Professional Input

This is the place for practitioners to anonymously say whatever you feel constrained from saying in other places.

53 Replies to “Professional Input”

  1. Ms. Merandi: Thank you for posting my letter (Legal Precedents) on the DPP national page. No person or government agency is above the law or the supreme court decisions which guarantee patients the right to palliative care; obstacles to palliative care must be eliminated. Those who put up obstacles to palliative care by more red tape, or more bureaucracy, or harassing doctors who treat pain patients, are practically in violation of the law and in contempt of the Supreme Court, with or without knowing it. So, pain patients are asking for legal rights not begging for mercy.

    I sent these laws to the DOJ offices of civil rights division and office of professional responsibility (addresses below).

    It would be very helpful to our cause if more people sent the legal precedents to those offices and to other influential people.

    Dr. Salman
    —–

    US Department of Justice, Civil Rights Division, 950 Pennsylvania Avenue, NW Criminal Section – PHB Washington, DC 20530 and E-mail at ADA.complaint@usdoj.gov
    Counsel Office of Professional Responsibility. By express mail and E-mail
    950 Pennsylvania Avenue, N.W., Suite 3266 Washington, DC 20530-0001 OPR.Complaints@usdo

  2. To Dr Salman,

    Thank you Thank you Thank you. What you have put together – stating both doctor and patients Actual rights in regard to pain relief is absolutely astounding!

    Just a few years ago, prior to the “guidelines” having real world effects on patients, I personally just assumed that those rights under supreme court rulings, were a given, to the degree that I never thought about them at all! This goes to show how quickly the CDC has made us forget what it was like years ago and how now, the fight for our daily medications is the norm. We never HAD to think about our rights. We never had to have this enormous ongoing stress nor this ongoing state of pain so intense that whole life after whole life has been destroyed, by some unknown entity to me. I haven’t been able to figure it all out. How can doctor rights and the American people’s rights….have gone missing? How did so many get away with doing this to doctors and patients? Why in the world can’t it be fixed, now that some light has been shown? Who is responsible for letting this continue on?

    Many thanks for a great document! I downloaded it and will be using it from now on.

    By the way, I have a “bad back ” from a car accident, have had too many things done to mention here, I have cancer, I have trouble walking around my house from a bad leg that has multiple diagnose /problems, I have damaged lungs, a number of other chronic pain problems, and the worst of what I have is TN. I had to cancel my cancer surgery in July and will cancel its reschedule date in September. My family doctor will only prescribe tylenol 3 and gabapentin and 2 ibuprofen every 6 hours for me, and all I can tell you is what I tell her, I am in constant severe pain all over, this “cocktail” isn’t working. I then get the speech of how she can’t give me what I need at her office, and to go to pain management. I went. That doctor said “well, looks like she’s doing what I would do and there’s really nothing else I can do here. ” I will mention that for the 15 minutes I was in the exam room that HE WAS SORT OF THERE, he was called out 3 times and actual time spent with me was under 2 minutes. And this was a well respected practice too! So I was taken aback.
    Also this month my pharmacy notified me that it would no longer give me the 2 inhalers every month that is prescribed to me. I’ve been on them for 20 plus years. After much discussion with him I finally understood that it was HE and him alone that made this decision! I cannot tell you what his decision has done to me. There are few words to describe what it’s like to go through life in severe pain, AND unable to get a full breath of air into your lungs too. So you see, I am in no shape for major surgery. I wish this hadn’t have happened right now while I was stressing over surgery because it made surgery a hundred percent out of the question. I told the pharmacy this and it fell on deaf ears.

    Thanks for listening to all this and thank you for what you’ve done.

  3. Provider Column:

    If FDA is the federally mandated regulatory agency, and its labeling is by regulation which has the force of law, and the FDA does not have maximum doses for long term use allowing titration to what ever bottle mg level works without side effects, and since dose, type of opiate, length of use have nothing to do with opiate (my Type B) addiction, why are we not following the legal guidelines instead of the CDC “guidelines” an agency that does not have a charter for opiate regulation, or suggestion, or recommendation —- only the FDA

  4. We are often told that pain is subjective and cannot be measured. That may be true today, but in the future, we will be able to measure the electronic correlates of pain. It is too often overlooked that even today we can measure OBJECTIVE correlates of chronic pain.

    People with chronic pain fall and suffer injuries far more frequently than people without pain. It is not pain medications that cause the falls. Falls happen even in people who are not taking medications. I have reviewed the issue of Falls in Chronic Pain in an article published in Practical Pain Management (https://www.practicalpainmanagement.com/pain/other/co-morbidities/chronic-pain-falls). Numerous references that confirm the association between falls and chronic pain are listed in that article. I also explain possible physiologic explanations.

    Another objective finding that is present in about half of people with chronic pain is hyperactive reflexes, especially the patellar (knee jerk) reflex. Most physicians are not very good at eliciting consistent reflexes, and the tool that most use is practically useless. A reflex needs the application of a sudden stretch of the tendon being struck. A “Queen Square” reflex wheel provides excellent strike pattern to consistently elicit reflexes. (See this link for a picture: https://www.amazon.com/Neurological-EIH-781-pointed-superficial-responses/dp/B01JMTC3AO/ref=pd_lpo_vtph_121_tr_t_2?_encoding=UTF8&psc=1&refRID=8HPW7YZE59BBGMNNJBYY).

    Using a Queen Square Reflex Hammer, about 44% of my chronic pain patients had hyperactive or brisk knee reflex as well as a “crossed adductor reflex (CAR).” The CAR is generally considered to be an abnormal reflex. In this reflex, when you strike one knee tendon, the adductor muscle in the opposite leg also contracts reflexly. This reflex pattern is also described in my article.

    I urge pain patients to ask their doctors to check reflexes carefully and to invest the $10 to $15 needed for a Queen Square Reflex Hammer. Let the doctor know that the experience of pain may be subjective (known only to you) but some physiologic correlates are indeed objective and measurable.

