Tell your story of living with chronic pain, by leaving a reply at the bottom of the page. Do not mention specific medications or dosages. Stories are not published right away.
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I had ACDF neck surgery, heavy facet joint damage. Inflammation all over dermatomyositis, sjogrens, disk denigration, arthritis and neuropathy.
I had cancer as a child I know what pain is and I am from dramatic when I say I am at 7 to 10 most days. At under 40 years old I have very little quality of life.
Not only are doctors not wanting to prescribe opioids but they dont want to prescribe ANY pain medication. I’m treated like a drug addict when I ask for a baclfen a muscle relaxer to be filled why yes it will not take all pain away. Nor with all I have going on do I think anything other than being knocked out to take all pain away. I would settle to be at a 5 or less pain level.
I have never been irresponsible with medications. I know what prn/ as needed is for. I have to beg for non opioid pain medication like a mucle relaxer to be written. It is absolutely degrading to have to beg for a little relief. I shouldnt be treated like I am the biggest addict in town.
Not every patient that is in pain is going to abuse medications and there has to be a better way to do this.
I have had 9 back surgeries resulting in entire spine neck to hips being metal and I can’t keep a Dr even surgeon at UVA dr shaffrey left and went to Duke. I eat 10-15 Tylenol ibuprofen and Aleve daily kratom CBD hemp oil tumeric herbals even marijuana.im tired of pain and nights like tonight where I have been in this ball trying to get any relief for 6 hours now it’s 4am and I’m still awake don’t get sleep or relief. I’m DESPERATE to find any information on on assisted suicide since I can’t even get a gun or way to end this miserable pain I’m seriously thinking this is my ONLY choice and I’m good with it just need info.we put our animals down so they don’t suffer shouldn’t humanity have the same option
I have stage 4 lung cancer. There are times that I would have given up if it were not for my pain medicine. The thought of living with these tumors without pain medicine is terrifying. The medicine allows me to live a quality life with dignity. They are punishing people who are not addicts. Some people truly need them. Please, don’t villainize those of us who already are battling for our lives. It’s just cruel.
Very sad that after a very bad car accident and beatings from a 325 pound man has left me unable to cope and deal with my pain. I lost my child due to not being able to function after being on very strong pain meds for over 15 years ( and was a very functional member of society with my own business as a nice house ) now that my pain meds were yanked away I can no longer function and barely take care of myself. I spend money days in bed crying in pain. I’m losing my home and have lost almost everything in NJ where I live because Dr.s are to scared to treat me even though I have a plethora of problems ranging from needing a 3 -4 level neck fusion, a back surgery, migraines, MS and most recently my endo was so bad not being able to get the meds I need that at 35 I had to have a hysterectomy due to the pain and not being able to cope. After surgery I was sent home crying in pain because the dr and surgeon who assures me my pain would be handled, collected their money and abandoned me in pain, making me have to keep going to the hospital to be readmitted to have my pain treated in the hospital because the extremely small dose I was sent home with did nothing. I am now afraid to get the surgeries I need and will be homeless soon because my house is in foreclosure and will be closed on next month (June) because I can’t afford to live in my NJ house anymore because I can’t work due to pain and agony that I am told I have to love with. I pray others don’t feel the way I do because my life if it was over tomorrow would be a blessing. I would never kill myself but I wouldn’t mind dying to escape my pain. I have never been in trouble or abused my medication but I’m still forced to suffer every day. I will never be able to love my life or work to dig myself out of the hole I am in. I can’t raise my 10 year old son because I’m bed ridden most of the time, where as before when I was treated LIKE A HUMAN BEING and able to be a still I’m pain Nita rice member of society was ripped from me thanks to this country ABUSING patients and making them suffer in pain.
March 30, 2019
To Whom it May Concern:
Hello,
I am Jacque (Jacqueline) Knapp & my story with “Pain” began when I was an 8 year old child suffering with Severe Migraines (inherited from my father) I of course had the visual disturbances, then the vomiting until you thought you were going to die from it, & 20 minutes later a full blown 4-5 day Migraine!! Thought my head would just blow up, nothing for Pain & no-one to talk to … Until my Early 20s. I discussed them with my doctor that I had had from childhood, the proper name is Cluster Migraines which has now been changed to Chronic Migraines. I was never put on anything for pain, just when it would happen I would have to go to the ER where I grew up & the doctor (my doctor) would give me a pain shot in the ER & send me home. I worked a lot, but I was never was able to work during a Migraine unless I had the shot!! Because of the visual disturbances (seeing things in bits & pieces) & the vomiting being sooo horrible, the pain was even worse!!
Total hysterectomy when I was 28, because of Endometriosis & Pelvic Inflamatory Disease which cause me a great deal pain that again was never treated, even though I went to a doctor every single month when it happened & no not my childhood doctor because he had retired!! It wasn’t treated until another doctor diagnosed it, & he & my childhood’s son an OBGYN came up from Grand Rapids, MI to do the surgery!! Wow thank God no more Severe Abdominal Pain. I was on pain meds until I recovered then once my incision healed from my hysterectomy.
That same year I was bitten by a tick in a residential area, I couldn’t get out of bed because my entire body was in sooo much Pain, my mother took me to a Grand Rapids ER. They did tons of tests, including every test known to man for Arthritis, everything came back negative, then finally asked if I had been in any tall grass, well my yard because I needed it mowed … Well I was bitten by a tick, diagnosed with Lymes Disease 2nd Stage & I had to take antibiotics (again nothing for Pain) for weeks, plus register with the Health Dept. because I was the only residential case in Michigan!!
My Real Pain occured when I injured my lower back during an extremely long & horrifying fall down the stairs in our duplex, I landed at the bottom my back slamming up against the wall & everything inside exploded!! I sat there for over half an hour, when I finally could move I went back up the stairs & laid face down on my bed & fell asleep. When I woke up & tried to move Pain just shot from my back down through my legs, then a numbness in the backs of thighs, I tried digging into them with my fingernails & couldn’t feel a thing. I drove 25 mph to the hospital. They did some tests, & yeah I had really done some damage, but there was nothing they could do because “I had driven myself” … I made an appointment with my doctor, he finally examined me, didn’t order any testing, & began putting me on anti-depressant after anti-depressant that did nothing nor even work, anti-inflamatories I was HIGHLY ALLERGIC to as well as NSAIDS which affected my breathing. He finally lost his license because another patient had sued him, therfore I got bounced from doctor to doctor.
I finally found a doctor where I had moved to & a neurologist as well, MRI’s were ordered, EMG’s were ordered, X-Rays & etc … No surgery was ordered at that time, however I was put on 13 medications Including one pain medication, a strong muscle relaxer & other meds. My neurologist had diagnosed MS as well, but stated that I wouldn’t notice any symptoms until later in my life!! Which has happened!!
I woke up one morning with a swollen leg from below the knee to my toes on my left foot. Each day it got worse & worse, It was sooo swollen & red & felt like it was crushing my my bones in my leg & foot Talk about PAIN!! I was in a wheelchair by then, & my mother pushed me to the ER on 3 different occasions where they would just stare at it & say well we don’t know what is wrong, without doing any tests of any kind. The 3rd time they knocked me out & sent me to the a hospital down in Grand Rapids MI with a much larger hospital. I woke up to IV’s going in both arms & the doctor walking in, He said I was a very lucky young lady because one more week of it & I would have been dead!!! The IV in my left arm was Antibiotics, the one in my right arm was Morphine, he also explained to me that because I had been on Vicodin 750 ES for a very long time (& no-one would take me off them) the Tylenol built up in my liver & that they had to flush my liver 3 times, he then told me no more Tylenol for you period!! Therefore I was switched to an opiod Pain Medication.
Because of the condition of my back I lost the use of my legs, I had also broken my back so I went to see a neurosurgeon. Well. The prognosis was not good, while there was a percentage of getting back the usage of my legs all the rest of the back injuries were irreversable, however I was in even more Pain after the surgery than before it. Not only did the surgeon send me home on less of my Pain Med, but also the entire inside of my mouth & throat were completely raw bleeding. I was Suffering Sooo Badly that my daughters packed me into a taxi & took me to the ER. Well they had used dirty Instruments in my mouth during the surgery which gave me an infection, so the doctor in the ER was very peeved off at the neurosurgeon. He gave me a shot of antibiotic, he also Increased my dosage of my pain Med to back where it was before surgery!! My back, neck, & legs continued to become very Painful & caused me a lot of problems!! I also have Disc Degenerative Disease for years & Spinal Stenosis!!
My new doctor put me on Morphine. I would only agree to being on 6 Medications & no more than that (because back when I was on 13 medications I couldn’t handle that & took myself off them cold turkey & ended up in the hospital for 3 weeks with no-one knowing or understanding what was wrong because I couldn’t talk). Therefore I was put back on my Clonazapam, Celexa, Gabapentin, Phenergan, Skelaxin, & Morphine. I would see her once a month to see how things were going & so on. New MRI’s were ordered as well as EMG’s, X-Rays & CT Scans. A miracle happened & I finally was out of the wheelchair!! It would not have been possible had I not been on my Pain Medication!!
