Share Your Pain Story

1,008 Replies to “Share Your Pain Story”

1. I am a disabled chronic pain patient. My pain started with a rare disease, Langerhans Cell Histiocytosis when I was 4. I am now 42. My name is Jesica, a divorced mom of 1. So when I say I have suffered most of my life with pain, you understand how many years it has been.

   I have had chemo, tumors, many surgeries, late effects of that disease, fibromyalgia later, compression of my T7 vertebrae etc. I have had many doctors, tried many treatments and at 11 was in a wheelchair from pain. At 12 the head of pain management at Children’s Hospital put me on opioids to get me mobile. Until I met a wonderful doctor at BJC Pain Management Dr Anthony Guarino. He tried epidural shots, neural ablation, physical therapy with no help. I signed the pain contract and only took what he prescribed. He was a miracle worker. It took time but for the first time in my life my pain was under control. I became active.

   I became more active than I had ever been. He didn’t hold my hand or give me whatever I wanted. But I had more pain control than ever from opioids. I married, had my first child. He passed away from SIDS. However years later I had a second child. I always wanted to be a parent. But my now ex husband was tired of my health problems so we divorced.

   After being with Dr Anthony Guarino for 19 years, he retired because of the fake “opioid crisis”. The new doctor decided he was going to take me down on my medication. I had NO say in my own medical care. I have no rights. I am devastated.

   I was a mom. I was an active mom, friend, a human being. Now because my pain level hasn’t gone under a 8, I can’t take care of my own dishes, laundry, groceries. I can’t even walk without a cane. I need a walker but that doctor won’t even give me a damn walker. He has been nothing but cruel. I’m not allowed to complain about my pain. I was told I would be let go if I kept complaining. Who else do you tell.

   I’m not addicted to my pain medication. Opioids DO help chronic pain patients. I was going to go back to school. And try to work. My medication did mostly take my pain away. I need help. There’s 50 million people in chronic pain. I am going to the doctor, signing contracts, doing drug tests. Now I’m home bound. Stuck in a chair. I hate my body. I am a prisoner in my own body.

   Please don’t damn me to a life of hell. So many of us are. I need your help. Opioids have only helped me. I have never in 19 years overtaken my medication. They have given me freedom to live a life. Not a life like most my age but more than I ever had. I want to work. I can’t in severe pain.
   Thank you for reading this,
   Jesica

2. I am a 51 year old professional living in Galveston, Tx. I am writing to ask for a change in attitudes toward people in pain who need improved access to treatments. I want my voice to be heard when actions are taken to curb the opioid abuse problem.

   I need help … I suffer and have suffered for years from severe chronic lower back and coccyx pain that is unbearable. Some of the issues I have been diagnosed with chronic pain disorder, lumbar spondylosis with narrowing disc space at every level, there are also anterior and posterior osteophytes at all bubbles, hypertrophic set arthropathy at all levels, degenerative disc disease, lumbar nerve root disorder and also scoliosis (I honestly do not know what all of this means but I know how bad it hurts). I also had a gastric procedure which limits the kinds of medications I am able to take (such as ibuprofen, muscle relaxers, naproxen and nsaids). Long lasting slow relief medication does not work for me because nothing lasts more than 4 hours in my system. I have had multiple appointments with neurosurgeons and other doctors to be told I have too much wrong with my lower back to have any surgical procedure. It cannot be emphasized enough that I’ve seen many, many highly-acclaimed surgeons, who are absolutely unanimous in what options I have. They’ve all said the same thing: Surgery is not an option for me and due to the nature of my conditions I should avoid any invasive procedures as they can make my pain worse. This includes spinal injections, radiofrequency ablation, spinal cord stimulators and pain pumps, to name a few. I have stacks of reports, CDs and test results justifying my issues. I have had multiple injections with different medications and locations to drain my bank account, gain weight and still suffer in agony. Those injections have caused me permanent damage and now I have Adhesive Arachnoiditis. My only option is pain management thru medication and doing physical therapy at home. I cannot sit down for any length of time, lying down hurts and I can only stand for so long without my legs giving out. In addition to that these days I have been getting shooting pain down my leg when I do sit. Sadly as much as a body needs rest…I can no longer rest comfortably. My quality of life is almost non existent due to the debilitating pain and without relief I really contemplate ending my life. I can no longer deal with the agony and doctors being scared to treat patients that are suffering is not fair to us…the ones in pain. I do not want my friends and family to grieve because I took my life due to pain and lack of treatment. As a concerned, responsible patient I try my best to not even use all the medication prescribed by my doctors to avoid needing to raise the dose of medication needed to relieve my pain in the future. The chronic pain patients are the ones that actually visit their doctors more often, are subject to drug tests and are not the reason there is a crisis in this country.

   The problem is so bad here in Texas that doctors do not want to care for patients and treat them for pain. I moved to Texas 2 years ago and have struggled so bad to find care/treatment in Texas that I have been forced to fly back to my old doctor in California to get medication. Recently I saw a copy of the medications I have been prescribed by the different doctors in Texas that I have seen and all the different prescriptions I have been prescribed. There are many medications on a list and that I never even picked up. I now look like a drug seeker because of the amount of medication changes these doctors have made. How does this happen…the medication shows on a pharmacy list but if the medication was prescribed but not filled why would it show on a list of my medication?

   My previous doctor I saw for many years knows me, knows I do not over medicate, I have never needed to raise the dose of my medication or make any changes. He wants me to find a doctor in Texas to care for me. I cannot believe that I am not able to find a doctor to treat me here in Texas. Sitting is so painful and it is a struggle to fly 3 hours for a doctor appointment. I have to sit in the car an hour, sit in the airport for 2 hours and then the flight for 3 hours. Sitting is so painful and between my back and pain shooting down my leg. By the time I arrive I am in such horrific pain it takes days to recover and I am so tired of living in agony. The only relief I get from the trip is that I have another 30 days worth of medication after suffering so bad during the journey. This is so wrong and it is my human right to have pain relief because it is available.

   The real problem seems to be the addicts that purchase medication from the streets, not knowing what they are purchasing and not receiving medication through the proper channels. When people are not able to get their medication from the proper channels they will seek options from the street with hope of finding some relief. Pain relief is a human right and without relief people will take their lives. Living with debilitating pain you have no quality of life and no reason to wake up in the morning. I am tired of being treated like I am a drug addict because I am suffering severely and need medication to be a functioning adult. I know I will never be pain free but any relief is welcomed. Please, please for the love of God stop punishing the patients and the medical professionals trying to help them!

3. I was diagnosed with Fibromyalgia in 2012. I have pain all over my body. I was turned down on some medication, by my regular doctor, that sent me back to my arthritis doctor, that diagnosed me back in 2012. And she said she could not give me medication for pain either, and I was sent to a pain management doctor. So every 2 months I have to go in and see the doctors. I do not have the extra money to pay for a specialist rate of 100.00. So I suffer in pain … and take over the counter stuff that doesn’t work … this is ridiculous … I never over-use pain medication, but we are being treated like a drug head. When will someone help??? I work for a living and now I am thinking about going disabled, due to the pain… I can’t manage.

4. I had hurt my back many years ago and after trying injections and chiropractors, I finally bit the bullet, and had back surgery. I was told they could fix my back. So, after surgery, I thought, the pain I was having was from the cut and would quit hurting as I healed. This did not happen. I have been taking pain medication, hydrocodone, for about 10 years now for pain. It helps me have a life. I take it three times a day. I have tried skipping one occasionally to find out if I could cut back. Taking meds is the last thing I wanted to do at my 58 years young age, but can’t imagine not having them. I have never abused them. My doctor said he needed to cut me back because of the opioid addiction. Although I never get completely out of pain, it makes my life at least tolerable.

5. Glad you are doing this work, bringing awareness to our chronic pain problem, and having difficulty getting pain Rxs. I am a retired TX educator, and a “very light user”, on a very low dosage, according to my Pain Management doctor. I also protect my pills, keeping them in a safe and secure place. But, I’ve heard of cases where seriously ill and terminal patients had their pills stolen by their own children to use, share, and sell on the streets! Then, the patients had NO meds!

   I’ve had problems with pain since I was 20. Lower back, neck, knees to name the worst spots. I inherited these problems from my dad. He suffered so much his whole life. In the 40s-60’s, he would get the old “compound F” shots, with long needles, into his knees. He said the shots were very painful, and didn’t last long. I think the only choices back then were pretty much those shots and morphine.

   Last week, I had a lot of difficulty getting my Rx filled. They would only fill 6 days worth. For several years, I’ve had injections in my back and neck. Those stopped being effective, so then I had the ablations in my neck. I had to have both knees replaced. I have a back brace which can be pressurized, heat pads, ice packs, a TENS unit, and a Rx pain cream. I had to stop the pain cream and all NSAIDs due to a stomach ulcer. I also do physical therapy. A year ago, my co-pay, with insurance, on each procedure, went from $75 to $250. Very tough on a widowed retiree living on a below poverty income!