  6. So tired of seeing my patients suffering…. being made to switch to tramadol or gabapentin or going through injections that quite frankly don’t work… that aren’t surgical candidates and some older and not ready for hospice…. it’s literally at crisis level…. most have to travel 60 miles (in pain) one way to see a pain dr… its simple heartbreaking…

  7. I am a nurse practitioner who practices in Missouri. I have been in pain management for the past seven years. I truly came into this field to help my patients. Unfortunately, in Missouri we are not allowed to prescribe controlled substances and must be in practice with a collaborating physician who dictates how and what is prescribed and must sign scripts. I truly believe in advocating for what I feel is right for my patients, treating them individually rather than on some blanket numbers given to me by someone who has never examined them or even spoken to them. It angers me and deeply saddens me that these CDC “guidelines” were made for us to follow by Governor Greitens even though they are not law or will be reported to our licensing boards while he is not held to the same professional standards. I do not understand how taking away the pain medication of my patients who have not done anything wrong, who have no history of aberrant behavior is keeping heroin from being brought in the USA. When I am literally crying, telling my 72 YO that I have to decrease his meds and he asks why and I don’t know why. Because at this point as with most pain management patients, he has done physical therapy, chiropractic care, surgery, interventional procedures, topicals, and every other adjunctive therapy known to man. There is no reason pain management should not be able to treat pain management patients. I am so angry that my CP will not stand up to it. Thank you for letting me vent and thank you so much for standing up for all the pain patients who need help.

  8. I am a retired RN who is now elderly and in pain. I know that any one who has mobility issues must be medicated as immobility is the worst

  9. I am a physician and so is my spouse. I am responsible for my father who has dementia. He recently had a partial foot and ray amputation followed by a month of non-healing followed by a below knee amputation. Listening to him scream was a nightmare. This demented nearly 80 year old was left after his block wore off over 24 hours at a time at least twice with nothing for pain, and very little between. He was expected to understand “prn” dosing. He was almost kicked out of 2 rehabs for refusing to do therapy—because he was in so much pain immediately after his amputation. His team refused to consider a scheduled dose prior to dressing changes and therapy. I overheard a team member cruelly tell him phantom pain was normal when what he was having was acute post-op pain. I wonder how they would have felt right after having a leg cut off and being extremely confused? I won’t even go into mine and my husband’s experiences with medicine in general. It’s disgusting. These guidelines have ushered in an era of the worst behavior I’ve ever seen. We’ve been extremely lucky to have some wonderful providers and pharmacists we’d be dead without. They are the minority. Most are concerned with their bottom line, they know malpractice is no longer a threat, and they don’t have to listen to patients or even examine and diagnose accurately anymore let alone treat with compassion. If a procedure or device hurts you it’s your problem. God help this nation.

  10. As a nurse of 35 years who is also waiting to have bilateral hip replacements who has arthritis in my back who has had three knee Replacements and foot surgery I am shocked at the amount of pain I’m asked to endure rather than have my doctor prescribe pain medication for me when he does prescribe medicine Walmart Pharmacy gives me a hard time about filling my medication

  11. It is my experience dealing with chronic pain patients that commonly the source of suffering is not adequately recognized (both by patient and provider). This leads to inappropriate use and the development of physical and psychological dependency on opioids. Clinical evidence is clear that the use of opioids for long-term treatment of chronic, non-cancer pain is a failed treatment strategy. This “grassroots” organization may not be operating in the best interest of people using and dependent on opioids for managing their painful condition and that by focusing on the effort to promote opioid use, you would serve people more effectively by promoting alternative therapies known and proven to reduce pain, improve life, and increase safety.

  12. Dear TMack PhamD

    Well you sound like if we havent tried
    Its not up to us to find other ways to treat our pain Opioids were given to us because the medicial feild has Failed on find other pain relief
    We are not doctors or are we chemisits or in the medicail field
    Thats up to people Like You
    Here you are punishing us (Again )
    For not knowing other means of reliving our pain
    Get to work on it Bud if you think there are other ways what i feel is stopping you is your lack of education and self ego,, easy to point fingers ,,
    And while your blaming us for our lack of knowing other methods to relive our pain Have you tjought about the Insurance that dosent cover alot of the cost for other remedies
    If you read most posts many have had injections, over half have had surgery So where is this our fault ?
    We can only use wjat avaiable to us
    Any other Ideas are great if we all can benifit from them
    Your more mouth then knowledge ?
    You want to help ? Go find ways for us to be with out pain and pills
    Thats not really our profession We paid for a doctors opinion and they gave us legal drugs

    All i can say more to you is , Find a better way for us Maybe you have not thought out your thinking before you posted

    They can send a man to the moon
    Still cant cure common cold
    Or relieve pain Go figure !!

    So Mr TMack PharmD
    Thanks for your comments but it sounds like ahain we are being attcked because we arent doctors or have the knowledge to cure our selves
    Your comment should be in every medical school Ask them to find ways to fix us
    Amazing
    Not very encouraging are ya !

  13. TMACK PharmD, I have to disagree with you. I am a patient who has used opioid therapy for 15 years, it continues to provide relief with no need to increase dosage or strength. There is a difference between addiction and dependency. I suffer from polio, Post polio, osteoporosis, osteoarthritis, neuropathy, pain from failed bone realignments from hip, tibia/patella fractures. I have tried alternatives pain therapy’s & some are not an option for me because of my diagnoses. Each patient is different & how dare we put into a one size fits all, how dare any government official or even physician assume that they know my body and pain more than I do. I have been proven to be a responsible legitimate pain patient, was once a contributing member of society until accidents & age has played havoc to my body. Opioid therapy had allowed me some quality of life now with force tapper I’ve been sentenced to a life of misery, insomnia, unrelenting pain & depression. I contracted polio from a US military base at 18mo of age, how dare my government now again inflict more pain & misery with their inhumane guidelines. This opioid crisis is now due to illegal drugs, illicit fentanyl & not because of responsible legitimate pain patients.

  14. Notice that he is a pharmacist not a pain md. If he has experience actually working with pain patients, one on one, he would give examples to support his argument. Possibly, like most pharmacist, he is far removed from actual patient engagement and projects his prejudicial ideas onto complete strangers he knows nothing about.