I was doing well & moved into my own place & was able to take care of myself & do some of my housework, & had a life!! I was able to walk at home & short distances, socialize with the people I loved dearly, do my own laundry, I did have a home health care worker coming in once a week to help with things though!!
We then moved down to Mississippi for 3 years, it was extremely rough for me the first 4 months, My medications ran out & I felt lost & was doing a great deal of Suffering in Extreme Severe Intractable Chronic Pain. I would just go out into the woods where no-one could see me & cry my eyes out all the time, I was really Suffering. I ended up going to a hospital ER, & of course we didn’t live far from a large city with a lot of hospitals. They took my vitals & asked me for information which I gave them, the doctor came in to check me over & talk with me, he then ordered a shot of Dilaudid & Phenergan, gave me my Klonopin he also told me exactly where to go in order to obtain a months worth of ALL my medications, with an exception to my skelaxin, the state of Mississippi did not prescribe that under any conditions!!
During that 30 days I found a doctor who stated she handled chronic patients, even though she was also a pediatrition. She refused to presribe any of my medications, including non-narcotic Medications!!
One night I fell, I fell 6′ feet & landed on my cement driveway on my back, neck, head & etc … I couldn’t move or breath for what seemed like a very long time, The Pain was Sooo Horrible that my body just couldn’t handle it. All I wanted to do was go into my apartment & roll up into a ball & stay there period!! X-Rays were taken of every single part of my body after I could finally make it to my doctor’s office. I had never cried when having X-Rays taken, however I was in Sooo much Pain that I was in tears the entire time!! I had herniated two discs in my upper back, re-aggravated lower injuries, bruised all my ribs, & messed up my neck!! Still she did not or would not prescribe anything for me so I Suffered & Suffered & ended up in the ER more times than I could count. However they were always great with me, showed a great deal of understanding & compassion & would end up giving me a shot of Dilaudid & Phenergan & presribed Norco for me until I found a different doctor. Also Rediagnosed my MS!!
He took over all my medications with the exception of my Klonopin which I had to see a psyshiatrist for, Maureen was great! She was my Psychiatric Nurse Practitioner. She immediately put me back on my Klonopin & I saw her monthly or bi-monthly. My doctor then got me into a Pain Center, because he had been prescribing Norco until we could get me into a Pain Center. This was ALL new to me, because I had never even heard of a Pain Center. At any rate Dr. Barclay was a wonderful Pain doctor, He checked me over went over some things with me & presribed Morphine & Norco. I saw him once a month, every month to keep track of how things were working out & going, I was doing very well, dealing with every-thing I needed to handle in my life, it also gave me back my abilities to do my housework, cook for myself, take care of personal needs & to work on my computer with Graphics/Deasign (which I loved doing), I was still disabled however & had to be careful but being back on my Medications gave me back my Life & Quality Of Life!!
Then we decided to come back to Michigan (home), I only had time to pack & bring my things with us, including my medications. I made my doctor’s appointment with the same doctor I had before I had left Michigan. However it would be 30 days before I could see her. Therefore I ran out of all my medications, I also ended up with a real bad case of Pnuemonia & was put in the ICU for a week Eeeeek!! I was NOT given my medications or even asked about them!! Once I was able to see my doctor she cut my Pain Meds down – Morphine by more than half, she completely cut my Norco, she cut my Klonopin by one-third, no muscle relaxer either!!
When I began having major problems & ended up in the ER, they wanted for me to discuss with her about adjusting my meds, well I definitely came up against a wall 3 seperate times!! She had changed in the 3 years I was gone, & yes this is the very same doctor who prescribed for pain and helped me get out of that wheelchair. She seemed not to care anymore, & acted more like it a was business to her!! She was aware I had been unjured further down in Mississippi, had my Pain Doctor send her my list of meds etc … I even had my pharmacy send her my medication list!! She also received my medical records on top of that. Still no difference. She wanted me to go to a Pain Center to have them adjusted, I had never been or even knew there were Pain Centers here in Michigan … I went.
They told me that my back had been through hell & was a total mess, nothing I didn’t know, they didn’t tell me anything I didn’t already know!! Instead of adjusting my pain meds. He wanted to put me on Percocet which he stated was stronger, well NOT!! But I tried it anyway. I saw them twice, my 3rd visit a new very young & I believe inexperienced nurse was in the room, my daughter was with me, & I had a broken right wrist, & broken left shoulder, yet he put the automatic blood pressure cuff on my right arm with the pressure soo high that Pain immediately shot up my arm, down into my wrist & hand. I asked him to please lower the pressure on it for me 3 separate times, & evidently I wasn’t being heard, so finally I just asked him to take it off outright, because I couldn’t handle the Pain anymore & I was just squirming on the table, instead he walked out of the room for what reason I didn’t know. My daughter & I were just sitting there waiting, next thing you know this woman comes into the room says she is the office manager & just started going off on me, & kept going off on me & everyone else could hear her!! I looked over at my daughter & told her it was time to leave, I wasn’t going to sit there & be verbally & emotionally abused by someone who was out of control, especially given that she was a supposed professional!!
I was halfway to my Orthopedic Surgeons appointment when the Pain Center called me & stated they were returning me to my doctor’s care, yeah I was upset & upset enough to talk with my Orthopedic Surgeon about it all. He stated to me that even had I done something wrong, everyone has a bad day, therefore they should not have done what they did!! A week later I received a letter from them stating “I had broken my contract with them (NOT), & that I had abused my opiod meds!
I called my doctor & informed her of what had happened, & I already had my appointment set up with her, she well knew I had never abused, overtaken, & was never addicted to my pain meds so I thought No Biggy because I had told her truth about what had happened & my daughter was with me!! When I went to my appointment I went over again with her, & explained to her I had no Pain Meds. So she left the room & came back with another woman that intoduced herself to me & then started talking to me about this medication, for Pain, they wanted to put me on, it was called Suboxone which I had never heard of. I was like ok I will try this & see how it goes.
I began having breathing problems & wasn’t able to take it!! She even cut my Phenergan in half, & gave me a 15 day supply of it. Because she said that was cutting my oxygen level, well not true as I had been on Phenergan for a very long time. I could see I wasn’t getting anywhere with her … so I just walked away & started looking for a new PCP.
I was basicly abandoned without my Pain Meds, by the Pain Center, then again by my Doctor, as to what they did I could never trust them again!! It’s been almost 12 months now since I have had anything for Pain!! How is it that the ER doctors would go out of their way to try to forced a shot on me that would put me in Anaphylaxis & kill me?? I don’t believe that’s legal, but they did it & continued to do it everytime I was told to go to the ER for treatment by my insurance RN!! Not only that but also Haldol which is for a mental condition I do not have!! They would also refuse to treat me but send a bill to my Insurance!! OMG!
So here I am Very Debilitated, unable to do the simplest things to care for myself, without my Pain Meds. Every day & night is the same!! More Severe Chronic Intractable Pain than I can endure!! To finally reach a point when we have what works for me (my Norco & my Morphine) I have never been addicted or gone through being high or anything on my meds. They lowered my Pain level & kept it under control allowing me to have a Life & Quality of Life & then ripping it away & being abandoned is the Cruelest thing you could ever do to a Pain Patient or Any Human Being!!
I just ended up back in the Emergency Room given I could not stand up straight, sit up, & barely walk, they did some testing, then they did an MRI with & without contrast … I am Much Much Worse. I am Non-Surgical, will Never Recover, Never Heal stated by Neurosurgeon after Neurosurgeon & Neurologist after Neurologist that I consulted with over time!! I am Fighting to Have the Right to My Medications, Life & Qaulity of Life!! Not only for myself but others Suffering in Misery just as I am!!
Without my Pain Medications I am & have become Debilitated, in Severe Chronic Intractable Pain 24/7 with no break from it, I cannot do things, go places, socialize even with my own family!! Movement including walking around the house is too painful & having to hang onto things for fear of falling!! Caring for my Personal Needs is a Nodda & very Embarrassing to me!!
You Definitely do NOT want to be where I am at, at this point in time. What has been done to Pain Patients & Vets who served our country is unbelievable, Inhumane, Insane & God only knows for what reason I am still here on this earth!!
Sincerely
Jacqueline C. Knapp
Michigan Junior Ambassador-Advocate
U.S. Pain Foundation
sirenone.x6@gmail.com
616-232-2811
My story is I’ve been taken off all my medication it’s been a year. But let’s start from the beginning.
I’m allergic to aspirin. I’m allergic to all N-Saids. Meaning Advil ibuprofen, Aleve Naproxen etc. All anti-inflammatory medication is a N-Said and has Aspirin in it. I have multiple allergies to other medications.
The only medication that I do not have an allergy to is an opiate, and acetaminophen.
