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.
1,008 Replies to “Share Your Pain Story”
Leave a Reply
You must be logged in to post a comment.
3 lower back surgeries and have cervical mylopathy in my neck with degenerative disk disease also the nerves are pinched. Had surgery on neck in 2015 now it has moved to the next vertebraes. Also had 3 staph infections operations because of the surgeries. In pain from a 5-9 everyday. Pain meds help but not a lot. I see my doctor every 3 months for refills, but he keeps suggesting I stop them.
I’m 61 years old. I have had 3 lower back surgeries and have cervical mylopathy in my neck with degenerative disk disease also the nerves are pinched. Had surgery on neck in 2015 now it has moved to the next vertebraes. Also had 3 staph infections operations because of the surgeries. In pain from a 5-9 everyday. Pain meds help but not a lot. I see my doctor every 3 months for refills, but he keeps suggesting I stop them.
I think it is a shame people can’t get the medical help they need. The pain clinics are pushing all these injections a little to far. At times they can make your condition a lot worse. Sure ice,heat& therpy may help but when it takes every minute of your time to do all of this what’s left for living. I can see the doctors having a problem with other pain meds. I can’t imagine anyone abusing opoid meds. This has to be a joke. I feel for anyone that has to put up this.
My name is Betty*, I Live in Wisconsin. My chronic pain story begins in March of 1990 when I awoke unable to open my mouth and in severe jaw pain. Four jaw surgeries later including bilateral open joint jaw discectomy, In 1993 I was in a MVA with my children, we were broadsided by a teenager on a rural country road three days before Christmas. I was unconscious for an unknown amount of time, suffered from a TBI, skull fracture and severe neck trauma, the greatest tragedy was losing my beautiful 8 year old daughter. After the MVA I was in 24/7 pain and have been since. I now have osteoarthritis literally from my toes, both knees, my left hip, severe in my neck, upper arms and in my TMJ space. In 2006 I suddenly on a beautiful summer day became very ill, started projectile vomiting which by the next day I was not able to hardly walk. After calling an Ambo-van to take me to the ER/I was admitted with severe gastrointestinal hemorrhage. I was in the hospital for a week as they found bleeding ulcers, a WBC of 20,000, severe abdominal pain and a 100% blockage of the pyloric sphincter muscle. FF to November of 2007 I had to have 3/4 gastrectomy done, Why???? Because of the overprescribing of NSAIDS. In 2012 I fractured my right wrist after losing consciousness following a fall. In 2017 I could no longer walk as I was in SEVERE pain in my right hip ALL the time, could not sleep either. Desperate for any relief I had a total hip replacement. They sent me home the following day. The next evening I fell at home and obtained a femur fracture. Another surgery to repair the fractured femur and a week in
the hospital. I was home 7 days and was doing pretty good until I fell again. I landed on my carpeted floor but my phone went flying out of reach. I was found 3 hours later by a family member. I was taken by ambulance to the nearest hospital. Unbelievable but the hip replacement had popped out of joint and this time I had two more femur fractures above and below the repaired femur fracture. 5 more units of blood and a 5 hour surgery the following day to repair it. A week later I finally went home WITHOUT any pain medication other then tylenol. Unbelievable!!!
The pain clinic I had been going to closed on November 2017. Since that time my quality of life has been nonexistent. I never abused or sold my medications but I cannot bear to be treated like a addict when all I want to do is have “Quality of Life”!!!! I used to do my own shopping, cooking, laundry, do things with my son and grandchildren. Now I am forced to exist, unable to barely walk, cannot shop, clean, cook, go anywhere because the small amount of medication I was on is no longer available. Sometimes I feel that the worst of it is that I cannot sleep, maybe one to three hours per day. I have PTSD, Nightmares, chronic insomnia along with the pain. The meds I was on for 28 years to allow me some rest have been ripped away because my physician moved. I wish there was someone somewhere would help me. Thank you for listening. You are not alone!!
* Betty is a anonymous name
Hey my name is Patricia Kendrick an I have fibromyalgia and degenerative disc disease I done have neck surgery and I’m going to have lumbar surgery on September 27 and the doctor that I was seeing was careless with the people’s drug test and it made me lose my pain meds and it’s was not right for them to be careless and it my word agains their word for leaving the drug of other people and not get them out for the next people to do there drug test they let 4 or 5 at a time or more and someone can be dirty an they can steal someone drug test an I should know it happen to me and now I suffer in pain
An auto accident when I was 16 years old did a lot of damage to my spine. Now, I am 65, have had 3 spine fusions and live in pain. To force me off of these pain pills was a criminal act. I NEVER abused the pills and never did anything illegal with them. In fact my doctor complimented me of the management of them.
PLEASE let me have them so I can do normal things, like mow my yard, do laundry and house cleaning without severe pain.
Where is the compassion that the medical profession has sworn an oath to?
I cannot heal like a younger person can.
john
Hi. I have lived with chronic pain since childhood. I really don’t have any memory of not having pain. My mother took me to doctor after doctor. They said it was growing pains. I am 5′. I did not grow enough to have this much pain. Early on I was diagnosed with fibromyalgia. This was at a time everyone thought it was a bogus thing. Not until my 30’s did I find a pain clinic. For about eight years I had a pain management regiment that would at least help me walk and not take my own life. One day I get called in and they say my blood work was devoid of all meds. Now I take many meds, and they said none were in my system. My husband was there. He explained that he gave them to me daily that there was a mistake. I told them I was going to investigate because either they or the lab made a mistake. Now keep in mind for all those years I passed every test and pill count. They right then dropped me and I walked out without meds. They cut me off fetalin and norco just like that. The withdraw was terrible. I have tried other doctors but they look at me like I’m a drug addict looking for pills. I don’t get how if something helps so you can at least find a few moments of relief why I have to do without because of others actions. I get tired of being made to feel as if I am a bad person because I have a disorder.
I have been in pain mgm for 13 years when out of the blue my meds were cut 150 to 60 iv been through a very hard time tryn to deal with this i went from being up all day like everyone else to spending more time in bed than being out when i got in pain mgm i was at a breaking point no life the pain was unbearable due to a head on collision with a drunk driver at over 100 mile per hour dr tried to get me to get disability in1989 but i worked untill 2006 and it took till 2010 to get disability my dr at pmgm got me on a plan and it made my life able to where i had my life back im raising my 15 year old son alone but since the goverment put the limit on certain meds im back where i started at this is just wrong to do this to any humanbeing im 58 years old i didnt do this to myself but because someone got drunk and hit me my life has been altered
1n 13 years i never asked my dr to increase my meds or change them he said that it doesnt happen often it was working i did nothing to deserve this
My boyfriend of 18 years was involved in mv accident at 21yrs old. He’s now 45. He broke his neck and back and had a head injury. Coma for 3 weeks also.3 surgeries later and only his neck fused correctly. He went through all non narcotic routes. Ended up with meningitis from nerve blocks. He was on everything from fentanyl patches to OxyContin. He didn’t like the way the meds made him feel dopey. Then he was put on methadone.wow was he doing great. Clear headed and out of pain. He’s been on that for years. For the last 7-8 years he’s been on same dose daily. From same Doctor. His Dr said he was going to cut his dose to one fifth, regardless of pain or quality of life. He said that wasn’t fair. They then referred him to an addictionologist /Suboxone Clinic. The next month his normal Dr sent him to his nurse practitioner, so now instead of 10mg taper a month they’re going to taper 30mg a month. That’s barbaric and just plain torture. If he complains it’s off to the detox Center. All this is happening to all of you and all your prescriptions aren’t supposed to be included in new laws. What is going on? This has to stop. The best part is the new Dr said and I quote”I’m not going to lose my house for you”apparently that’s the reason my bf is going to be tortured.SMH.
I was diagnosed in 2014, but had suffered symptoms for at least 10 years before with my body was attacking all my organs with multiple surgeries as a kid to a hysterectomy at the age of 39. I was told by my family Doctor that I was just unlucky. He finally couldn’t ignor my symptoms and sent me to a Rheumatologist assuming all I had was Fibromyalgia, we were both shocked to find out that I have a very rare genetic arthritis called ankylosing spondylitis which causes my spine to fuse and my pelvis to thicken along with other extremities to swell and cause painful movement, and we learned that my imflamitory markers were tripled what they should have been. After diagnosis I was put on several meds and a biologic. We tried many meds including therapy and muscle relaxers and steroid injections to anti inflammatory meds. All treatment protocols were tried to no avail, I was finally sent to a pain specialist. I was put on pain medication to manage my severe pain and it did help, so I continued to take them for the last two years.Recently my biological that I had been on for the last several years stopped working, and I was put on a different biologic. Fast forward to the CDC guidelines, which were only meant to give guidance to general practitioners to be careful prescribing to new patients, the blowback toward stable pain patients began due to overdose deaths caused by illicit (illegal) heroin laced with carfentanil sold on the streets or online.
To be clear the drug problem is due to those who are NOT treating pain, but use to escape from life. It is not fueled by legal prescriptions to treat pain!
Due to anti-opioid zealots of PROP and politicians using the illicit opioid epidemic to get reelected, we have been the casualty of this misinformation media campaign.
We are protesting the inhumane CDC 90 mme prescribing guidelines, which is causing inhumane pain and suffering.
Chronic pain patients are loosing their quality of life. And in many sad cases, people are choosing to end their lives, because of undertreated pain.
Doctors are afraid to prescribe, for fear of prosecution, insurance companies forcing tapers, and our US Veterans that have been cut off completely due to these guidelines. Pharmacies are turning people away, due to shortages, forced by the DEA.
We are holding rallies across the nation, and all the information can be found on this website.
Please share with your friends and families. Thank you! ”
**Please join: “Don’t Punish Pain Rally” (fb group) (Nationwide)
***Even if people aren’t on facebook, they can find out about a rally near them, by going to this website: https://www.dontpunishpainrally.com
Wow, some of these comments, these things happening to them it’s brutal. I was DX with Crohn’s (severe) in 2015 after emergency surgery to clear a blockage. I went til 2018 without taking anything besides Remicade. I finally woke up one morning in some much pain, I just said then….”I can’t do this by myself anymore”. I got a referral to PM .
