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  • CDC Reiterates Limits of Opioid Prescribing Guideline

    The US Centers for Disease Control and Prevention (CDC) wants to make it clear: its guideline on the use of opioids for the treatment of chronic pain is not intended to apply to pain related to cancer treatment, palliative care, or end-of-life care. The clarification is consistent with messaging used by APTA in its #ChoosePT opioid awareness campaign and its MoveForwardPT.com consumer-focused website.

    In a February 28, 2019, letter from CDC Chief Medical Officer Deborah Dowell, MD, MPH, the agency restates its intentions around the prescribing guideline, issued in 2016, that recommends nonopioid approaches including physical therapy as a preferred first-line treatment for some—but not all—types of chronic pain.

    "The Guideline was developed to provide recommendations for primary care physicians who prescribe opioids for chronic pain outside of active cancer treatment, palliative care, and end-of-life care," Dowell writes. "Because of the unique therapeutic goals, and balance of risks and benefits with opioid therapy in such care, clinical practice guidelines specific to cancer treatment, palliative care, and end-of-life care should be used to guide treatment and reimbursement decisions regarding use of opioids as part of pain control in these circumstances."

    The letter was written in response to concerns voiced by the National Comprehensive Care Network, the American Society of Clinical Oncology, and the American Society of Hematology that some payers were balking on paying for opioid prescriptions in circumstances outside the scope of the CDC guidelines.

    Even without the clarification, the original guideline is explicit in its intent, which appears in the first sentence of the document and again when the CDC describes the scope of the guideline and intended audience. Similarly, APTA makes it clear that doctor-prescribed opioids are appropriate in some cases and has included that message in both its #ChoosePT webpage and its public service announcement related to the opioid crisis.

    "The Guideline is not intended to deny any patients who suffer with chronic pain from opioid therapy as an option for pain management," Dowell writes. "Rather, the Guideline is intended to ensure that clinicians and patients consider all safe and effective treatment options."

    Comments

    • Chronic pain people like myself are suffering needlessly because of those whom choose to abuse medication. It should be doctors call,not the CDC or govt

      Posted by B.smith on 4/12/2019 6:24 PM

    • * 7 back operations before 20. * Altered lifestyle (pain) for 40 thereafter. * 3 more back operations between age 45 - 49. * One operation resulted in slashed spinal canal and massive nerve damage. * Lived with increased draining chronic pain for another 5 years while experimenting with numerous treatments , did not want pain medications. * As last resort I met with doctor and finally succumbed to pain medication . * Started with 150 mgs combination of OxyContin/OxyCodone, cut to 120 mgs and then to 90 mgs , initiated by myself. * Then the decision was made for my doctor to cut to a total of 60 mg. Surgeries were discussed but not an option due to concern of the spinal canal mishap and my doubts . * I live in pain ...... * Leads me to wonder if doctors have a revised and “ handcuffed “ Hippocratic Oath , paraphrased below: “ to use treatment to help the sick based on ability and judgement ... ( someone else’s judgement) . “abstain from wrongdoing or harm ( to myself ) . * I am not unique with this ordeal .

      Posted by C. David Garvin on 4/15/2019 5:58 PM

    • Those guidlines were enforced as if they were laws. Some states went above and beyond the CDCs guidelines, while some physicians opted out of prescribing at all. This left pain patients without any recourse at all. At the same time the continuous malignant language in mass media, and marketing sites liek this one, stigmatized, blamed and conflated all pain patients with craven drug addicts. Physical Therapists as health professionals, chose to use the so called opioid epidemic to market their services, by misleading and cherry picking information, in order to elevate their business, and increase profits. The tone of this article suggests they are utterly unaware of what their patients are dealing with. PT works fine for some conditions, especially post surgical, or for rehabilitation after an accident. There is virtually no credible research on the various pain conditions, and in some cases Physical Therapy can be dangerous or lead to further injury. Of course no research has been done on those issues. Another area where Physical Therapy has not been studied, is when they postpone a surgery a patient needs. Patients who are vulnerable, and desperate, turn to Physical Therapy to avoid surgery. In many cases all that they did was subject themselves to a year or more of appointments, frustration, and pain, and they still needed the surgery. They did not have access to real medical advice. No research was done on this postponement, and further debilitation, due to trying physical therapy for a condition that can only be made worse. Desperate pain patients are reaching out on these sites. They were told by industry funded advocacy groups to "Tell their story." These patients should not have to plead their cases on sites like this or the CDC Website. Most are suffering horribly, like the one who commented above. Many of these pain patients had multiple surgeries, some had infections and amputations. These are among the people who have been denied pain treatment, due to the misreporting of science, facts, and the advertising done by groups like this. There is no evidence that physical therapists can cure the ongoing intractable pain, these patients endure day in and day out. They start to sound insane, because they don't sleep. Their sleep is interrupted by their intractable chronic pain. They endure years of this, while they are ignored by sites like this. No amount of physical therapy, acupuncture, marijuana or thinking good thoughts can relieve their pain. Yet a health provider is using their distress to market their services. There is no mention of the criticisms of the CDC guidelines here, or the damage they have done. Clearly Physical Therapists are unaware that some of their patients were denied pain care, a clear diagnosis, or were forced to undergo physical therapy, even though it would not cure their pain or even make it manageable. We have a conspiracy of silence here, since the misery of these discarded patients can be profitable.