So now I am forced into taking acetaminophen because that is all I can take. So now during this last year I have managed to damage my liver and my kidneys because I’m taking too much acetaminophen and my pain still does not go away. My blood pressure has risen to the point of having a Stroke and now heart condition.
All of this came about after I was taken off my opiate medication. Because I’m in too much pain to move about freely, to exercise, go for walks any physical activity is extremely painful. So now I’m on the verge of becoming a diabetic because of weight gain because of a lack of activity. I now have extreme high blood pressure because of being in pain constantly. Pain causes high blood pressure, every doctor knows and understands that.
My pain level is so great that I cannot function, I hardly leave my house. Hard for me to even drive my car because my hands hurt so much I can’t grip the steering wheel of my car. My COPD is worsening from a lack of activity from not taking deep enough breaths and that’s because I’m in too much pain to do it.
This is my story, this is the truth it is not over exaggerated it is what it is. I cannot find a doctor to help me. I’m literally dying from a lack of medication.
I have been living with chronic pain for over two years. Detailing my struggle to gain treatment to discover the root cause and to gain access to pain medicine until they do could fill a book. I may end up writing a book. I have been living in Washington State for over a year and have been denied access to opioid medication despite having pain that at times is so severe I cannot function. Even walking a short distance is difficult because it just hurts so much. When it is severe or when it has been high and stayed high for long stretches of time and I have no way to relieve the pain – I have absolutely contemplated suicide.
When I was in Florida and I had a bad attack of pain, I was being given a potent pain medication intravenously in the ER – and that just took the edge off. I have had medical professionals belittle my pain, I have been sneered at in ER’s, I have been told 2 years with pain “was not that long.” I wanted to punch them. I am not now nor have I ever been an opiate addict. I have never bought nor used a hard drug in my life, but when then pain is severe for long periods of time I absolutely think about going to the seedier parts of Seattle and buying heroin.
The CDC’s 2016 guidelines were never meant to be hard and fast rules and yet that is what they have become. The report those rules were based on directly addresses my (our) situation. People with legitimate issues that are denied access to opioid medication may resort to finding street drugs for relief. When I have asked for a scrip for pain meds I get that look – the look that speaks volumes about them assuming I want them to get high. That I am “pill seeking.” I hate the term drug seeking behavior. If you were in so much pain you were crawling out of your own skin, that you were contemplating death as a solution, would you not seek drugs? My suggestion of a story on this issue was ignored by the Seattle times. We are here – we are in pain – and we demand relief.
I’d like to make a suggestion that may help some of you people out that are cruelly being denied medication that would give you a better quality of life. I’m a younger man that suffers from multiple issues because of several injuries, misdiagnosis, and a very much failed spinal surgery that gave me more problems than I had before the surgery.
I knew that should I ever have to switch doctors I should have some sort of objective medical documentation that can best show my pain and other symptoms I suffer from, so I decided to fork over the two grand and get a functional capacity evaluation done. Basically they attach nodes to monitor your heart rate and blood pressure while you perform mundane tasks. Unless you’re some sort of chi master it is rather difficult to fake a spike or decline in heart rate and blood pressure. The whole ordeal was supposed to be ten hours long split in two days but I was released early both days as I was reaching heart attack levels in heart rate.
It has helped to have this documentation as I’ve had two new doctors in the last three years. For the first meeting I print out a copy for them to read as there’s a medical professional taking notes during the evaluation the whole time so the doctor can see the notes therefore it’s not just my word but also the observation of another medical professional’s word as to what my ailments really are.
I have a condition that affects mental, emotional, focusing and functional abilities. I had been receiving the medication for a sleep disorder (to keep me focused and functioning safely while driving a car) but noticed that it also greatly improved my focusing and functioning abilities in all areas of daily life. The prescribing physician has since retired and my other care providers will not continue the prescription, (BTW: when first prescribed, I totaled my car because I decided to substitute OTC remedies rather than follow the doctor’s recommendation.) rather they disregard my history and instead rediagnose and change the medication. I HAVE NOT CHANGED. Yet, my quality of life is diminished because of a change in providers and subsequent change in diagnosis and medication. Who suffers if an old retired non-employable person ingests a medication that enhances the quality of an isolated, simple and ever-shortening life? Let’s not kid ourselves, #45 snaps his fingers and everybody cowers. DON’T MESS WITH THE SHORT NUMBER OF YEARS THAT ( I/WE) HAVE LEFT!!!
I am a disabled veteran who has been on some type of pain medication for almost 20 years now. I have been on loratab, oxycodone, oxycontin, percocet etc.. Now I am being told that I am no longer able to get these medications. We are not the drug addicts abusing the medication. We and I are paying the price for this stupid people who are abusing them. I now have a rare forum of MS that is making things worse.
I had some pain in my thorax from working at a desk for too long hunched. Then I was in a bed wreck broke my neck and back in multiple medications. Been taking the same medication2006 I was I’mn carpenter in training but them in I bbn 2004. I have been taking same medication now for 7 years never asked for more I do not abuse at all I take them because I have a life when I have them. The only think they do for me is stop the constant pain. My pain it as bad as it ever been. The problem I have top take mine to make it through my day.. it has just gave new a life and functioning each but running out happens and that istake on matter what worse than any pain. I cut back when I can but when I need them I need them to just function arms us the pain and withdrawals from them take me a place that there are days when I contemplate suicide it’s jus a battle that you never stop thinking about every
I was born with severe scoliosis. I have had several surgeries to no avail and was told I also have fibromyalgia. I have seen the same pain management doctor for the last 9 years. I have been taking opioids for the past 15 years, it has helps me tremendously and gave me a quality of life. Now when I come to Dr. Baker I am treated like I have the plague and have been limited to a very small amount of pain relievers which really doesn’t help. I am miserable and in pain all the time. Our government has really screwed this segment of the population and I see suicide and illegal drugs going up with chronic pain users. We wanted to travel when my husband retires that is now very difficult to do.
If only every legislator out there could spend a day or two living in my body, I can guarantee each and every one of them would begin to consider suicide.
Severe osteoporosis prevents fusions in my cervical spine and lumbar spine.
Pain management sent me to the surgeons who determined surgery wasn’t an option. Pain management already closed my case. I can’t take NSAIDS. Tylenol ??? God help me.
This isn’t how I planned to spend my golden years. My husband is at a loss. It is only because of him that i cannot consider suicide. Living with so much pain each and every second of my life
is not living.
I have suffered from severe headaches since 2000. The only relief I get from them is a controlled substance issued IM from the ED. Last time I was there, I was told after 5 hours in the waiting room and 2 minutes with an alleged doctor. The “doctor” asked me what the normal treatment was for me, when I told him he informed me that they would not be giving me the medically necessary relief, discharged me and gave me two tylenol. Had to go back to primary the next day, he called ED, I had to go back again, still go through their stupid protocol, could not get the IV started, hence could not continue with ‘protocol’, got the medically necessary treatment I should have received the night before, and TWO bills from the ED for the exact same amount. I disputed the first one and refused to pay it. The ED in question did reverse the charge, but I was still treated like a second class drug seeking citizen trying to bleed the system. I am allergic to NSAIDS and most OTC. Had to have my stomach removed because the “preventative” (even though you can’t prevent what you already have) paralyzed my stomach. Have had numerous surgeries to correct the resulting damage. It never stops, and now I am treated like a addict??? I refuse to take all the drugs because they just make me stupid or don’t work, so when I go in after a couple of months to get some relief, I do not deserve to be treated like a second class citizen by some judgmental, pontificated doctor.
I could deep breathe my way into Pluto’s orbit, self-distraction is my own personal specialty, and I’m probably better at physical therapy exercises than my physical therapists. I’ve tried some of the most horrid interventional therapies pain medicine had to offer. I still really on my medication to get up every morning and keep me upright throughout the day, to keep me able to do just the bare minimum to have a decent life. I could do more if I hadn’t been reduced so drastically on my medications over the last 6 years. I was once vibrant and capable, working 60 hr weeks and loving a wonderful life. To go from that to a disability check and hardly being able to clean my tiny apartment is disheartening to say the least. I want to die almost every minute of my life, not necessarily because of the pain itself (though that is Earth shattering) but because of the knowledge that this is my life forever and absolutely no one cares to help me. That kind of thing gnaws at a person. It really really does.
I have a workman comp. problem. My last doctor told me “If I write you a perscription. I can’t write my regular Patients their persciption.” I got a new Doctor and I think its going to happen again. I get my perscription from my company insurance, but I’m loosing my insurance. Right now I hoard my medication. I don’t take as needed. I take as nessary. So I don’t adjust my neck.
My injury is a neck/head injury. Do you have people that can help. I had to fire my last attorney. They just wanted to close account, but I’m not back to work or fixed. They also want to sue me.
