatitis, which is a side affect of the ERCP.
The Dr tried again in Jan of 2018, but again could not fix due to what he called “complicated anatomy” and had a pain specialist come to my bedside to talk options with me.
They convinced me that I would have great success with a double lumbar spinal block. Well, that was a nightmare. It was so painful, they hit nerves on both sides and even thought they punctured my lung.
Today I still have horrible ODDI pain and I get pancreatitis flair up’s all the time. I will be living with this the rest of my life.
I went back to work in July of 2018 after being off a year to deal with all this. My Dr told me people in my situation go out on Dissability, but I felt like that was giving up. I have missed so much work since being back I am a sick call away from being fired.
My pain meds make it so I can function or not end up in the hospital. They make it so I can get out of bed and sew, or work, though that is coming to a end soon.
My Dr told me about this Dont Punish the Pain movement, and gave me a flyer. She has them in her office.
I just lost my primary insurance and needed to go to a new pharmacy because of it today. They would not fill my pain meds today. They didn’t even care to speak to my Dr. CVS thinks I am a drug “seeker.”
I would rather kill myself than go to the streets for pain relief. It’s miserable living in this body, and the 4 pills I take daily make it so I can at least have hope. If my Dr could no longer Rx or the pharmacy’s cut me off, I would eventually kill myself.
I been on pain meds sence I was 16 after a spine surgery .I now am 37 been titrated off 7o% of my mobility enhancing pain meds my MME going from over 2oo to lower then 5o.I have been under Dr care for 21years had 4 spine operations have 9 levels of my spine screwed together with broken metal rod! Need 2 more procedures at least but I’m to heavy to have the operations and to immobile by pain to loose the wait to qualify .
My pain is probably much less severe than others who live with excruciating levels. Still, both hands are arthritic and without the medication I was prescribed, I would be non-functional at many of the tasks most people take for granted. The particular medication seems to be custom-made for a patient like me. It is effective, it allows me to use my hands for almost anything I desire to do (which, in turn, wards off the progression), it has no noticeable side effects, my head is clear, and I have not had to increase the dosage in six years. Nothing else is quite as effective. I am 70 years old and have accepted my physical addiction, am more than willing to stay medicated for the rest of my days, and perfectly willing to sign a waiver saying as much. Yay!
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.
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!
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.
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.
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.
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
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.
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.
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.
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!!!
Anyone considering surgery in 2019, better think twice. I just underwent major trauma surgery as a cpp & was treated no different than someone with a sprained ankle. I’m not exaggerating here.
This has gotten so far out of hand. This even traumatized my family. The shenanigans that went on left us speechless & in shock. I had to fight for adequate pain control. I’ve never cried during hospital admissions in the past (multiple surgery history)but I’m sure at some point i will easily be diagnosed with ptsd & coming from a military family; i dont say that frivolously. I cannot describe the feeling of being looked at like a junkie & begger while suffering & being at the mercy of my “care-givers!”
I have struggled with chronic pain since childhood. My mother used to take me in to Doctors who diagnosed “growing pains.” It was not until I was married that I realized everyone did not go to bed at night because the pain was no longer bearable. What this is not normal?! I still do not have a diagnosis for why but finally found a doctor that support a low maintenance level of opiates. Now he is being pressured to cut me off. I have struggled with sleep from the pain for most of my life. The thought of going back to my old life is truly frightening.
I have had every other drug imaginable prescribed without results. Also, I trust opiates because although for some they are a problem, like alcohol is for many, it has been used for hundreds of years. Unlike say, Vioxx that killed 60.000 people before it was taken off the market.
I wish someone would do a study of how many people give up and suicide because they can not live with the pain anymore. I wish people would remind doctors that they are to try to alleviate suffering.
My name is Julie Killingworth. I am 49 years old, born and raised in New York City. I have a rare, incurable disease called Sarcoidosis. It is very painful and causes immense suffering. I have several secondary afflictions to my primary including Interstitial Lung Disease, a rare fatal lung disease. The most limiting is Hypercalcermic Crisis, a complex metabolic storage disorder where Sunlight converts to the wrong Vitamin D causing calcium to build up in my bloodstream. Calcium Intoxication first symptoms interfere with cognitive abilities and without narcotics to keep myself alert and while I endure the grueling task of detoxing I could easily die from Vital Organ failure from Calcification. My afflictions are so rare I am the expert on staying alive and frankly sane since I must spend much of my life alone in a dark room. My husband has left me due of my extremely limiting and relentless disease and I have no children. I have known that my life will be short but I was ensured comfort that has now been reneged over this narcotic hysteria.