      Posted by Kathy Cooper on 4/16/2019 1:11 PM

    • You state, "The Guideline is not intended to deny any patients who suffer with chronic pain from opioid therapy as an option for pain management." Well, that is exactly what your guideline did! Some of the statistics on your website are also not accurate. The numbers of people dying are not the same for people who take prescribed opiates vs heroin laced with Fentanyl and not prescribed Fentanyl, Fentanyl that is man made. The total numbers of people dying should be separated by: prescription opioids/ Heroin with Fentanyl. There is a big difference. Chronic pain patients should matter and it seems they don't. My grandfather who worked hard all his life was on opiod medication for over 15 years. He didn't abuse it, he took it as prescribed and it was not anywhere near 90 MME, that dose wouldn't have touched his pain. He just retired in 2017 and he was enjoying life and being outside working on his yard, planting flowers, trimming the bushes, he even added a chair for himself to sit in the back of the yard under the trees. He was 73 and had alot of life left in him, until his doctor was to scared and feared he'd lose his license if he kept prescribing my grandfather his opioid medication. His dose was also not anywhere near 90MME. Everybody handles pain differently, people are built differently, there should not an across the board amount to prescribe, especially that low for chronic pain patients that have been taking their medication at a higher dose for years, which was another reason his doctor was scared, because the amount he was prescribing was over 90MME. He started to wean my grandpa off of his medication and it was so heart breaking to watch him just start to deteriorate. He couldn't walk on his own anymore, he needed a walker, he started sitting in his chair to watch TV, which was not the norm for him. The color started to drain from his face, he started to look pale, like a chalky pale, he had very dark bags under his eyes and he just looked awful and he was no longer my grandpa that was full of life and loved to make people laugh. He begged his pain doctor to please help him get out of the debilitating pain he was in and to give him his medications back. The doctor had tears in his eyes also, because he has treated my grandpa for over 20 years. His reply to my grandpa was that he was so very sorry he couldn't risk losing his license. My grandfather was no longer the same person he once was, it was so hard for our family to watch him continue to go downhill. My grandma ran to the store on Sunday afternoon as she always did and when she got back home my grandpa was not in his chair, she went to go find him and calling his name, she opened the door to their bedroom and there she found my grandpa on their bed, no longer alive. He had shot himself. Our whole family took it hard and to see my grandma hurt so badly. This happened all because of the guidelines that the CDC put in place. He worked so hard his whole life and didn't even get to enjoy his retirement. This is happening to chronic pain patients all across the US and nothing is being done about it. It seems to me that saving the lives of the people that chose to take the medication the incorrect way and end up dying are more important than the people that depend on the opioid medication to live their lives and be a productive member of society and that is so very sad. My grandfather taking his life could have been prevented if the CDC and government thought of everyone when coming up with their guidelines and rules. The FDA, the DEA, the AMA have all requested the guidelines be changed to address chronic pain patients and the doctors, so that more chronic pain patients don't have to suffer the way my grandpa did. I read the article above and thats all that was written about the issue and I really hope that was just a start to make it a better. Please look into making it public that the 90mme guidelines are not meant for chronic pain patients and let the doctors treat their patients. If you saw this from my side, you would see the opioid medication works when taken correctly!