It was an accident no ones fault. Its been 5 years. The doctor says they can’t see in the area were my skull covers my spine connected to my brain. Its not all ways the pain. There is something wrong there. I’ve had mri, exrays. I have discs. God tells me to be patient there is help out there.
Is there?
I have had 4 back surgeries in the last 2 years. 2 laminectomies and a spinal fusion, then a spinal fusion hardware removal. The last spinal fusion hardware removal left me with a spine unfused and a crooked back. This has left me in so much pain. I have to be on pain meds. Every time I go to the dr. I am left feeling like they think I am a drug addict. Though I have never once done an illegal drug or misused medication.
I had a one level laminectomy that’s left me with chronic pain and residual nerve damage. I was originally getting occasional pain meds from my primary care, but it got to a point where she needed to refer me to pain mgmt. I was showing some degeneration and spondylosis on my x-rays and after talking with my surgeon they recommended a two level fusion but only gave it a 70-75% chance of success. That’s not high enough for me. I used to work in an orthopedic surgeon’s office, spinal specialist, and have seen the outcomes of many different surgeries. I’m not ready to risk it and end up with failed back syndrome and be in worse shape than in in now.
I was with the first pain Dr. for about a year. Originally, he decreased my meds from what my primary Dr had me on. This was OK since I was no longer working and I adjusted alright.
Then all this crap with the CDC started and he wanted to start tapering me off. I went into panic mode and started searching for a new Dr. I
I found a new one and he was great, claimed that what was working for me was fine and he didn’t want to reinvent the wheel. But he was leaving in a month. I was okay there for a while until the new Dr wanted to taper me down as well because of those guidelines. Time to find another Dr. I pointed out that If I don’t get the relief I need from the meds they prescribe then I’ll find it elsewhere and it may be illegal.
I managed to find the Dr who didn’t want to reinvent the wheel and got back in with him, even though he’s in the next city over it’s worth it. He’s a little more conservative in his prescriptions what with the DEA cracking down on the amount of prescriptions doctors are writing.
I’m scared they’re gonna take my meds away and then how will I function daily? I need those to be able to get out of bed and even perform the most menial of tasks.
Why doesn’t the CDC recognize that an addict is going to get a fix wherever they can find it and they’re gonna get the meds no matter how much you restrict the legal outlets.
Let the doctors be doctors and keep the CDC out of it. I get that the DEA will need to watch for oil mills, but leave the good ones alone.
I have severe scoliosis and the surgeries to go with it, starting at age 15..I am now 58. I did okay for many years due to exercising. But in 2001, my foot slipped out from under me on a staircase and I fell backwards hitting my head and neck on the edge of the stair and continued to slide and hit every stair on the way down. This fall changed my life forever! I had so much pain for so long I couldn’t stop crying. Finally had a laminectomy, that failed completely and left me in even more pain! I wanted to die! The pain was like living in hell on a daily basis and I was on such a high dosage of oral opioids, I could barely get out of bed. I know that some people can and do operate well on oral meds, however, I was not one of them. I couldn’t take care of my family at all. The guilt, depression and pain combined was enough to make me want to commit suicide, but I took a look at my son and knew I couldn’t leave him that legacy. In 2004, I had a pain pump implanted. I went into it with my eyes wide open knowing what complications could be involved, but I couldn’t continue the way I was! I had to get out of bed for my son! The pump changed my life. I was eventually able to get out of bed and exercise and have a semblance of a normal life. That was 3 pumps ago, and I have had complications. But what medicine, medical procedure, or hospital stay is complication free? As long as you have a good Dr that knows what he’s doing, you know what is going in your pump and take part in your own medical care, it can work. However, my brother also has severe problems with pain due to several conditions and I have watched them cut his pain meds to nothing! The pain that I have watched him go through has been criminal! First the withdrawals and then full blown return of pain! Aren’t animals given medication when they are in pain? Until someone has walked in the shoes of a person with intractable, how can they judge them? And to all the people who have gotten pain meds to get high or sell..YOU SHOULD BE ASHAMED OF YOURSELF! YOU HELPED TO CREATE THIS PROBLEM!! If you have an addiction, you can get help for that everywhere but people in real pain have had there choices taken away from them. Thanks to you and the CDC.
PUNISH THE PAIN NOT THE PERSON…
Each of the 3 areas of my spine have major issues. I have been on very strong pain meds for over 15 years. I take 4 piIls per day. I just had surgery on my entire lumbar portion of my spine to correct scoliosis, stenosis and radiculapathy. After surgery the hospital put me on 3 of the same pills that I have been taking 4 times per day simply to not be bed ridden! The human body builds up tolerance to any type pain medications. By the 3rd night in the hospital I was literally screaming throughout the night. The hospital could not legally give me any additional pain medication ease the horrific pain! At 1:00am my wife called the surgeon that was on call from the surgeons practice. He obviously was not happy to be called in at 1:00 am but he knew it was the only way I could get any kind of relief!
I cannot imagine what it would be like to have emergency surgery and not to have had a doctor to call to get some kind of relief. I am a God fearing man and normally not wish anything bad to happen to anyone. It is terrible to say this…. However, in this situation that our country faces, it would serve our citizens well for every descision maker and every person that is advocating for these restrictions to have their child experience unending excruciating tortuous pain while lying in a hospital bed knowing that a legal FDA substance that can provide instant relief is on a tray right outside the door but that it is against the rules, not the law , for them to receive it!! It is my hope, that everyone who reads this, will in their minds truly put themselves in this situation and have their hearts broken. This happens to citizens of the USA millions and millions times a year. This is not even touching on the subject of people like myself that would have lived home bound if not for pain medications that were stronger than anything available over the counter.
All of this pain and suffering because an EXTREMELY SMALL PERCENTAGE of people that have NOT HAD SUBSTANCE ABUSE ISSUES IN THE PAST end up abusing ILLEGAL DRUGS!!! Would society not be better off with some form of background check for substance abuse and then simply have an in-depth conversation w the patient to determine the best course of treatment instead of literally torturing people because of the problems of a FRACTION OF A PERCENT OF THE FEW!! I fully understand that laws are written and obeyed because of the actions of the few but those laws are not physically torturing a large segment of our country!!!
I can assure you that every human on this planet that is an advocate of these abusively restricted rules that cause such horrible physical pain FOR THE BENEFIT OF A MINISCULE PART OF A PERCENT OF OUR POPULATION WOULD NOT FEEL THE WAY THEY DO IF THEY WATCHED SOMEONE THAT WAS THEIR CLOSEST LOVE ONE SCREAM IN AGONY FOR DAYS WHILE THE LEGAL REMEDY WAS JUST AN ARMS LENGTH AWAY. I hope this story finds it’s way into the minds and hearts of every AMERICAN. (MAYBE STOP THE FLOW OF DRUGS INSTEAD??)
I suffer from fibromyalgia, and nothing has worked except opiates. I also combine it with gabapentin. My doctor lowered my dose by half on morphine stating that it was a federal law even though I knew it was a recommendation. Then he decided to cut me off without tapering the dose. We all know that can kill a person. He then dropped me as a patient. I had to go on methadone for pain management with addicts, and do therapy and groups for addicts. I had to get a new doctor, and none in my area will put a patient on opiates now. I’d have to go to pain management yet again to get a script. My doctor said I would be better off on the methadone. After 2 years, I now only have to go 2 times a week to get the methadone I instead of 7 days. It’s much more convenient to get the morphine, and it had less side effects. In no way is my pain managed well, because a higher dose make me deathly ill. My husband also suffers from fibromyalgia, and severe nerve damage in his entire left leg, foot, and hip. He is only on a low dose of gabapentin and nothing else. Again, he would have to go to pain management for opiates. This would be the 7th time! Plus the physical therapy actually hurts him worse. They had to stop each time he went. He’s fighting with the doctor to try to find some relief! He’s not eligible for methadone. We can easily see why people commit suicide over pain. Chronic pain patients are being left out of the equation. It doesn’t matter that your not abusing it or an addict. Something needs to be done. It’s never good when the government dictates what doctors can or cannot do.
I’ve been a musician for 17+ years, I also loved to bike, hike, garden, backpack, and just general outside stuff. I also was attending culinary school of which I couldn’t finish entirely because of spinal degeneration, and bone spurs jutting out from the irregular discs causing me increasing pain as the years go by. At the time it started happening the doctors thought it might be my kidneys that were the problem. We thought this because I happened to have a separate urinary tract problem that has since went away, but the pain has persisted, and even increased. Once it was determined to be my spine, and not my kidneys, I was immediately taken off pain medication, and sent to a pain clinic. I had multiple cortisone injections, nothing. None of the meds did any good, some just made me sleepy. Finally got into a spinal clinic, they suggested a spinal stimulator implant, which I tried, and it was an epic fail. Now It’s to the point that to get ANY opioids (which when I was taking the pills I could at least function enough to get around the house, cook, go to the store etc.) I have to get an implant, which even then you have to get a trail shot of Prialt which makes you feel awful before getting an implant with Morphine. (of course after a trial Fentanyl shot) All this time, there are no times throughout the day where i’m not at least in a 6 of pain, and mostly higher than that. It’s been since 2015 that i’ve been dealing with this, and it’s 2019 now. In the meantime I get nothing for pain, and the doctors hands are tied, they know how much pain i’m in, and they are stifled to help.