Sarcoidosis is known to mimic Cancer so much like Oncology if I see an expert for my disease their aim is remission. They are not pain manage and will not treat pain and suffering. My complex pharmacology doesn’t qualify me for pain management. I had to pay a small fortune to a psychopharmacologist to have a custom made narcotic regiment. Last year I attended a Sarcoidosis patient conference at NYU Lagone and listened to some of the most medically superior super-specialists speak. If I choose immunosuppressive drugs, such as chemotherapy, I’d be in excellent hands but that is not what I want. I’ve decided to refuse extreme measures that may slightly prolong my life but it is exchanging one misery for another. I find myself in a terribly unfortunate position on the slim chance I survive deadly withdrawals of becoming invalid in agony or taking my own life. There is no doctor willing to treat the pain and suffering of my disease for fear of the DEA and the onslaught of anti-narcotic policies. The human suffering I endure should make me infallible but there are no exceptions anymore. If I do not get a pass I cannot imagine how bad it is for people who have more common incurable afflictions.
It is illegal and inhumane for citizens to be forced into undue suffering and financial strife simply because it’s unfashionable to be incurable in this age of narcotic hysteria. I do not want or expect unlimited narcotic access. I just want to continue my regiment to exist with the ability to do the hard work required to care for myself as long my disease allows. No more, no less. I will always be in various level of discomfort peppered with the occasional agony. I’ve been through the diagnostic medical gauntlet for over a decade saw no evidence of physicians over-prescribing. In fact, NYC is a notoriously opiate-conservative town. Nowadays, physicians will no longer prescribe even medically necessary low dose narcotics. They’ve been spooked, threatened with losing their financial assets and possibly their freedom. The policy of offering only one barbaric miserable expensive treatment option is both a violation of the Nuremberg Code and the Belmont Report, as well as fitting the crime of Depraved Heart Murder. We are in a government made humanitarian crisis, which in my view, will make the death toll any opiate crisis that precipitated it seem minuscule.
Addiction Psychiatrist is one speciality I know I’ll never have to see for Sarcoidosis. There is a group of them from an organization called Physicians for Responsible Opiate Prescribing along with their cohorts whose goal is to discontinue all narcotics prescriptions, except for the one they avidly promote called Suboxone, a potent opiate with a 21 page warning – it was never intended for afflicted bodies. They has been granted full authority by the Center of Disease Control to design the pharmaceutical and treatment policy needs of the entire nation; a task none of them are qualified to undertake. They are, as evidenced by their actions, attempting to sneakily convert vulnerable citizens afflicted with horrible physical diseases into drug addicts using their puedoscience. It is an abomination that an innocent American citizen born with bad genes or had bad luck is forbidden the same legal and constitutional right given to a serial killer on death row to appeal a cruel and unusual death.
There must be some intervention to save my life before the last doctor willing to treat me retires who is 94 years old. I cannot force a new physician to treat me since there was no contingency plan for people like me. This is the worst violation of human rights in over 100 years and the worst medical crisis in American history because it was done on purpose with malice. The DEA is behaving like Chilean Caravan of Death waging war against incurable disabled and the only people qualified to save our lives. They are committing international crimes against humanity with impunity because of those vicious CDC guidelines. The CDC put a disclaimer on the prescription guidelines that they are not held responsible for its content. I must warn them and all responsible there is no disclaimer that exempts anyone from GENOCIDE in an international tribunal. I refuse to accept this continuing Diffusion of Responsibility for lawmakers. The “unintended consequence” excuse is simply absurd. How can an entire governing body continue to claim reasonable plausible deniability that they didn’t know incurable disabling affliction existed? If policymakers did not know then they don’t deserve their privileged coveted seats.
Lastly, I would like to mention that unlike drug addicts who exist on the fringes of society incurable disabled people vote and have become a single issue voters. No matter what occurs I will manage to live to cast my vote against all lawmakers who ignored and magnified my plight.
Thank you for your time and consideration in this very dire matter.
Sincerely,
Julie Killingworth
Dear Julie Killingworth,
Do you currently live in New York?