  15. TMACK your entire post is a joke. Insurance companies and government health organizations have given you a false sense of knowledge and entitlement. Sure you know a lot about medications, but you completely lack empathy, compassion, and knowledge of the people using these medications. Do you really think chronic pain patients haven’t tried “alternatives”?! Most have tried distraction, relaxation, meditation, topcals, injections, surgeries, NSAIDs, OTC options, TENS units, cannabis, injections , steroids, seizure meds and antidepressants with off label uses, hypnosis and more. I’d love to hear more about what else they should be doing and using…. Do us all a favor and stop pretending you know more about the bodies and treatments of those suffering daily with pain, whos only relief, despite all efforts are opioids. Everyone isn’t an addict and all who take opioids don’t abuse them. You should really stick to counting pills, monitoring interactions, and advising on adverse effects rather than thinking the war on opioids isn’t a war on pain.

  16. I am a pain Dr. in Caldwell Idaho and I am appaled at the DEA as well as their bosses who have basically ordered myself and other physicians to force my patients to drastically reduce their rather inexpensive pain management medications and or switch to other, extremely expensive alternatives, which increases their out of pocket expenses by about 400% to 900%. Tell me, who is really benefiting from these forced changes, my patients or the pharmaceutical companies and their political puppets who rake in the money, all the while doing nothing to actually help those with chronic pain?

  17. This organization doesn’t reveal its funding sources and this needs to be made public. The massive organization and web presence appears too professional to be grassroots.. if anyone can share the funding sources of this organization, I encourage you to do so.

  18. I have submitted a comment previously and have yet to see it posted. My question is where is the support and funding coming from this group. I have seen the power of the pharmaceutical industry manifested by patient advocacy groups numerous times and usually the support is couched in legal jargon and kept fairly low-profile to give the impression that this is all about the patient. With the Don’t Punish Pain website, we see none of that and only a brief bio of the initial organizer, yet the website and numerous events and lobbying activities indicates a more powerful and well-funded background support. I would really like to have DPP step up and deny they receive any funding or support from the pharmaceutical manufacturers of opioids, and what their true agenda is. People need to understand that this is a multi-billiion dollar industry and it is quite simple to provide shadow support and use patients and providers as shills to advance a profit-motivated agenda.

  20. Pain in adults with sickle cell disease is the rule rather than the exception and is far more prevalent and severe than previous large-scale studies have portrayed. It is mostly managed at home; therefore, its prevalence is probably underestimated by health care providers, resulting in misclassification, distorted communication, and undertreatment.

    I read this in a review article 2008. It is worse today.

  21. I don’t understand the sentence is being handed out tonight these judges. We are truly living in an unprecedented era where the police and the judiciary have decided to practice medicine. I have had judges as patients would say that I was a very good doctor but the propaganda machine is vilified physicians so badly

  22. Fifty percent of people addicted to opioids start with a medically- sanctioned prescription. Opioids for chronic, non-cancer pain have more liabilities than benefits. Posters claiming that those of us who wish to reduce use of these drugs are cruel really don’t understand our motives. They also ignore the known conspiracy perpetrated by Big Pharma to create a population of addicted and vocal pain sufferers. Don’t Punish Pain is likely another “astroturf” advocacy organization. I suffer from chronic pain and can personally testify that opioids make you feel wonderful, but are merely a mask and they adversely affect neurological and cognitive function in the long run. I’ll end with encouraging pain sufferers to research the modern approach to managing pain instead of their continued dependency on opioids.

  23. @TMACK… We understand your motives, the problem is you not understanding our pain; that these liabilities of prescription opiate pain relievers you speak of, usually being more tolerable, are largely preferred over the pain! The benefits of the relief they offer for most far outweigh their risks and any side effects. IMO death is preferable over this!

  24. I was injured in the line of duty with the army. I fell out of a helicopter and subsequently was injured later after all the surgery etc etc. I dont want to go into the 23 spinal surgeries and all of the joints that have been replaced or rebuilt. I want to try to convey my point of view to the people like this Pharmacist that wrote a paragraph.
    I will first say that I’m married to a pharmacist and she has had her eyes opened just by taking care of me. I am a proud man, I learned to walk again as an adult. I have not been able to sleep in a bed for many years. I have a spinal cord stimulator and work out 4 days a week. I’m not fat.
    Now, I only want some quality of life. I was an Army Ranger that fought for freedom and when a new pharmacist refills my meds I get treated like a junkie. I am not a junkie, but because of all of the injuries I have my quality of life is gone. My medication simply takes the edge off so that I can tolerate life. My feet have felt like blocks of wood for years. I love my wife but cannot feel my genitals fully. I cannot tell if I’m erect without looking. I just want some quality of life. I may have 10 or 12 years left being able to walk. The only way I can walk on the beach and hold my wife’s hand is by taking some medication for break through pain. I still can only walk about 200 yards with the meds but its something. I guess I’m trying to say that the people that think I should not have access to narcotics have never had to live like I do. I’m going to end up with the intrathecal pump but as a 50 year old man that has been an athlete my whole life and an Army Ranger that fought for this country I should not feel like I have to grovel for medication that simply allows me to have a small bit of normalcy. We lose 21 veterans every single day to suicide. Maybe we should put the compassion back into the care and yes help the addicts but I also believe I deserve compassion.