I feel really lucky because my doctor has been super compassionate about lowering pain levels so I can function. I do the best with a fentanyl patch.
It is incredibly frustrating with all the testing,poking, prodding, ineffective treatments, drug tests, labs, dr. appts, we have to go though as patients just to prove our need..addicts aren’t doing what a real pain patient has to do to get the meds they need, on time too!
Thank you for getting our stories out. My luck changed in 2010. Underwent my first brain surgery. One year later, and I was going in for brain surgery two. Talk about pain and anxiety. The two surgeries were to correct my pain, but it remained the same. Went through what everyone here has probably gone through: the poking, the tests, the repeating of my story over and over, hospital stays and multiple medications. It’s overwhelming, at some point you just want the pain to decrease just enough so you can function. Never mind all the amazing activities i used to do beforehand. Shortly after brain surgery number two, I wound up in in the hospital for a week with a mega colon being caused by an infection. I almost died. I was told I had my youth on my side. After being released I never felt the same. Sick and severe abdominal pain around the clock. I had to wait for my colon to heal then go in for a colonoscopy. And let the testing and bad news begin once again. Diagnosed with Crohn’s disease with a stricture. Once again becoming a lab rat whether it’s testing or some kind of new medicine. This time it’s humira. Have you ever seen the commercials for these biologics, geez they are scary. Unfortunately the Crohns has effected all my joints, known as crowns arthritis. I do not wish this upon my worse enemy. It’s in every joint including fingers,
toes, neck, shoulders, …Well to end my story I’m on multiple medications. My pain management doctor has been nothing but exceptional along with my pharmacist. I’m not abusing any medications, but I have been effected by the new laws in terms of receiving anxiety medication. Try dealing with waking up everyday knowing the pain I’m in and the anxiety I go through. The psychiatrist says with the new laws it appears I’m doctor shopping and that my pain management doctor should be prescribing all my medications. Doesn’t make sense to me. You are the professional doctor that has been treating me for years and just like that, he feels threatened by a new law
and I suffer for it. There all several unfortunate events that have happened along this journey, such as a blood
clot from the my pick line that has left me with thoracic outlet syndrome. Oh yes and all the arthritis in each and every one of my joints in my feet has left me
with plantar fasciitis, not in one, but both feet. These law makers think everyone receiving pain medications are opioid addicts. The reality is that most of us have gone through the ringer and do not deserve to be treated like this. I would never want anyone to go through what I have had to the past eight years. It’s beem miserable. No one should have to suffer.
I got chronic pain from a failed neck fusion where the doctor did not listen to me and caused more neurological damage and neck and low back, leg spastic. its hard to get good treatment in able to live like others who take there life and options for function for granted. it has been a struggle to get help because I am taking pain medication. I just want to live and function I wish this country would get a glue.
I have dietetic neuropathy, my entire spine is deteriorating , fibromyalgia , arthritis in 70% of my joints and my rib cage is collapsing. . My pain meds were cut in half when the regulations on the 50 MME was put into regulation with Postings all over my PCPs office advertising it aaa law !!!! This is My new Doctor by the way , because my Doctor of 25 yrs retired telling me all this was coming and he will not practice if he can’t be what he is … a physician !!!! Too many great compassionate doctors are being run off. Now i have to live in fear of no pain meds being prescribed and what will happen to me !!!! I barely get relief since my dose was cut in half . But I learned some relief is better then none . I at least get 3 to 4 hours out of my day to cook a meal and do short errands . And I need that . My husband at 70 yrs old cannot drive because of his health issues , they will not even allow him a driver’s lic. So who will do our grocery shopping, get us to our appointments, ETC. If my pain meds are gone and I am also useless and can’t get that few hours of pain relief. And also living my life in anxiety makes the pain even worse …. somewhere in this system has to be someone with heart …. i have to believe in that to get through the day .
I have several auto immune diseases, n several other health problems that cause chronic pain. I have it everyday n it just gets worse n I don’t get help from. My Dr, and I’ve been waiting over a year on my disability, n I still don’t have it. My husband left me n called me lazy because he said it was all in my head. He didn’t try to understand my health problems.
For more then 30 years I’ve suffered from chronic back pain. Now in my later years it has only gotten worse. I’ve had one back surgery so far and another one is about to happen in a day.
For 8 month’s now I’ve been suffering with a pinch nerve and the pain is ungodly!
Up until July when the law makers decided that the war on drugs wasn’t working they decided to overstep their boundry’s by pretty much banning the use of pain meds. and not allowing the doctors to due their jobs of taking care of their patients. I have XRays, MRI’s, proving I have legitimate issues. I’s been to Chiropractors, Orthopedics, Pain management, and now a spine surgeon.
These law makers have decided to sue the drug manufactures making it even harder for me to get relief. I need to function and I can’t do it. My Primary doctor won’t even give me the 7 day script. I’ve been very civil so far in this letter and it does not come anywhere near how I really feel. I can only hope the Law Makers goo back and reevaluate what they have done to the people who put them in office and correct this issue.
I was involved in an auto accident 24 years ago when no,one knew what RSD/CRPS was. After many doctors and pain management offices where I had to wait 3-5 hours to see the doc for 2
minutes if I was lucky. Different pain meds were prescribed besides other modalities to help my pain, we finally found a combination of meds and life style helped me. Guess what?? It was a Fentanyl patch that helped keep my pain at a tolerable level and I could still function in my own home. I have never called any doctor I have gone to and asked for more pain medication. i
worked through my pain with feed back, hyperbaric oxygen therapy treatment when I could afford it. Now people that do not know my pain or asked me to fill out a pain report are deciding how much medication I need. My anxiety level when through the roof if I had to try to find a different medication to help me at 70 years old. Please help us not just addictive people. We live by the laws in our town and country. Thank you for,listening. I can stand by you in spirit since I cannot walk too far.
I’ve been dealing with degenerative disc disease for 13 years. C2-C7 fused with throatplate, but T1 is going so plate is protruding in esophagus & flattening spinal cord. Also 2 levels didn’t fuse. 2 surgeries L3-S1. L2 herniated. Was Tboned by truck, TMJ, rotator, reconstruct bicep, & injuries to both hips. Dr wants to wait to fix as long as possible so not have to repeat as I’m only 52.
I can’t tell u how much pain I have in a day & how pain meds saved my life. I’ve been on them for 13 years and never took the full doses because I don’t want to be over medicated. I would qualify for disability but I refuse to. I sub teach on my good days & before accident did a 5K. Since the new laws on pain meds I’ve been doing Cryotherapy which is a miracle as I got off fentanyl patch as it helped to eradicate full body inflammatiion. I weaned myself off that myself. Now not only is my insurance not covering for my oxycodone, but my Dr can no longer prescribe Ambien which helped decrease pain &basically haven’t slept in 6 weeks. I can’t do anything that increases my pain so basically I have no life. I’m to the point that I’m considering THC. It’s a matter of time until I can’t put off getting my disc in neck done before it becomes stenosed, but the way they treated the pain before I had a pain dr, I just wanted to die because it was unbearable. I have a wonderful husband, teenage son, & daughter in college and I want to be here for them, but after 8 major surgeries I’ve had, i don’t know that I can go through it with the laws as they are.
I’m 5 days out from shoulder replacement, I was only given Tylenol 3 for pain when I called to get something else I felt like I was a drug addict with the question asked. I was finally given Tylenol 4. Whoop whoop.
I am a mother of 6 who has always been active with my kids and my community but, 7 years ago I was diagnosed with R.A., Fibromyalgia and Lupus which has severely limited my ability to be an active participant in my childrens lives and education. It has been made much worse by the fact that I now cannot get the meds that help me function and give me a better quality of life. I do not take opoid medications in fact I take a medication called tramadol that has no opates in it at all and I am still not able to get my medication so that I can have some semblance of a life. I recently moved and this has made life with chronic pain even harder because now I cannot even find a Dr. that will take me where I live now. They are so scared of the new guidelines and looseing their medical licence that they won’t even take a chronic pain patients at all. So I am now stuck with the problem that I can not even get my life saving lupus medications because of this so called addiction crisis. I will die within a year or so if I can not get the other meds that I take that have nothing to do with any pain medications at all, As a matter of fact they are just the meds that keep my immune system from attacking my organs so that I can live long enough to watch my children grow up, go to college and even get married. I am scared to death that I will not be able to find a Dr and that I am going to have to live with this horrible pain for the rest of my life.
There are not enough words to express my concerns for not only my wellbeing but others also. I struggle with pain and the lack of proper health care has made it harder. I was seeing a doctor and because he got scared of the government he told every patient only a couple weeks in advance he was closing down. This doctor really was my blessing for a year and a half and since hes left I’ve been nothing but miserable for the last 4 months. Please dont punish us who suffer with pain no matter age, race, and other factors. Please consider the symptoms and that we haven’t chosen to be like this. I really just want to be where I was. I was able to care for myself more then this and I never expected for my pain to be completely removed but to a level where I can function. I’m crying typing this because I really know how much a low dose of opiods has helped me and it feels so unfair to feel stuck like this being 24 with so much pain I can’t get out of bed or hardly walk by myself. Thank you. God Bless.
My pain started back in late 1980’s, I was hurt at work. I was hit by a 2500# pallet of boxes of paper. After working for 15 years I was let go, no job with my injuries. As of today I’ve had , two lower back , one neck, three carpal tunnel surgeries. I also have diagnosed with neuropathy of my feet and hands. My Doctor of 15 years has reduced my pain medication by over two thrids and still taking more away to get to the 90mm. I can’t sleep and when I do yard work, I can’t move for days. If anyone knows of a Doctor with a heart in the Milwakee , West Bend WI. area, PLEASE let me know. I can’t take this F—– Pain anymore.