I am on the east coast too. If you’re able to travel a bit north we should talk. I wish I knew how to contact you. I hope you see this message. Please find me on Twitter under the account name Stop Bad Doctors. I will be looking for you. In the interim, you’re in my prayers and thoughts.
Julie: I wish I had words of encouragement in this pseudo od crisis, but I do not. It’s time for all of us to face what is really going on. I’m so sorry.
We have to accept & come to terms with the reality (& yes keep trying re: writing to law makers/senators & telling our stories: it can’t hurt). There is some other nefarious agenda at work here. The rationing of medications & inhumane treatment of our nation’s defenseless is; well there is no logical excuse. We are in the age of police state medicine, government dictated medicine, and/or the criminalization of medicine. My family is so scared we will be targeted now due to our protestations during my hospital admission. Socialism at it’s finest.
You cannot rationalize this catastrophe no matter how you look at it. I refuse to call it: “UN-intended consequences!” I’m sure every intractable CPP will attest: we do not expect to be pain free but when all else fails, the humane thing to do in any society is to make us comfortable until we die. Cancer patients are supposed to be treated as such but even they are being mishandled. The stories (I know to be true now) or horrific!! The only difference from a pain standpoint in some cases is we suffer longer with pain unlike the terminally ill cancer pt. More the reason to ease suffering. Addiction/dependence [we know the difference]at this point well its a moot one at best. Common sense has gone out the window.
The truth is out & even though the CDC/FDA & heck I’ll even throw in the DEA, would make bold statements by PSA etc & send letters to every physician across the country imploring doctors to treat, ins. To cover, & pharmacies to fill; it would not make a difference. Dr’s are afraid of asset forfeiture & worse yet: incarceration. The proverbial jeanie cannot be put back in the bottle.
So what to do? Suicide should not be an option imo, illegal drugs or dying in ones bed slowly- suffering is not the answer either. These medications were put here for a reason. Jesus’s ministry surrounded healing the sick & in-firmed. Morphine was a God-send on the battlefield-during WWII. I’m afraid what we might be seeing is mass exodus of cpps to a life of an expat. We are without many choices. I say this all the while I’m writing my Senator(on the cp committee )for a face to face meeting explaining my torturous hospital & surgical nightmare, but it’s a last ditch effort. I’ll keep you in my prayers. We need a miracle.
Was cut off a specific pain Rx med had used responsibly for 14 years, no other dr I would fill the medication insisted that a new med for addiction would help w/chronic 24 hr a day pain wd be the drug of choice. There were decades of medical records no one ever suggesting I had a problem with abuse only the medication was working fine for me that I was on. I was able to work take care of my family my animals still had relationship with my husband and yes I had breakthrough pain still but nothing that I couldn’t handle and still had quality of life and will to live. Tried the medication from the pain center and became so sick and vomiting I had to stop work, get rid of some of my animals, have not attended church since.
Absolutely no desire to do anything with the constant pain. My children are depressed when they see me cry. Very young adults but they know there’s something very wrong happening to have my medications taken away. But they don’t know something my husband knows – that I have no will to live now. I think they may guess it but I haven’t the nerve to tell them. I had been thinking to myself that I would have to feel much better dead!!! I stopped taking that horrible medication and I felt like my skin was crawling and that someone was coming after me. Between that and the pain and the depression I almost ended it. My husband started talking to the insurance companies but there was nothing they could do, I would have to find my own doctor. He said there was no time for that, then I was in to bad of shape, couldn’t tolerate the pain level due to a car accident 25 years earlier and one of every bone broken below the neck. All kinds of internal injuries: I ripped and shredded esophagus, was 75 stitches compound fractures, I shorten femur left my leg an inch and a half, short joint replacements, bone graphs, rods.
I went to an emergency room they would not give a prescription for opiates but just referred me to a clinic. So then for the first time in my life that I’ve ever had what I call an illicit drug because it was no choice of mine, I was forced to. A place for addicts to take a liquid med I had never heard about that helped my pain but inflamed my esophagus and gave me heartburn every day since. After making phone call after phone call to change the hell I was living in and where 89% of patients seen there had some type of genetic addiction. I am so hurt and bitter from this being forced upon me all because of these field guidelines that force suffering death and suicide on all the rest of us. The doctor that I was referred to would not write the prescriptions. He only wrote for a few months and got scared, so he just stopped again – discontinued everything. So I went to the hospital and reported him, and they are doing a risk management against him for putting me through this. I’ve since talked to an attorney after reading on different pains. They decided I was a candidate for opiates because they had helped me for so long and I was able to work and take care of everything and now I’m not.