   I only take my pain Rx to supplement the other pain reducing methods. The pain Rxs can be very constipating! I’m also retired, so I don’t have to work when I’m in a lot of pain. I did that for years, and it was very difficult, and sometimes impossible. I really have sympathy for you all that are now in that cycle, and you can’t get the needed medication and treatment to relieve the suffering.

   I do feel that the doctors indiscriminately flooded the market with pills. I could get a 90 day supply at 4 pills a day. It would last me over a year. I have no one in my house or visitors that I have to worry about stealing my Rxs. Even at that, as I said before, and knowing the problems with the pain Rxs, I guard mine. In about 2010, I heard that the pills were selling on the streets here in my town for $10 a piece. So, you can see why crooks wanted to get their hands on them!

   What solution is your group proposing? I’d like to know more about it. If I agree with your platform, I’d be willing to join a group in Texas.

6. I am 64 years old, I have been in 3 auto accidents (was found not at fault in any of them), I was already hurting from cervical spondylosis. From the bottom of my neck up into my head (aches). With each passing year the pain worsens. I did not take pain pills daily, maybe two times in my life for the pain. With age I must take my pain medication to survive. I was in a very bad accident in 2008. I was diagnosed with 3 fractured vertebra in my lower back, one in my mid back and 3 herniated discs. A torn shoulder from the seat belt. I am now suffering from arthritis that seems to worsen as the months goes by. I was taking 4 pain pills per day and I even had the doctor put me down to three, pain was some what manageable. And this was before the government (ya we the people) step in and yelled Opiate abuse. Even before that, I tried taking 2 pills a day, and I suffered from 2 pm til my 8pm. Agonizing pain where all I could do was cry. Pain so bad down my left leg, I wanted to cut it off. I tried every pain relieving cream, heat and cold packs, I have bought the pain patches that are sold over the counter. I do not abuse nor sell my pills, would take a lie detector test. I have had many xrays and MRIs that confirm what I have written. If my pills are all taken away from me I will die from the pain one way or the other. I never took pills to get high never!

7. I have been disabled since 1995. I have chronic arthritis and stenosis. I have sciatica both in my back and shoulder from stenosis. Most of my time is spent in bed. I can hardly walk very far without hurting. Some nights I can’t sleep. My doctor has taken me off my pain meds and I have a hard time functioning without them.

8. I am a person living with long term chronic pain from multiple accidents and suffering the same experience of under prescription of opioids (which is the only thing that has been found to help my pain) and contemptuous treatment by doctors.

   However, as useful as articles written by professionals that advocate for us and sites such as Don’t Punish Pain Rally, protests, etc – and I am ecstatic to see the pendulum start to swing in the other direction – I don’t think anything will really change until lawsuits are initiated on our behalf. At the bottom line, it’s always about money. When I went to the web all I could find were ad after ad from legal organizations offering to sue my doctor for prescribing opioids or the company itself who makes the opioids that I took. Nowhere was even one ad offering to help patients with chronic pain sue their doctor for under medicating a patient in severe chronic pain.

   It would be really, really, great if sites advocating for us patients with chronic pain would start to seek lawyers to represent us and also, publish information about any lawsuits initiated on our behalf.

9. I am writing on behalf of my husband who I cannot bear to watch suffer any longer. He had had chronic pain for 10 years. He has had a microdiscectomy, lumbar laminectomy as well as a lumbar fusion. His fusion failed so he had a two-part procedure to correct the fusion. He has done epidurals, physical therapy, chiropractor, spinal implant trial which failed. His surgeon said his source of pain is stemming from significant scar tissue that is entrapping his nerve roots. He was recently referred to pain management whose treatment plan is for him to “stretch more”. He was given zero pain medication. I am a physical therapist by trade and my professional opinion is that if you put that nerve that is entrapped in scar tissue on stretch, you will only aggravate the nerve and increase pain. My husband is 36 years old and has suffered since he was 26. He is an extremely hard worker and his only goals in life is to return back to work and to be able to care for his children. Simple quality of life goals. I watch this grown 36 year old man sob every single day of his life laying in bed, contemplating suicide almost weekly at this point. How can I watch this any longer? How can he deal with this excruciating pain any longer? Day in and day out with no end in sight. DON’T PUNISH PAIN. My husband did NOT ask for this life. He went to work. Worked 6 days a week and was injured. This is the price he has to pay for being a hard worker and being an active member of society, however if you were to look at him now, you would never know that. He is severely depressed. He can no longer spend Christmas mornings with our children, go on vacations with our children. He sobs… and sobs and sobs… daily. All he is asking for is SOME quality of life. On his behalf, I am begging you. DON’T PUNISH PAIN!

10. Hello I’m 40 years old and have been dealing with severe pain in my back and other parts of my body since 2011. I went for a gallbladder surgery and ERCP and ended up with pancreatitis, 1.1 month in the hospital. Came out of the hospital 60 pounds lighter could not walk on my own. I regained walking on my own but had severe pain in my back. Doctors could not explain for years until 2017 when I finally got diagnosed with ankylosing spondylitis late stage – fibromyalgia, and doctors are still trying to figure out other issues I’m having. I have not had any pain meds since 2012 when I took myself off because the pain was tolerable until 2014 when it starting hitting me hard. Doctors told me sorry you will get addicted. What?? I took my self off. So the past 2 years the pain has made it impossible to do anything. My daughter is a junior I have not been able to go to her games or concerts because it hurts so bad to sit in those seats and she says she understands but I don’t. She has one year left and I have no relief to do anything with her and that troubles me more then anything. Recently I went to a doctor he asked who I was. I told him my name. He introduced himself then said we do not give out opiates in this office and then went on spewing about addiction. When he was done I asked him if he drinks. He hesitated and said yes he enjoys a drink here and there. I stood up and said I do not want a doctor that is an alcoholic and walked out. His office admin called me. I explained what happened and that he discriminated against me as soon as he saw me. They apologized and asked if I wanted to come see another doctor. I said no not in your office. I am 6 feet, 240 pounds, have tattoos and a beard. That seems to make me an addict even though I have not had a pain med since 2012. Sorry this is scattered other medications I was on gave me brain scatter and I had to learn how to spell my own name again. Thank you

11. I was diagnosed with scoliosis at age 13. Then in 1996 I was in a near fatal accident. I’ve had 8 back surgeries, a neck surgery, lost 1/2 right breast, and the seatbelt exploded a 30 pound tumor on my left ovary. So that being said I had to have a complete hysterectomy. I have been in severe pain since early in life. I have a pain pump but it’s not enough to help take away the pain. I also have a spinal cord stimulator that runs 24/7. I am not an abuser of medication I just want to be out of pain. I was on 2 different medications and they helped. Then I was told I could not have oral medication or the patch. Please help us that are in dire pain. We just want to live a halfway comfortable life.

12. I am a disabled 68 year old Vietnam Vet. Before the opioid war on doctors my meds allowed me to hold a part-time job as manager for a 39-unit housing complex for graduate students. After the VA stopped my meds I lost my job due to my inability to walk more than 10 meters. My arthritis knee is now deformed from constant inflammation and pain. Now I spend my boring / unproductive days off my feet. I’m a burden to my wife and daughter. I want the life I enjoyed for decades before the CDC and DEA became the terrorists of doctors and pain patients.

13. It started 17 years ago. I had been having uncontrollable diabetes, brought on by a misdiagnosis of bipolar 1, and the psychiatrists loaded me up on SSRIs, tryclics, and anti-psychotics. That went on for ten years. Then, they discovered that I did NOT have bipolar 1 but was instead dealing with C-PTSD. By then, the diabetes that I had, that no one else in my family had, was completely out of control. My hands, arms, legs and feet, as well as my intestinal tract, were in constant neurological pain. NON-STOP. So a local GP decided to give me methadone. My first reaction was, “Isn’t that what they give addicts?” But I was assured it was great for nerve pain. And, it was! But I had to live with knowing that people in our small town thought I was some kind of lapsed junkie. This went on for nine years, and the newer doctor added ativan (for seizures, ocular migraines, and BPVV) as well as oxycontin for ‘breakthrough’ pain. I went to Florida for a three month visit and when came back I learned that I was cut off! ABSOLUTELY NOTHING … after 17 years of being ON opiates, just cold turkey! Today, I want to kill myself. I cannot see a way to live in this pain. I’m 63, eaten up with the diabetes that came from a misdiagnosis, and finally on good medications that work — only to have them yanked out from under me. What is a woman to do? Stay in bed, do not eat, do not drink … and die.

