Opinion: Making Ourselves Heard

Opinion: Making Ourselves Heard

by Richard A. Lawhern, Ph.D.

The National Pain Report coverage has prompted many recent discussions on the CDC revised standards for prescription of opioids to chronic pain patients.  There are many reports that these standards — along with restrictive laws in several States — are causing doctors to reduce patient access to critically needed treatment.  Many of us feel that some sort of “action plan” is needed to challenge the CDC, though there are differences of opinion on what might work most effectively.  Eventually, patients may need to sue the government.  For now, I offer some thoughts for those who wish to make their protesting voices heard in letters to media editors or legislators.

There are basic realities in trying to raise public consciousness on any subject.  The most important is that if your words are to be published, then you must write from your own experience and you must write briefly, urging specific actions that other people who aren’t pain patients can get behind.  No matter how outraged and injured you are, you cannot expect news outlets to print attacks on named individuals.  Rambling narratives that start with “I’m being screwed by government bureaucrats” are also a non-starter.

So how might we be heard?  The following is one example letter.  You can fill in your own information before removing the brackets.  If tens of thousands of copies flood news offices, then somebody is going to pay attention.

Dear Editor [name, if you can find it]

I have been a chronic pain patient for the past [10] years.  After surgeries and various medications plus other pain management therapies that didn’t work, prescription opioids are the only treatment which has given me a partial quality of life.  But these medications are now restricted by my doctor because of changes in CDC practice standards.

I am one of over 100 million chronic pain patients in the US.  I am not an addict or a drug seeker.  I depend on [drug name] for pain control, but my dose is stable and I take no more than I absolutely must.  I get no “high” from these drugs.  Like thousands of others, I’m being cut off. My pain levels are climbing.  What am I to do?

Restrictive standards for prescribing opioid meds to people like me are condemning millions of pain patients to agony.  Some will seek street drugs.  Others will commit suicide.  And the fictitious “epidemic” of death will go on.

I urge you to help the voices of chronic pain patients be heard.  CDC practice standards must be withdrawn and revised.  Stop the war on chronic pain patients!

Richard A. Lawhern, Ph.D lives in Ft. Mill S.C. and. has authored many online articles and papers, advocating for chronic neuropathic face pain patients  for 20 years.

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There are 43 comments for this article
  1. Carol Hartsgrove at 11:20 am

    It’s our own governments causing this neglect upon the pain sufferers whom have exhausted all means before choosing opoid treatments. This is the only treatment left for many. We have human rights and our governments have taken them away. Health professionals should be able to provide opoids without unnecessary fear of sanctions for unintended violations including legal action in prescribing or dispensing opoids. It is called essential medications. Now because they have been allowed to violate pain patients it has trickled down to palliative care and cancer pain. This is unacceptable, cruel, inhumame and degrading treatment and not allowed. Barbaric treatment as in third world countries. Pain can and will kill many more if we do not unite. We are all tiny ripples in this failed war on opoids

  2. Krissy at 5:11 pm

    Dr. Lawhern, so great to read your contact to Ms. Brooks! I will go to your links and site. My RA and degenerated discs and bones caused two more breaks on my left hand. I am miserable. I just flew from Naples FL where I live, to Minnesota, for the birth of my daughter’s first baby. It is so exciting, but can’t handle flying lately. Every tiny bump is agony. I am going to try to find some kind of back support and pillow to fly with. There must be something out there to spend my disability money on this month (chuckle).

    ______________________

    Dr. Rodriguez, I hope you will stop commenting on the good intentions of other doctors here. If you have convincing and proven methods of your own for pain treatment, please submit an article here or somewhere. Where are you. what is your clinic like, how do you treat your patients, what kinds of diseases do you treat and what are the outcomes of your treatments? This would be a more productive way of showing us what you mean. Personally I still want to know about how my muscles have caused my bones to break, RA to settle in my joints, my back to deteriorate and my skin to hurt. Thank you.

  3. Therese at 2:47 am

    Thank you, Dr. Lawhern, thank you.

  4. Richard A. Lawhern, Ph.D. at 2:57 pm

    I’m uncertain if this may be too long as a comment to my own blog article, but the following seems to me pertinent in the process of “Making Ourselves Heard”. This is a posting that I made to 12,000 people in 12 Facebook Groups, an hour ago. For others who are interested in making their voices heard, this might be another example.