      Posted by N. Lanier on 4/17/2019 5:37 AM

    • I have said the same thing many times. I too live in severe chronic pain and have been reduced to a point that I don't sleep or want to eat so my weight has dropped to less than 100 pounds. I followed the instructions on my bottle religiously because I needed them to live a somewhat normal life. It is sad some choose to abuse but why are we punished for it. Everything you said is absolutely true...I am so sorry for your loss, a needless loss. The numbers are skewed and docs know who does and doesn't abuse we are monitored like children. WE ARE JUST AS IMPORTANT as those who choose to abuse or abuse street drugs...where is the compassion for us..the ones who can't be "fixed"?

      Posted by Carol Cassel on 4/23/2019 1:04 AM

    • I too suffer from chronic pain and have been taken down to less than 90 mme.I suffer from spina bifida, a split spinal cord, a tethered spinal cord and degenerative disc disease. Not to mention the nerve damage that was done when I contracted meningitis after my 2nd back surgery. I have pulmonary fibrosis and rheumatoid arthritis. I have done PT, trigger point injections,RFA, accupuncture, chiropractor,and numerous other therapies to no avail. I used to be able to take care of my small ranch with miniature horses and enjoyed going to local fun horse shows and taking minis to nursing homes and other public and private events. I wasnt pain free but I was able to have some quality of life and was able to function. Now I have a hard time getting out of bed. I have had to ask for volunteers to help me take care of the animals until I can get them sold.The horses were what kept me going and getting out of bed everyday. But now I am faced with losing the things I love because Doctors are more worried about their license than they are about the well being of their patients.I have never abused my meds. I have been tested often to be sure and the results are consistant. Why are the ones who really NEED it being punished? You are worried about saving their lives but what about ours? You dont know how my times I go to bed in tears and just wish that I wont wake up because I know what the day ahead is going to be like. Besides being tired from lack of sleep I know my day will be full of pain. PLEASE will someone advocate for us? I just dont know how much longer I can deal with this

      Posted by Sherrie McIntosh on 4/25/2019 6:14 AM

    • I am a Combat Medically Retired Navy Veteran after 5 Spinal Surgeries and a Muscle Flap to cover my back of entire neck on a 4 month vacuum seal pump and my doctor Erb from Sarasota FL just came in with a sheet with a huge printed number 545 and said without any discussion lowered my Rx Fentanyl Patch and said anybody over 500 is likely to commit Suicide and left. At my next appt with LPN I asked how much my total level dropped, without a thought said 15 points that means now CDC 530. I asked if this makes any difference, she said no but Dr Erb can include my numbers in his report. I asked if anybody saw the 10, 20, and 30 year studies on Opioids that show people between 200 and 350 are 100x more likely to switch to the illlegal Opioids from China have fake Fentanyl and other garbage inside. I asked for a meeting with Erb and for 1.5 months evaded by Kennedy White Orthopedics and as a presidential awarded veteran and a graduate of Ringling School of Art and Design with BFA in 2007. So many veteran Suicides for doctors that don’t read the entire report but complain they can’t afford their 4th house. With all Navy, VA and Social Security I get $2500 a month the SSA judge was so pissed off at all my doctors and VA refusal to send neither my VA medical records nor my VOCREHAB records my case lasted 5 minutes.

      Posted by Stacey.Trent Gruver on 4/28/2019 1:42 AM

    • I am 65 yrs old been on opioids for 20 years never had a problem worked with back issues from work related accidents finally it was to much the port was no place for me had to stop but remained active,now I am on a very low dose and live in bed pain is no fun but people with guns have legislation to keep them or the hands of misusers why do I have to suffer and people with guns can keep them there has to be a better compromise is not fair

      Posted by Robert Melendez on 5/2/2019 7:39 AM

    • This clarification is completely useless to me today. I have required a low dose of Norco for decades due to chronic severe pain from multple wrecks and accidents. I have been put thru HELL for two years due to doctors afraid of prescribing it. I went thru all the alternative "solutions" with no positive results, just unbearable pain and 3 hours of sleep a night. They finally decided I really did need it (decades of previous use with no abuse didn't apply). Then I moved to Arizona, and being told I cant have one pill a day to make life less horrible. I am looking for attorneys who will file a class action lawsuit against everyone responsible for this horrendous torture being forced upon chronic pain victums like myself. References appreciated.