I have been left with chronic back pain from failed back surgery in 2015 that damaged nerves that impact my lower back and right leg. I’ve tried all sorts of therapies but nothing helps except pain meds. Without them I would pass my days in a wheelchair.
Skipping the details and bottom-lining:
There is NO CARE in HealthCare these days . . .
Chronic Pain Patients Suffering!
Hi! My name is Melissa and I am one of the many chronic pain patients that have been hit hard by the government interfering with medical practices and needs. I understand that there is need for some type of control on certain medication and I support that. The last thing I would want is any of my adult children falling prey to addiction to prescription or street narcotics. Saying that, I think that there is a huge lack of regard for how actual chronic pain patients are now being treated by doctors, pharmacies, and insurances. With each state creating their own laws and following CDC guidelines as the line in the sand is hurting many people without due reason.
I have 12 herniated/bulging spinal discs along with chronic fatigue syndrome and fibromyalgia… and for the past 10+ years have been following specialists assigned to my care and getting steroid injections, nerve blocks, physical therapy, acupuncture, massage therapy, and Just recently surgery. I always follow strict doctor orders and due exactly as told to help with my pain. This does include medical therapy of higher than 90 MME narcotics which has allowed me to continue working as a professional technology leader with a fortune 500 company for the lasts 25 years. Now that Louisiana is forcing pain doctors to taper all patients down to 90 MME or lower, I have been removed from my Duragesic patches and lowered Norco pain medication. With no alternatives offered, how am I supposed to live, work and support my family? The pain is now so unbearable that I will have to file long term disability without any alleviation opportunities afforded to me. If there were alternates to opioid medications out there, why are we not being offered that medication? This type of suffering is unnecessary and cruel.
Thank you for your time!
Melissa
Here is mother’s story – Cynthia Britton
I am RN retired. 70 Years old. Have multiple Issues all documented medically for all to see. When in school for nursing we were instructed by the joint commission to listen to our patients in regard to their pain levels.
Now medical staff ask about pain it’s ignored, and only treated per CDC guidelines. This is how much u can or can’t have ignoring the doctors Educated Evaluation in regards how to treat their patient… we must suffer the differences between doctors and government. Please explain to me how a government program that is many many miles away and doesn’t know me and hasn’t had the availability to see my documentation in regard to my body damage and my need for pain meds. Everybody says we’re supposed to honor our elderly yet you’re making us suffer at what was supposed to be the golden years of life. So now we’re poor and we hurt and nobody will listen to us! please do something about the allowance of pain medication for those of us with chronic pain. my name is Cynthia and I think I deserve more from my government than this current situation.
In 1993 I was a healthy forty year old with an active and profitable anesthesia practice. I was building our family’s dream home having spent 18 years reaching the peak of my career, when I stepped off a curb and stumbled without falling. But in doing so, I blew out three discs in my lower back. I spent the next ten years using conventional, non-opioid treatments only to watch the problem grow progressively worse. By 2003 my doctors told me I needed to have surgery and not for three levels but for five, as I was now suffering from degenerative disc disease. I was told that if I did not have the surgery, in ten years I would likely be in a diaper and a wheelchair. So I went in knowing I would come out on the other end a chronic pain patient taking opioids for the rest of my life. naturally this brought an end to my healthcare career, so I planned my transition from healthcare to a career in information technology. Following a five level fusion booted a new career as an IT consultant and developer. It took another ten years to build that career into something profitable and by 2016 I was earning six figures again. Now planning how I would prepare for retirement, I decided to move closer to my children and moved to Ohio believing that in a larger IT market, there would be steady work well into my 70’s. Except that when I arrived in Columbus, I was immediately hit with the opioid crisis there and on my first doctors visit I was forced tapered to half the medication I had been taking for the previous seven years. As a former anesthesia provider I sat and listened while the doctor, not knowing that I had a medical background, lied to me on why he was refusing to write scripts for what I had been taking. Blaming the government and making claims such as it was against the law, when in fact it was for his benefit not for mine that this was being done. I’ve been a chronic pain patient for twenty-seven years now, on opiates for seventeen of that and not once have I run out early, seem more than one doctor or exhibited any behavior to indicate that I was at risk ye this is what I am confronted with every time I have to be in front of a healthcare provider. From my point of view, the entire healthcare profession has collectively stuck its head up its ass and gone blind and deaf. Nine month after the initial taper and was force tapered a second time, now taking 1/3 of what I had been on previously and the consequence were severe. No longer able to function as had been, I lost my clients, so I tried to get a regular job, only to be let go once I begin having problems showing up at work on time or because there were some duties I could no longer perform. Ultimately I was forced to retire early. In a family where individuals live well into their 90’s I still have another twenty five years ahead of me, ten of which I could have easily held down a fulltime job. But now, I’ve lost that six figure income and I’m drawing Social Security, pulling money out of the system rather than paying into it and why, because bureaucrats don’t know the difference between chronic pain and drug abuse. At a time when I should have been putting more than half of my income away for retirement, I was forced out of the workforce. In three years I will lose my home if this doesn’t change. And I personally know 800 other individuals who tell a similar story, so that means there has to be several hundred thousand others with a same story similar to mine. So when did a drug addicts recovery become more important than my ability to provide for myself? No one has an answer to that questions, they simply keep telling me I’m at risk and when I ask for details on just what that means, they silently walk away.
Hello my name is Kayla an i would like to share my story of chronic pain.
I got in a car accident 2 years ago with my son that was 3 at the time an his dad. I was driving an my son was directly behind me. I was crossing a busy street with clear traffic an was t-boned at 70mph in a 30 zone.
My son and his dad thankfully made it out ok. I on the other hand had to get out with the jaws of life. Now i do not remember but there was footage. I came out with a broken back from L1-L5, laceration to my liver, severe concussion, an nerve damage. Was in the hospital for 4-5 days. I was on narcotics for almost two years. Doctor took me off pretty much cold turkey. He said he thought the narcotics was causing my pain. I also have fibermyalgia, an arthritis. A month later my MRI comes back that i have ankylosing spondylitis, chronic sacroiliitis, osteoarthritis, arthritis and nerve damage.
It has now been 5 months sense i have got nothing for my pain.
I am a 29 year old single mom of a 5 year old. I also have 2 fur babies. I have been in an out of the ER due to chronic back pain. My back feels like its on fire an burning, stabbing, aching. My SI and butt area i get electrical shocks down my legs which causes my feet to be numb. As well as stabbing, shooting, electic fire pain. I can not sit ling due to my pain. I feel i have a stick up my butt an have a hard time walking. I ahve tried many coping skills for my pain when it comes to CBD, spray, numbing cream, a bath if i can get that far down, stretches, an went back to PT to see if it would help an could not bare it. I take muscle relaxers, enebral, cymbalta, lyrika, tylenol and ibuprofen.
I am in constant pain an i dont know what to do anaymore. No doctor will help me with something stronger for my pain an i just cant manage my life with this chronic pain. I have tried many doctors. My pain doctor is very rude to me an treats me as if im drug seeking. You cant win for losing with the guy. My insurance doesnt cover other pain clinica. Im lost and i hurt. Im tired of going to the ER an im just tired of this pain.
Please help with advice or suggestions.
Thank you
My name is Phoebe. I am a nineteen year old (please keep that in mind) girl who was diagnosed with fibromyalgia. The pain caused by my chronic condition is absolutely unbearable. I wake up each day not knowing if I am even going to be able to walk properly because the disease causes by knees to give out (among too many other symptoms and pain areas to list here). I can barely function due to the pain and I can barely think due to the brain fog the pain causes. My dream is to become a doctor and I am currently studying at a university as a major in premedical biology with a minor in chemistry, but I have to wonder every single day if it’s even possible. Can I make it to class? Will I have enough stamina and willpower to push through my out of class work? Will my brain fog prevent me from retaining the information that I learn and study? Will I flare up and have my grade suffer from missing a week of classes? I have breakdowns all the time, feeling like my life is pointless and I will never accomplish anything but laying in a bed because of my condition. I sometimes take benadryl and other sleep aids so that I can escape the pain for even a little while before I eventually wake up in hell again. I have tried a slew of medications including cymbalta, amitriptylene, sumatriptan, and lyrica, but the only thing that has EVER helped is opiates. I have received temporary (up to seven day) doses from my doctors a few times and I feel like I’ve been given a miracle. I can function, think, and enjoy my life when I have pain medication. But, of course, the medicine isn’t available to me as a long-term treatment due to the ‘opiate crisis’. I am a nineteen year old college student. I should be enjoying my life, hanging out with friends, having new experiences, traveling, learning new things, excelling in my studies (which I have found to be quite easy for me when I have pain medication and can, therefore, function), attending school sanctioned events, playing volleyball (which I enjoyed before my condition developed), and many many more things that other young adults my age do. My life is being taken from me by my condition. Doctors should not be held responsible for patient irresponsibility. Doctors should not be getting in trouble for the actions of addicts who choose to abuse their medication. The responsibility for addiction and abuse of opiates (and any other substance) lies solely with the individual that abuses the medication. We are responsible for our own actions and my life shouldn’t be taken away from me because lawmakers (who don’t have any medical knowledge) decide to blame doctors for the actions of patients. If somebody decided to stab someone to death, we wouldn’t blame the retailer that sold the perpetrator the knife, so why should we be blaming doctors for addiction? It’s time to change the laws surrounding opiates. We need our medication!
