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 do not appear right away.
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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 do not appear right away.
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.