I’m a 60 year old grandmother living with chronic, moderate to severe pain. My journey with chronic illness began at age 5. My response to getting my school vaccination was to sleep the afternoon away. Called down for supper, I came downstairs, & fainted in the kitchen!
By age 11 I was having night time bouts of painful gastritis (undiagnosed); afraid to worry my mom, I never told her, although I wasn’t getting sleep. I must have complained of pain though, because at some point during this time I was hospitalized, with “growing pains” the only diagnosis. My fainting spells were more frequent; shocks to my system – like slamming fingers in doors – usually ended in fainting.
By now I also was having difficulty chewing without popping and pain in my jaws, which was not diagnosed for years as TMJ. Unhappy at home (I didn’t speak to my stepfather for years before his passing), I quit school after 11th grade, left home, got pregnant & married, and had my first baby att 17!
My chronic back spasms began during pregnancy. By age 21 I was a divorced mom of 3. At age 24 I started college part time (got my General Equivalency Diploma at age 20), at Penn State. It was difficult to pursue my education, because I was solely responsible for my children, the my eldest son also with multiple health/emotional issues.
By my 40’s I was remarried, with a degree from Penn State. In our small town good jobs are scarce; I’d ended up working in a greenhouse for many years, k doing very physical work. During one winter hiatus, my health fell apart. I’d had worsening symptoms and new issues creeping up ; they all coalesced to me hadly being able to function, let alone go back to work!
My doctor ordered batteries of tests – blood work, cat scan, x-rays. Over the next few years I received multiple diagnoses. Osteoarthritis in multiple joints, with tendinitis and some bursitis – I’d been suffering from severe plantaar fasciitis and Achilles tendinitis already – by this time I was also having trouble using my hands and one hip was severely painful. Fibromyalgia was diagnosed, along with chronic fatigue; migraines; IBS and chronic anemia tied in with the chronic gastritis and chronc inflamed stomach – diagnosed through multiple stomach scopes; Degenerative Disk Disease tied in with my lower back pain & chronic spasms; bladder scopes showed interstitial cystitis; my chest wall pain was chostocondritis; a broken foot years before had resulted in foot neuropathy. With even more health issues, I hurt so badly all very I could barely function. Over the years, as my health declined, I also had to deal with worsening anxiety and depression. My past major diagnosis was Lyme disease a few years ago. Addington to this was my responsibility to !y disabled son.
42 years ago I gave birth to a beautiful boy – who would not sleep! I tried everything, but he slept only a few hours at a time. He walked at 10 months – and by a few years it was obvious there were hyperactivity problems something I had no knowledge of, and the many pediatricians we saw didn’t either. Aaron was finally diagnosed with ADHD at age 5. At age 2 he’d begun making odd faces, then dd jerking arm & leg movements, then chronic coughing, snorting and throat clearing. He was prescribed Ritalin for ADJD – the nvoluntary movements went crazy. Again I was left searching for answers. A TV commercial done by William Shatner finally showed me the truth – my son had Tourette Syndrome – something else I’d never heard of (years later, after my nephew developed facial tics. my mother today me she thought her younger brother – by then deceased – had had a me form f the disease, so it was already in the family, along with undiagnosed OCD). By the time he started middle school, Aaron was suffering from anxiety and depression, due to the cruel teasing he endured. By high school my handsome son was the first in our area to be in both the gifted and learning disabled programs. I had had to advocate for him all during his school years. Both ADHD and TS can make concentrating, writing, and completing assignments difficult, and Aaron, although he attended the entire 12 years, he didn’t meet graduation requirements. He too got a GED – with the highest score they’d seen at this school!
I then began fighting to get my son into a local campus of Lock Haven college. I fought and won funding from a government agency that helps the disabled, and along with loans/grants he began college. His second semester (started at the main campus) he came home complaining of pain and numbness down his leg. His journey with chronic pain had begun.
X-rays and cat scan and showed DDD, with a ruptured at L5S1. An orthopedist suggested mmediate surgery, but we anted to first try injections. At the first injection, they discovered a spinal deformity (our family doctor now says it is a familial trait – thus an inherited family problem. The series of injections didn’t work, so his first back surgery as done at Hershey Medical Center. Unfortunately Aaron’s had 2 surgeries since, to excise scar tissue. Scar tissue has damaged the nerves to his bladder, causing severe urethral pain. His bladder can’t fully empty, causing constant discomfort. He has constant back pain, with increasing damage along his spine, plus arthritis, with additional damage to the joints he consistently “tics”.
My 40 year old daughter started having back spasms at age 19 (same age my son’s issues began, 2 years later than mine). At 27 she had her first child, after a battle with premature labor; he was 3.5 lbs, taken 9 weeks early via ceasarean, after Adrian developed toxemia. This was the beginning of her pain journey. A few months later my daughter was back in the hospital – having her first of THREE neck surgeries. They removed half her thyroid, due to a semi solid cystic tumor (my niece had hers removed a year earlier due to cancer). A year later the other half was removed. A few years ago a third surgery was done to remove scar tissue. She now has another unidentified growth in her neck, meaning a possible fourth surgery in the near future. We found out that a malfunctioning thyroid can cause problems carrying a baby full term.
Since the loss of her thyroid, my daughter’s health has collapsed. She’s been diagnosed with osteoarthritis (she needs a knee replacement), fibromyalgia, IBS, migraines,
Lyme disase, DDD, etc. etc. She recently had a cancer scare; the possibility isn’t fully resolved. After having 5 teeth removed a few months ago, she’s developed chronic mouth ulcers, leading both her doctor and dentists to suspect an autoimmune disease. She’s been having monthly issues with manic behavior -she’s s heduled to see another endocrinologist for both the mana and mouth problems.
I live n chrnic pain from multiple health issues, as do my son and daughter also – by no fault of our own. I take opioids to relieve my past n and enable me to take care of my family, especially my son, my 71 year old husband (dying of heart disease and COPD) and the grandchildren in my household. If we lose access to our meds – the current restrictions are making it increasingly difficult to fill prescriptions – there will be NO adults able to do the cooking and housework. I try periodically to go without my meds, to see if anything has improved, to no avail.
My son (me) is battling the insurance company for preauthorization, because he needs both a fentanyl patch for urethra painand, oxycodone for breakthrough pain and lorazepam to help him sleep, and help his back spasms & anxiety. They say he’s over the limit with the 3 meds.I wrote out a detailed health history to include with the doctor’s request. If it’s denied we have no recourse other than filing a grievance. And complaining to the insurance commissioner. My daughter’s been lucky so far in getting her pre-auth. I hear that medicare will be tightening there requirements and allowances next year. Medical assistance can’t be far behind. I’ve been happy that my youngest son has been very healthy through his 38 years. He’s now having nv issues with his uonar nerve causing his hand to go numb. I pray it resolves itself. No one should have to live in chronic pain. And worry that their meds will be torn away.
I have been living with the constant all over pain of Fibromyalgia since 2008. I believe a flu that effected all my muscles was the start. The fibro fog caused me to struggle at work. Then the pain escalated and I left work. I spend one to two hours on heat after rising each morning as I am in the most painful part of the day. I hurt so badly toward the end of my medication that I want to just curl up in a ball and cry.
While walking the two miles to work, a car came around a corner much too fast for the conditions (the sun was shining at 8:45 am, but it had snowed a couple of inches of heavy, wet snow earlier). It was January 10, 2003. I almost made it to work. When the driver saw me he stomped on his brakes causing him to slide into me broadside…There was nowhere for me to go…it happened so fast that there was no time for any thought beyond, ‘Oh, $hit..’ When it struck me I evidently tried to push off it just as the tire slid over my foot (it wasn’t rotating just sliding)..As I pushed, hard I couldn’t go anywhere as for that brief second my foot was pinned…I felt a fast and hard yank from the base of my skull to my feet. I was thrown about 15 ‘ partly over and partly into a snowbank that was hard as cement…The driver hesitated for a moment and then fled …It was a while before I was seen..