    ========================
    Congresswoman Susan W. Brooks of Indiana has introduced House Resolution 4681 to fund a Joint Government Task Force to recommend best practice standards for prescription of pain relieving drugs including opioids. If done well, such standards might address many of the weaknesses in the recent CDC voluntary guidelines on prescription of opioids in chronic pain. Done poorly, they could amount to an outright declared war on pain patients in the name of reducing opioid overdose deaths.

    I have posted the following comment on one of the articles on https://www.facebook.com/CongresswomanSusanWBrooks/ . I encourage other chronic pain patients to make their feelings known before the Resolution is issued finally as law.

    ================

    Congresswoman Brooks, I wonder if you would be open to talking with a seasoned (20-year) patient advocate and research analyst for chronic neuropathic face pain patients? I support over 12,000 chronic face pain patients and family members in 12 groups on Facebook. I wrote the US NINDS Fact Sheet on Trigeminal Neuralgia, and the Wikipedia article on Atypical Trigeminal Neuralgia. I have authored or moderated multiple online peer to peer venues in this patient population. One of your staff can easily check me out on Google.

    From this background, I wish to sound an alarm to you and others of good will. Opioid abuse and overdose deaths are indeed a major and real public health problem in the US. However, as summarized well in a recent invited article for Scientific American, “Opioid Addiction is a Huge Problem but Pain Prescriptions are Not the Cause”. This is only one of many knowledgeable and well researched dissenting views from the recently released CDC “voluntary standards” on prescription of opioids in chronic pain.

    I have heard from multiple patients who are being discharged from pain management or involuntarily weaned off the only medications that have given them even marginal quality of life. Doctors are being forced out of practice and pain patients are being left in AGONY because of these defacto restrictive practice standards. We cannot afford to wait until 2018 to rescind them.

    I encourage you or one of your staff to open a dialog at lawhern@hotmail.com. You may also examine some of my publications at my personal website (lawhern.org).

    Before you or others contribute to an unacknowledged and highly destructive war on chronic pain patients, please consider and think about http://blogs.scientificamerican.com/guest-blog/opioid-addiction-is-a-huge-problem-but-pain-prescriptions-are-not-the-cause/

    Sincere best regards,
    Richard A. Lawhern, Ph.D.
    Patient Advocate

  5. Stephen Rodrigues, MD at 11:09 am

    to BL
    That is an extra amount of information that you might find useful and that is people who are living in pain are all alone. Pain is not like cancer where you can rally people around you who are compassionate, sympathetic and helpful. That’s because cancer leads to death. And people are compassionate with people who are going to die.

    Chronic pain on the other hand which is embedded and scattered infinitely throughout your muscular system is 100% invisible. There is no technology which can find the exact location of muscular pain because it is infinite. The only medicine is your first hand testimony which no one seems to care about. So it’s easy for scientists and people to say, “you look fine why do you need my help” “It looks like you have an ulterior motive.” “You just want more pain medicine.” “Buck up and get yourself together.”

    The reality is that long-term pain sufferers get no respect, have no support systems, physicians don’t trust them, interventional pain managers only want to try to fix them with the wrong procedures within an incompleted concept, nothing really works which they can trust to their benefit on a consistent basis. Trapped in a twilight zone or catch 22.

    There are about 1-2 out of 10 folk on narcotics no matter how hard they try they cannot stop the opiate. It is so painful and distressing. Imagine if someone asked you to slice off layers of your skin with a kitchen knife. Although possible you would not voluntarily do it. Why would someone want to slice off layers of the skin when they didn’t have to. That’s the catch-22 of many millions of Americans who are now habituated to narcotics.

    Chronic pain sufferers are stuck in a complicated sticky web of lies and deceptions. And they cannot get unstuck easily without a team of mind, body, social security systems all working in their favor.

    In a for-profit capitalist society you all are commodities, the profiteers of this country have now employed the government to keep you all imprisoned to be picked apart for food, boats, fancy cars, mansions, diamonds, fur coats etc.

    These profiteers will not release or willingly free you all without a civil war. I compare this tragic and inhumane predicament with the American form of slavery. Or the Holocaust. It is too deeply embedded into the fabric of our society to be dismantled and reconstructed based on vetted science facts and altruism without a fight. Godspeed.