      Posted by Jim Lowndes on 5/3/2019 10:03 PM

    • Im sitting here bawling as I read these terrible stories of not perfect but manageable lives that have been torn apart! They are correct the bad ones that a use are having millions of dollars in funding thrown at them and EVERYONE is rushing to contain the problem. And here are all of the previously stable (as much as possible) lives. I am having to retire at 56 years old as my meds were cut in half. I feel lucky that my doc hung in with me but I still cant do my life now with the reduced meds ive lost 25 lbs in 3 months dont sleep well, cant take care of my family, my love in life , my dogs, most other thing I used to enjoy so much! Hey sex used to be in there too° lol. We are suffering and every body wants to send us to therapy . We ve been there done that. After multiple surgeries sometimes you Re just gonna have alot of pinched nerves and PAIN! IT MAKES ONE CRAZY!! im so sorry about your Grandpa! (Pre vious letter in chaIn) that broke my heart I cannot go yet cause i am a caregiver for my 83 yrr old mom. I cant leave her. .Someone needs to hp us we are dying out here!!

      Posted by Cheri on 5/4/2019 1:47 PM

    • Whether the CDC meant their guidelines to used as a guide, and only a guide, it wasn't. Even if they didn't know how bad it would get, they could have stepped in to change it. Considering the influx of complaints by physicians and patients, it would have been obvious that the "opioid crisis" had become a pain crisis. Early on in response to an email, I was told that the subject would be revisited in a year. I can tell you (or maybe I don't have to), a year is a long long time to people in serious chronic pain. From what I have seen, although restrictions are going to be lowered on treatment for opioid misuse disorder, the restriction lift won't cover patients who have relied on opioids for over a decade. Last year was hell. On a taper, during that year my doses of round the clock opioids were dropped to 1/10th of what I had been on. My prescription for a benzodiazepine was taken down then discontinued. Chronic pain can have breakthrough episodes, leaving a patient with anxiety and fear while waiting for the next one. I was lucky in that my Dr. tapered instead of kicking me to the curb, which would probably been fatal. Bloody vomit multiple times a day, paranoia, hallucinations, insomnia........... These occurred for a year. Some patients committed suicide. The CDC knew what was going on, because I told them. Every month, sometimes more, I email them, to remind them that what their guidelines are doing is damaging patients both physically and mentally. I've had only one Dr. that deals with my pain at a pain management clinic. He always follows the rules. Visits several times a year, a contract to ensure that I cannot accept an opioid prescription or benzo without my Dr.s approval. Bloodwork, saliva or urine screens and pill counts with only a 24 hour notice. We discussed treatment every time I went in regarding changes in dose, drug, adding, subtracting or rotating medications. I followed my Dr.s orders retrying non opioid medications just in case. No dice. He implanted a peripheral nerve stimulator that helped in combination with my medications. Opioids were not the first choice having been put on various treatments, both pharmaceutical and non pharmaceutical extending back over the preceding twenty years. Opioids were a last ditch. Without them, I would have had to go on disability fifteen years ago. Instead, I was able to continue working. The whole opioid situation is filled with lies by omission, throwing the blame on other offices and state governors who in turn, blame the CDC. Even if the CDC threw out the guidelines it wouldn't bring back lost time or change the suffering of chronic pain patients. Quite frankly, I would be very concerned that sometime later, they again made restrictive guidelines and there is no way I am going through last year again. At present, I spend my day and night in a dark room with earplugs in, knowing that activity will trigger more pain. Chronic pain patients are the ones who suffer the most. Patients, their families and their Dr. all pay the price. Addicts have to spend more to get their drugs. In fact, they are treated better than legitimate patients. Its outrageous but I guess we are not credible and make up pain so we can get high. Patients taking opioids do not get high. The only "high" comes from removal of constant pain.

      Posted by Alexander Wolf on 5/5/2019 7:01 AM

    • Great. Unless you live in my area, where every Doctor with chronic pain patients stopped writing prescriptions for pain medications, and, thanks to the initial CDC guidelines, which were backed up my Doctors being threatened and intimidated with loss of license regardless of the patients needs or responsible use of the medications, etc., They have been so reprogrammed, they are opting to stick with the ban on anything stronger than Ibuprofen So as good as this news is, including the fact that most patients prescribed opioid pain medications do not abuse them, and the majority of opioid related death stats are from Heroin and Fentanyl. In fact, very few (if any) street level busts involve these pills, and the ones that do are from misdirection and bulk, not pain patients. Until more Doctors and reputable voices speak up, and Doctors are assured they can once again treat their patients with strict monitoring, nothing will change.