Most of the people I know they got their medications taken away have no will to live just like myself. How can anyone listening to this see any fairness? Even if you don’t believe what I’m saying I have medical records. I had a doctor that had no problem with me for 14 years and now this is what I’m facing for absolutely no fault of my own. Chronic pain patients are not addicted just because they depend on a narcotic just like almost everyone does after surgery or before surgery. But only we have diseases and injuries that cannot be fixed by medicine or more surgeries.
I believe that the government wants us dead. I believe they get rich off of the medication that they are pushing on everyone when they take away the opiates. Why can’t a responsible person step up and speak up to defend us so the doctors can go back to being in a relationship with us, to help us and follow their Hippocratic oath?
Please in the name of human rights and compassion listen to us talk to us in person help us I beg you. We’re just going to start killing ourselves and then our families going to be going through mental health problems. This is never going to get better please help
My life is hard. I’m in pain every day, all day. I’m to where if I’m not at work I’m in bed. My condition is only worsening and I would like to feel human again, but when our doctors are threatened by Big Brother about my and other pain patients life-changing meds, life gets bad.
I can work and do my job well with pain meds, it’s seriously harder without them. I can contribute to my household with more focus when my pain is treated, without pain relief it’s exponentially more difficult. OTC’s don’t make much difference to my pain level, often not even noticeable. I’ve tried natural remedies that didn’t work and were more expensive than a prescription. I am not an addict, nor am I a druggie. Cannabis is legal where I live and I don’t use it either.
The majority of chronic pain patients are people that just want to lead an actual life, opioids add quality of life when it hurts just to turn your head. I couldn’t turn my head for actual years until I became medicated. YEARS. People should not feel excitement because they turned their head, or because they managed to raise their arm above their head. But this is how we live, opioids allow us to turn our heads, tie our shoes, comb our hair, maybe walk with our children or dogs. This is the chronic pain sufferers life.
Please stop victimizing and villainizing chronic pain patients. We are just people that would like to have some quality of life. We have been targeted by this false “opioid epidemic,” and are suffering the consequences. Our nation has turned it’s back on our Veterans and it’s citizens that are in pain that is usually controllable with opioids, and we are dying as a result. We are dying.
Please help us.
I’ve tried every remedy I could find to treat my chronic pain. Many that are more invasive are not covered by insurance and too expensive out of pocket. It’s so bad I can’t even work anymore. I grieve the old me who loved to work, hike, socialize and do everything people take for granted. It took over a year to find a physician who would help me. We were managing together until recently when access to opioids got more difficult. I’m in fear every day that the only thing that allowed me to get out of bed and to my appointments will be taken away.
I’m constantly judged and criticized. I can’t even manage self care but once a week if I’m lucky. I’ve never once abused medication, I only get enough of the edge off to attempt to see my doctors, do one productive thing a day and to keep hope that one day there will be a cure or treatment that allows me to rejoin society again. To smile again. To survive!
Doctors are refusing to treat us for fear of being flagged by the FDA and investigated or charged by the DEA over misapplication of a GUIDELINE. Meanwhile people like me are being abandoned (which is illegal, malpractice) and left to suffer inhumanely until we just can’t take anymore. I don’t want this life but it’s the one I’m stuck with, despite endless years of efforts from teams of professionals, trials, surgeries, etc. My only saving grace is opioid treatment and my very life is threatened by false statistics and widespread fear tactics.
I’m so sorry for anyone who relates and USA going through their own crisis. No one should needlessly suffer and be punished for their pain. All we want is relief and respect. I will not be shamed and I will not give up! Don’t Punish Pain! Thank you for allowing me to share!