14. Hello fellow pain warriors and supporters. Support of family and friends is crucial when living with chronic pain and illness. So much of what I do daily, depends on my tolerance of pain, fatigue, mental exhaustion, to name a few. The past year has been spent mostly at home, has been the most challenging. I remember three years ago, I chose to rid my body of all narcotics after 8 years of use. My body had enough. I picked my bootstraps up and moved to Florida. It was risky, uncertain how my pain would progress. Well it did progress, add back surgery in 2018 and I had to move back to Pennslyvania. Prior to coming home I had pain management, a wonderful doctor who could only provide one script for 30 days. I have been unsuccessful at securing a doctor willing to treat my medical issues. I can honestly say that suicide has entered my mind, it seems to me a logical solution. If that sounds bad, of which it does, imagine how one must feel to justify suicide. Pain patients are being treated like criminals, this has to stop. Thank you, Shelly.

15. I was 23 when I was diagnosed with Ulcerative Colitis. I was in the hospital, with a 16 month old baby boy at home with my mom and grandma. They believe I developed it while I was pregnant at 21. The symptoms I had I thought were all post-pregnancy related. UC is a genetic disease and runs in my family, however no one else in my family ever got it to the extreme I did. I was in and out of the hospital several times.

    Then in August of 1994 I went in for a week and was transferred to UTMB in Galveston with my family being told that I was not going to make it. 2 months later I had my first surgery, a total colectomy to save my life, and 2 weeks later I went home to my baby boy. 9 months later I had another surgery, that is when I learned that I was a bad adhesion (scar tissue) maker. 2 months later I had my third surgery leaving me at 24 yrs old with a permanent ileostomy. A year after my third surgery I went back to work, during that time I met who would become my second husband and a god-send.

    During this time I did well, working, raising my son, taking care of my husband, however I was not healthy. I was constantly in and out of the hospital with blockages in my intestines caused by the adhesions. I worked for 8 years and had 2 more surgeries during that time. I had pain issues, but I just dealt with them with the occasional help of medication. My last year of work, I was 34, my health was declining and so was my mental health. I started having panic attacks, anxiety and depression. My doctor took me off work in December of 2004 at 35 years old. I had another surgery months later. 6 major abdominal surgeries and the adhesions were taking over my pelvic and abdominal area. The last surgery didn’t go well and I became severely anemic.

    I had ups and downs for a couple of years and saw several GI drs, for pain and weight loss. 12 years ago the GI doctor I was seeing said there was nothing else to be done for me but pain control and sent me to a pain doctor. He over-medicated me and then after 3 years of seeing him I developed fibroid tumors and Degenerative Disk Disease related to my UC. My rheumetologist suggested back injections, I had to switch pain doctors to receive them. For nine years I have been taken care of by a doctor near me.

    6 months ago he dropped me as a patient because of my multiple problems and he no longer prescribes medications because of the “Opioid Crisis”. I have had 2 more minor surgeries on my abdomen, one was in September to see if I could have a hysterectomy, because of the fibroid tumors, cysts and endometriosis and hemorrhaging. They could not see my uterus nor any of my organs because the adhesions are so thick and surgery is too dangerous for me. Both my gynecologist and gastroenterologist (multiple ones) have said they can do nothing more for me, all that can be done is control my pain.

    My doctor is handling that temporarily as I have been unable to find a pain doctor that prescribes medications. I need the injections for my back, however they cannot do injections in my abdomen or pelvic area. It is painful for me to eat and I constantly get blockages and have what I call “episodes’ of vomiting and diarrhea. I’m very weak, pretty much bed ridden and only weigh 94 pounds. I was told today that they do not believe my intestines are absorbing the nutrients from the food any more. I am 49 years old. The pain medicine helps me eat, it helps my migraines, it helps the stabbing pain of my scar tissue and my back and neck. I’ve had arthritis since I was 40 because of UC and I have osteopenia and bursitis.

    I have several health problems so this just adds to it. I wrote my congressmen last year and never heard a word back from them. I have no idea what to do. I’ve lost my faith in the healthcare community. I have faith in God, so I pray for a solution!

16. My story begins at the age of 17 when I was diagnosed with scoliosis. I have been dealing with the pain, only having taken ibuprofen. But a doctor I went to for my x-rays who was a chiropractor popped my back and I experienced no pain throughout the whole day. Thinking it was all over. The next day I go in because I woke up at 5 a.m. in excruciating pain, worse than it had ever been before. He tells me that oh that’s common and that he would have to work on my back 3 times a week for about a year at $200 plus a visit, yet not guaranteeing my back would or could be fixed! Now I don’t know about most people but $200 times 3 times a week for a year is a lot of MONEY.

    EVER since then my back has been worse. They lost my records so I went back to get new x-rays and come to find out I also have spina bifida. I could no longer stand on my legs for more than 10 to 15 minutes without severe stabbing pain in both hips. I was seeing a doctor who got his license revoked for just prescribing pain medicine. Now, I can’t do even the simplest of tasks without my medicine. My daily needs like being able to wake up and get out of bed or things like I cannot brush my teeth every day. I cannot take a shower every day without being in severe pain. Imagining other tasks that are much harder than that are almost impossible … unless I push myself to the point where at the end of the day I can’t sleep at night, tossing and turning and crying. Then to wake up feeling like someone has hit me with an 18 wheeler … no energy and being in bed all day long, feeling so helpless and ALONE! But of course the government knows best … right!

    They also have become an impossible thing for me to even get my medical records which took me several years to get all in order. And now the doctors that are specialists want records and cannot see you without records, or they request insane first-appointment fees of over 300$ to just be evaluated. All the while going through deadly withdrawals … dealing with that at the same time my mom was dying in ICU and I couldn’t get out of bed to even help hold her hand during that horrible process, with being an only child and no other family to help. I can only pray for strength right now, because facing the day alone in PAIN is the HARDEST thing I have faced since losing my mother.

17. I had cancer with subsequent surgical and radiation damage. I was out on a pain management program that allowed me to walk. With pain but walking. After the public crucifixion of pain patients my dosages were lower by two third so the amount of medication would be within an arbitrary number selected by someone other than my private doctor. It was a national maximum he had to pick. Now I walk with equipment and with a great deal of pain. My overall strength and general health is declining due to this inactivity.

18. Chronic Degenerative Arthritis. I have had both hips replaced, shoulder surgery, and two separate cervical fusions. I have scoliosis and have never missed a day of work except for surgery. Sometimes I just can’t deal with the pain, and head to my bed. I want to return to my active life. Pain medications help keep the pain stable!

19. I have been on opioids since August 26th, 1996. I have tried several times to stop taking opioids. But, it’s my severe debilitating pain has made me need pain relief just as a diabetic needs insulin.

    I was diagnosed with Fibromyalgia in 1994. Biliary Duct Obstruction Disorder in 1996. Biliary Duct Cancer in 1998 (in remission since 2004). Osteoarthritis and Degenerative Bone/Joint/Disc Disease in 1999. Bulging, herniated, and pinched discs throughout my spine from my Cervical through the Thoracic down through the Lumbar to the Coccyx in 2000. Systemic Lupus in 2012 (Most likely misdiagnosed since 1995).

    I am NOT addicted to pain medications. I do NOT ‘crave’ them. If I am addicted to anything I am addicted to pain relief.

    Before the CDC handed out their blanket ban policy that scared every doctor who writes for any type of pain medication, I had a good quality of life. My dose was approximately 4 times as much as I take now. I was about to try to see if I could live without my SSDI check. I was active in my community. My marriage was perfect. We were saving up for our first home.

    Now I am bedridden, bedbound, and my pain is through the roof. My marriage is falling apart because I can’t go on date nights, cook, clean, or do pretty much anything.

    And, my doctor just got in my face during one of my recent appointments with him, and yelled at me that I am lucky that I am being prescribed anything.

    I just want to live my life in peace and be able to LIVE! I’m not looking to go skydiving or to climb any mountains. I just want to be able to go on the occasional date night with my husband and to be able to cook.
    According to the Bill of Rights, I have the right to “Life, Liberty, and the Pursuit of Happiness…” I cannot live with the pain that I am suffering from. I am being held prisoner by pain. With a quality of life of around 2, I am far from happy. I don’t even have the energy to spare to even pursue my happiness, never mind anything else…

    It has been shown time and time again that when people take these medications AS PRESCRIBED, their chances of becoming addicted are less than 10%. I was told around 1998 that chances were that I would need to be on these medications for the rest of my life. I have come to terms with that. And, I take extreme precautions so that I do NOT accidentally overdose.

    Unfortunately, I know several people who decided to kill themselves when their doctors told them that they were “cut off”. Instead of using titration, they cut these people off cold turkey.

    This is tantamount to cruel and unusual punishment. We are being punished because people don’t know how, or who, to ask for help. They abuse their medication not taking them as prescribed. Then they try to get drugs off of the street and end up dying from overdosing on a combination of Fentanyl and/or Carfentanil. Because, people are both desperate and stupid.

    Doctors need to figure out which of their patients are using them and who has a legitimate medical need for pain medication.