  25. @Tmack “I’ll end with encouraging pain sufferers to research the modern approach to managing pain instead of their continued dependency on opioids”.
    Well, that is quite a blanket statement without any references whatsoever. First, you are assuming like so many others that opioid consumtion automatically equals addiction for everyone, which it does not. So what is the “modern approach” you speak of? The continual stretching Ive always done anyway without a medical professional telling me to do it? Or the prescribing of motrin, as if that will even touch my pain and which in itself comes with risks in the long term?
    Here is where you are COMPLETELY missing the point. MOST people do NOT WANT to take any medications whatsoever. Believe it or not most people just want to get up and live a normal life without taking meds or dealing with debilitating pain. But that is not a reality for a LOT of people. Most people are in control of themselves and do not need big brother watching them in order to not become addicted. Most people take ALL OTHER MEDICATIONS prescribed knowing the risks and benefits and manage both. I know people who have taken opioids on and off for periods of time for the better part of a decade and never suffer withdrawals or any addiction symptoms when not on them AND they are still only taking usually half of what they could. They, and their doctors, are able to manage all by themselves. Imagine that…
    Most people have pain so bad that life-altering, permanent pain feels as though it ws written into their DNA. As for the “feeling wonderful” part of your statement, MOST people do not want, nor take, opioids to “feel wonderful”. Most people know they will never “feel wonderful” ever again. Most people just want enough medication to take the edge off, (and not even every day), because they know that reasonably, (most people are reasonable), that is as much relief as they will find, and they are not expecting a life altering substance, but rather some help. Thats all, just some help.
    Taking the edge off an unrelenting condition that robs them of both life and dignity isnt much to ask.
    And please tell me, how many of those truly suffering that dont get help then turn to relief from something else, such as alcohol? Or maybe even crack? Who knows? Relief has to come from somewhere, period, because people can only take so much… so much pain, so much government and so much control. But the government can hand out needles to junkies and give them free reign of whole cities yet that seems to be okay. Poor life choices have resulted in alcoholics for eons, yet the government, WHOM ARE NOT DOCTORS I MIGHT ADD, does little to control the distribution.
    The pendulum has swung WAY TOO FAR in the opposite direction because SOME people have made poor life choices but that should not mean that most people should have to chronically suffer just because some people could not control themselves. Addiction, or prevention of it, is a choice and MOST people choose NOT to become addicts.
    Now, a person even mentions pain to a doctor and one, or a combination of three things happen; they are not taken seriously and are brushed off, are taken somewhat seriously but are just handed a pamphlet for counseling, or are taken fairly seriously by the physician but not so much by pathetic insurance providers.
    Now we have a nation crying out in pain and the government has tied the hands of those who are supposed to br able to help them. Most people dont like asking for help. But sometime quality of life is robbed from them and they must ask. It is already an undignified, shameful feeling to most people to do so. Then when they finally reach thier limits and ask for help, they are treated like a 100% addict already, which is undignified and shameful in itself.
    People just want to live as normal a life as possible without an overreaching and overbearing government entity continuously acting as judge and jury of both thier doctor and themselves. Let people have control. If some “hang themselves” in the process then so be it. That’s human nature that some will make that choice. Preventing most everyone from quality of life will not save some others from themselves.

  26. “TMACK PharmD
    MARCH 24, 2019 AT 5:34 PM
    Fifty percent of people addicted to opioids start with a medically- sanctioned prescription. Opioids for chronic, non-cancer pain have more liabilities than benefits. Posters claiming that those of us who wish to reduce use of these drugs are cruel really don’t understand our motives. They also ignore the known conspiracy perpetrated by Big Pharma to create a population of addicted and vocal pain sufferers. Don’t Punish Pain is likely another “astroturf” advocacy organization. I suffer from chronic pain and can personally testify that opioids make you feel wonderful, but are merely a mask and they adversely affect neurological and cognitive function in the long run. I’ll end with encouraging pain sufferers to research the modern approach to managing pain instead of their continued dependency on opioids.”

    This attitude is exactly the problem; it’s dismissive and shows a profound ignorance of what patients are actually going through.

    “Fifty percent of people addicted to opioids start with a medically- sanctioned prescription”

    That this person is using this point to argue against prescribing opioids to Chronic pain patients shows he does not understand reality. Sure, there was a big pharma conspiracy, but there’s also a difference between presribing these medications to acute pain patients and chronic pain patients. They are fundamentally different things that shouldn’t be conflated.

    If a chronic pain patient goes from oxycodone to black market heroin, it’s probably because that person needs to manage their pain and they’ve been denied the medication they need by their doctor. If an acute pain patient goes from oxycodone to heroin it’s probably because they got addicted. Addiction to a medication that you need to be taking is not really addiction. It’s pseudoaddiction, and a medical professional should know it. Most medications have a biochemical addiction that occurs.

    “Opioids for chronic, non-cancer pain have more liabilities than benefits. Posters claiming that those of us who wish to reduce use of these drugs are cruel really don’t understand our motives.”
    “I’ll end with encouraging pain sufferers to research the modern approach to managing pain instead of their continued dependency on opioids.”

    These two comments again show this person’s ignorance of real patient experiences. I’m 30 years old, and have been experiencing chronic pain since my early 20s. Compression fractured 3 vertebrae in my lower back in a car wreck, add on celiac disease, fibromyalgia, CFS, and now a bulging disc in my neck.

    I’ve undergone the full battery of treatments that consitute “the modern approach”:
    PT, chiropractic, deep tissue and bone massage, acupuncture, all kinds of supplements, TENS, ultrasound, whole body vibration, inversion, traction, strength training, yoga, pilates, mediation, therapy, ice/heat, CBD/essential oil balms, gluten free diet, Mediterranean/anti inflammatory diet, elimination diet, all organic diet, juicing, probiotics, fermented foods, dairy free diet, trigger point injections, steroids, lidocaine and novocaine nerve blocks, flexeril, lyrica, celebrex, meloxicam, gabapentin, tramadol, kratom NSAIDs, zanaflex, and many, many other supposedly safer and better meds I can’t recall at the moment. I have spent I don’t even know how many thousands of dollars on all these treatments doctors recommended but insurance doesn’t cover. The modern approach doesn’t always work. It hasn’t worked for me.

    This pain has completely derailed every aspect of my life. I had to quit my job, give up my career as a welder because the pain of simply wearing the welding hood and looking down is intolerable for more than a few minutes. I haven’t been able to maintain friendships because when I’m in bad pain, which is most of the time, I’m just a downer to be around. When I wasn’t in pain I made people laugh and we had a great time. But now I have a hard time even sitting through a movie or going to any event where I have to stand or sit longer than an hour. Driving for any length is hard. Some days I get flare ups and I can’t do anything. The pain feels like it’s inside my brain and every other thought process is ‘how can I make this stop’.

    I’m trying to build a music production business that will allow me to work from home, but even with my convertable desk and all my ergonomic stuff, when I get a flare up or even just a day of background level 5-6 pain, it becomes almost impossible to juggle the dozens of complex multi-dimensional considerations that are required to produce music. Becaue every other thought becomes ‘my God this really hurts’ .