. If I’d been given an MRI instead of or in addition to x-rays, sometime in the next week, they would have seen two tiny chips off a vertebra in my lower back.. These chips migrated around and managed to puncture three holes through the covering of my spinal cord. It leaked caustic spinal fluid into the tissue; ligaments, tendons, muscles and demyelinated the nerves….literally burning off the protective covering of the nerves.. (had a few more, although not very complicated fractures, including the bone along the outside of the rt foot and a crack in the ankle bone). My PCP sent me to an orthopedic guy, physical therapy and others until he simply gave up trying to figure out why I was getting worse …off I went to ‘pain management’…He ordered an MRI found the leaks, got them plugged and stopped it from getting any worse, but the damage was done. It was 11 months after the accident. I had nerves being BURNED for 11 months . I spent the next 13 years trying different pain meds…and different PCPs until I was able to get a good combination of meds and physical therapy…Then in 2016 my state government (thinking they were doing a ‘good’ thing, or, much more likely, that they thought it would LOOK GOOD and not cost any money) decided to limit all narcotic pain meds to 100 morphine equivalent milligrams …I was at 245 mme…fairly modest for the severity and length of time of use…I will spare the reader from the horror show of a ‘step down’ in meds…I all but ceased to function. I now spend 85% of the time in my recliner with the tv remote in my hand. All along I had had ‘flares’ fairly frequently that not only caused extreme increases in pain, fatigue, odd changes in skin colors and temperatures…most obviously the right foot and ankle swelled and discolored often. Three months ago I discovered a website, totally by accident, that was all about Complex Regional Pain Syndrome ((CRPS…formerly called RSU))….I was floored by the info…IT WAS ME….I had 90% of the symptoms and I learned that this is considered to be the most painful condition in the human experience. I sent my doctor links to all of the reputable articles and treatment suggestions ..He was as surprised as I was and is still researching but agreed and gave me (finally) a definitive diagnosis …We are going to try to get a ‘medically necessary’ exemption from the daily limits that have been imposed. If it was cancer or if it was terminal I could get my exemption, even though this disorder ranks higher on the McGill Pain Index than bone cancer (and everything else). I am suffering terribly ..ever minute of every day…The pharmacy and insurance company seem to think that the one exemption point that SHOULD qualify me, ‘PALLIATIVE CARE’, is the same as hospice (read terminal) care…the definition of palliative does NOT say ‘terminal’ …only ‘serious illness’…My local hospital just opened a ‘palliative care practice’ and I’m waiting for an appointment . I cannot afford to sue the state over the arbitrary limits (two who did threaten to sue quietly withdrew their pending suits, so they got their exemptions). I would sue if I could …I was able, before the lower meds, to take care of myself …I could do most of my own grocery shopping, laundry, simple cooking (elaborate meals used to be favorite pastime ) and light housekeeping …but not now…This has taken away my LIBERTY..The last time I left the house was for 45 minutes to have coffee with my brother from far away. Before that it was a June doctor’s appointment …I am as determined as I can be to try to regain some semblance of a life…There is a reason that doctors quietly call CRPS ‘the suicide disease’..I don’t want that to happen…I have two adult sons that I love very much…I can’t afford ‘black market’ pain meds…Some in my online support group have started to snort the cheaper (and more readily available,) heroin….I DON’T WANT TO USE HEROIN ..I don’t want to be a criminal….I don’t want to die…I want, no…I NEED relief….Some parts of the new laws are good…like the ‘prescription monitoring’..this keeps people from ‘doctor shopping’ and getting multiple prescriptions at multiple pharmacies…In the almost 16 years since my accident I HAVE NEVER DIVERTED A SINGLE PILL….I NEVER FAILED A DRUG TEST…I NEVER FAILED A PILL COUNT..I NEVER HAVE GIVEN MY DOCTOR ANY REASON TO MISTRUST ME …I HAVE NEVER ‘HAD STOLEN OR LOST PILLS’….NEVER ASKED FOR A REFILL EARLY .This ‘daily limit’ on people in excruciating pain isn’t making a dent in the overdose or addiction rates…People like me don’t sell the only thing that makes their lives tolerable…Were some people selling their pills…? I’m sure there were some who did..,but not those in real pain..All this ‘limit’ is doing is increasing the ‘demand’ for drugs…which is increasing the ‘supply’…especially through the ‘out of state thugs’ that the governor speaks about….The state legislators are clapping each other on the back, congratulating each other for having fewer prescription pain meds being prescribed….THIS ONLY HAS THE APPEARANCE OF PROGRESS…but it isn’t progress…it is torturing crippled, old women like me..I got here through no fault of my own…I DIDN’T START OR CONTRIBUTE TO THE OPIOID CRISIS..and my heart aches for those who are suffering or seeing an addicted loved one suffer…like most families, it has touched my own…But, I cannot see how torturing me alleviates anything for someone else…For more than two years I’ve been stuck in this recliner…on rainy days like these it’s all I can do to just breathe…If I supplement my pain meds with anymore OTC NSAIDS I will tear up my liver and kidneys (and I’m too old to get a transplant…but government funded insurance WILL be faced with paying for a bunch of transplants and expensive dialysis and other treatments sooner rather than later) There NEEDS to be a widening of the exemptions…to avoid costly medical care and addiction treatment…to slow down the overdose and addiction rates…and to alleviate a little of the suffering for battered broken old women, for our permanently disabled veterans who had vicious injuries..for anyone who needs a higher dose than the current law allows….I DON’T WANT TO DIE…
I was born with Stiff Baby Disease that later in life became Stiffman (person) Disease . I also was in a horrific tornado that destroyed our home at 18 months causing what we know is PTSD. At age 6 I was sent to Lebonhor Hospital in Memphis with a large bleeding ulcer. At the same time I had the first of 3 spinal taps to confirm that I had StiffPerson Disease by then. At 18 after moving to Indiana with my first husband, I was viciously attacked with a butcher knife and raped. Having been left for dead, determination to survive took over and the paperboy found me at 5.00am laying on our front lawn. 11 hour surgery to sew me up left me with 475 stitches inside and out. Also ruined my chance to every have children of my own. This left me with Severe PTSD and Severe Panic Attacks. Taking Valium and Soma at the time I was also put on opioids for the pain it left me from Attack, I made it through the first of 2 academies I attend. The first was the Law Enforcement Academy at 12 weeks and the second only 2 weeks later was the Fire Academy at 9 weeks total. I saw things that no human should ever have seen in my career. And same year was taken off of the Valium and placed on Xanax. as well as being diagnosed with Fibromyalgia. But in 1999 after busting up a college party off campus, I had arrested a young man that was about 6’5″ and weighed 280. He was fine until we got to the jail which was a highly secured facility. In a small area that we have to go through for one door to be shut and another open, his “HIGH” kicked in. He was PCP. As I almost had him to the ground to hold him til I got help, two jailors jumped on us and I landed on bottom somehow of all three breaking my lumber back in 3 places. I retired 4 years later as a Captain on the force and a LT on the fire and Rescue squad. I worked a lot of undercover work, buying street drugs and going from a crack attack to being a high society person.
In 2004 I fell and broke my knee cap and was fused under the underside of it. By then the Disease I so dreaded had returned with a vengengence. 2006-2007 was one of the roughest years of my life. Our home burned to the ground. I lost my niece at birth, a nephew , then my late husband died, my uncle, my grandmother, my little brother, and little sister. PTSD was in full force and thoughts of suicide filled my head. 2008 after a blizzard I fell and broke my arm and my wrist known as a spiral break.
2010 as I was riding my Harley, I was stopped in a turn lane to turn left. I was waiting on traffic, and the next thing I knew I was in the Trauma Center in PA. Being told the story was as scary as actually remembering the only thing I could remember was being thrust forward. The official record stated that a man trying to pass stopped traffic hit me at 65 miles per hour, flipping me and the motorcycle 2x into oncoming traffic, where a retired state trooper kept the traffic from running over me. I was airlifted to the nearest trauma unit and because I landed solely on my head cracking the helmet I was wearing, being unconscious, having no memory except my future husbands parents house address, the chaplain God love her found my future husband and he was brought to the hospital by an escort of state troopers. I ended up with a level IV concussion a broken eye socket that had gone into in my sinus cavity. However they had not cleaned my face from the debris on highway and I ended up with MRSA on side that was Broken . In 2011 traveling down south to fish for a month I scratched the top of my head and ended up with severe cellulites MRSA again almost losing my eye, That same year was my last spinal tap never to have another one to confirm Stiff man Disease. We moved in 2014 to Arkansas. My DO in PA, kept telling me that this with the medications would happen, and I kept saying I have 20 doctors not me. But arriving here I had to have botha family and Pain doctor. 2 months in was the first time he was shut down. I hadn’t been off this medication for over 30 years. 2016 after he was closed down yet again, I had a what they know now as a spinal stroke. In 2018 had two separate things happen. I feel out of a tree stand, and was involved in a rollover wreck. The wreck left me with a broken neck. After it was repaired according to the neurosurgeon (it was fixed) he told us my spine was twisted and there was nothing he could do about that.. After I received my reports from all the doctors I had to see to have surgery (3 months with a broken neck) I learned that my MRI showed I have spinal tumors pressing into in spinal column as well as my entire back was bone on bone.
I have a list of every disease disorder and syndrome I have and I don’t have time to go through them all but in 2018 I lost my pain doctor yet again and finally found one that has taken me 7 months to see, with no help from family dr, and then getting a letter from same dr saying I had to find a new doctor because I was a pain patient. She didn’t even help me from a disease I was born with. So today saw a new family doctor went through medical history and his was NOPE cant write muscle relaxers they are addictive, So is insulin, heart meds and Tylenol.
I’ve lived with chronic back pain since just before leaving the navy in the early 70’s
I’ve worked in hospital power plants as well as electrical power plants for many years before retiring in 2003. The wear and Tare on my body from all the abuse it indured over those years has left me chronic back pain.
I’ve taken pain meds for all those years just to manage getting through the day. I’ve always been productive and never addicted to these pain meds.
Just in the past week I had back surgery leaving me in god aweful pain. Went for my follow up thinking it’s only been a week so I’m sure the doctor will give me a refill. Nope! Did not happen as he said he’s not allowed. I was infuriated to hear this. Just because someone uses pain meds doesn’t make them addicted.
I can only hope they will come back and change this law to better help those that need the meds.
I can also hope that the boneheads that passed this bill suffer severe pain and can’t get their meds. 😡😡
I had cervical spine surgery 40 years ago. Now cervical dystonia pain. 20 hours a day in bed. Before my pain meds were cut back I was able to ride in a car and visit friends and stay out of bed. I go to a pain clinic restricting opoid prescriptions. I submit to random drug testing. I am being treated like a drug addict. Doctors tell me ” well you have dealing with pain most of your life”. Pain meds that have been taken away from me and many others are being punished for the action of drug addicts.
We are having the same problems here in Canada. Everyone is suspected of being an addict.
My pain specialist when I lived in London, Ontario was forced to give up his practice because *one* patient complained that they thought he was over-prescribing medication.
My sciatic pain was so severe that i was on multiple medications that barely eased the pain.
The doctor who took over his practice weaned me off the opioids, but continued with nerve blocks, which did eventually settle things down. But I am afraid, that if it ever flares again, of not being able to get respite from the pain. Most GP’s won’t prescribe anything narcotic for pain relief.
This is not my pain story. It is a story of someone I love. This person bears the pain of an ankle crush injury, on one side.He hears crush injury pain to the metatarsal on the other side. The results of the skinny side of a piece of steel.
This person has arthritis in the back and neck.
This person has had multiple traumatic brain injuries. His cognition is affected. His mood is affected. His memory. He suffers terrible depression and anxiety that if not managed, will land him in the hospital.
This person has Multiple Sclerosis. Doctors say he he probably had it for decades before being diagnosed. This has resulted in changes to his cognition, depression, anxiety, and mood. This has affected his speech, his movements. He uses a walker and sometimes, if it’s a great day, a walking stick or cane.