I’m 50 years old. I was born with hip dysphasia. I’ve had pain my entire life. I managed to deal with it all the way to almost 40 years old. From the years of 18-35. I was in 8 car accidents. I’ve been diagnosed with RA, ankolysing spondylitis, had a recent positive lymes test, im supposed to be on psych meds and I need some help with my pain. Im up for DAYS at a time! All I can take is Tylenol. I started having reactions to nsaids. It’s raining today and im at my wits end. I need help. Period. No doctor will help me. Lubbock tx
Hi my name is Chris and I suffer from chronic back pain and I have been taking my pain medication responsibly for over 10 years and it has been a constant struggle to get the medication I need to live a somewhat normal life. I’m tired of constantly being treated like a criminal and wondering if I am going to be able to get my medication the following month. I have 2 children and a wife to support and if I don’t have my medication it is physically impossible for me to work. My medication has been cut back to an amount that leaves me in severe pain even after I take it. It’s no fair that the responsible people in this world have to suffer because of the criminals. The government needs to stop harassing the doctors and responsible patients and go after the criminals.
@Anonymous 5/7 You may be correct about the government wanting pain patients dead. The government has been reporting for years that the largest population group will be the aging and the ill. Since these groups are no longer contributing in the way of heavy consumerism and taxes but costing the government a lot of money in healthcare, it makes a certain sense to eliminate them. Could it be the replacements are the ones freely coming through the boarders being to dispersed throughout the country, young and healthy for working and procreating for future needs?
I was a hard working person my entire life. Some years later someone else caused a car accident. The accident destroyed my back. I ended up in a wheel chair and couldn’t walk. After multiple surgeries and hard work I was able to walk again but not much compared to before the accident. I was also in a lot of pain. The doctors tried everything they could do to help but nothing worked and my pain worsened. The doctors said the only thing left they could do to help was to prescribe pain medication. The medication did take down some of the pain to where I had some quality of life. I took the medication for quite a few years without any problems. Then one day my doctor says he got the order from his superior to stop prescribing my medication and start taking some kind of new pills. Those pills didn’t do anything but give me a headache. Then he said they were only going to be giving back injection treatments as an additional pain control method. My doctor said he was sorry that he couldn’t help me anymore. I went to the ER and they helped me one day with medicine but the next time they didn’t help me and said I couldn’t come back. I stop taking those awful headache pills. I started drinking alcohol though it doesn’t do much of anything other then relax me but it’s better than those awful headache pills because I’m in pain anyway. I’m not sure how much more I can stand the pain. Each day is getting harder to stay strong . I fear that I may have to give up since I can’t get pain relief and I don’t know when they will ever allow me to get it again. Maybe the previous poster is right. Maybe they do want us to die.
Three years now of NO PAIN RELIEF after I turned down switching my good acting low low dose pain medication for something my doctor had just received license for dispensing but was manufactured for drug addiction. When I turned it down I thought my old tried and true relief would be re-prescribed but it was NOT.
I suffer from spinal disorder too numerous to list and whole body burning neuropathy. I had every other mode of treatment, i.e., acupuncture, pt, 100 steroid and nerve blocks combined, tens machine, massage, etc., and every kind of pain medication available before settling on one my doctor said I would have to be on for the rest of my life. I never once asked for a refill ahead of time or an increase in dosage… matter of fact, I voluntarily asked to be removed from a long acting version of my pain med and only got relief from the other version that was for break through pain in my own effort to minimize using these meds. Long story short and 4 doctors ago, my relief was ripped away from me.
It’s been 3 years of HELL and back to being housebound and often bedridden. Apparently my name is on a blacklist somewhere as a drug seeker now and I rarely even reach out to any medical ‘professionals’ (using the term lightly), any more. I know the inhumane drill now, don’t mention pain or you will immediately get humiliated and shut down. I am angered even when I see that people in pain are only worried about their doctor doing this to them and they still have some form of relief. They have no idea what it is like to have NOTHING to help you function somewhat and enjoy your family or even sit to watch tv for 10 minutes.
All my doctor will agree to treat is my out of control blood pressure, but he will not equate the dangerous rise to my constant near #10 pain level. There is nowhere and NO ONE to turn to so I just quit getting medical care. I can’t really take matters into my own hands or make my own plan of escape from pain, because I love my family too much to do that to them. So, I agonize and wait for the Country’s CDC, pharmacies, insurance co.’s and the medical community to come to their senses, but I really don’t have any hope left that they will, because in order to do so they would have to admit that the are part of this gross inhumanity and genocide of Americans… mostly those who are older, have one or more chronic PAINFUL diseases and are at retirement age after working their @$$*$ off most of their lives.