    And I know most of it is unnecessary pain. My understanding of fibromyalgia is that because of the original trauma of breaking my back, my body is now grossly overreacting and overcompensating for small injuries. I understand that my bulging disc isn’t bad enough to cause this level of pain according to the medical texts. It doesn’t matter because the pain is real and there is more going on than just an injury, and it’s dibilitating.

    I don’t have a low pain tolerance. I’ve broken bones, had bone deep lacerations, drilled a hole through a finger and had to wash it out with salt water, third degree burned myself on thousand-degree pieces of metal, crushed my thumb in a bending break. I didn’t cry or scream any of those times. Most of those times I kept working and finished my shift, went back the next day. Over a decade ago I trained in martial arts, and pain tolerance was part of the training.

    I’m not just a whimp who can’t stand a little constant pain and wants to feel ‘wonderful’ all the time. When I say my neck pain is an 8 or 9 out of ten constantly and I cant function, it isn’t BS. I can’t “modern approach” my way out of it. What happens is I lose days to weeks of my life, because none of those treatments are effective for me. I’m just laid out in pain the whole time, usually not sleeping very much, using ice or acupressure to slightly numb an area for a minute or two. I massage until it becomes counterproductive. None of it works for long.

    I left my home to move closer to the city, where I hoped there would be more options for treatment. I was hoping to get into a pain management clinic, but my new doctor down here found a couple new medications I haven’t tried yet, so now I have to go through most likely more months of pain before he will consider referring me. He wants to try the modern approach again from the beginning, only this time I don’t have the income to pay for all these extra treatments that do help a little. I don’t have high hopes.

    I’ve never had an addiction problem, I actually have been opposed to the idea of painkillers for a long time. I believed the modern approach was far better. But it hasn’t worked, and now that I want to just reduce my pain and get on with my life, I can’t get a doctor who is willing to prescribe more than codeine. Anything weaker than vicoden makes me violently nauseous at
    a dose that begins to bring pain relief. I need stronger stuff that nobody is willing to give me. I used to know a guy that could get heroin, and I can’t honestly say I haven’t been tempted to get a hold of him. It’s the last thing I want to use, but I feel hopeless and I’m running out of willpower and just will to live.

    I don’t want to feel wonderful all the time, be high all the time. I just want to control the pain to a level where I can get work done on the computer, exercise to get my heart rate up, because that helps a lot over time, and actually go out with friends and enjoy activities again.

    This irrational demonization of opioids and crackdown on chronic pain patients is founded on misinformation and just ignorance. If you crack down on the opioid epidemic by directly indiscriminately attacking the people taking them, and you don’t address the chronic pain epidemic, don’t treat chronic patients differently, the results are not going to be desirable. You’re just hurting patients. Doing harm, which is supposed to be the first thing not to do, right?

  27. @Tmack “I’ll end with encouraging pain sufferers to research the modern approach to managing pain instead of their continued dependency on opioids”.

    While I’m not a professional, I definitely am a professional at suffering the pain and torture that is being done now. Didn’t know you that many of us have tried physical therapy, we have tried many other things & it didn’t work. PT rarely works on stenosis. Some of us are rural, can’t drive from either the illness or effects of meds we get.

    Hey, if I were you, I sure would study about dependence upon medicines vs addiction. Addiction is very rare. Did you know this? Drs & others are mixing up dependence with addiction; dependence is not addiction. I’m dependent upon my Beta Blocker blood pressure med. See jatheducational.com What multiple genetic errors in gene A118G causes addiction to opioids, do you know???

    Kind Regard!

  28. @SMS, I could not have addressed TMACK PharmD better myself. Your remarks were on point and obviously coming from someone who knows what it is like to live in constant pain. Thank you for your response. It is quite apparent that TMACK knows not where we come from or what it is like to wake up every day in pain and lay down every night in pain. It is not about popping a pill and making the pain go away but using medication that we and our doctors deem helpful to add to our “toolbox” of things to make our pain a bit more manageable. TMACK obviously does not understand that those of us who live with pain every day already use or have at least tried acupuncture, chiropractors, meditation, hot baths, stretching, walking, massage and any other means that may help. Again, thank you for such a beautiful response.

  29. I think that one strange side-effect of the increased mortality from opioids, the regrettable CDC Guidelines, and the over-reactions from the VA, state medical boards, and the DEA is that the general public is now able to get a sense of just how widespread and toxic is the problem of unaccountable authority in the US.

    While it used to be true that the Federation of State Medical Boards (FSMB), the Federation of State Physician Health Programs (FSPHP), and the American Society of Addiction Medicine (ASAM) were considered to have a free hand in regulating and disciplining physicians without oversight, and irrespective of state and federal statutory constraints, because physician numbers were relatively small and their positions were not considered typical of the general public, it turns out that the exercise of unaccountable authority by governmental and para-governmental organizations has a tendency to seep into all aspects of government policy and public life.

    It is noted with irony that the exercise of unaccountable authority is intoxicating and those groups and persons habituated to its use will look for wider opportunities to exercise it. Little, albeit systematic, injustices don’t stay little for long.

  30. I am now retired but was an ER nurse for 27 years. ER staff can generally spot a drug seeker a mile away and know the difference between them and someone who has legitimate pain. Do I personally think over prescribing opiates has caused the opiod crisis? No. I believe what has caused the most problem is the rush to treat pain in the clinical setting. I refer to giving copious amounts of IV narcotics. The pharmacist that posted about “feeling wonderful” from taking opiates may have been referring to this. When I first became a nurse we rarely gave narcotics IV and if we did it was in very low doses. Most were given in an intramuscular injection. Takes longer to work but lasts longer.

    I myself have psoriatic arthritis. I have degenerative disc disease and frequent bouts of colitis. I also work 8 hours at a time on my feet. I am no longer a nurse because I have to take opiates to be able to work. Board of Nursing does not allow this for obvious reasons. My retirement pay is not enough to live on so I must work. For some of us a few pills a day is the difference between having a home and being homeless.