This is a tough man who does not want to have a mandated course of pain medication running through his body. He wants the choice to own his own pain levels, and to manage them. Recently, his health has taken a downturn, and he has had more pain.
When he is in much pain, his mood is destabilized. This is not a small thing. This is the change that can happen in someone with TBI and damage from Multiple Sclerosis. He needs pain meds, and medications to help with anxiety that could easily be misunderstood as a potential for violence or out of control behavior. He is not violent, at all. But he becomes overwhelmed. He moves quickly, dangerously. He has recently been switched from his as needed medication to one of the abuse resistent, extended release meds. If he needs to treat his pain, he has no choice but to have pain meds in his system for longer than necessary.
When he has periods when pain is amplified, he moves less. Already suffering mobility impairments and devastating fatigue, increased pain has him moving less. Moving less contributes to spasticity, depression, loss of muscle and bone, and more pain. His pain meds, when needed, help him to accomplish tasks like Functional PT.
When he has higher pain, his depression is magnified.
This man has been seeing the same Interventional Pain Specialist, The same primary doctor, and the same neurologist for 3 years. He has been on the same meds for three years. All three doctors know us, know him, and never expressed any concern over his use of his prescribed medicines. Each expressed that they thought the medicines selected were the right medicines, at the lowest possible dosages, that had the least risk of bad side effects. These medicines were selected to reduce his anxiety as needed, reduce pain as needed. Medicines that have been used in combination for decades, in patients other than those with the pain of previous horrible injuries, traumatic brain injury, arthritis, and Multiple Sclerosis.
Each doctor is provided a list at each visit. Both he an I carry his health information with us, everywhere we go. I am the person who orders his refills, double checks with physicians after every visit, researches his meds, shares information with him. I am the person who fills his weekly medicine box. Pain meds and anxiety meds do not going the weekly med box. They have their proper place where they wait until things get bad, stay bad too long.
He does not want to take these medicines if he does not need them. He has a very high pain tolerance, and he does not complain about pain. Until it’s too much, and a couple of days have been ruined.
He has followed all the rules. He respects his medicines as tools. He does the drug testing, though nothing has, or will ever show up.
Now things are being taken away. Taken away with no notice.
He had an appointment on October 3. We spoke of refills. We spoke of refills for his anxiety medicine. The medicine that ensures he can be a passenger in a car. Perceptual difficulties, his already present anxieties, his sense of having little control of the vehicle can at time, overwhelm him. Anxiety of this order, when it happens, can run him into a flare of symptoms that can last days. We also spoke about seeing a psychiatrist. Those appointments take time. There are no psychiatrists who work with neurological patients in a 175 mile radius.
I had called in all of his other refills. I called this one in. I was called by the doctors staff informing me that Brian would not get his prescription. I was lectured about the FDA Black Box warning. Sounded like someone took a newly mandatory class.
A neurological patient suffering extreme anxiety is cut off, when a need for a refill was discussed a week prior. This was because he is in pain management, taking the same meds he’s been taking for 3 years, Along with this medication, under the supervision of 3 doctors, with whom he has regular scheduled visits.
A neurological patient is cut off with no notice, no exit plan. He has other doctors. One is amazed at the stupidity of not treating pain when there is a demonstrated need in a patient who has shown no inclination to abuse. The other was a bit irate. He told me exactly what to say and do, so that this man wasn’t just dumped. Left to what his damaged brain can do to him, with no meds. We now have an exit plan. His med has been cut to 1/3 of its prior dose.
I fully expect that those who love and care for the neurological impaired, the developmentally disabled who have physical disabilities, have body and brain injuries, cognitive impairments, and wild fire anxiety will have the same stresses, the same frustrations, the same fears and desperation. We are the ones who are encouraging movement, preparing the meals, doing the housework, preparing for medical needs, transporting, and dealing with the fallout of what injury and disease can do to us, and our relationships with others. I get to suffer when I cannot console or calm during this most wretched and desperate storm of anxiety that comes in its own, with a temperature that half a degree to warm, and comes with unmanaged pain.
The vulnerable can’t have both pain management and anxiety management. The brain damaged have to choose. Punishment for being a model pain management patient.
The choice in this case is: if this type of anxiety and the mood cannot be managed quickly and effectively with a very low dose of anxiety med when needed, then a care facility will have to be an option. Control of this is necessary for his safety. He moves to quickly. His brain is on fire and is sending too many of the wrong signals. His voice is altered by MS, and so is his hearing. He gets way louder than he knows, and he sounds very angry, when he’s not angry. This is a police call. This will find him in a psychiatric/drug treatment hospital, not getting the neurological care he needs.
This hospital will of course, be at least 150 miles away. Our government did great things for mental health, and how we prosper today. Psychiatric care, qualified psychiatric care, does not exist within near 200 miles. o
Is it going to be better to have people like this person I love, in a facility? He can lie in bed and be told he is not in pain. He can’t possibly be in pain. He’s already on an antidepressant. He must want drugs. He can have his PT managed. He can have his meal times and food ma naged. He could have his clothes ruined in the laundry. When the storms come, I’m sure he Can be left to his own, ignored, put up with, until he breaks a hip, and is more manageable for the staff. Or, perhaps, a ‘safe ‘ chemical restraint, nursing style, will be ordered.
This man was in a street minding his own business, when he was attacked by a man with a baseball bat. He was beaten about the head. This resulted in one of his documented diagnoses of Traumatic Brain Injury. The man liked his illegal drugs and was sentenced to 2 years in prison.
Tonight, the police broke in on our upstairs neighbor. He likes meth and heroin. Waited 5 years for this to happen, calling governmental agencies, all the while.
His ‘choices ‘ about when he is in pain enough to take medicine or not have been taken away. His ability to manage what his horrible anxiety can do to him, and how much it may affect him later, has been taken away.
I have my own pain conditions. A few of them. I am in pain management. My choices about when NOT to have a pain med in my system has been taken away. I cannot have a day to own as my own, without pain medicine in my system. I provide care for another. I also have a med for sleep and anxiety. I’m probably next. I have a disease that causes the brain to experience anxiety. The most dangerous medicine I take is the antidepressant. I exercise, prepare healthy food. Pain medicine allows me to do these things. My anxieties can prevent me from doing these things. I’m sure I will be next. That will cost me ability, it will cost him care.
There are a whole lot of previous things our government wants to manage, but not take responsibility for, or learn from. There has to be some better thinking and acting in this if people are going to be able, just simply able to take care of their daily business with complicated medical conditions. Please don’t one size fits all our doctors, or their patients.
I had to have 8 teeth pulled in one day they sent me home and said take aspirin. I told them that was blasphemy but they gave the girl getting her wisdom teeth pulled vicodin. I have no record of drug abuse. If the junkies want to overdose in the street that’s their problem don’t kill the working class with pain!
Whenever you hear someone say “I am doing this for YOUR OWN benefit” you ought to be skeptical. Especially if you don’t want it done, and they are using force to do it.
I am 70 years old. I have been living with atypical facial pain since age 19, when I had a smoke inhalation injury that injured nasal and sinus tissue. At first I was diagnosed as suffering from psychogenic pain, and referred to psychiatrists. This was making things worse and I did the best I could without medical help for the pain. By chance, at around age 35, a doctor prescribed codeine. Immediately my life improved. However this doctor moved, and I had difficulty finding doctors who were willing to prescribe opioids. It was a constant struggle to find a doctor who could help, and often I went without help. Eventually, at around 50 year of age, I was referred to Dr Russel Portenoy at Beth Israel in Manhattan, who was had a COAT program, a Chronic Opioid Analgesic Therapy program. Dr Portenoy was able to get a lot of publicity and the tide was changing, as to how physicians viewed opioids. My life took a dramatic turn for the better. But eventually at age 66 or so the tide was turning against opioids again. Beth Israel Medical Center was merged with Mount Sinai and the COAT program was stopped. Fortunately, one of the physicians who worked in Dr Portenoys program started a private practice, in Brooklyn NY. So I went to Brooklyn 4 times a year to see this doctor. This was draining me financially as I am on a fixed income from social security of 1324 per month. It was also hard for me to make the trip, whether I drove or went by air – which took just as long as driving, by the way. I found someone at Duke University Medical Center, who treated me for about 2 or 3 years, at a reduced dosage, but now they are weaning me off.
Many pain patients are placing blame on illegal users, heroin users, people who buy prescription opioids on the street. But why should pain patients be punished for the actions of illegal users? And why should illegal users be punished? Many of them are simply doing their best to survive, and they are NOT the real reason pain patients are being weaned off opioids. I think we need to Follow the Money. Who is really benefitting by demonizing opioids, and opium, which is a simple agricultural product, basically it is just dehydrated fruit juice, the juice of the opium poppy apple. In Afghanistan, opium poppies are being grown. Instead of simply buying opium from Afghan opium farmers, the powers that be in Britain want to eradicate their opium farms, and are instead growing opium poppies in the British Isles. it is a power play, to take economic power, and money, from Afghan farmers, and give it to British investors.
Whenever you hear someone say “I am doing this for YOUR OWN benefit” you ought to be skeptical. Especially if you don’t want it done, and they are using force to do it.
Don’t let them divide and conquer. We as pain patients need to JOIN with street users.
I have 10 back cushions and a torn rotor cupshoulder that didn’t turn out good plus need neck surgery all a result of a fall my pain is so bad my life is laying in a bed most of the time movement is very bad pain since they reduced my pain meds to nothing I would say as good as a tylenol i wish some drs would stand up for there rights to treat patients the way they know they should without fear from the government taking there licience away they took a oath and the government is stopping them from doing what they telling the drs to do we need drs to speak up and defend the people who are now suffering in there homes and now the government is saying if your on a narcotic you can’t get a anxiety pill now what happens if someone who needs both they will become in my option high risk for killing themself due to our government who has go e to far yes there is a problem but foir patients like myself who is in unbearable pain suffer all day a d all night so where are all our drs they should be standing along side us because the government is taking there oath away from them for treating patients the way they need it so THIS IS TO ALL YOU DRS IF YOU CARE ABOUT YOUR PATIENTS AND TIRED OF GIVING BAD NEWS TO YOUR PATIENTS THEN SPEAK UP AND DEFEND YLUR PATIENTS AND FOR WHAT YOU STAND FOR PATIENT CARE WITH MERCY AND CARING AND YOUR OIATH YOU TOOK STOP BEING SCARED DO SOMETHING!!!