20. My mom is 71 years old and she had surgery over one year ago for colon cancer, and a kidney removed. She was put on all these medications, OxyContin and other meds, and now she shows no cancer. So the doctor from pain management is taking her off the OxyContin. She [was tapered down over a few weeks to one-sixth of the dose]. So now she has a hernia and is getting surgery in a few months. She has to lose weight (20 pounds) and she is in pain, crying that her hernia hurts. What can I do to help her so they can keep her pain down? She is waiting for surgery but that won’t happen til 6 months from now. What can I do to keep her in meds from the doctor, anybody know?

21. I have a broken neck and collapsed spine among several other complicated issues from failed surgeries. Forced to be referred by a friend and former doctor of over 20 years due to his legal issues. I am forbidden to contact him. He knows my complicated history both medical and personal. I called him on his personal phone for advice whenever I needed it… in real time… Haven’t taken or filled a prescription for 19 years. Can pass any drug screen at any time. Have been intimidated by a system that says it is looking out for my best interests. I was referred to a doctor in Michigan because I am forbidden to speak with my friend. I have been waiting in a bed, in a hotel for 70 days now. It costs more than my income every month. The hospital that I am scheduled to visit is full of coronavirus potential patients and the flu is so bad that visitors are not allowed in. I have to wait in line to answer the questions… Name? Date of birth? Age? Do you have insurance? Address? Relatives? In a few words describe your injury… the resident doctor will be with you soon… we are backed up so it may be a few hours…
    I’m from the Government and here to help you…
    Glad they protected me from Dr Bauer…
    I feel better now knowing that my life is in their hands…

22. I injured my back in 2008, giving care to my home hospice husband. I was his only caregiver and had to lift his 5’11” frame multiple times a day. I was left with serious unrelenting back pain. I struggled with it for two years, unable to work or function. In 2010 I finally relented and had a lumbar laminectomy. The pain after surgery was 1,000 times worse than before surgery. The surgeon told me to give it a year to improve. It did not. Now I’m told that my hardware has come loose and I’m facing a second surgery? I have complete numbness in my left leg, foot and ankle, I have pins and needles in my feet. I trip over my feet and fall often. I have become bed ridden, and have lost the ability to do anything that I once enjoyed. I stay at home and pray for relief from the next pill. It only takes the edge off. I will not have space-age devices embedded in my body because I think they’re a gimmick, and I listen to other patients talk in the waiting room. I have no support system, no surviving family. I live alone, in extreme, excruciating constant pain and isolation. My pain management doctor recently retired and my new doctor cut all my medicines in half. Now I suffer more. I am seriously contemplating suicide. I have the bridge picked out. If it were not for my love of Jesus Christ, I would already be gone.

23. I have been in chronic pain for 15 years. I am on disability since 2009. I have numerous health issues but the 2 biggest being a deteriorating spine and CRPS in my right leg down to my toes. I am at a pain level of 8-10 every single hour of every single day. I used to have the proper amount of pain medication that made my life about 50% easier to live. But now I am house bound most days and even unable to get out of bed many other days. I am treated like I am a criminal as I am being continually weaned from my medication. I have tried all the injections, physical therapy, spinal cord stimulator and bio feedback but nothing helps. We have to jump through hoops to get any medications and we are being held accountable for the opiate crisis. That’s not fair to those of us that need medication to have a somewhat normal life.

24. Hi my name is Mark, my girlfriend is 69 years old and is a 4 time breast cancer survivor, and as a result of surgery, arthritis, and a compression fracture in her back, she is in almost constant miserable and excruciating pain. Every attempt to get pain medication from doctors have failed. I am composing this note in an attempt to help her. Thank you Mark

25. My name is Cheryl Ostrander, I am a chronic pain sufferer. I have had to live with chronic pain since 1994.

    You see I was a factory worker doing piece work from the time I was 18 until the age of 32. I loved working and I was very good at what I did, until my doctor told me I could not continue to do manual labor due to a severe injury to my right elbow, which resulted in two extremely painful surgeries. Pain plagued my body in a way I had never experienced before. After seeing multiple doctors and trying to find out what was wrong with me a rheumatologist at the Mayo clinic told me I had fibromyalgia.

    In 1998 I went to college and earned a degree in computer science with a GPA of 3.48, I loved it! I was able to obtain a position at Bass Pro Shops in their computer repair department where I worked for two years. From there I went on to be the network administrator for Teeters in Bolivar. In 2005 I began having severe pain in my neck and arms. I was sent to a neurosurgeon where they discovered a bone spur and bulging disc in my neck that were dangerously close to my spinal cord. I had to have surgery to correct that and they fused my neck from C4 to C 6 and I have had to be on pain medication since then.

    Unfortunately that was the end of my career. At that time I went on disability for the chronic pain that wreaked havoc on my body. My health spiraled out of control after that. I was diagnosed with breast cancer in 2008 which resulted in a mastectomy and countless reconstruction surgeries. In 2013 I was diagnosed with chronic pancreatitis, leaving me in yet another debilitating amount of pain every time it flares up. In 2015 I had to have a total knee replacement which was incredibly painful. In 2016 I had another mastectomy leaving my body writhing in pain every day. Then in 2017 I began having problems with my neck again. I had another spinal fusion leaving my neck fused from C4 to T1. The pain was so intense that I couldn’t see living that way every day of my life, but I have held on.

    I have spinal stenosis, spinal degeneration, AS in my low back, hips and neck, Osteoarthritis, Pustular Psoriasis, degenerative disc disease, fibromyalgia, migraine headaches and chronic pancreatitis.

    Fibromyalgia has a way of taking hold of every speck of pain in your body, and turning it into a massive amount of lingering intractable pain.

    The reason I am telling you all of this is because there are people just like me all over this country who are suffering at the hands of the opioid crisis.

    The new CDC guidelines have no room for chronic pain patients. We are stuck on the outskirts of this war on opiates hanging on for dear life.

    Our doctors are scared to death to write us prescriptions for opioid pain medication, forcing us into pain clinics where we are treated like addicts and criminals in order to get what we need just to live a somewhat normal life. A life where we are still in pain but have it under control enough to participate in everyday events. Things like playing with our grandchildren and taking care of our homes. The very simple things in life that keep a person feeling like they have a purpose here. As of this moment I am not on a sufficient amount of medication, and am being forced to taper to follow these guidelines. They are terrified of what may happen to them because of the CDC guidelines if they attempt to give us the care that we need.

    Chronic pain patients are not a one-size-fits-all situation. Some people hurt more than others and some hurt less. I implore you to please try to find a better solution. Putting chronic pain patients on palliative care could be a solution. Please give our doctors back the ability to assess their patients as they were trained to do in medical school.

26. So I have legitimate pain issues. I have degenerative bone problems. Several disks deteriorating and both my knees are bone on bone … there is NO joint left there. In addition I suffer from various intestinal problems that I’m not even allowed to speak of in this “pain clinic” I’m forced to go to.

    First of all … I’ve never been convicted of a crime in my life and I’m almost 60. But I am not a patient to these pain clinics. This feels exactly like a felon going to visit their parole officer. I’ve never seen an actual ‘doctor’ in this latest clinic. Just these very young ‘provider’ people who haven’t a clue what chronic pain feels like. I have to check my dignity at the door because it will be wrenched from me as soon as I enter. After filling out a mountain of paperwork and a lot of waiting, I’ll get called back for my drug test. Here … I will have to leave my purse because I’m not allowed to take it with me into the bathroom. Hopefully that tech will stay in the room with my purse although I have caught her walking to another room leaving my purse unattended while patients are milling around asking why the long wait. After that, more waiting … literally hours at many times. Finally, you get called to have your pills counted then sent to another room to wait. Then a cocky provider comes in, cuts your meds in half and forces you to take shots. Be fitted with a brace (this is the part where they just milk your insurance for every dime they can get).

    If you question them about these shots they will get angry, threaten to dismiss you and then cut your meds way back. Shame on me for being very afraid of the use of propathol in a dirty office setting. To wrap this story up because it’s turning into a novel … All I’ve heard from them is the laws and guidelines they have to follow. It’s not about me or you, it’s about how much money they can make while still keeping their license. The epidemic no one is talking about is the suicide rate that will continue to go up from people being so miserable from pain and feeling defeated by the CDC, DEA, media and public opinion. How did we ever let all these organizations get in between us and our actual doctors?

27. I have had breast cancer, I have seven bulging disk because of working as a caregiver, both my knees have severe osteoarthritis. I also have biracial plexus neuropathy and systemic neuropathy and fibromyalgia. Help

28. Hello, I write this because I want to share this. From 2007 to 2018 I have had 3 lumbar spinal fusions and 5 laminectomies and 2 left knee replacements (1 was a revision). I have noticed over the years the doctors’ less and less willingness to prescribe pain meds when really needed. So I would follow the other OTC recommendations when they wouldn’t prescribe meds. Those times I really needed pain meds and followed the OTC recommendations it never helped. So I tried to adjust and when the pain became so bad I would go to the ER. Then I was diagnosed with advanced prostate cancer 5/18. The cancer isn’t an issue with pain … it is the pain from the effects/side effects of the chemo drug and radiation. On a few occasions in the last year my oncologist prescribed 2 prescriptions I asked for. Each time he would mention the guidelines and such about prescribing opiates. Now he won’t prescribe any at all if I need them. So long story short I am caught in the middle of this mess.