      Posted by Chad Wurthing on 5/6/2019 8:41 PM

    • Most of us in pain management are intractable pain patients but we are still not being properly included in the reiteration of the guidelines. Once again hard working people that are not wanting to give in to disability are still being left out. Opiates are part of our DNA it's a God Given right so people can still work and rest ect but our hopes of getting our regimen back and keep in mind non of us where asking for increase in these medications and most of are responsible patients. Please CDC/FDA bring this new reiteration of guidelines to national T.V. just as done in 2016 so we can move with our lives because this has confused everyone so bad and we need your help so bad to come on national television and explain that pain management patients that are excellent proven records that they receive the regimens as they did before 2016. Please it's the only way our great Medical care Doctors will then be able to help us.

      Posted by Vincent Morraele on 5/7/2019 10:29 PM

    • Maby if I and or all pain patients write letters to that evil, heartless, greedy monster of a president trump and the evil lying government and tell trump that i and as many pain patients there is suffering will not and never be voting for him come election time, all the millions of us, then I bet he would get his evil, lying, cruel, inhumane tortureing head out of his evil as_ then. With that many voting against him he would never be president again, EVER. Either way I will, and I dispise him and will not be voting for him ever. He and the government are lying, tortureing evil monsters along with most doctors for not standing up for us. THEY ALL ARE EVIL MONSTERS

      Posted by Shane on 5/9/2019 1:40 PM

    • I read these comments and it breaks my heart. I too am a chronic pain patient. I am 75 years old my medicine has been cut in half so far because the pharmacies refuse to fill unless we are being reduced. I can no longer do anything but lie in bed and watch T. V. I love my garden & sitting on the lake fishing. My quality of life is reduced to nothing. I don't have any reason to live anymore. I can't watch my grandkids, I can't cook dinner, there is no reason to go on this way.

      Posted by Paula Tower on 5/9/2019 8:46 PM

    • As I read these stories, I know that I am far from alone. I was reduced TWICE by my doctor, even tho he absolutely hated to do it. He was being FORCED to reduce ALL of his patients, regardless of their history, condition or symptoms. I was already in the process of a medical retirement from USPS, but these REDUCTIONS weren't because I was suddenly miraculously improved. It's because now we have legislators and government officials making healthcare decisions without a medical degree or any knowledge of what is appropriate treatment for a chronic pain patient. I lost three months of the last five months because I was physically unable to move. I have Fibromyalgia, Osteoarthritis, and damage to my cervical vertebrae with pinched nerves and joint degeneration. I had my left knee replacement in 2013, and I need to get the other side done but it's not possible until the insanity comes to a complete end. There's absolutely no way I'm going through that again and with less meds!! I've increased ALL of my other medications in a useless attempt to mitigate some of my symptoms. I've been imprisoned inside of my own body and there's no escape. The average street junkie addict is being treated better than the pain patients who see their doctors routinely, with drug screens, monitoring and documentation of every aspect of their care. Ambulances now carry Narcan to administer to a person who has overdosed, but for the regular citizens who have ALWAYS been responsible for their medications receive nothing but pain. It's a full on ASSAULT on the PEOPLE by our own government. Two years ago I was suddenly widowed. Because my husband had been taking Oxycodone and Fentanyl, his was labeled as "a toxic interaction". He had been taking the SAME medication at the SAME dose for over three years. What actually happened was that his liver function was impaired by the frequent infections and massive amounts of antibiotics and other drugs that he was prescribed for the infections. It led to a fatal sleep apnea episode. Either the Medical Examiner was incompetent, or he was told to list ANY death where opiates were found (regardless of the amount even if it's too low to be related to the death) as an opiate related death. The numbers are GROSSLY INFLATED and MANIPULATED that actual correct statistics are unavailable. Somehow there are MORE drug related deaths than the total deaths combined. The government and legislators who have started this epidemic of fear and mass hysteria should be required to compensate the VICTIMS or their FAMILIES for the unwarranted inhumane ASSAULTS OF AMERICAN CITIZENS. The amount of responsibility for this catastrophe is solely on the very agencies that are SUPPOSED to be protecting them instead. They have now issued a "clarification" of their guidelines. It's far too little and UNCONSCIONABLY too LATE. So now the question of whether or not there will be a course correction, or just to let the deliberate harm and injury stand, is being asked. Silently. Because the people are suffering needlessly and unable to speak for themselves.