I am NOT an addict but I am in severe pain… I have not turned to alcohol or illicit substances to cope!!!! I ask for nothing but to be treated humanely, but there are no takers who even care beyond their own license or wallet. I also know of people who worked really hard at throwing their lives away to illicit street drugs who now get monthly pain relief prescriptions from their doctors that they don’t even need or use… they sell them for profit along with their excess food stamps that they don’t need or use as well!!!! Only God sees my suffering… but to all who have caused others misery, harm and death… God is watching YOU TOO! I give up!!!
Thanks for an agonizing NOTHING!
I have suffered from 4 incurable chronic tick borne illnesses for decades. I’ve been mostly bed ridden for 16 years and I have horrible pain almost everywhere in my body. Until a few years ago I was able to get relief through narcotic pain management and this allowed me to get around for a few hours each day. Suddenly, I was radically cut back from the amount I was consistently taking for 10 years to 1/4, then 1/8, then less than 1/10th of my normal pain medication, and since then I cannot get out of bed at all. My pain medication at that level was useless and a few months ago I decided the strain to go to the doctor’s office each month was not worth it as it caused me more pain than I received in relief. So I just decided to quit all pain meds. I was genetically tested years ago and it was determined that I am a rapid metabolizer of opioids. The current limit of 90mg morphine equivalent per day is a sick joke for anyone with chronic pain and especially on someone like me. I would desperately like to go to the rally in Annapolis. I used to go to the State house in Annapolis to battle legislation a lot when I was younger, but it would kill me before I even got from the parking lot half way to the state house these days. With severe neuropathy in my legs/feet I can’t stand or walk without significant pain medication. I will be there in spirit with those of you that manage to attend. I’d be willing to bet that many more like me that wish they could go stand up for our rights simply cannot make the trip because they sit home in agony.
My Life On Pain Management! It’s awful and EMBARRASSING! I feel ashamed that I have to go to my Dr every month to get medication just to live a halfway normal life! And once I get to the Dr’s office I feel like I’m bothering him. I’m scared to ask him a question or tell him I hurt MORE or the medication is NOT working because I’m scared he will fire me!! I don’t want to live like this anymore. Sometimes I wish my spine WOULD just break, maybe I wouldn’t feel anything anymore. Feeling NOTHING has got to be better than feeling this! I’m SO tired of explaining my pain to my Dr. It hurts, It aches, ALL the time! It makes me mad, puts me in a bad mood, makes me cry, honestly I just want it to end. And to know there is Medication I can take that makes me feel better, live as normal as possible but I CANT take it, or if I do I have to go thru hoops to take the MINIMUM amount, makes me feel like NO one cares. I really wish I didn’t have to go thru this. I wish I could go out and run, play with my kids, BE happy! But I can’t…I live with chronic pain after 3 back surgeries and can’t get adequate pain relief and medication to control it!! It’s an awful way to live! I have NO idea why my government thinks they know how to treat my pain? Whatever they are doing NOW is NOT working! I feel awful!!! On most nights I lay in bed and pray I don’t wake up. So whatever they think they know it doesn’t work for ALL chronic pain patients! I just want options!! And to not feel like a criminal EVERY time I go to the Dr and the pharmacy!
I have been a chronic severe pain patient for over 20 years now. I rely on my medicine, almost 100% opioids, to keep living.
As long as i can keep getting pain medication, I can continue working and provide for my family. I am not at all interested in getting high off opioids. I wish I did not need these pills.
All that I want is enough relief so i can live. If I lose the ability to obtain the medication I will live what time I have in unspeakable severe pain. I would not be able to work.
I just want what I need to live. I suffer from scar tissue wrapped around nerve roots where i have had disc fusion surgery. Those places plus the multiple joints destroyed by arthritis leave me with no option but to take opioids to continue to live.
Please do not forget there are people who have 100% legitimate uses for opioids. We need these medications to continue to live. Do not punish the innocent people who need these pills. Punish those who abuse the pills not everyone who needs the pills to live.
MY SOLUTION,,,,,,,,,
Same old story, many operations, opioids made life bearable, doctor took medication away, leaving only three choices,,,,,
One, street drugs
Two, suicide
Three, Leave the country
It makes me cry, knowing that most people only have the first two choices.
I’m 69 years old, with some retirement income, and a small amount of hard earned savings,,,,, and a lot of guts.
My wife and I sold and gave away EVERYTHING, house, cars,,,,everything. We said goodbye to friends, family, and even our beloved cat, buddy. ( we couldn’t leave until we found him a great home, and we did. )
I realize not everyone is in a position to escape this horrible, cruel, lunacy, but if I can help just one person, maybe my life has some meaning.