29. I was treated by the VA for decades for my AS and OA. Each day I took my Opioids as prescribed. I was able to work PT as a manager for a 38 unit housing facility. Then one day the VA stopped giving me any pain pills. When I objected to this harsh treatment they put (to my amazement) a notation that I had a substance abuse problem! Later I found out from others that they had done this to ALL VETS who had been cut off from pain meds. I never asked for more pills in all these decades. Never overdosed or was treated for substance abuse. I didn’t get “high” from pain meds I just felt like a normal pain free healthy 68 year old. This is how the VA drastically reduced it’s prescriptions so they could show the CDC, DEA and the press that they were fighting the War on Opioids.

    Privately, my elder doctor said his hands were tied by the VA Administration. Now I spend most of my day on my back, my leg muscles have weakened and a recent x-ray shows “significant osteoarthritis” to quote my doctor’s letter. This is due to 24/7 pain and inflammation that I Did Not have while taking meds. All they have offered is cortizone injections which is ineffective. I can’t take NSAIDs due to GI bleeding.

    What can I do? Right now the pain prevents me from walking more than 10 meters. My sex life has also stopped and now my young wife is frustrated/angry with the VA. To say I am depressed is putting it mildly.

    Martin

30. I’m happy to see that something is being done to make more people aware. I think most not afflicted with everyday struggle of life with this pain, really don’t see it. That every decision, based on how well we can manage such basic movements and how hard accomplishing goals can be. Me, looking around my home at chores and my niece and the things I want to show and teach her. How basic, common simple things can set me back days behind with more pain. A wrong pull or turn and as a man, crying like a child with really no end in sight.

    How this can affect my mood, my interactions, and how I may feel tomorrow? I think about all that and then my doctor and his blatant cavalier attitude about doing nothing. The commenting guide said not to include specifics or dosages and good thing because I have none. None – no history for a decade of pain. A decade of sadness. I was arrested on Thanksgiving at the Emergency Room for asking for help and becoming frustrated when they looked me in the eye and called me a drug addict. No drug screen and no xray. This is how united regional medical center helps people. And that was my second time there that day, having been taken there by ambulance the first time. I was given nothing and then a week later sent a bill. I hope my story helps put into perspective the reality that we are living in today.

31. Had a neck injury in 1988. Herniated discs were the main issue. After a lot of therapy and pain point injections I was much better and much younger!

    In August 2017 I was hospitalized for Chronic Pancreatitis. With a cyst in my abdomen the size of a cantaloupe, it was the worst pain I ever had experienced. After multiple stays in the hospital I continued to have tubes that were inserted into the abdomen with collection containers to capture infected fluids that I had to empty daily until early December 2017. I had lost so much weight. Once when healthy, my normal weight would be 180-190 pounds. At that time I was 119 pounds and had lost so much muscle strength and the pain continued.

    In January 2018 I was admitted once again to the hospital as another cyst was found on my bladder. Again tubes were inserted and for the next three months, I had to empty them multiple times a day.

    During those seven months of hell I was unable to do a lot of physical activity. Loss of strength, fatigue, and having those tubes inserted inside me made my life very limited.

    But the pain never went away in my lower back. In fact I had more issues come about with my legs and feet as the more and more I would try to get back to a regular lifestyle.

    That April, I began physical therapy and really enjoyed it. I was encouraged that it would help and get me back to where I used to be. Then after several therapy sessions, I was doing some range of motion tests, when I lost consciousness and fell to the floor. After visiting a neurosurgeon and having a multitude of imaging, my doctor said I have the spine of a ninety year old.

    I’m now diagnosed with Spinal Stenosis in both the neck and lower back areas. Degeneration in both areas as well. Different doctors have said that the duration of the seven months of inactivity along with the medical issues had led to my demise. I have already been cut off of opioid medication by one doctor and am very fortunate that I found a new one who has resumed my medications. At least for now.

32. I am a 33 year old woman living in Virginia, well living as best as I can with what life has given me. Shall I tell you my story? Would it mean anything? I will start by saying I was a child used as a lab rat by a family doctor when I was younger. I was also made to do a lot of hard labor growing up. I took care of my siblings and grandmother. My mother has just been diagnosed with a lot of mental illnesses that she used to the worst extreme. I have been diagnosed so far with Chronic Pain due to Disc Degenerate Disease, I have Macular Degenerate Disease, PCOS, multiple miscarriages, and leg surgeries due to my hereditary veinous condition. I found a wonderful NP twelve years ago that has not only helped my own body but my families. As of a little more than fourteen months ago that all changed because she had too much compassion for the chronic pain community. So when I started looking for another doctor, I live … how would as they say .. under a rock.

    So me finding out new terms like drug seeking, drug dependency, doctor shopping. Well that was all new to me and I have to say I was naive to believe there were other professionals that would be as compassionate as my NP. I was wrong. So very wrong. I went to a doctor who I guess took pity on me but had no bedside manner. He just recently dropped all of his clients. So I’m now living in more pain than usual. I have to go through withdrawal once more. I have also come to realize that even though this is all these doctors seem to care about – catching an addict. That even taking Tylenol or Ibuprofen or Aleve, well you’re considered an addict for that also. One doctor took me out of pain, which I bless her for that. Now the government and other doctors would rather see you in pain.

    What is this world coming to? I find myself thinking on days when I could move, I could run around and do what I needed. Now I’m sucking it up and putting my big panties on. I’m sick of being treated like I’ve done something wrong, I know I haven’t.

    I sure hope this pendulum will swing in the right direction this time.
    Welcome to Hopeless in Virginia … thank you and take care all.

33. I have 10 back diseases… Degenerative disc disease (3 vertebrae devolved in neck, worst the doctor ever saw, 3 in the middle of my back, and 3 at the base of my spine, with a a canal that picked and makes me fall, bruised hip bone right now. Rheumatoid arthritis all over back now spread to hands legs, knees … a rheumatoid cyst the size of a gulf ball formed on the back of my left knee… not removed, I need a knee replacement available recently due to new metal… a 3rd degree burn on the bottom of my other foot and elsewhere… causing pain even with crutches, no one to help me so I must walk. Some days hands so bad in pain, I cannot drive. Suffer from panic attacks and sleep deprivation – zero to 4 hours sleep a night… mental pain with anxiety and depression. Ten staples placed in head when my crutches slipped and I fell into a window… 4 pieces of glass removed by walk-in clinic after emergency room refused me a 2nd time… asked by she devil from Hell to move after verbally abusing me since the day. I moved in. KKK and me Native. She came to my nose with hers and said words I have not even heard before. Thrown out, evicted, lost government housing… now homeless.

    On crutches and friends left town (not from Bloomington, IN.) I could not pack on crutches, can’t lift more than 20 pounds but only occasionally, cannot get up if I fall from pinched nerve or low blood sugar. Can never get down on knees. Had service dog, turned 12 almost 13 that landlord took him. She also took over $7,000 of my paintings that packers and movers left behind. Used emergency credit card to pay movers $1,500 plus $200 a month in storage. Card used to stay in sleazy motels once being a college professor and professional artist (last painting sold for $5,000 in NY. Film premiered at American Indian Smithsonian. Was middle class. Now make $865 a month on SSI disability minus bills and $12 dollars in food stamps.

    Food banks closed due to virus so hunger pain… and the pain of poverty, Fibromyalgia, spinal stenosis in 2 places in back and spinal myalgia in 2 places and some other back problems, pinched nerves etc. Was working from home doing digital art til former land lady from hell blew the wrong computer causing my computer to break. Was gifted with a $5,000 special chair the size of a dentist chair requiring its own room and special table where laptop plugs into larger screen, all electric table and chair adjusting to many positions to accommodate my back and body (now in storage). Was subletting from now-known meth dealers and users along with their alcoholism stopover $1,500 TV, stereo speaker, still in box. Passport, birth certificate and more… much more… that kind of pain… Turned heat off in winter causing pneumonia my doctor ignored with water/liquid credit into my heart causing a heart attack and double pneumonia and was in hospital a month. Facebook friends only human contact/friends… Repeating myself… posted on FB guess what less friend I really know and FB friends than I thought. A broken heart, “Here is this disabled person’s problem: I make $865 a month on SSI disability. Also do some work from home. PROBLEM… I am in-between apartments using an emergency credit card to stay in sleazy motels where I have been ripped off a TV a passport and birth certificate… my prescription drugs and more, all totaling $8,000 I can never pay back (bankruptcy). I just had a heart attack and revived 2 x’s and double pneumonia… a month in the hospital. I have a team of social workers who are supposed to find me a new apartment/place to live… 2 months now but stopped working because of the virus… I go without food and things to have a roof over my head…

    Some of us are sick and need doctors / specialists… none of mine will see me due to the virus and healing is slow. Cleaning, bathing etc. impossible… would appreciate advice… Please… message me of moment… need your help!