I first got hurt in the parking lot of my job working for the state for veterans in 2010 there was ice all over the parking lot I slid and fell as I was getting out of my car fell on my stomach hit the curb & fractured 2 ribs a co worker found me as he was going into the building helped me up mind u my shift started at 7am I could not get up & walk thank God he found me I was out for 4 months still in pain but the workers comp had cut my pay in half so I had to go back to work my dr didn’t think I was fully healed but I had no choice because I had bills to pay & a mortgage then in 2011 I got hurt trying to not let a patient fall & break her hip or any other part of her body I was alone in the bathroom with a resident after her taking a shower she started to fall I used my whole body holding her up holding on to the bar so I would not fall as she was sitting on my knees she started to slid left so of course I went with her I had the wheelchair behind me but the wheels where locked so I needed to strech myself while holding the bar with my rt hand & her still on my knees I finally got the wheel chair after stretching more then I should have and got her into the chair safely after about 1 hr I was in so much pain that I had the supervisor give me the ok to leave I tore my left shoulder & my whole left side was killing me I was out of work for about 17 months but in those months my body started to really hurt bad I did not know I had CPS I went to all types of drs to see what was going on because the pain was unbearable some days where ok and others where the days I couldn’t move I would cry that’s how bad the pain was I returned back to work even though I was still in pain a couple months later I got hurt agian this time a resident kicked me in stomach I lost my balance landed on floor he landed on top of me due to the pain I already had i didn’t realize I have gotten worse I was sent home that day by the supervisor I took only a couple of days off went back to work…. 1 1/2 yrs later I ended up shattering my rt angle helping a co worker to get a resident in a wheel chair as doing so I swing my foot under the wheelchair hit the medeal cab and all we heard sas a cracking sound within 1/2 he my foot & angle was swollen I could not walk I went rt to the dr & that was the last day I worked … I would go to work in such pain after my incident in 2011 as my coworkers saw how much pain I was in couldn’t even walk at the end of my shift I had to work I had a mortgage & bills to pay but after my last incident I couldn’t anymore my pain got really bad my whole left side is where I have chronic pain & im a lefty and as of late my body just keeps getting worse everyday is a different one either I have pain I can tolerate with my meds or pain that I can’t even get out of bed or walk but my meds do help me a lot I have been waiting on my answer for disability which took 4 yrs me loosing my house of 13 yrs my car I had since 2005 & nobody seems to care that I am struggling yes I finally got approved for snap & medical insurance but I need income I live with my friend & also my son I go back and forth I almost lost all my belongings 2 months ago in storage but thanks to my son & niece I’m so angry disappointed that disability’s taken there time I would like to at least get my own place agian and feel happy agian I’m only 53 & my body feels like I’m much older I have lost the ability to do the things I loved to do like going to the gym skiing bike riding walking going on rides at amusement parks gardening loved doing all that stuff but can’t anymore I still try to do my gardening but in short times here & there this disease has truly changed my way of living for the worse & I get so depressed sometimes that I can’t do the things I use to be able to do my daily living had changed & I would never wish this on anybody because it is truly hell the tingling, feeling like something is crawling on your skin , places on ur body that feel like someone beat the hell out of you if u touched a certain spot the locking of ur back sciatica running down my legs , running leg syndrome at night so u can’t sleep , feeling like you have bruises on the inside of ur body taking a shower as the water hits ur body it hurts feeling like needles poking ur entire body , headache can’t lift things can’t bend to pick something up can’t sit or stand or lay down for a certain amount of time before you feel the pain getting worse can’t walk as far as u use to because it’s a struggle these are some of the symptoms I feel everyday & im sure that ppl like me understand what I’m talking about & there is no surgery for this at all yes medical marijuana helps but it is very expensive so I can’t even continue getting that so I can sleep at night …… it is really a sad nightmare & God Bless all that have what I do because it’s continuous pain day & night 24/7 & thank God for my meds because I think if I didn’t have then to relive the pain I would be dead sorry to say but the truth God be with you all ❤️❤️❤️And ty for letting me tell my story about my every day life
Where do I start? I’m a chronic pain sufferer and have been for 8 years., at least that’s when I was diagnosed with degenerative disc disease in C-2 thru 4. A botched knee replacement came on board shortly after.
RA , OA and fibromyalgia…….I see a pain management doctor. In January 2018, my doc cut my pain meds from every 6 hours to every 12 hours. His excuse, was all the lawsuits filed against doctors for prescribing opioids and then became an addict.
I’d be happy to sign a ‘contract ‘!
I’d love to be active again, sitting out on family activities is depressing.
I’m happy to see a grassroots movement happening, hopefully that’s a start.
I have been living with multiple chronic pain conditions and autoimmune diseases. At one time, I was on multiple opiods and existed like a zombie. I was slowly weened off of the majority and was able to retain a prescription for Tylenol 3 and Percocet. I found alternative methods that helped diminish the pain. I STRONGLY feel that insurance companies need to cover licensed, alternative care professionals, especially if the patient can state & show evidence of its effectiveness.
For many years now, I’ve been taking daily OTC Tylenol and Ibuprofen. I use T3 sparingly and very seldom Percocet. I was recently introduced to the Functional Health Team that approaches treating patients by identifying and removing the root cause of disease rather than solely alleviating symptoms.
Many debilitating conditions are due to high inflammation in the body & my markers have always read extremely high. The New England Journal of Medicine has published that most approximately 90 percent of major diseases involve chronic inflammation. Inflammation tears down joints, muscles, organ tissues, effects the brain, & basically land its assault anywhere in the body.
So my anger is with the American Medical Association, Insurance Companies and others who do not recognize we need access to alternatives, like #FunctionalMedicine if they want to limit or remove those of us suffering and barely living our lives from using pain meds.
My Pain started at age 40 and continues to get worse! I’m now 68. I started with family Dr. and he sent me to a Pain Specialist. After a long series of x-rays I found out I had Scoliosis, 2 pinched nerves and Degenerative Disc with Fiber Mialga too ! I started with pain medication. Some months my dose would change to more Meds and this lasted for 20 plus years! Not once did I take more than I was Prescribed and not once did I Overdose! Then about 2 years ago the same Doctor that cared for my Chronic Pain for 20 years told me that the FDA would no longer allow him to prescribe Pain Medicine and he would have to send me to a Pain Management Clinic. I currently go there to get lower doses. I now am back in Hell every day from the Pain !
My Mom has had 9 Back surgeries a knee replacement and has been taken off her pain meds because some idiots think they are Doctors and call it addiction when it is flat out relief and survival just to function daily. Why not alcohol or cigarettes? That is an addiction. You don’t need that to function!
I have been a chronic pain patient for about 20 years. I’ve been on several different types of pain medications over the years. I’m 52 years old, a retired nurse due to a back injury. I have degenerative disc disease, spinal stenosis, L2-L3 discectomy surgery that failed and I need more back surgery, arthritis and fibromyalgia. That is just my pain diagnosis. I have other severe health issues.
For years my PCP handled my pain medications. Then like many of you I was told she could no longer take care of my chronic pain and was sending me to a pain doctor. I was very upset but what could I do. So about 4 years ago I started seeing my pain doctor, who I like very much. Right off she said that I was on too much pain medication and that she was going to start to wean me down. I said OK, what can we really say? Over the years she has really not weaned me down for some reason or another. I had several surgeries and needed post-op medications. I am currently on opioid pain meds. These medications work well for me and I can go about my day for the most part. Now she tells me that “we” have until January 1st to get me down to the new guidelines the government is putting into place January 1st, 2019. Oh and she tells me that I am way over the guideline. She has decreased my medication for this month. I imagine next month I will get put down further. I live in New Hampshire and like everywhere else we have what the state calls an “opioid epidemic”. When this issue first started it was called an “heroin epidemic” and they were concentrating on illegal drug users. That was great! These people were going to get the help they needed. Then when the state renamed it they started going after us, chronic pain patients. I have a HUGE issue having the government telling me and my doctors what I can and cannot be prescribed for my pain. Having the government telling me how much pain I am in and what type and strength of medication I can be prescribed for it! The government is stupid if they think going after chronic pain patients is going to help the opioid epidemic, it is not! Many, many good people have had there medication ripped from them with no notice. instead of coping with the severe pain they have committed suicide, or have gone to illegal drugs! Yet here in NH we have methadone clinics and safe injection stations where the addict can get there methadone and or get a clean needle and inject there heroin. If they are in a methadone program and there urine tests dirty they do not get tossed from the program like we would they get a higher does of methadone! WHAT IS WRONG WITH THIS PICTURE!?!? I feel powerless in this issue. I do not want to have to go back to using a walker and needed help with dressing and bathing! Not being able to drive my car or enjoy my family, not being able to take my grandchildren for the night. Oh no thank you I do not want that life back! Most of all I feel it is NONE of the governments business to be in any of my healthcare decisions! God bless you all!
I have a spinal cord tumor and Degenerative disc damage in several discs. Bulging discs and a fractured vertebrae that never healed correctly.
Needless to say I’m in pain all the time.
I had my pain meds cut in half. Gone through months without meds because my Doctor left the area. Trying to find a new one was extremely difficult. Pain clinics denied me once they found I had a tumor. My meds give me about 30 to 40% pain relief. When my tumor acts up my medication doesn’t even begin to touch my pain. I think our country forgot about the pain patient. Please stop forgetting about us and treat us as a patient not an addict.