I have been dealing with chronic pain since the ripe ‘ole age of 34. I have had the opportunity to accomplish my dream of becoming my own boss and starting my own business. I did so for a year, but just as soon as I got my business profitable, my back became a nuisance and before I knew it, low and behold I was having the first of now five total spinal fusion surgeries.
My spine is degrading at an all time rapid pace. The first 4 spinal fusion surgeries where no piece of cake, mind you, and pain management has helped me get through this ordeal; the pain that comes from the chronic nerve and muscle pain from the surgery and what the surgery couldn’t fix from my disease; Degenerative Disc Disease.
So on April 1st 2019, I elected to have a 7 level cervical vertebrae fusion surgery . Yes, it was a huge surgery, and I realized that the surgery was a risky one. Yet I can assure you of one thing — I was promised adequate pain medications by the anesthesiologist who was going to be overseeing my surgical procedure itself (and my husband and I both made it very clear to him how long I had been on a 100mg Fentanyl patch and that I just had 3/4’s of my Opiate pain medication take away. He said he agreed and totally understood. So, he wheeled me into the surgical procedure room and low and behold, what does he tell me? … He makes sure to make me aware he would be giving me a non-Opiate medication for pain relief — right there I knew I was in trouble because he basically thought I was showing signs of “drug seeking behavior”, he thought I was basically just an addict and not a chronic pain sufferer., and therefore he was simply going to give me the very least pain medication he could possibly give based on what he thought he knew to be reality. But … but, as we know, just because you believe something to be reality, it often times is rather just the perceived reality rather than the actual reality. And THIS IS EXACTLY HOW THIS HOSPITAL STAY GOT SO TERRIBLY OUT OF HAND.
That initial [yet very wrong] perception was simply multiplied and unfortunately further accepted by the staff, making matters far much worse for me. As they say, perception is nine tenths of the law. It truly remains without saying, on the 3rd floor where I was located, at the horrid medical facility SSM St Clare Hospital in Fenton Missouri, I was no less seen and treated as a pathetic drug addicted junkie who just so happens to have gotten a 7 level cervical vertebrae fusion surgery. Because of this surgery, the staff had no alternative but to medicate me for the post-op surgical pain — although mark my words, if it were their choice, they would not have offered me any pain relief medication whatsoever.
I know the difference between an addict and someone like me who takes these opiate pain medication analgesics for the proper reasons; my younger brother died as a result of an illicit Fentanyl overdose, an addiction he had battled for nearly 15 years. His struggles were real, yet given that, to equate someone similar to the conditions he faced and lump chronic pain sufferers and the chronic pain community at large into the same category is doing nearly 2 million people nationwide a major disservice.
At 3 am not even 24 hours after my most invasive surgery to date [and I have had 4 other spinal surgeries], I could not get anyone in the hospital to listen to me or heed my concerns. I was trapped in my hospital bed with a catheter and two IV’s that I was not able to get out and I was so upset. We wouldn’t treat our own pets this way — but humans, that is ok?
https://www.youtube.com/results?search_query=%22When+inadequate+pain+relief+happens+post-op%22
And, to make matters worse, I am having trouble, so much trouble might I add, that nobody will help me get ahold of the actual pain medications they administered to me while I was in the hospital. It seems strange to me that I cannot get ahold of something rather simple.
I was discriminated against, and from the moment I walked through those hospital doors till the moment I left, I was highly discriminated against simply because I was a chronic pain patient who was on an opiate pain medication regimen and it was something they shunned me for.
And one last thing: They specifically told me not to carry more than 5 lbs. yet upon discharge, not only did they not show me how to take care of my 3 inch wound but they showed me to the elevator with two bags in hand [both weighing over 5+ lbs. per bag] and waved goodbye. Nobody bothered to walk me to the front door, nobody bothered to put me in a wheelchair, nobody cared.
And I have a 22 minute audio conversation with the chief medical operations officer from the hospital and he did admit that the employees had dropped the ball and it should not have happened. Sure wished he would have known upfront and while I was there!
Now I suffer from PTSD, and will never ever step foot in another hospital ever again.
My faith in humanity is ultimately shot; doctors don’t care, nurses are overwhelmed and don’t care anymore, anesthesiologists are worthless because they base who you are by what medications you are on currently, ect
I am not an untrustworthy individual; so far removed from the person I once was.
~ Sheri Owen
http://www.VideoYourPain.com
I’m a 64 year old female with chronic pain for more than 20 years. I have severe scoliosis that is s-shaped that has caused disc degeneration throughout my spine. There is severe stenosis and bone spurs at every level of my spine. I have osteoarthritis throughout my body that has affected my hands and shoulders as well as the spine. I’ve taken a dozen different anti-inflammatory medication’s ( since 30 year’s old) and recently had to stop using them because of stomach ulcers. I’ve had injections in my hands shoulder’s and lower back for over 20 years. I’ve had surgery to joints in my right hand and my left shoulder and now I need a total left shoulder replacement. I have done physical therapy on and off for year’s, taken antidepressants and anxiety medication, lyrica and neurontin as well for fibromyalgia symptoms. I retired and went on disability at age 56 due to all of the chronic pain and related suffering. I have chronic insomnia, depression stress and anxiety. I was also treated with opioids for the last 20 year’s and that was the only thing to give me relief. Now with the opiate crisis in this country I have been cut down to next to nothing on the dose of these medications. I have only ever gotten these medications from my primary care doctor and only went to specialist for injections and Orthopedic surgeries. In the past 2 years I have been from one doctor to another trying to get some help. I can’t sleep or function anymore and I am seriously for the first time ever having thoughts of ending my life. I need to find a place that can help me emotionally and physically to deal with all of my problems.
I am feeling so defenseless and hopeless with no where to find help.
I have had chronic pain since I was a child. I had a few injures as a child that were never addressed. I could not sit still in a chair all through elementary and high school due to back and leg pain. Since I had it most of my life I thought it was normal and that I was just a poor student and not able to learn as well as everyone else. In addition by 8th grade I was dealing with menstrual cramps, migraines, and all-over aches. None of these were addressed until I was a young adult. It was not until I had become ill with flu and landed in the hospital that I realized the extent of the pain. I had been given an opiate and for the first time in years I felt what it was like to not feel physically horrible.
There were times that I had so much inflammation/nerve pain that I just wished I was dead. I started to be able to verbalize to my doctor about the pain. Now I knew everyone does not have almost constant pain. I was able to address the issues behind the pain and was treated for them. One major problem was osteoarthritis. I was treated with pain controlled pain medication as well as just about every prescription medication. Some things helped, but then the side effects were too severe. Narcotics helped a lot, but it took a while to find one that didn’t have some of the annoying side effects.
By the time I was in my forties I was getting hives along with full aches, and migraines that seemed to correspond with my menstrual cycles most of the time. To make the story short, after many tests, in the end, medical doctors couldn’t figure it out. I was diagnosed with fibromyalgia at about age 45. I continued to see various doctors accordingly and tried more medications. The only thing that helped consistently was narcotics
A few years ago I had a series of surgeries that I elected to have as even the narcotics could not relieve. Two hip replacements and two shoulder surgeries. During this time I still experienced occasional bouts of full body aches etc. The doctors withdrew the narcotics while I was still healing and in a lot of pain. This was during the big government narco purge. I did manage to stop them all together, but I still have all-over aches that slow me way down.
Between the arthritis and fibro I feel like I have some kind of flu most of the time. Even on the rare occasions that the aches aren’t so prevalent, I am usually exhausted. When I was able to have the narcotics I never at any time took more than directed and I only took what I felt I needed. When I had that medication I was much more rested and functional. It is so true that people that don’t have persistent pain issues, don’t understand. They don’t get why you can be in bed for fourteen hours and not feel rested. They don’t get why you lay awake most of the night unable to lay still and then finally fall asleep as the sun is coming up. Then only to get up feeling unrested, exhausted, and in pain.