    The hospital I stayed at was a cult… pumped me full of morphine and some exotic psychotropic drug. Said I was out of it for 2 days (duh). Sent me to psych med, where I was tied down in an X and beaten and verbally abused several nights in a row. Was not allowed to make calls out, wash my long Native hair (matted so bad after a month I may have to cut it, that will break my heart). Stole my 2 pair of prescription glasses so blind there… and also stole all of my prescription drugs. I am totally alone here 9 friends left last year because of white supremacists… 2 died last year. I am without any help. In total pain, on crutches… and having panic attacks. I have had sleep deprivation since Dec 15 of last year. I get 3 to 4 hours sleep a night… I wonder, why live?

    At life’s lowest point in my 60 years. An Englishman offered me a place to stay in London… but no Americans and no Natives… not the Native way, not the Christian way… sad. Quick News for “real” friends”: 1st computer was broke, used an emergency credit card to stay in hotels, last one has Wifi. BIG NEWS!: Day after checking in was rushed to an emergency room where I experienced a Christian “Catholic ” Could. HAD A SEVERE HEART ATTACK AND DOUBLE PNEUMONIA! Was there a month… paid an unused motel room outside Bloomington (cheaper) for a month. Back at motel, truck broke… had it fixed. THAT’S ALL THE NEWS ANYONE WILL READ. Pray for me. Hope Matt King has not forgot about me. Sorry if I AM STILL WEAK AND RECOVERING.

    That was too FB… been using library to make digital art till I have a home… closed due to virus so no extra money coming in. 30 pills a day and injections, special elections once a week causing impotence and lack of interest in dating… no erection… so pain? Guess this is my current situation. No family, no friends, no emergency home services from medicaid and medicare… And here I sit.

    Who do I write for compensation? My congressman? Who… taxes done on computer for printer use too. Landlord taking me to court for $450 in damages and her place would not pass HUD inspection… No probing lawyer from Indianapolis after asking me to write the court for an extension. The judge does not do extensions for evictions so I did as they said and could have beat the eviction and kept the Section 8 government housing. Then a letter from that group of lawyers after the trial said they did not have enough people to help me also rejected by Bloomington, Indiana pro bono lawyers. Landlord placed vacant in mail box so I did not have time to place change of address. All Christmas gifts cards and monetary gifts sent back with all mail until February… CAUSING MANY problems… Emergency credit card running out, will be forced onto the streets… pain… don’t know if I can bear that pain, may take the other route off the earth… anyway feel free to e-mail me: frankmitchellart@aol.com, place pain in subject line so I know it came from my story. Just call me JOB. Peace to all who suffer any pain. Franklin. P.S. no opioids. Just pain.

34. To who ever will listen:

    First off I would like to send my condolences to all those family and friends who lost someone due to overdosing and or addiction issues. But my story started when I was given a option to alleviate my pain from an old high school football injury. I got hurt again even more at work one day and of course at the time I did not have health insurance. The pain was so unbearable I would rather take my own life than deal with it. Until I got relief to alleviate the agony I felt and life was looking a lot more brighter considering the chronic pain I was suffering. Of course I wasn’t aware at the time (let’s fast forward) that there would be a epidemic. But at the same time people need to be accountable for their actions.

    Opium based products have been around for a long time. I was in a motorcycle accident in January of 2020; broken left leg fibula tibula, four broken ribs, fractured hands, head contusion, and concussion – almost died. So after I got out of the hospital I thought to myself, oh god here we go again … went to my pain management doctor for help. I was on a regimen that helped my football and work injuries, and now due to my accident I needed more relief, and my doctor was receptive to my need for an uptick of relief. I go to my pharmacy in a wheelchair all bruised up mind you. I felt like I was doing something wrong when I gave him the prescription, and because of the stigma on pain medication. I couldn’t get the relief that my doctor and I agreed on due to the accident to basically go on a stronger regimen to alleviate the pain I was going thru at the time due to the accident. Again I thought what the H. I went home and contemplated suicide.

    The point of my story is I’m shouting at the top of my lungs in a room and don’t know why it keeps falling on deaf ears. Everybody is not the same whether you have an illness or are an accident survivor, all these changes and regulations are doing more harm than good for chronic pain suffering patients like me and millions of American alike. Please hear my plea.

    THANK YOU

35. If I ever wake up without pain, I will think I have died.

    In the early 70s, I suffered a ruptured disc in my back from attempting to lift a large package as directed by my supervisor. I agreed to surgery which the doctors botched ruining my life forever! I ended up paralyzed on my right side temporarily. In an effort to repair the original surgery I had another back surgery which didn’t fix the problem. Since that time I have had 7 more surgeries over 25 years. The majority of the discs in my back have been removed and replaced with a steel rod, screws and bolts. For a few years, my leg continued to go out due to nerve damage, which caused a fall that seriously injured my neck. This resulted in 2 additional emergency neck surgeries so I could function. I was in rehab for a few months to learn to walk again and use my arms/hands. The neck surgery resulted in removal of the disc in my neck. I lost 50% movement in my neck and can only partially bend at the waist.

    I am in severe pain all day every day, and my pain meds help curb my pain a little bit so I can function. I can walk short distances with a walker or cane, however I must have a wheel chair for distance. My leg still goes out and I fear another fall. When your unhealthy other body parts begin to fail, both my shoulders have been operated on. Recently I was struck by a door while attempting to enter our hotel room, shattering my shoulder, requiring me to use a sling all day, elevating my pain. This surgery will require a total shoulder replacement and I can’t handle another surgery with potentially even worse pain.

    Thank you Don’t Punish Pain Rally for helping those of us not represented by the media and other groups in their push to reduce the use of pain meds which are being abused by a small percentage of the population. No consideration was given to the thousands of people like me who spend every waking moment suffering from physical pain. I ask the doctors to reevaluate their thinking and not believe the false narrative being pushed by those who have never suffered or lived a life of physical pain. We are not drug abusers!

    Sincerely
    Pat

36. Day 44 of life changing pain. No proper pain regimen from Kaiser. MRI showed LUMBAR SPONDYLOSIS and STENOSIS OF INTERVERTEBRAL FORAMEN. Kaiser has prescribed ten different “pain meds” and ointments. Most of them NSIADs, which have already put me in the hospital in the past. I had stomach bleeding from taking the regular amounts needed to manage my pain. Still, that is all that doctors will prescribe. The last prescription is for an anti-depressant that carries side effects that are scarier than any medication I have taken before. Kaiser has also suggested epidural injections. That is too invasive of a procedure at this time. I have known people that have lost their ability to walk because of this kind of treatment.

    Currently I am teaching from home because of the pandemic situation, which is the only reason I still remain fully employed. The pain has rendered me immobile at times. I cannot walk for more than a minute without feeling shooting pain in my lower back and sometimes I am unable to sleep because of the pain. It is exhausting and draining dealing with such horrible pain day in and day out and having to beg your doctor to have mercy on your pain just to be told that you need to try this other thing first. I feel like a guinea pig as doctors themselves do not know what other treatment for this kind of pain is as effective. PLEASE PLEASE do not punish people who are in real need of pain relief. It feels like we live in the dark ages or a third world country where we don’t have access to proper treatment. It is vile and unfair.

37. My husband has had chronic pain since 1989. He was a custodian at a high school. He bent down to pick up a stack of tables in the gym, as soon as he picked them up his back popped and he was down on the floor! He has suffered through four major surgeries none of which helped him, made it way worse! He has cages and screws and a stimulator implanted on his spine… he started taking OxyContin and Percocet for breakthrough pain. It was the only way he could function. They treat him so bad at this so-called pain clinic! He is not an addict, just needs the meds to function daily! He was on two different opioid meds at large doses just to be able to move. They started cutting him down in 2018, and now all he gets is about 90% less! He sits and stares into nothing and I catch him crying! It breaks my heart that I can’t help him, it’s cruel and unusual punishment! He has to give urine samples to get his one med now. He is in severe pain and they don’t listen. If I could make these so-called doctors have his pain for just an hour, I know they wouldn’t be able to take it! Thank you for letting me vent! Please let us know about this rally we have never heard of it.

38. Hello All,
    I am new to the forum, and I was was wondering about where or if us chronic pain patients can try to get a clinical research going with Methadone. I’ve had the confounded opioids a few years ago. They did not work very well though because the doctor(s) would not give me the correct dosage of any of the crap. I had asked him about trying some Methadone because I had read somewhere that it helps ease pain.