  31. The sad reality is that many addicts have an underlying dopamine signaling issue (d2 receptor). Taking dopamine antagonists like oxycodone gives them a more “normal” sense of well-being and functionality rather than a healthy individual who is on opioids. There are only a few medications that correct this including certain medications to treat adhd, Parkinsons and of course, opioids. Since pain relief is not a disease-specific treatment, like say antiseizure medications to Parkinsons, it makes opioids the most widely introduced to the general public. When someone who is dopamine deficient takes opioids they are actually more “functional” and do not get the same euphoric effect as a person with properly functioning neurotransmitters. This makes it desirable to many because at lower yet effective doses they are not intoxicated or high but instead have the proper reward center function as healthy people. In turn this makes the dose required to achieve a this euphoria high much higher and subsequently more dangerous to those who are also abusing it for recreational purposes. This is why the amount of overdoses on these medications is a genuine concern, more so in these individuals. Unfortunately law makers have basically overlooked this completely and without actually understanding the root cause of a problem you can not effectively correct it. They’ve instead chosen to just restrict these medications on a widespread basis without regard for its actual clinical need and this will only further aggravate the underlying psychoneurological problems of many addicted to it. This will continue to leave it unaddressed and untreated. Many will then just turn to illicit drugs to self medicate. Unfortunately, those who do not will also likely suffer due to the exacerbation of the mental health conditions they were attempting to control to begin with. The further deterioration of their mental state poses a significantly enhanced challenge if they do eventually get proper help. Basically it sets these individuals up to fail and essentially helps no one in the end. The most disturbing part is that while this poorly executed plan to curb addiction is failing miserably, there is also another demographic being made into the collateral damage. These casualties are our nation’s legitimate pain patients who are being denied adequate medically necessary treatment.

  32. As a practicing physician I agree with the pharmacist on two points but disagree with the overall post. Yes there was corporate pressure to write opioids and the major side effect, respiratory depression, kills people. However, what other class of meds works as well for pain? Antidepressants and antiepileptics can help but in my clinical experience they just don’t work as well as opioids. There’s just no excuse for a system in which some patients commit suicide to stop the pain. Let’s carefully monitor patients on opioids to reduce the risk of respiratory depression.

  33. When will the media finally tell patients that at least half the opioid overdoses happen to people who get meds illegally from friends? Any doctor who has done CME recently knows what I’m talking about.

  34. Has anyone done a study to look at all causes of mortality in chronic pain patients? It might be difficult to control for factors such as the original causes of pain (trauma, diabetic neuropathy, etc) Even so, I’d like to read about it. Does pain itself have a significant impact on mortality?

  35. Not only have the doctors been pushed to tar chronic pain suffers with the same brush as criminally mischievous drug abusers, they have also been politically pressured to suggestively interpret in their progress notes the despairing actions of chronic pain sufferers as being substance abuse symptoms. Having fallen for it, believing the “therapeutic” effectivness of a partial agonist as efficacious as a pure opioid, my situation is not only much more painful, but I am now on record as being a drug addicticted, drug seeking, junky. When my prescriptions changed from stating pain as a diagnosis to “dependence” the pharmacy staff’s attitude and demeanor shockingly became so condescending and judgemental that people I had known for years became so hostile I’ ve now changed pharmacies twice and found, not a reprieve, but even less helpful and even
    seemingly vindictive apathetic behaviors.

  36. I belong to an RN group on Facebook and I am utterly ashamed of some of my colleagues. The way they turn their noses up to pain. They laugh at it. Make disrespectful memes for likes and carry on over disgusting comments. It breaks my heart. We live in the year 2020. No one should suffer from pain. Yea, Norco causes dependence. You can’t stop it abruptly. Same though with a medrol pak or any antidepressant. The body becomes habituated to many medicines. Suffering is occurring. Suicides are occurring. But the DEA isn’t worried about every other KID in the US sucking down amphetamine salts. Opioids monitored well work well, they have since the olden days. They allow people to work, play with their kids and have a quality of life. This witch-hunt is deadly.

  37. Dr. Halkovic, I’m sorry and I don’t mean to be dismissive but that’s a copout. We all know how opioids effect our pain. If the powers that be do not, it is your responsibility as not only the educated mind involved but your responsibility to make it known because you’re the one writing it. They have not restricted anything. They only have made you have to speak to its authenticity.

    See, this is the problem, patients with real problems being told by their paid physicians that their hands are tied. Well, stop benefiting from it then. I’m so sick of hearing and seeing this blame game magician’s hand swap. The government doesn’t diagnose or have the power to prescribe. You do. If we aren’t getting the proper treatment it’s because your profession refuses to treat. What you don’t understand is the next step. Massive undertakings. Widespread lawsuits claiming depraved indifference. That’s what it is. Your fellows cannot get rich for 20 years handing drugs to people where 40% didn’t need it and kept getting it to the point where it was given so much that their death count couldn’t be overlooked.

    The depravity is that as long as you could hand it out and benefit without any responsibility you did. It wasn’t until people started asking why is someone with a sore ankle getting oxycontin did you decide it wasn’t safe for you. The irresponsibility in that is the same as the irresponsibility of taking it away from everyone regardless of whether or not they need it. To hear you, a doctor, come on here and push the blame like you did is a testament to just how little personal responsibility you actually take.

  38. You make a couple of good points Nicholas but I think you are somewhat off on your blaming physicians for being the responsible party for refusing to treat patients. There ARE many times when a physicians hands ARE tied and not because they have a choice about it. I had a colleague physician walk out on the facility because the corporation who owned the facility attempted to FORCE him to write an inappropriate opioid prescription solely based on threats by the patient that they would go to another clinic if they didn’t get what they wanted. He walked before being fired for not complying to rules set by a corporation, that was located out of state, and who had no clue about running a pain clinic. Their sole interest was making as much revenue for their investors as possible which is why the scheduled patients every 10 minutes. How do you provide appropriate care for a patient in 10 minutes? A week later, they tried the same tactic with me and I resigned. Physicians DO have a choice when writing prescriptions however; they may be also setting themselves up for wrongful prosecution and loss of license by writing for opioids that someone else has deemed “unsafe and dangerous”.
    The saying goes don’t judge another person unless you’ve walked in their shoes. You don’t know how painful it is to look a patient in the eye, one who’s been doing very well on what was being prescribed, and yet are being forced to tell them you have to cut back on the medications they have been functioning so well on in the past, knowing they are going to suffer. It haunts us being put in a position between what we feel is appropriate and safe, and being fired or worse, losing our licenses.