      Posted by Elizabeth Ott on 5/9/2019 11:45 PM

    • These damn politicians are the reason people with chronic pain are suffering. There's a place in hell for these politicians responsible for suicides due to fact patients can no longer endure physical pain.

      Posted by Michael Viar on 5/12/2019 3:55 PM

    • I started having chronic pain in 2016 . I went to the Dr was told to do PT did that had 13 ESI s in 6 month had ACDF in Oct of 2018 after loosing my left arm .All I needed was pain medicine but they made me suffer.I went to a Dr at my clinic begging for something for pain my blood pressure was unusually high because of pain and the Dr just laughed and said oh your in a lot of pain . Refused to treat my pain but offered to mail me a free cane .I just left the hospital because I wanted to die because of the pain .I am on a methadone program so I can get out of bed and take a shower .I was left in so much daily never ending pain because of the CDC guidelines .The surgery should of been done right away but I was there New Guinea pig .I am grateful to be out of that pain but I feel guilty because of the new guidelines but I couldn't wait .Two years in bed unable to shower cook drive my car .This was tourcher .

      Posted by Lisa D on 5/13/2019 8:15 AM

    • I have been on pain meds for years never did anything wrong.My pain keeps getting worse because I think the medician has been cutdown so much and manufacturers put things in it that verys from one manufacturer to the other.I also think that it sould be put in categories people die from perscribed medication.Insted you are wanting people to kill themself from so much pain.No one can take the pain day in and day out.Please do somthing before its to late for alot of people that has no life.

      Posted by Pam motl on 5/13/2019 1:56 PM

    • I am so very sorry for all of you and honestly for myself. I got hurt 21yrs ago at age 28 working at Carlisle Army War College and had 2 spine surgeries and multiple surgeries from complications. My pain doctor had me on a 50mcg Fentanyl patch and 12mg Dilaudid every 4 hrs. One day 15 months ago I walked into my monthly appt for 5 joint injections and my prescriptions. Every prescription read do not fill until 31 days after the last script and it had been like that for 17yrs. But on that faithful day I was handed a letter telling me he was retiring because his hands had been tied and he was unable to help his patients. We were all left scrambling to find anyone who would prescribe anything. That left us with quackes that don't know or care how to help us. Rite Aid pharmacy had started over a year before refusing to fill his prescriptions which is bullshit for a pharmacy to be allowed to refuse to fill a legal script. I now have been reduced to 4mg of Dilaudid every 6hrs and a 25 mcg Fentanyl patch. I am forced to see a nurse practioner who always says right to my face she doesn't like me and will not prescribe anything she will lose her license over. I lost my script for Valuim for panic attacks and she told me last month she will stop prescrbing my muscle relaxers. She flat out refused to prescribe any anti-inflammatory which I received 1inj of 30mg Toradol a month from previous doctor. She doesn't like me because I question her and her methods. Since I refuse to smoke marijuana, have plasma rich injections or stem cell therapy which non of it is covered by insurance we all pay for because it is considered experiamental! I live in PA and if you choose to use medical marijuana which you can not get high from in PA you can not own or carry a gun. I live in a rural area and have the right to defend myself at least until they take that away too! People like our lovely President and other government officials have never experienced chronic pain or had a loved one suffer from the laws they have inacted or they would change their tune quickly. They are all a bunch of privilaged assholes which the rules of deciancey do not apply to! I can't even get injections placed in the same areas anymore. Someone PLEASE tell all of us what we are to be doing to be advocates for ourselves! I agree with the person who wrote about a class action suit which we should be able to lay at the feet of all who are responsible for the mess! I hope a damn good lawyer finds this website long before we are all forced to kill ourselves or become illegal drug users to survive each day. We would be better treated if we were in jail. Excuse me we are all in a jail of living hell and who will it be who finally does something. I now at the age of 49 haven't worked for 10yrs straight and am forced to live in a small 3 room apartment at a low income facility for the elderly and disabled living facility! I try to take care of my Disabled Veteran Father and myself but how am I to do this? My Mother died 3 1/2yrs ago and my retired LTC Sister lives in Florida and my father and I were spending Christmases with her and her husband since Mom died but this past year we couldn't because I couldn't drive there. We can't fly because when taking off and landing I experience extreme pressure in my spine not to mention sitting long enough for the plane to get there. At least in the car I could get out when needed. PLEASE if anyone finds a solution post it for all to see. May all of us survive and good luck to all.

