Share Your Pain Story

1,000 Replies to “Share Your Pain Story”

1. 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!”

2. 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.

3. 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

4. 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.

5. 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.

6. 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

7. 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.

8. 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!

9. 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

10. 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.