  39. I strongly disagree with the assumptions: “The sad reality is that many addicts have an underlying dopamine signaling issue (d2 receptor). Taking dopamine antagonists like oxycodone gives them a more “normal” sense of well-being and functionality rather than a healthy individual who is on
    an opiate.”

    When a person who has Centralized Intractable Pain” and other serious pain disorders experiences unbelievable, unrelenting, unbearable pain, they are only HEALTHY (spiritually, mentally and physically) when the pain is controlled. Treating chronic pain is like any other disease processes. Treatment needs to include alternative therapies, proper diet, exercise and being able to spend time with family and friends. Dosing of an opiate should be based upon the individual’s accomplishments of functionality goals.

    However, unfortunately, some chronic pain patients have lost their ability to function due to decreasing and/or changing medications that do not work. That situation requires intervention … to recover these unfortunate individuals who got caught in a deadly net.

  40. I have a slightly different view on things. 1. I am a nurse and 2. I am a chronic pain patient myself, in a position to help manage chronic pain in my patients. My issues come from failed surgeries, the first of which, was botched by my surgeon, which set me up for YEARS of pain and fighting for my right to be treated with dignity, respect and actually be listened to.

    I refuse to claim disability coverage for two reasons. 1. I LOVE my job and honestly, I feel better when my attention can be more focused to help others, as well as keeping my pain more under control when I am moving around more. 2. The stigma is REAL!!! Being labeled as a person who is opioid-dependent is a HUGE drain on my mental well being, and I dread my chronic pain appointments and going to pick up my medications that keep me working and functional. I do not get high and take way less than the 90 morphine equivalents that the government states is the max, but yet, I am still stigmatized and belittled for my use.

    I work as a PRN employee because there are days when I cannot make it to work due to my level of pain, but yet, I still work primarily full-time hours because I only have ONE income, and that is mine. If I don’t work I don’t eat, have a roof over my head, or anything else that is required to survive in this world. So the other stigma is using government-funded insurance because as a PRN employee, I am not eligible for insurance through my employer, which is a whole other issue regarding mental well being. I have had seven major back surgeries with three hardware changes, and due to all this, I have also had three total hip arthroplasties, with more up and coming. My only requirement for my surgeons are “keep me vertical and working”. I complete surgeries when I cannot function any longer, then it’s back to work… rinse and repeat. To make matters worse, I am ONLY 50 and should still have years of working left in me.

    My co-workers and the providers I work with have no idea of the pain I am really in, as I have become a master at hiding my pain outwardly, and crying throughout the day at times, in private. My career is everything from working surgery, the ER, home health, specializing in wound care and now clinic. I change my positions based upon my physical limitations, and thank goodness, working in clinic allows me to work without the physical side of nursing coming into play.

    Due to my unique situation, I am a HUGE patient advocate when it comes to functionality in regards to pain control, but even I have to fight on a monthly basis to keep getting what I am getting, so I CAN continue to be a functional member of society. In the 15 years since my first surgery, I have NEVER had one bad drug test, NEVER asked once for an early script, NEVER been discharged from services and still continue to work in between my many surgeries. Why then, does someone like me have to fight every month to have my basic needs met? I have done everything my providers have asked, including non-narcotic treatments, injections, physical therapies, and yes, even counseling to address my “narcotic abuse”, which has NEVER been abuse, but yes, I will admit to dependence… after 15 years, if I didn’t, I’d call myself a total liar.

    The scariest thing I am facing now is being cut off and having to deal with withdrawal, which I have gone through thanks to being so stigmatized about my prescription. I don’t drop names, or my profession and most of the pharmacists and clinic staff at my pain clinic have NO idea of my titles, where I work, or what health organization I am employed by, as my personal life is NOT my working life, and I have never striven to be treated any differently because of what I do. After 15 years of dealing with this, I am not afraid of the increase in pain if they stop prescribing what keeps me upright, I am afraid of withdrawal and not being able to work or be a functioning member of society if they do. In that situation, I fully understand why people commit suicide over this… without having a reason to go on, why bother remaining in this world when everything that you enjoy about it is taken away?

    I am now facing having to find another pain clinic to manage my pain, while I am prepping for my eighth major back surgery, since I was just cut off due to an argument with a previous pain clinic over financial issues, since I owe them a whopping $163. Yes, you read that right… not 163k, but ONE HUNDRED SIXTY THREE DOLLARS. While they gave me a month’s prescription to get me by till I can find another provider, which the referral is in for, but they haven’t finished reviewing it yet, and they are refusing to do the PA on the medication, which is due, and my PCP does not do ANY pain medications. As of tomorrow, I face withdrawal when I run out of medication and have no means to get it. So where is the justice for people like me?

    IMO: screw the government and screw the insurance companies for putting good people in a place where they are scared to death to face it. Providers SHOULD be allowed to prescribe without retribution by the government, insurance companies, etc, as long as the patients they serve are being managed, have a plan in place and are following the rules. There should NOT be a limit to what someone can get as long as there is a clear plan in place, their patients are well monitored and all the rules surrounding prescribing are followed… ie: drug testing, in-person appointments, etc. We, as prescribers, nurses, medical personnel etc, MUST STOP THE STIGMA. There are GOOD people who have no options, and should not be labeled as an abuser, because other people have decided they like the “high” they get and go above and beyond to get what they want. It’s really sad.

  41. We should be able to continue medications that work for patients and maintain their quality of life without insurance coming in and denying coverage and forcing weaning. We can decide which patients are safely managed just fine. They create a headache for patients and providers with zero justification.
    Pain Provider in Colorado

  42. I am a nurse in long term healthcare/rehab and am appalled that we take any pain control from any of my patients with chronic pain. Age is progressive, so is chronic pain. A 90 year old should not have to suffer from pain because of addicts who will continue to get their drugs by other means. My patients who are in therapy are unable to reach their full potential because of inadequate pain control. I’ve worked in this field for over 30 years, and when trying to be an advocate for my patients (which is my job) I get turned away because the medical staff is afraid of trouble because of these guidelines. I have to get medications renewed every 14 days, even for my hospice patients.