      Posted by Cheryl Cook on 5/14/2019 4:54 AM

    • I’ve read hundreds of these comments! What I haven’t read is one comment from a Pain Management physician or someone who helped pass these cruel and questionable laws! Not one!!! I was warned by the Medical board in my state that if I filed a Complaint against a dr. or a clinic that I would probably be dropped as a patient and labeled a problem patient so other clinics would shun me. The medical board also said that the level of opioids prescribed was a guideline-not the law!!! Please call your state’s medical board and get a copy of the guidelines for your state! Dr.s are just worried about losing their licenses which is almost impossible for prescribing what a patient needs!!! Also, the opioid crisis is illegal fentynl and heroin and wasn’t meant for established chronic pain patients. So-be informed! We need to know and act upon the real truth and the law. Ask about your and your DR’s rights! I’m still waiting to hear from that dr. Or lawmaker. What say you?!

      Posted by Paula Kelch on 5/14/2019 2:13 PM

    • I have had trigeminal neuralgia, a severe debilitating and in many cases, such as mine, disabling facial pain disorder. I have been on opioids for over 40 years,my pain starting in 1976. The first script ordered by my doc was 8 ounces of tincture of opium. I went to 2 pharmacies, the first didnt carry it and the second filled it, no questions asked. I have since been on morphine, methadone, demerol, percoset, hydrocodone. I have chosen to stay on codeine for the past maybe 30 years. When the pain was very very bad, I was taking 14 grains (pills) of codeine a day, the normal dosage 1 every 4 - 6 hours. Like many patients anytime I was in hospital I would save all the pills I wasn't taken while an inpatient so I had enough to allow for that high a dosage. This was before the "opioid crisis" but you still were only allowed so many per prescription and to be filled only a specific time ranges. (I will return to this in a minute) After 40 years of taking the codeine this month was first time my insurance company refused to pay for the script, as they had always done. I have reduced greatly what I take so maybe now get a script filled once every 6 months for 100 pills. This is a low number of pills and usage and yet suddenly I have to fight to get the prescription filled. I was told they were requiring "authorization: for the prescription. How does that make sense, Obviously by writing for the drug the doctor was authorizing the script. Luckily I was not in need of the med as it took 2 weeks before either the doc called back/insurance changed their mind. Ridiculousness. And heaven forbid I took higher amounts and needed it ofr merely getting out ofbed in themorning. As to my other point re the 14 grains a day. I was taking that for 8 years. I had had a number of neurosrgeries that didnt work and then a dorsal column stimulator implant took away 85% of the pain. Trigeminal neuralgia makes touch to the affected area of the face horrendously painful (in my case so much that I had to have my face washed under general anaesthesia every 3 months for about 4 years to clean off the growth of dirt as a result of being unable to wash the involved area) 3 months after the implant, which had not yet started working I got in the shower and some water got on the left side of my face (the affected area) and I had NO PAIN!! I immediately s topped the codeine with no side effects whatsoever. This of course is anecdotal but studies repeatedly confirm that those of us who take opioids for chronic pain disorders rarely get addicted. Those that do usually have an addiction history, or family history of addiction. Some may become 'dependent" but that is very different from addiction. This "crisis" has to stop being taken out on those who live with daily chronic pain. Opioids let some actually help the country by participating in the economy via work, for others it allows them to get out of bed in the morning what they couldn't/can't do without the opioids they are prescribed. Let the CDC show they mean what they say by writing it loud and clear: chronic pain patients who require opioid medication must be allowed to continue letting their doctors decide, without fear of retaliation, what and how much opioid medication their patients may or may not require.