I had a doctor that treated me from age sixteen to forty-nine. In my mid-twenties when he started to regularly prescribe narcotics along with trying other meds, it was the time the government started giving doctors hassle about them. He had a law degree as well. He said to me, “What right does the government have to tell me what to prescribe my patients?” Now doctors are not prescribing them, often even in some of the worst situations, and patients are suffering. They aren’t prescribing them because they are controlled by a government that doesn’t care about peoples health issues. They don’t care about those people that want to be functional members of society, but are denied that.
I am allergic to so much medication. I have tried almost everything out there for pain control. I have degenerative disc disease, fibromyalgia, sjogren’s . i have been suicidal from the pain. My only option is pain medication, I have tried all the non narcotic meds and ones for controlling fibro and I am allergic to them. I now get enough medication to keep my pain levels around a 7 a good part of the time but i have flare often and when I do the pain is so bad that it pushes me so close to the edge is scares me. I am only prescribed 3 aday and I do everything possible not to take it ( I’m not successful most days) I am so afraid what I will do if they decide that people like me cant get pain relief. I do know that I have been fighting this pain so long that with nothing at all to help control the pain I really don’t think I can do it.
My personal Chronic Pain Journey has been going on for almost 17yrs. I’ve had back surgery & needing another one, the sciatica in my right leg is unbearable. I had my right shoulder replaced, which has been deemed a failed surgery. I was a very compliant patient to a Pain Specialist who decided to “retire” on my last visit. Since then, this opioid crisis has made any kind of pain relief obsolete & my life Hell.
I suffer with Diabetic Neuropathy in both hands and both feet. For those that don’t understand chronic pain let me help. Imagine a toothache, the worst one you’ve ever had… Take that pain and spread it all over your hands and feet, now imagine being told that your pain has no cure, you’ll live with it until you die. Now imagine there are people that want to take away the only thing that makes it possible to function. Without my pain meds I can’t eat, sleep, walk, read a book, carry on a simple conversation. I can’t pick up the phone, tv remote or knife and fork… It’s too painful.
You can’t tell by looking at me or watching me that I have this disability and that’s because I have help, but you need to know that if you take away that help you’re as good as killing me… I can’t live in that kind of pain.
I have been in chronic pain for 5 years. Ive had 30 steroid injections, 3 epidurals, chiropractic treatments, 12 rounds of physical therapy, nerve burning, several antidepressants, anti inflammatory meds, massage therapy, exercise, 2 failed back surgeries, I currently have a spinal cord stimulator, and the surgeon that put the spinal cord stimulator in put the battery pack in the middle of my back and didn’t stitch it into the muscle and it twisted and pressed against my spine, so I had to have it moved. Im a military spouse and have had all these treatments in 3 different states starting over with new drs who pulled me off of medications that were working every time. I was medically denied to move overseas with my husband who is serving our country because of lack of medical facilities. He is on a two year tour and I had to stay behind in the states with my kids without his help. I have been pulled off all of my meds 15 months ago, as soon as I moved and said Goodbye to my husband. I was able to function with the meds I was on in Idaho and had an amazing dr. I had to move by family and they all are very busy with their own families and they help when they can. The family is also convinced by all the stuff in the news that narcotics are for drug abusers. Ive gotten yelled at at several pharmacy’s and embarrassed in front of other people for trying to fill legitimate perscriptions over the past 5 years when I was on them. I am not able to function and I did resort to alcohol to try and numb the pain, but I no longer drink because of the health effects. Every day is very hard. Its hard to shower, get dressed, do laundry, cook dinners, try to grocery shop because thats a horrible experience every time. My kids see me in pain every day and there are days the pain is so bad it feels like my bones are being twisted and pulled apart and all I can do is sit on the couch and cry. When I was on controlled meds my dr checked my urine and every time I saw him and every time my medication was measured in my system it was with in normal range and some of those appointments were not planned. There are things drs can do to be safe. Every patient is different and metabolizes medications differently. Not one size fits all. Drs could fill perscriptions one week at a time if that would help. They could also do random urine tests like my pain dr did. Its not ideal, but if things like that would protect both patient and the dr then it could work. It is sad that these medications have been abused and Im not down playing the dangers or people loosing their life because they over dosed. But taking all pain meds away is not going to save lives. Cars kill people, alcohol kills people, food kills people, tylenol kills people, cigarettes kill people, vaping kills people, people kill people. Where do we stop. If the patient is in chronic pain, they should be treated for it just like any other disease. Taking the medication away from me has made me miss out on everything in life. I just exist at this point. Please can we find a way to make this work.
I have been a pain patient for over 20 years. I was finally getting my quality of life back then suddenly in March 2018, I was completely cut off of all opiates and sent into severe withdrawal! I suffered at home in silence because no one would help. My husband took me to the hospital and begged them to help but no one would! Although, they certainly had no problem charging my insurance $2000 for absolutely no care! Just use of room! The clock has now been turned back 20 years and I no longer have much quality to my life. I’m disgusted by the way this situation has been handled and those who truly are in need of opiate medication to survive were just thrown in the gutter and labeled drug addicts! We are drug dependent not addicted!! There is a difference!! It makes me so very angry that a very good doctor who treated me for over 11 years has lost his practice because of others who were in his employ were involved in illegal activity! Sorry, I had to get that off my chest!
My story starts August 9th 1996 with a fall on a construction site the breaks three vertebrae in my back I want no one to have two surgeries or rods screws cages were insider I tried to go along with what was the new Norm for my life I lost the ability to continue in a trade that I loved so dearly stonemason and bricklayer please excuse if I make any mistakes in this because this is truly a new format for me after a few years of jobs that just did not do it for me against doctor’s orders I went back to the trade that I love so much or something so rewarding and doing stuff that would probably be around for a hundred years after you’re dead and gone let you do things like that you may not understand I stayed under the care of a pain management doctor I told present time are there a couple years ago I was told that you have to go down to this magical 90mg however they formulate this I have no idea I was lowered to this level and my doctor scene did I was struggling immensely I was put back on all of my regular medication and believe that I had weathered the storm only to have my doctor disappear be put in the hands of another doctor who started the same regiment of lowering my dosages down to this magical 90 mg only now to be told yesterday that the best thing for me to do is to go into a 60-day program to get me off of my pain medication and it put me on the drug Suboxone which carries more stick message in pain medicines Carrie I want fortunately known people that go through this how this is supposed to help me with my pain I don’t have a clue I’ve never tried to hide the fact that I was on pain medicine frankly don’t care who knows it not the life I want but it’s the life I’ve been dealt been married 43 years to a wonderful one who’s put up with all of this and never withered and her support two beautiful children four grandchildren people that depend on me although our youngest job 25 is 4 years ago was diagnosed with stage 4 cancer and has been battling I have no idea how I’m a supposed to live like the way they want me to live I’ve never asked for another pill from any doctors I will I haven’t had a parking ticket in probably 30 years why is my life being yanked away from me even more what could I possibly done as I jokingly say that I kill the priest when I was a child try to have someone sent to you were through all this but it’s becoming harder and harder to do if I feel like I say if I made mistakes in this I apologize yours truly Michael O. Rini AKA Corvette Mike 1954 at gmail.com
I’ve had chronic migraines since 9 years old. I have tried everything! The pain meds I was given 9 years ago (which helped), were recently taken away. Leaving me to go thru withdrawals on my own. Now I have NOTHING for the pain. I have considered suicide, as I cant live with this pain. I’m not a drug a seeker. And get tired of being classified as one by the medical community. The same ones who prescribed the meds in the first place. I am looking to take action against: doctor, insurer and go to media. I’m pissed and don’t wish this on anyone else.
I’m 63yr old chronic pain patient who is SUFFERING in UNBEARABLE pain. I’ve tried everything and spent a lot of money trying to get out of pain – NOTHING helped but PAIN MEDICATIONS. Please help me. I can’t take this PAIN anymore. i can’t even take care of myself and I live alone. with pain medication i was able to take care of myself and family and be useful and feel better about my self … and not suffer and wish I was dead.
Why would any human possibly let so many chronic pain patients and veterans suffer so bad they take their own lives? Pain is the worst thing you’ll ever feel. Just hope your pain signals don’t fail you and your pain stops because you will suffer until the end too. We are not the problem it’s illegal drugs that are killing people and addicts, and we are the ones that are being TORTURED to death and not anything out there about chronic pain patients that are suffering and we are being hidden from public what’s really happening to us and the abuse we are going through… No help for us only the drug addicts.
This is the worst crime in history against chronic pain patients and veterans.
I have had 3 Cervical Discetory Fusions (ACDF) over 9 years. Covering cervical discs 2 through 6, last surgery March 2015.
My last xray 2017 shows I have another herniated cervical disc and a pinched nerve.
I am now permanently disabled at 58 years old. My arms are weak, I suffer from upper back pain, headaches, my arms and fingers tingle. My head feels like a 30 pound weight.