    To me, the patients in facility are in a controlled environment, narcotics are locked up and only given by licensed staff. Chronic pain just doesn’t resolve in two weeks. End of life care doesn’t resolve in two weeks. I hate these ‘rules’ that are in place. I feel that my patients that are discharged home have a better chance getting their medicine off the street corner than from their doctor, who will refer them to a pain clinic (more time without pain control) who will give them ineffective pain control until they figure out that they needed the actual narcotic they were prescribed by the hospital prior to admission to my facility.

    It’s very very frustrating trying to help my patients, sometimes I feel the doctors are encouraging me to make my 90 year old an addict, which is absurd. I hate seeing them crying in pain and barely able to move.

  43. Physicians should be able to treat their patients without worrying about the CDC or DEA watching over them. While there may be a few “bad” operators, they are few and far between. As a result of the CDC guidelines, physicians now decrease or stop a patient’s pain medication, often citing the possibility of addiction. While some patients may abuse pain meds – MOST DO NOT. For years I faithfully took the meds my prior physician prescribed, and my pharmacy filled without any issues; I also saw my physician every three months. Upon relocating, a new physician immediately decreased my meds to almost nothing without explanation even though she had my records, prescription information, etc. As a result I suffer from chronic pain daily, have little to no quality of life and more negative results.

    I applaud physicians who treat pain patients appropriately and are not biased or cower to CDC and others who fail to stand up for their chronic pain patients. We do not need to create another sub-class of providers. Insurance companies need to fill scripts as written and stop refusing to fill legal scripts.

  44. What can we do to stop the CDC and the government for making our doctors hurt us by taking away our pain meds. I have chronic back pain generation herniated bulging a broken shattered hip and a broken femur, and they just keep knocking mine down. I went from six today to four days this sucks can hardly do anything quality life is nothing.

  45. As an Advanced Practice Nurse board certified in Pain Management, I understand why opioids are needed. I do feel that patients must also share in the decisions and treatment plan. Safety is always my concern. I want to do NO harm. I am extremely busy and try hard to give my patients the time they need. There are risks associated with taking opioids and I feel very strongly that patients should be aware and educated. As far as CDC guidelines – I do use them but only as a guide. It’s a daily battle for me – always worried the state will bother me yet struggling to keep patients safe and treated with dignity.

  46. I had a stroke more than 10 years ago. When I came out of the hospital and recovery I had been in there for 6 weeks maybe longer, and was given hydrocodone for my pain, while I was still in a coma. I continue to use it because it helped with the heart palpitations and helps keep my blood pressure in check.

    So now they are taking me off of pain tabs. It was with the understanding of getting a pain pump to do the same as the pain tabs have done.

    This pain pump has turned out to be worthless.

    To be honest I want to die I feel useless. I am not a suicidal type person – I don’t have to be. I have a pacemaker that no longer helps my heart palpitations – my heart palpitations are off the charts. My blood pressure cannot be controlled.

    Because of those two things that are not reliable on controlling my pain. For these reasons I should unplug my pacemaker machine, and stop all medications for blood pressure. The main reason for doing this is I would rather be dead than live this way, and the reason I am making a comment is am I a good poster child for the criminal and inhumane treatment of pain sufferers. Would I make a better poster child to bring attention to the fact that thousands that are not drug addicts but need pain medication to control their pain are being denied their human right. Am I a better poster child for this injustice dead or alive?

  47. I’m a caregiver of patients living with painful conditions. One patient has been taking opioid medication for the past 20 years without any issues. In recent years doctors caring for my patient have been visited by the DEA. The DEA concluded all records of the patient’s medical history were in order and use of the amount of medication prescribed was justified. However, when the patient needed to establish new care many doctors would say prescribing opioid medication beyond the CDC guidelines would cause them to fear DEA scrutiny, and other doctors were only offering patients Buprenorphine addiction treatment and spinal injections at their practices. It has become very difficult for patients to receive proper care for their illnesses with these CDC guidelines being applied to chronic and intractable pain patients. The unnecessary suffering this is causing is inhumane and it needs to be to stopped.

  48. I am a healthcare provider that has been targeted by the state for prescribing pain meds as part of the armamentarium for chronic intractable pain care and control. It used to be standard of care, but the politics of the matter has changed all that. Now I am facing the dilemma – should I follow the law of God for compassion towards humanity or the law of man that is tainted with misinformation? The government has all the resources at their disposal to bring up anything that can go against the doctor’s oath and obligation to his patients in this era of government outreach towards doctors. To defend one’s standing, he or she may find the situation to be an exercise of futility. So I follow the path of righteousness, so help me God.

  49. What is between a doctor and a patient is none of the government’s business! DEA should have NO right to go into a doctor’s office and demand someone’s records!!! I have worked in both health care and in law enforcement. I am a person who is currently on no meds due to guidelines!! I have never abused meds and never popped hot on a test. I always tried everything natural before I would talk to my doctor about other options. I did absolutely everything that my doctor of 20 years told me to do. I took every test that he ordered! (I bet my insurance loved him!) I have been to a specialist in addition. The specialist said that I definitely needed to be on something but I would have to talk to my primary care provider. We started a plan which I followed. Sometimes I didn’t need them so I skipped doses. My pain was getting worse as years went on.

    Then after 20-plus years he took them away. He didn’t taper me off, he let me run out! I went through hell and he didn’t call me one time to see if I was okay. I refuse to go back to him just to have him walk in and grace me with his presence and charge me for absolutely nothing!!! I have no quality of life now. My pain is a drop in the hat compared to my elderly parents. That story is worse than mine. I have been diagnosed with so many different things but the doctors just look at you like I found out what’s going on now deal with it!😳🥴 So to the CDC, DEA AND COWARD HEARTLESS DOCTORS, A BIG F U!!! God bless all of you who suffer in pain with every breath for the rest of what is left of our lives.🙏

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