    I have a few discs in my neck that got herniated at work from a falling sign. Some of the doctors, nurses and the court assumed I was a drug abuser. We patients don’t have a drug problem, we have a pain problem.

    I was on some anxiety meds to try and control the pain, but it only helped a little and I had to take a few meds at a time. Since the need of basically making a cocktail of antidepressants along with muscle relaxers, I had some serious inquiries about trying to get us a clinical trial with the Methadone.

    The doctors I had asked about it seemed to ignore the question, and wouldn’t refer me to someone that could either. I think because it may alleviate some problems so much for us and would probably cut into their profits too much, office visits, insurance payouts, and the kickbacks they get from where ever they get them from. I hope everyone finds some relief somewhere and somehow. If anyone would like to share any info they may have regarding Methadone for the pain, I certainly would appreciate it. Everyone’s in my prayers that we can find a way to help each other. Thank you for letting me share.
    Take Care, Deborah

39. I am an ex-Registered Nurse who worked in nursing and medicine for about 40 years total. It would seem that I should have no problem then in getting adequate opioids to treat my chronic pain condition, but everywhere I am met with doctors and pharmacists who follow orders made by ‘drug war’ loving politicians. For 5 years I have had repeated bouts of erysipelas and cellulitis in my left leg, yet cannot get any doctors to do more than supply erratic and miniscule doses that in my days as a nurse would have been routine and mandatory to control pain for these medical conditions. They all claim that they are merely following CDC orders and legal requirements. The pain is at times excruciating and nobody cares anymore. Occasionally they still ask how much pain one has on a scale of 0 to 10, then totally ignore the answer. They also don’t care that my taking nonstop NSAIDs doesn’t work that well. I now have a blood clot and cannot even take NSAIDs because I was put on an anticoagulant. Still they refuse to prescribe an opioid even though I am left with only Tylenol. They would rather that I as a diabetic endanger myself with gargantuan doses of NSAIDs, rather than allow me access to medicines whose main side effect is constipation which is easily relieved by taking some fiber.

    I now distrust and despise doctors, who have twisted, turned, and lied to me at every contact I have with them. The CDC has turned them into a bunch of spineless weasels imo. Actually they have been turned into cops, which is really even yet more sad. Meanwhile I am in severe and constant pain, and it has been very much this way for me for the last 5 years. The US medical system eats up more and more of my time, money, and spirit and fails to treat my medical condition.

40. I live in Arkansas and I go to a pain clinic that was giving me the pain meds I had been on for over 25 years. About a year and a half ago they kept cutting the amounts down and also putting me on meds that do not work! I am down to nowhere near enough pills a day now due to the laws! My back pain, leg and feet pain is awful! The doctor just keeps saying that it’s the law, cannot help you. Now they’re ready to cut me again!

    They don’t give a shit how bad our lives are due to losing my full amount of pain medication and it’s not getting any better, it’s getting worse! We don’t sell our meds and don’t over-take the amount given. Yet we’re treated like we do and worse!

    Thanks for fighting for all of us living in pain 24/7!
    Debby

41. Here comes yet another CPP story similar to the outcome of being cut down on the meds 90% without an explanation. As a patient all we have to hear from our docs are – You have no choice on the matter. So why then do they take our answers in no conciliatory way to help us out? Why bother with all them questions. I would like to add – my pain management doc that I had for 22 years retired last year and was helpful to give me a recommendation letter about my case with all my medical records on a flash drive to a new doc. I’ve had several other problems but things that has not complicated my health in any way as of my initial problem. A botched surgery and then another on top of that one, that was supposed to be an 8 hour reconstruction of the first, where I almost lost my life due to complications. On top later on I lost my gallbladder several years down the road cuz of all the steroid injections. Was never pushed to have another steroid shot after losing the gallbladder to it. Got biliary duct enlargement after that surgery and had several stints put in. During one of them ERCP processing, after cutting my ducts, the lightbulb went out on the “tool” inside of me AND the hospital didn’t carry a backup light bulb, so the biliary juices caused me to end up in the hospital for 7 days with pancreatitis and it was supposed to be an outpatient surgery. Anyway the initial first botched surgery is what has caused this domino effect on my health. After that I’ve had multiple surgeries with little to no help at all.

    So I’ve been shoved around for many tests and whatnot. Found out my bones are 116 years old and I was then 45 (don’t know how they came to that number) so my back has been problematic. Now to the end part of why I like to share this. This new pain management nurse at this new place since my other doc retired takes my blood pressure and all that and asks me every time, how my pain level is on my back. I tell her sorry, but that is not really my problem WHY I’m here. IT IS my severed T11 nerve damage with the follow-up botched reconstruction (how to me feels like I would have had a shark bite taking a chunk out on my right side torso). So I corrected her so that’s all good then right. She didn’t know okay, typing away on the laptop. Later when the doc comes in asking the exact thing about my back. I tell the same to the doc. Why bother asking what my pain level is, and my answers. This is my scenario since September last year. This nurse and doc ask me the same thing every 28 days and I respond. I’m not here for my back!!! It’s crazy. Last time I was just waiting for it. Sure enough the nurse goes again – So tell me how is your pain level on your back now? I couldn’t help but start laughing out loud. The nurse just stopped in the track and said. Ok. Let’s see… the doc will be in shortly. Oh my goodness – I start to wonder what that nurse was typing up. Cuz how could she keep repeating this same mistake since September? We are not taken seriously and the time spent with us they have to by law from insurance companies spend 15 to 30 minutes per patient depending on what you are there for.

    I just hope this whole thing with CDC, DEA, Pharma, etc etc will finally come to light how they’ve used us chronic pain patients to cover up their mistakes they made. One of these days it will come to light. Example, AMA has done good so far questioning the laws and regulations made without any grounds to make us CPP suffer (and the good legit doctors losing their licenses). Of course there’s been several docs who have taken advantage of the situation that didn’t make it any better for us. Hoping that in the near future we can see a change for the better. Bitter and hurting. Stay safe.

42. I’ve been living with pain for 35 years of severe back issues due to motorcycle accidents. Was told at the time non-correctable and as I got older the pain would get worse. It started out tolerable with pain medication. As I got older they increased the amount of medication I needed to take to keep it tolerable. Then all of a sudden they started taking away the level of medication and as they did the pain increased. I went through pain management six months of it. First two months did work. Went back to my primary doctor and was put back on what I was taking but reduced the dose. Then was sent to a different primary doctor and was again forced into pain management four more months. Didn’t work this time I was compatible with it. Almost died. Was given another primary doctor and again put on pain medication, but again reduced the dose. Then out of left field my primary doctor said he will no longer treat me and I needed to find another doctor. Which I haven’t done because of this covid19 virus and the camp fire in California. We heard doctors are not taking new patients. I have a couple of days left of pain medication, then I will be out. Not sure what to do. Been considering life issues, alternatives. Wish the CDC the DEA and PHARMACEUTICALS WOULD JUST UNDERSTAND WE NEED TO BE in less PAIN. THERE IS NO GOLDEN YEARS FOR US IN CHRONIC PAIN 24/7/365. Help!

43. I was in a diving accident while stationed in Naples Italy in 1999. I dislocated C3 “anterior perched facet” and broke both posterior ligaments. I went through three cervical fusion surgeries, two posterior and one anterior, C3-C6. Fortunately I was nineteen years old and in extremely good shape due to being involved in the sport of wrestling from a young age. The sport help me understand the power of perception and that pain is a manageable perception. I went through rehab and got back fit for full duty after one year. I continued to serve another ten years. I deployed to Iraq and Afghanistan, in one of the most arduous jobs in the navy. While I served I had pain episodes that I managed with opiates for short periods of time. Then in 2009 I came down with viral meningitis. I was then medically retired. After recovering from the meningitis I started having extreme bouts with pain and numbness in my arms and face. I started seeing pain management regularly in 2009. I was forced to receive monthly steroid injection in order to get my pain medication. Five years in, I developed a list of issues from long term steroid use. My pain then became debilitating. I was bounced around from one pain doctor to another that did nothing productive to help me. Then finally I found a good doctor through the VA triewest program. I was doing quite well under his care. I was employed as an industrial automation technician doing as well as possible in my opinion.

    I still had a major stressor: I was forced to lie to my employer about what medications I was on. It was that or not be allowed to work. Without the proper analgesic medication I’m not able to sit up in bed on my own. Let alone get ready for work and be productive on the job. Then with little notice some drug enforcement agency came in and shut down my VA-referred provider, forcing me to look for another in a time where nobody is prescribing adequate medication. I felt I had no other choice but to get a spinal cord stimulator implant. Initially I was doing okay with the implant with maybe a 30% to 40% reduction in pain, but it did nothing to improve my mobility or help with breakthrough pain. I’m stuck at home miserable and depressed. I had multiple reprogrammings and multiple visits with the pain doctor that did the implant explaining how I needed more/different help – the medication they put me on is not helping. The only thing I ever got was a blank stare, not even two words, no change in medication, no help after five or six appointments. I have no discs left above and below my fusion and the bone at the base of my skull is breaking down. I’m 42 years old and have no quality of life; my family is helpless watching me suffer.