      Posted by carol levy -> DKVa@F on 5/14/2019 6:03 PM

    • Yes, this needs to stopped!! when were we fixed?? Only God can correct the failed surgery, Chronic pain is a real thing not made up. You can't look at a person and judge them by their cover!! my spouse has Chronic pain and Anxiety both very serve going on 20 years +. followed all the Dr.'s orders, always pass the Drug test etc. The Dr. continues to cut meds. and says you can't be treated for both Chronic pain and Anxiety you must decide on (1) due to the CDC. He had a stroke due to the rapid cut in Pain meds. Been in the hospital for 23 days. Dr. at the hospital said the Dr.s should stop and stand up for him, he is a human and this is unhuman punishment!!! Were is our legal rights??? we are not robots!!! the CDC is playing with fire on this. Wait until someone or many flip out, what will they do then?? why hasn't the CDC mailed those with Chronic pain and Anxiety anything, they have our records. We have rights and should be allowed to have our mental health and some relief from pain with meds. this is #1 priority!!! *** chronic pain patients who require opioid medication must be allowed to continue receiving their meds. without fear of retaliation, what and how much opioid medication they need/require should be up to the person and their health care provider.

      Posted by Debbie on 5/15/2019 11:39 AM

    • I wrote President Trump a letter. I called him the most Inhumane President of all time. I told him my condition is similar to a cancer and AIDS patient. I have Severe Rheumatoid Arthritis that progression rate is 400 percent a year. Sjogrens diease, It affects my organs too. My stomach lining is gone, my organs swell and get covered with internal soars just like the external soars ony skin., Degenerative Disk Diease my disks have no fluids at all., Scoliosis, because my back can't support itself, my ligaments and tendons tear away from the bone. Osteoarthritis, osteoporosis and Fibromyalgia. I have done Chemotherapy for my R.A. ( but remember it's not cancer) just treated like cancer! My body is eating itself! And my response was not from President Trump. It was from Health and Human Services stating...My care was with my Doctor and my individual case. To me this is beside the point of changing the new 90 Milligrams Morphine Equivalent. President Trump wants people to commit suicide. It would sure help his Defishit, all the people die and nobody is benifisherarys to their Social Security or Disability income. Our lovely Government keeps that! The government doesn't even call it Social Security income. It's now called a Benefit! Imagine feeling so sick every day that all you want to do is throw up from Pain So severe from your body attacking itself. Fuck you, President Trump! The inhumane Leader of the whole dam U.S.A.

      Posted by Susan Edwards on 5/15/2019 6:45 PM

    • I've been on opioid for 11 years ,never misused or tested dirty or short on meds,now I have 3 kids might be taken from me cause I'm unable to take care of them,I have PTSD anxiety, rusphred disk full muscle tear rotor cuff surgery, sciatica, osteoarthritis, list goes on ,I'm now in so much pain I wish god would take me,on top of losing my kids,they should of known we as pain patients do what is asked and now we have to suffer,your right how many have to die first from sever pain,this is why now I understand why people go to street or kill themselves, this is no joke I hope and pray something good changes soon we suffer not them why should they care.

      Posted by Karol on 5/15/2019 10:15 PM

    • These damn polotitions are the reason people with chronic pain aresuffering. There's special place in hell for these polotitions Responsible for suicides due to the fact patience can no longer endure physical pain. I dare you to walk (oh lets sat about 12 feet!)in my shoes and feel my agony! Talk with other leaders honestly because one day you will be the laying like an invalide shrieking in horrible pain!

      Posted by Barbara Brardt on 5/16/2019 11:10 AM

    • I'm in the same boat as many of these personal stories. Because the two rare painful incurable diseases I deal with are not fatal in and of themselves- I'm being forced to totally get off all opioids, which I was on the same dose for 17 yrs. The CDC does not recognize how going from being functional to bed ridden has placed me at risk for blood clots/ stroke/ death [which would be a blessing at this point]

      Posted by beth on 5/16/2019 3:51 PM

    • Having gone through posts, It is very obvious that a great many people are still suffering. Why then, has there not been a lifting of opioid restrictions for chronic pain patients? When the CDC slapped a one size fits all set of restrictions, they essentially took control of what chronic pain patients need to treat their pain. They never saw or spoke to us. Don't know what we look like or know our circumstances. If a Dr. prescribed medication, any medication, without any relationship between Dr. and patient, they would either have their license suspended or taken entirely. So, why is it that the CDC thinks it can? I used to think the whole "black helicopter" thing was a reference to paranoid people. Not anymore. I wonder how many people involved with making or enforcing the opioid guidelines go home and directly to the wet bar? How many pop pills? Should one of them need an opioid at higher than the "recommended", how fast could that person pull some strings and exempt themselves from the guidelines? Perk of the job? Probably kill their own mother if it meant winning an election. My patience ran out months ago, and I won't apologize for my anger.

      Posted by Alexander Wolf on 5/20/2019 6:39 AM

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