I have to drag myself to the pain clinic every 30 days, to pee in a cup. They require me to carry my medication to and from my appointments so they can touch and count my medications. (Endangering my life as people know I am carrying narcotics)
I am subjected to mental evaluations (am I feeling addicted, do I want to hurt myself, etc…) just to get enough pain medication to relieve up to 25% of my pain. In my state 25% pain relief is the rule.
I spend most of my time laying down on my right side, head propped just so to decrease my pain even after taking my medication as prescribed. Quality of my life, I would not wish this life on my enemy.
If you ask for more medication or to change your medication you risk being denied any medication and lectured about medication tolerance. I should go acouple days without taking medication so the medication I have will work again of course only acouple of days until tolerance is reached again.
I feel like I have committed the crime of Degenerative Disc Disease. Which requires me to check in monthly with my parole doctor to prove I still have Degenerative Disc Disease (no miracle cure), pee in a cup (prove I am being a good person).
I understand the doctor is following the guide lines put in place by the state. I feel the government has no business being between my doctor and their ability to treat me, however if the doctor doesn’t follow the rules to the T. They raid their offices, arrest them and then all their patients have to find a new doctor which can take months.
I know many other people suffer the same as I do. While I would love to attend a rally I could not physically take the ride to a rally much less walk it or carry a sign, and I believe most the people who need the help of this movement are probably in the same boat. Unable to make that ride and carry that sign.
We are silenced by the lack of compassionate care from our government controlled doctors.
My 96 year old mother said,”if you were a dog people would be carrying sign picketing the doctor’s office for lack of care.”
Think about that statement for a minute, if I were a dog, people would care. How sad is that.
I went to an ER in Mckinney, Texas and was discharged within one hour to care for a concussion without pain medication. The ER doc told me to visit a pain clinic for relief.
I have been in chronic pain for the last 15 years I am a nurse and have torn up my shoulders and back from working in this field for many years . Please look at the problems we have from Gov reglatories that scares Dr’s away from giving the meds we need
20 years i went to pain Dr. But now they have shut him down. The local hospital that had promised i would have insurance till 65 lied. I pay out of pocket so no other Dr will take me on. I have rheumatoid,plus shingles bad knees bad feet and really bad hands. RA dr will no longer help because of shingles not to mention insurance… really peaved.
Thank you
I have Rheumatoid Arthritis, Interstitial Cystitis, Sjogren’s, and Fibromyalgia. I took Opioids for many years, and yes became addicted. I developed Opioid-induced hyperalgesia. Went through a rehab doctor to get off. All that said, I am not against Opioids. I have had surgeries where I had to take them afterward. I did so temporarily, and will again when necessary. They are a necessary evil and for some the only answer. They are not the enemy, they are a tool. It is the abuse of Opioids that is wrong. The addicting nature of the beast. But still a tool and a useful tool. So I will support this cause. Those like me, who are in constant pain should be able to have this tool available to them. And if done wisely we will not mind the accountability of the regulations required. But it should not be too difficult to get them, and we should not be made to feel guilty for our need of them.
I was born with sclerosis to the point I could not sit up on my own as a child. My first time in physical therapy for PAIN was at 5 years old. I fought through pain my entire childhood anytime I ran or jogged, or stood for an hour, or when I sat in the car too long. Despite the pain I still played softball, volleyball, skated, hiked, biked, danced, worked physical jobs, and got my Master’s degree. I just did not realize everyone around me was not in the same pain as I was.
I am 38 now. I have a 3 level fusion and 3d printed bone c3 to c7, I have had two laminectomies this year, and even more injections, epidurals, and minor surgeries on my spine than I can count. I still have no idea what it feels like to not be in pain. I ACCEPT THIS.
I have tried acupuncture, tai chi, pain therapy, meditation, yoga, weightloss, gluten free, cryotherapy, physical therapy, stretching, swimming, cupping, lidocaine, tens unit, traction, nerve blocks, target point injections, braces, vitamins, heat, cold, rest, activity, massage, cbd, krampton, thc-a, and all the normal pain and nerve meds… anything suggested I have tried.
I DO NOT WANT TO TAKE OPIOID PILLS. It took two years of therapy for me to even start taking them regularly and accept that I need pain pills to have a semi normal life. I was trapped between wanting to commit suicide because I was in so much pain or having the guilt and stigma of being an opioid user.
I am alive today, because of pain medication. In the 4 years since my neck fusion I have actually gone down per my own request and not tapering.
I have been with the same pain management doctor and have luckily never had an issue. Every month I drug test, I report any medication change before I fill it to pain management, I keep a pain diary, I do everything that is asked of me without complaint because I respect the rules. They are wonderful, and I would like to keep it that way.
Having pain relief is a basic human right. We do not stop selling alcohol because there are alcoholics dying of liver damage or drunk driving. We do not stop selling McDonald’s because the number one cause of death in America is heart related diseases. We do not stop selling cigarettes because millions die of lung cancer. So why should pain patients be punished? We did not ask to be in pain… and we certainly do not want to be in pain…
I’m a retired 64 yr old male . I worked 41 years of my life and retired at age 56. To treat myself I bought a Harley Davidson road king. After a period of 3 years and untold memories I was T boned by a truck not more than one mile from my house… The injuries left me with 18 staples in my head a fractured neck and back with both screws and plates fusing my spine. The pain clinic I was a patient at Simply close their doors without warning which I am guessing Has something to do with this so called opium epidemic….. Approximately 8 phone calls were made to another clinic with no return calls whatsoever…. after my 41 years of hard work…… And the 4 yrs I got to enjoy my motorcycle….. I now have to pay someone to cut my grass…… Cannot wax my car….. Or do any of the other things I enjoyed since the stoppage of prescribing pain medications to virtually everyone…. It is a shame that the older population alone much less the older population that have suffered Major traumatic injuries can not get the relief they need for simple everyday tasks
I’m a chronic pain sufferer. For twelve years I’ve been going through chronic pain. I have Sjögren’s syndrome, fibromyalgia, interstitial cystitis, cervical spine pain and lower back pain, irritable bowel syndrome. Also chronic fatigue syndrome. I’m in full support for our rights to be treated. Pain affects every aspect of my life. Without medication I wouldn’t have any quality of life. I would love to attend the rally depending on if I’m having a severe pain day but if there’s anything I can do, I’ll be happy to
A family member was diagnosed recently with Crohns disease. Found out after going to his doctor for sudden pain so horrendous he was doubled over, walked like a 100 year old man, with all his joints noticeably red and swollen. Had already lost almost 15 pounds in one month from diarrhea and no appetite due to the pain. While he was put on a biologic, it only helps make him feel 50% human for a short while. He has been on three different types trying to find one that will stop his flares. He turned from a robust, healthy man, to looking like a skinny old man who should be wheeled around in a wheelchair with a blanket over his shoulders. All within a four month period. Whenever he has a Crohns flare both his specialist doctors will tell him they no longer will prescribe any pain medication to get him through his flares. He has been told to take Ibuprofen and Tylenol Arthritis to help him. These OTC medications do not even touch the amount of pain he is in. All he wants is pain relief to get him through extremely painful Crohn flares. His doctors are scared to death to prescribe pain medications for fear of government reprisals, all because some folks abuse the system. Now the rest of us have to live with horrific pain because our doctors are scared. Our government officials need to come up with a better system of regulating pain medication. Most people do not abuse them, but need them to function on a daily basis. There is no enjoyment in my family members life anymore. Just a hope and a prayer that he can withstand another day of pain. With our government actions they have done nothing but make normal law abiding citizens go to the dealer on the street just to buy pain medications they would previously be prescribed. How did that happen??? Now there are many people out there who once held jobs and were productive members of society. This insane crackdown of prescription pain killers has made them lose their jobs, with many of them losing everything and relying on family members to help them. How about going after the bad apples and leaving the rest of us alone with our doctors!!
Hello, i would need more room to tell you my story.
Pain, is truly a four letter word. It took my real self away. It stold me, from the prime of my life. My hopes and dreams were gone. Everything i worked so, so hard for, GONE.
It broke my wife and children and our family.
The system that is supposed to be there to help people like us, with chronic pain, has failed ,not just me, but the thousands of people like me.
We are instead labeled and called things that are degrading to each one of us.
Now, as if the fight everyday to survive isnt enough, we are being Stigmatized again.
Why, Why are they putting this unbelievable Stress on us that are suffering.
The Medication that gives us the relief, so we can function and the little bit of Quality of life,is being ripped away from us and were being singeled out Again. The procedure’s we receive are being denied by insurance companies and medications too. Why?
The only people that can truly understand what i am saying, are those of us who are suffering so greatly ever minute of every single day, with PAIN..Pain does not take vacations or BREAKS.
Please, I am Begging , Please stop this. Please.
Punish the Doctor’s and Clinics and individuals who are abusing and breaking the law, but, I am Begging, not to punish us, that need our Medications and procedures and take our Meds as prescribed.
I get blood drawn, pee in a cup and bring my pill bottles in to be counted. I get mental health evals at every single appointment.
PLEASE………………