My pain started after I was in an abusive relationship he came in high on something at 3:00am & pulled me out of bed by my hair. I ran out & when I got to a neighbors trailer I slipped on ice & he repeatedly kicked me with steel toed boots. I curled up in a ball & blocked my head so he kicked me several times in the back. About a year after that is when I started getting severe back, neck & shoulder pain. I went to several docs, which most accused me of just wanting pain pills. I finally found one that believed me & she put me on 3 different OxyContin prescription’s. She told me I have fibromyalgia. Then she was moving out of state so I had to pick a different doc in the same place. That’s who I have now. She kept telling me in the last year I’m going too have to start weaning you off some of these. So I worked with her & I got off both the Oxycodon 5mg, then shortly after that she started telling me again I need to work on the 20mg one at a time well I was so scared that they were gonna rip them away from me that I weaned off to of them. And that’s when she just started taking the other 20mg. And one 40mg. So after years of being on all these. I would say 23 years I was down to 2 OxyContin. I’am in the worse pain ever in my life now. I have nothing for the break through pain in between the 2. I went to ask her for one or two of my 20mg ones back. And she told me she couldn’t no way go back up. So I have just been suffering. She started running test on me I now have fibromyalgia, arthritis & bone spurs. And I just had a test done she is checking for cancer. I’m waiting on the results. I feel like I’m going to Court every time I go for my follow up appointments now. They treat us like we put ourselves on these. Like they are totally in denial of having any part in this horrible nightmare. And I feel like they are just waiting for a reason to cut me off the last two. I have never abused them, I always pass any drug test she gives me. And it’s random so I don’t know when she’s giving me one. And I have no problem with that. But all the questions. What time did you take this one today, what time did you take your next one. I feel like they are trying too find a reason to take my last two. This is such a horrible thing to do to people. Theirs so many of us suffering now. My only hope is that we can all get our message to the President not to sign that paper & give us our meds back. I only want 2 of my pills back for the in between pain. Please help us someone. PLEASE! Thank you.
I too am in the same boat. My pain doc would no longer accept me because I take xanax. That is his own policy. He says its because of I may accidentally overdose. Geez…if somebody is in constant pain, they are anxiety ridden and pissed off. Ive been on xanax for 25 yrs.
I have a spinal implant and been in pain for 18 plus years now ! I’ve had over 10 operations and always in constant pain !! Now the drs are taking away the only thing that helps me have a life? They had me at a very high level of OxyContin at one time was up to 12, 80 ml a day and now want me under 80 ml a day ? How can they think it’s gonna help relieve my pain ? I have permanent nerve damage and can’t function without pain meds? I’m a single father of two kids and Dont understand how they can do this to people ? How do I get pain relief when the laws r not setup to help people in severe pain always? My quality of life is terrible now and it has been done to me on purpose and the drs don’t even care? Please help me and all the other people get our quality of life back !! I just wanna be able to function and raise my kids the best I can !! Please fix this !!! Take care thank u , best wishes from pain in California!😢
I have been experiencing back and neck pain for the last 16 year’s. Yes I have had more doctors and chiropractors poke and test on me. I have been see at nerospine institute in my home state and was told that surgery was not an option. It took many years of trying many non opioid meds which I was fine with trying them I mean after all who really wants to damage their internal organs with opioids. I was unable to do a job that I loved due to my pain never mind that I didn’t tell them I was on these opioids. My pain was so bad that I was unable to enjoy family activities. My travel to see my parents and my in-laws where greatly limited since sitting or even worst driving a car caused more pain. I do understand the concerns that people have and that old saying about one bad apple ruining the bunch. I have been on a med regime now for five years that included opioids but also allows me to do work as a para professional and do more with my family. I did miss out on visiting my father who lived in a nursing home for years before he passed away. I counted on my wife to do the driving of any distance over half an hour. I’m finding it more difficult to find my meds every month never mind the cost of them keeps going up. Now I found out that the insurance company will not cover one of my opioids starting in December. Without this med my pain will increase to the point that I will not be able to have a productive or good quality of life.
Wow I thought I was the only one having this problem. I am a 63 year old man who has had 3 back surgeries 2 shoulder surgeries and neck surgery. I have been under the care of a pain management doctors for 15 years and never abused or failed a drug test. They cut my pain medicine in half which does me no good. I recently suffered a massive heart attack which destroyed 80 % of my heart. So now being in constant pain is raising my blood pressure and destroying the rest of my heart. I worked hard all my life as it sounds like most of the other people on this website have. In the meantime 99% of the overdoses from drugs are coming across the border. The border is wide open and is causing the opioid crisis not us. The law biding people are the easy targets. We have to let the politicians know that they have to fix this Now. I think the president would correct this problem if he knew about. I will be praying for everyone.
Did you know that thug drug dealers ACTUALLY deliver their drugs like illicit Fentanyl to your door like a Dominos Pizza? I did not know that until April 29th, 2017 in the dark damp hours of a rainy spring pre dawn hour. My younger brother died just last year in April 2017 of a Heroin/Fentanyl Overdose. I ❤️ my brother immensely, always have, always will. The sheer pain of his death alone saddens me. What makes matters much worse is knowing that the sins of my own brother (and many JUST like him) would inadvertently affect my chronic pain control just a year after. It’s like double the pain — and it honestly plays tricks with my head. I understand the opiate epidemic — but honestly, my brother didn’t actually die of a Heroin overdose. You know what he died of? He died of an illicit Fentanyl Overdose. That is the TRUE epidemic going on! Let me tell you, the medical examiner was absolutely dumbfounded and shocked at his toxicology report. The amount of illicit Fentanyl in his system was one of the highest he has seen. More than 4 shots of Narcan couldn’t touch the amount of illicit Fentanyl that was in my brothers system/blood stream. Seeing him lying there dead on the basement floor is a sight I can not unsee. I wished I had not looked because that was NOT how I wanted to remember my brother.
My brother had an ADDICTION! It was an addiction of his own choosing and why are chronic pain sufferers being pushed aside like pond scum to help the “masses” of folks that choose to die from this illicit drug?
So to my point …
On the other hand, chronic pain sufferers have a physical /chemical DEPENDENCE on the opiate — big, big, HUGE difference. But the mass media has been taught otherwise. The pharmacist, the news outlets, many in the general public, physicians, the government in general, ect. do NOT know the difference between the two. And they want to lump BOTH the chronic pain sufferers in the SAME bag as folks just like my brother who, unfortunately brought an addiction upon themselves (not purposely) but nonetheless, his disease brought about his own demise.
Last but certainly not least, the Mexican drug cartels and the drug smuggling in from countries like Canada and Mexico are to blame for the illicit Fentanyl abuse, and more importantly deaths/overdoses. Why? Illicit Fentanyl is coming from a much more potent drug — an elephant tranquilizer called Carfentanil. This drug has its appropriate uses — but when you put a drug meant for an 8,375 pound animal in a human being with let’s say an average size of 137 pounds, it is an ABSOLUTE recipe for disaster! I mean, come on, even the first responders don’t want to touch this stuff. Even the smallest amount of powder wiped on a hand can absorb into a persons body and cause an overdose.
Carfentanil is an analog of the synthetic opioid analgesic fentanyl. A unit of carfentanil is 100 times as potent as the same amount of fentanyl, 5,000 times as potent as a unit of heroin and 10,000 times as potent as a unit of morphine. So go inject some of this stuff, only it is sliced, diced, and laced with a little other “Great Stuff” for your body like baby powder, a little bit of Heroin to boot, even some Valium. There you go! They wanna make this stuff good so you get hooked and come back for more and more, thus sending more abusers there way, and become a customer for life (or whatever amount of life the drug dealer can get out of you)! Then when you die, they just move on to the next Tom, Dick, Harry, or Mary!
This illicit use of Fentanyl, cut from Carfentanil, is honestly, in my humble opinion, the worst conspiracy hidden by the government for some time. Why? I think because they know they are losing the overall war on drugs. If you think about it, if you were in charge of drug control into the country, wouldn’t it be quite embarrassing to know that people from OUTSIDE our country are actually smarter and more instrumental at smuggling this drug in successfully and the government in charge of drug enforcement simply don’t know how to put a stop. That is embarrassing! So what a better way to shield their own embarrassment by blaming a completely different set of people as the problem — chronic pain sufferers. How inhumane.
Grow some ball governmental agencies, get your act together. Figure out how to STOP this insanity of this elephant drug getting into OUR country that is the TRUE cause of killing so many people! We have an “illicit Fentanyl epidemic” — get your facts straight! Even the CDC couldn’t get their facts straight and had to recant their original testimony about this supposed opioid epidemic — their numbers are highly skewed!
If we could manage to put a man on the moon nearly 60 years ago, why in God’s green earth COULD’NT we stop this deadly elephant drug from becoming so pervasive in our country?
I would love to know the answer!
~ Sheri Owen
Chronic pain sufferer & Sister of Vincent Winterer, just 1 tens of thousands in 2017 who died as a result of illicit Fentanyl in his system 😢
C.O.R.E.