    What can I do? I can start using illegal street drugs or I can leave the country, take my monthly VA check, and spend it in a foreign country so I can get medication. You know how ridiculous that sounds, but those are my opinions. The only other option I have is to end my life because my constant pain is unbearable. It’s nothing that can be controlled through diet and exercise, or quality of life changes. It’s debilitating and affects every aspect of my body. I wish the doctors in the United States were allowed to practice how they see fit, not how the state or federal government tells them to.

44. My husband is 56 years old he is double above knee amputee. He was recently given a script from an ER doctor for pain meds. A pharmacist at Miejers pharmacy in Champaign IL who is short with short dark brown hair refused to fill. The pharmacist claimed it was against his moral principles. Why does this young man have a right to decide what medication my husband who is very ill and suffering horribly gets to take? He is not a doctor!!! Could someone please tell me where I can report him or what actions I can take. Thanks!

45. Work accident crushed L5-S1, box build from pelvis to stabilize spine and correct spinal cord damage at site. Pain in 1980 started. Head on car accident from bad driver jarred spine and pain increased. Severe concussion caused memory and muscular problems. I have less than 20% discs in back causing instability, spasms, pinched nerves causing sharp stinging.

    I have had psych evaluations for addiction and mental stability, passed. My PM doctor now took 1.5 yrs to accept me, and meds have been the same since 2013 or so. In February 2020 the doctor started reducing meds for pain which makes walking and self care harder. I walk with a cane – 50 steps is a marathon. I feel my doctor is being pressured and threatened to stop opioid dispensing.

    I try to understand but my pain level is very high, and I dread going to the ER as they treat me as drug seeking. Three years ago I thought my back had ruptured a disc, for 3 weeks I lay on the floor in pain. I went to the ER and my BP was sky-high. Got a pain shot, then every other day I went back. Fifth trip a doctor saw me vomiting in a bucket in pain, and ordered tests, and in one hour I had emergency gallbladder surgery. Recovery was hard as my body was stressed too long and it almost ruptured. Hospital ER treats me better, but it’s been 9 months since I have gone to ER.

    What am I to do without pain meds if I can’t stand that much pain? My doctor fears the powers that be could take away his license to practice. He is compassionate but to lose his license and livelihood …

46. I was diagnosed with Degenerative Disc Disease 14 years ago then with Diabetes 11 years ago. I struggled for many years getting doctors to listen enough to help me. 10 years ago I found a pain management doctor that tried everything, but putting me on pain medication was the only thing that helped, and it barely allowed me to work. I spent 7 years on intermittent FMLS before finally having to have a spinal fusion. Two years later my insurance changed and I was forced to get new doctors. After having severe nerve damage, muscle spasms, vibrations throughout my body and extreme pain in my back, legs and feet this doctor decided that after 10 years of responsibly taking the same medications I can no longer have them because they don’t prescribe them unless you’re a cancer patient. Now I’m suffering and my quality of life is much of nothing. I’m trying everything just to survive my everyday life. My struggle is real and I personally feel defeated.

47. I started having pain 12 years ago. I have had 4 C-sections, an abdominal hysterectomy and an appendectomy. I have a bunch of scar tissue that causes severe pain. I was diagnosed with fibromyalgia 3 years ago even though I knew I had it much longer than that. I was recently diagnosed with degenerative disc disease in my whole spine with bulging discs in my cervical spine. I suffer from chronic migraines that nothing has helped. I have bad carpal tunnel syndrome. I wake up in excruciating pain every single day. I scream and cry for the first hour or so because it’s that bad. I cant be touched, my clothes even hurt me. I tried getting into pain management 2 years ago. I waited 6 months to see them. They told me absolutely no pain meds. Even though I was given a week’s worth by my primary doctor that I made last 6 months. It was the only thing that helped cut my pain in half. I was scheduled for injections and my insurance denied it. They wouldn’t see me again.

    I moved to Ohio. I’ve been here a year. I fell down the stairs in October of last year. I was sent home with a week’s worth of pain meds, which I still have 2 because I took them when I was in so much pain I wanted to die. This is the 2nd time opioids saved my life. Now here I am, 8 months later. I’ve been trying to get into pain management for 3 of those months. They keep pushing it out further and further. But what does it matter because I know they are just going to blow me off … it makes me not want to live knowing I’ll be suffering every single day of my life because some damn doctors make these serious life choices for us.

    There is something that can help me but I can’t have it. I never got addicted. I paced myself and it still wasn’t good enough. No human being should have to live this way. I have 4 kids. They take care of me. I hate that they have to. I could have a decent life if I was on regular pain meds but people who abused it screwed it up for us all. I pray every day for the pain to go away, or a doctor to help me.

48. I am currently 35 my back dropped off at 30. I am in constant pain my doctors don’t care they say sorry we would need to send you a methadone clinic to be treated like an addict and you don’t want that speech. That said I am tempted to see what a clinic would do for me if they would treat my pain consistently. But I fear they would try to remove me from meds.

49. I have been a pain patient for 4 years. Doctors have no compassion because they aren’t allowed to. That’s because of the laws and all the incorrect media disinformation as to what the problem really is. They gave us marijuana which is sometimes helpful but want to use the old paranoia of drugs and the drug war mentality from pot to opioids. I once agreed with that mentality that opioids were so dangerous that it should be eliminated, until I found out firsthand what always being in pain and taking the medication is like. It’s not what you think and doctors need to realize that no matter the training they won’t know what it’s like without personally experiencing it themselves. That said they all can’t have that understanding but the laws make it impossible for them to make individualized judgments. So I get the same treatment as the next guy. However ANY doctor will say it is a individualized situation with pain meds.

    So why are the laws in direct conflict with reality? Medical boards and the federal system just protect the industry of pain doctors and not the patients. They treat us as expendable and every time they make someone kill themselves it just backs up the dangerousness of it. They actually make the use more dangerous than it would be if doctors could prescribe the way they want. Quit killing people in chronic pain, and quit making it harder to get the meds I need to live and not be forced to get it from the street. It’s being made even more dangerous from because of the add ons to get it.

    As you can see if you read about it this drug is powerful and it needs some supervision but nothing as close as what they try to do now. It’s basically a police state mentality that has taken this industry over just like a lot of other things. The police aren’t doctors and should let doctors be doctors and patients be patients. Not you’re the junkie and I’m your very conditional supplier who really can’t help you because I can’t give you enough of what you need without some bell going off on someone’s computer that such and such individual just exceeded what the average person needs. What a waste of money and resources. Hopefully they will be defunded or woken up to what medicine in a free country looks like. Absolutely one of the biggest problems today. Maybe someone in the media will notice and maybe read what they are reporting on and include something for the SUFFERING PATIENTS WITH NO VOICE LIKE ME!

    I think half of all patients in the military that kill themselves and it’s a lot, are in some sort of opioid treatment program. Probably an injury they got fighting for our freedom. How do you think that person feels? Needless pain so some politician can score points on the graves of sick people, cool huh? They need to get this run correctly before everyone is a real junkie and then you will have lost the battle of what you are trying to do. It’s better they get it from a doctor but not if they don’t give you enough to get out of bed or off the floor. In addition they aren’t even trained in the stuff they are treating. That’s dangerous as well.

    Good luck to me and the rest of us! To bad it’s hard to communicate while in severe pain. That’s the part being taken advantage of. The medically silenced. The ones who can’t communicate or fight back because of pain. Imagine what that feels like just for one minute, then multiply by 60 then by 24 and that by years, that’s what it feels like every day! Long term pain is more dangerous to your body than opioids when not greatly overused and eventually will kill you from the stress. Stop medical oppression and licensed murder now if you have any compassion. Join a group, send letters, talk to the media, and make sure they get the facts correct because very few do.

50. This must be the 10th letter I’ve written about my story, so one more I will add. 2005 had a Full Neck Fusion, which left me with no discs in my neck and ended up with severe nerve damage, and arthritis. The pain is a burning sensation 24/7 with no let-up. I can’t look up, down or side to side, and when I do turn my head I hear a click, click and my neck moves like a robot and is so stiff. Found a great pain management doctor for 15 years, she was excellent in the beginning, then the opioids came into play. Was forced to be tampered down to practically nothing. 3 long years of weening down and with no pain relief. I am house ridden, can’t drive, clean much, don’t sleep and I walk around like I am 90. The law took my life away and now I am being tortured by pain 24/7. Please someone hear our cries of pain and be humane. I didn’t ask for this and I am not a criminal looking to get high, I am looking to live with little to no pain. Help me, help us.