We are not rich, but now that we don’t have a car, or the many expenses it takes to live in the U.S. we can afford to live overseas.
I took all my prescriptions to the pharmacy, and asked them to recommend a doctor who could prescribe them. They did. Why other countries have more empathy than my own, is mind boggling.
I have been prescribed my life saving medication in three different countries, England, Portugal, and South Africa. I hope this post will help someone. To the tens of thousands of fellow pain patients, who cannot leave, I wish you well. I hope you can somehow survive, until, hopefully, sanity returns. Best of luck, I wish I could help you all,,,, Stan
21 years ago, in 1998, I survived non Hodgkins Lymphoma. My consolation prize is chemo induced painful peripheral neuropathy in my left leg. Over the years i have tried many opiod medications, adjuvant medications, invasive procedures like spinal stimulator and when I lived in Florida I tried medical marijuana (it did not help)
The only medication that allows me to function is an opiate medicine that the addicts love.
I do NOT get High. At all. What I get is PAIN RELIEF. Not 100% but enough to cope with the nerve pain.
Over the years i have been able to obtain my medication fairly well. But of course the last few years, I have had to sign pain management agreements, I am subject to random drug screens, random pill counts, monthly doctor appointments and getting refills now can only be done One Day before the prescription runs out. This itself creates anxiety and stress. The pharmacy may be out of medicine. I may have a family emergency out of state. Or even, I may want to go on a vacation! Everything has to revolve around that refill date. Its become ridiculous.
This is my life now and my prize for surviving Cancer.
I wish Tylenol worked. I wish I didnt get cancer. I wish I could still work (I was practicing internal medicine).
Cancer took a lot away from me at Age 37. My livelihood, my medical practice, my ability to walk pain free or even sleep pain free.
I AM A PATIENT. I AM NOT A DRUG ADDICT .
Stan: there are more like you than you might realize. I’ve been researching this “option “ extensively. We’re getting desperate.
When this entire nightmare began, I was too afraid to contemplate this, but after Having bones broken & sawed & offered minimal pain relief (long story) it’s looking like a realistic & necessary alternative.
This isn’t something, personally: I can do just yet. We are researching South of the U.S. What are your thoughts on these areas? Thank you for posting this info. & keep advocating from a position of freedom & strength. You helped me (-; Happy for you!!
I went through treatment for Stage IV esophageal cancer. After that I nearly died of malnutrition because the radiation damaged my esophageal tissue and a big growth was blocking my esophageal opening by 97%. I tried to survive by drinking ensure but it wasn’t enough. The Dr had me on Fentanyl patches and Dilaudid at that point. I got down to 114 pounds and required a feeding tube at that point, as I became too weak to walk unassisted. After three months of tube feeding, I became strong enough for a major esophageal surgery which I had at Spectrum’s Meijer Heart Center. The surgery took 8 hours. I was in the hospital for 6 days, getting a healthy does of Dilaudid every 3 hours and I also had PCA clicker. Which delivered more Dilaudid every 8 minutes. I was kept comfortable, I was walking around and after 2 days began eating real food agIn. The Dr gave me pain meds for 2 weeks after I left and then every hospital in Grand Rapids became opioid free zones. No narcotics after surgery.
After a month of total agony, unable to find a Doctor anywhere in my city willing to prescribe opioids, I desperately got in to see a Suboxone Dr. He told me I wasn’t an addict and didn’t meet the criteria for his program but he would treat me anyway, because what Spectrum did was wrong and unethical. He said he and his staff would try to find me a pain Dr. It took them six months but they found me a guy. In October I began taking Morphone ER and Lyrica. Everything has been fine until my appointment this week when my Dr. Cut my dose in half and told me he can’t prescribe anymore. He said the authorities told him my prescription weren’t justified. I’m already in withdrawal and suffering and when these run out things are going to be worse. I have no one to advocate or help me. I have no car. There aren’t any Drs in Grand Rapids who will prescribe opioids.
Our friend had a very painful open heart surgery and was only given Toradol and Tylnol for pain. My friend accidentally cut his thumg off with a table saw. He received nothing for pain during the sewing back on process or after they offered him Tylenol. They told him their hospital has no opioids on the premises. The world has gone insane.