Change Opiate Regulations Emergency
http://www.facebook.com/groups/changeopiateregulations
My pain story starts at a very young age I suffered with joint pain in my hips my abdomen my head I started working physically in the woods doing cordwood I was always tender to the touch and didn’t know why somebody would come up and poke me in the ribs and it would feel like so painful or just tapped me on the back and it would be so painful I had this thing on the roof of my mouth which I found out in a medical book me and you could have a autoimmune disorder I worked very physically hard in the automotive industry doing a lot of heavy lifting repetitive fast-paced motion lifting heavy objects above my head of my chest repetitive standing in one spot a lot of physical and mental abuse in relationships a car accident neck and spine injuries and worked for 32 years I was diagnosed with severe fibromyalgia in 2013 because I was having such burning pain and joint pain that I felt like I was being cremated alive so I went to the doctor and that’s when he diagnosed me with severe fibromyalgia I tried Lyrica Cymbalta Gabapentin and besides Motrin ibuprofen nothing was touching this pain so I kept going back crying my eyes out saying I needed something that worked instantly because they’d say all it takes a while to get into your system well I was in such severe pain I need something instant or something that works instant so he put me on hydrocodone this is 2013 I was so grateful that this worked so I had been on it since then it’s what really works for my pain even though opioids aren’t recommended for fibromyalgia patients everyone is different everyone has been through different things I fit the criteria of all the symptoms the accident the hard work physical labor the physical and mental abuse neck and spine issues now I am having trouble getting enough of the medication that works for me because of the opioid crisis I really wish that because of my documentation because of getting approved for disability that it would make it easier for me to get the amount that I need for a month without having to worry about running out I have had to go through this several times and ended up in the hospital twice the third time they wouldn’t let me stay they treated me like I was a drug addict and I said I’m not here for opioids I’m here because I’m very sick can’t you check my to see if I’m dehydrated and can’t I stay and she said no you can’t she said we will check and if you are then we will run an IV she never came back in 2 hours so I went home miserable I just got cut down from a hundred and twenty hydrocodone which was for a day of 10 325 two three a day and I tried a new long-acting hydrocodone instead of the morphine sulfate ER twice a day tablets I was on I’m not sure about the and I only get one a day of the high singular I am really trying but I told my doctor 2 months ago that I was having a hard time making it last and if I could get another 20 that that would really help it’s when I’m physically trying to do things that I don’t last long weather is walking in the store or trying to do housework laundry I just get so fatigued and pain so she gave me 140 but then got a letter stating that if your mme was over 200 that they were cutting down 2 90 per month I just wish that I could get enough of what I need that helps my pain so I can have a better quality of life I am tired of being compared two other people and being told that opioids are not recommended for fibromyalgia patients everyone is different and I have been through the mill a few times I just don’t know what to do anymore tired of repeating myself to my doctor that is what pain care is for and you should be able to get what you need that works for your pain and enough of it
I was diagnosed with Fibromyalgia in 2006. I had the symptoms for about five years prior to that. The doctors told me to lose weight and exercise; however, anything more than a brief walk would leave me not functioning for several days and the medications the doctors had me on was on made me gain weight rather than lose it. The doctors tried Gabapentin, Lyrica, various antidepressants, muscle relaxants, Tramadol, and Guanfacine. Lyrica and Gabapentin both left me so foggy that I almost lost my job. There was an extended release type of Gabapentin called Grilease that worked fairly well; however, it was $850 for a 30 day supply and my insurance refused to cover it. I couldn’t afford to take it. One of mydoctors had me on a prn dose of Percocet for really bad days. It worked for me and I stayed on the same dose for a year. Then my insurance changed, and the new doctor told me that opiates don’t work for Fibromyalgia and she cut me off. I told her that the other meds didn’t help me on bad days and she sent me to a pain doctor. The pain doctor sent me through multiple trials of different medications and surgical procedures, eventually landing on Vicodin for bad days. Because I couldn’t take Lyrica anymore, I ended up white-knuckling it through work and taking Vicodin in the evenings after I was home for the night. The dose I am on barely brings me down to a tolerable pain level, so there aren’t any real pain-free days. I had to sign a pain contract that says I won’t ask for pain meds anywhere else.
The contract really bit me when I got uterine cancer and the mass outgrew its blood supply, leaving me with a fist-sized, infected mass in my abdomen. It was the worst pain I have ever experienced. I went to my primary care doctor, who misdiagnosed me and sent me home with a pain prescription that I was then unable to fill (I didn’t have any opiates prescribed to me at the time). So I went to the emergency room, where they gave me Fentanyl via IV and found the mass with a CAT scan. They refused to diagnose it, however, and referred me to a specialist who said I would have to wait a month to see him. No pain meds while I waited and I could not reach my pain doctor. I ended up back in the ER twice before they finally admitted me for pain control and got the specialist to see me three days later. The doctor operated on me to remove the tumor and then the hospital discharged me the next day, without pain meds for the surgery. I had to hobble over to my pain doctor and wait in the office until he could see me. He gave me morphine pills for the pain. I took them for six weeks, then began to taper – no instructions on how to do it other than I should do it slowly over the next week or so. That was when I learned that one week was way too fast – I was absolutely miserable with the withdrawal symptoms; I couldn’t sleep at all for the first three days and didn’t sleep well again for another week or so after that. So I see both sides of the opioid epidemic. Due to my own experience with withdrawal symptoms and due to the nature of my job – which puts me into contact with many addiction sufferers – I know how dangerous opioids can be. I also know the misery and deep depression pf being in chronic pain, with no hope for a cure and no real relief, 24 hours a day, 7 days a week. I know the frustration of not being taken seriously by doctors when I tell them I am in pain and the pain can’t be seen on an x-ray or a blood test. I know the discrimination of being looked at sideways by my employer because I have a disability (they are actively trying to get me fired because they don’t think I can do the job with chronic pain and depression) – and knowing that I will never qualify for disability with Fibromyalgia, because the judges think that pain by itself couldn’t possibly prevent me from working. I have tried yoga, meditation, massage, and countless herbal supplements, all to no real effect. I am dropping UA’s as if I was in rehab because my pain doctor has to do that in order to prescribe the semi-effective medication that he can prescribe me under the current legislation and hysterical atmosphere. So I would ask the legislator to please stop threatening legal action against our doctors. And please, please, please – put more money into researching pain alternatives. Put pressure on insurance companies to cover pain treatments and stop trying to take opioids off the table until a universally effective treatment is found and covered by insurance. People like me don’t deserve to suffer more just because we are sick.
I was diagnosed with spondylolisthesis at age 13. I’m now 70. My pain increased with age. I’ve been wearing a TENS unit for about 30 years. About 12 years ago, I was getting burning pain in my lower back. I finally found a doctor who would give narcotic pain medication to chronic pain patients. They have made my life liveable. If I can’t get them any more, I honestly don’t know what I’ll do… possibly stay home and stay in bed or my recliner. What kind of life is that? PLEASE help us.
I suffer from severe, intractable chronic pain. I have always fulfilled my obligations as a patient of over 13 years at a chronic pain management clinic in Texas. I only take my prescription pain medications as prescribed to relieve my chronic debilitating pain from CRPS, osteoarthritis, spinal stenosis, failed back surgery syndrome, peripheral neuropathy, entrapment neuropathies, radiculopathy, myelitis, and Synovitis and tenosynovitis. My condition will not get better; it has continuously worsened. I can no longer take NSAIDs (Ibuprofens, naproxen, etc.) because of three bleeding ulcers I developed from that regimen. I was hospitalized through emergency care, and received a transfusion that saved my life.
I have chronic pain every day. I have had four back surgeries, two knee surgeries and tarsal tunnel syndrome surgery. I have Radio Frequency Ablations and Epidural Steroid Injections at four levels both in my lumbar and cervical spine approximately every six months. I try to religiously do my stretching and physical therapy exercises. I have gone through, and exhausted all of the other drug and non-drug treatment options over the past 13 years. Still, I have pain. I hate that I am being treated like a drug abuser when I am just trying to make my life more manageable on a daily level. I try to participate in being part of our family, making a contribution to society, but it’s hard. Not everyone who needs pain relief is an abuser. My prescription pain medications have been forcibly reduced as a result of the “opioid epidemic”. As a result, my functioning and quality of life is diminishing. Please don’t force me further into a life of debilitating pain and suffering with the across the board laws restricting life saving prescription pain medications for non-cancer, intractable and chronic pain patients. We are real people with intractable and chronic pain, including our Veterans, the elderly and the disabled, who have been forced by policy changes to receive less or even no prescription pain medications for their pain. Unfortunately, there are many that have already committed suicide because they could not stand the pain.
The crisis stems from illegal, illicit fentanyl and heroin used by people with drug addictions. Law abiding people with legitimate pain and a need for prescription pain medications have been caught in the crossfire and are being made to suffer horrific pain by being denied opioid prescriptions because of the new restrictions that have lumped us in with people with substance abuse disorders. Please, walk a mile in our shoes before you judge. We are just trying to live with dignity as contributing members of society. Please protect the chronically ill and their doctors from the unintended consequences of the laws that are being enacted to curb the problem with addicts overdosing. Hospitals are experiencing shortages of scheduled drugs and patients are being endangered because of past unjustified restrictions on production. The DEA & CDC are at fault. Restrictions on prescription pain medications for legitimate pain are ineffective and unjustified. To put restrictions on pain medications that are needed with a comprehensive pain management program is cruel to those with legitimate, documented chronic medical problems. Actively managed pain patients are seldom involved in opioid overdose-related deaths, and in the few cases where they are, it is plausibly as a consequence of under-treatment of pain and depression, forcing the patient to seek relief in street markets. The DEA has already damaged countless lives by creating a hostile regulatory environment, driving doctors out of pain practice and forcing the discharge, and/or coerced tapering of patients in chronic pain. It is inhumane.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5659223
https://www.politico.com/magazine/story/2018/02/21/the-myth-of-the-roots-of-the-opioid-crisis-217034
http://painsproject.org/wpnew/wp-content/uploads/2018/02/The-CNN-Effect-FINAL.pdf
https://www.dovepress.com/getfile.php?fileID=41888
https://www.dovepress.com/efficacy-of-opioids-versus-placebo-in-chronic-pain-a-systematic-review-peer-reviewed-article-JPR
https://blogs.scientificamerican.com/mind-guest-blog/opioid-addiction-is-a-huge-problem-but-pain-prescriptions-are-not-the-cause/
http://face-facts.org/atip/
https://www.npr.org/sections/health-shots/2018/04/02/598787768/opioid-use-lower-in-states-that-eased-marijuana-laws
http://www.foxnews.com/opinion/2018/04/25/greg-gutfeld-opioids-facts-and-fallacies.print.html
https://nypost.com/2016/12/19/how-the-feds-are-fueling-americas-opioid-disaster/
https://www.washingtonpost.com/news/the-watch/wp/2018/03/23/the-ongoing-myths-and-misconceptions-about-accidental-addiction/?utm_term=.d1dfa907f5dd
https://edsinfo.wordpress.com/2016/09/08/cdc-guidelines-refuted-with-scientific-evidence/