  6. Stephen Rodrigues, MD at 10:44 am

    The problems the US is having with pain, opiates, narcotics, heroin and abject misery is exactly because of close-mindedness.

    My agenda is simple. To expose as many people to the entire historical archive of knowledge so they can think for themselves.

    Rather than keeping them enslaved to the idea that a pain pill is there only Saving Grace.

    My job is to explain to them what works in their benefit and who and what works against their benefit.

    The treatment for pain in the body is simple; 1) recognize that’s a pain is from life and living and 2) this pain can only be stored in the muscular system. 3) So the pain can only be remedied by applying treatments that are designed to restore the muscular system.

    The human body will not tolerate being neglected. That is the cause of pain. To treat this pain all one has to do is not neglect their body. All they have to do is apply tender loving care to their body, Mind and Spirit and the pain will slowly dissipate away. Depending on how long you have neglected your body will depend on how long it will take for your body to restore.

    These are the optimal spectrum of options which are historically vetted, valid, holistic, safe, non-toxic, highly effective and restorative which are placed at the patient’s disposal to use as their uniquenesses needs: [based on 10 years of use in my office]
    Patient education on this pain disease with self-care, yoga and proactive care options @ home daily.
    Massage, Spray and Stretch, Joint and Spinal Manipulations @ 1-3 per week x 6 weeks then 1 weekly.
    Dry needling, Ah-shi Acupuncture @ 1-2 per week x 6 weeks then 1 weekly.
    Intramuscular, Intratendinous and Tendon-Bone Attachment Stimulative Injections and Needling @ 1-2 per week x 6 weeks then 1 weekly.

  7. BL at 4:08 pm

    Krissy, many drs are telling their patients that. The problem is that the patients don’t want to go through a short time of discomfort and pain in order to be better off. They also don’t want adjust their lifestyle. The pharmaceutical companies were the ones that lied to the drs and told them that it was safe to prescribe opiates at high doses. Time and experience has proven that it is not safe to prescribe opiates at high doses.

  8. Richard A. Lawhern, Ph.D. at 6:12 pm

    Doctor Rodrigues, please do not over-generalize to people whom you have never met — or examined as a doctor. Soft tissue injury is not the only source of chronic pain. Many in this forum are dealing with blunt force trauma, disintegrating vertebrae or disks, Psoriatric Arthritis, Lupus, or any of a number of other medical disorders that may not fit the treatment model you have in mind. Massage therapy or acupuncture can be helpful for some of them, some of the time. But neither is a one-size-fits-all solution.

    I realize that you believe strongly in the positions you advocate for. That’s your right and I respect it. But it is simply not constructive or helpful to tell people that they’ve been “set up” to fail — as if mainstream doctors were engaged in some kind of conspiracy to harm them. Please dial it back a few decibels!

  9. Stephen Rodrigues, MD at 4:11 pm

    You all have been set up to fail and fall off the deep end with no netting. Surgery will not help the complexities of muscle derived pain and pain pills are only a pacifier.

    So it does not spark any attention that we ALL have been set-up to be habituated to narcotics?!!

    To also basically only be offered unnatural and illogical surgeries over the holistic and corrective set of treatments for long-term pain??!!

    It’s so far of a stretch to believe a farce (the earth is flat) and not the facts that long-term pain can only biologically be located in your muscles??!!

    So wild and crazy that the perfect treatment for lower back pain is massage, stretching and range of motion exercises??!! [I has taken me 18 yrs of my 32 years to come to grips with this biological truth due to incessant brain training.]

    So wild and crazy that the perfect treatments for upper backache, neckache, shoulder-ache, headache, legache, buttache, face-ache and jaw-aches is massage, stretching and range of motion exercises??!!

    It is biologically impossible to treat or reverse pain muscles with doing nothing.

    It is pathology possible that if you do nothing about the pain located in your diseased muscles that they will get much worse.

    My suggestion is to help yourselves and begin to apply the hands-on pt w and w/o needles while you wait for the your pain support groups to rally in your behalf. IMO, thank you – pain support groups are not about you, me or the truth due to mission drift, from my views. Godspeed!

  10. Krissy at 9:55 am

    BL, unless you are a doctor, please don’t state that someone should reduce their medications and how they will feel if they do. You are giving medical advice and even the doctors on here never do that. If you are a doctor, please state that you are. Thank you.

  11. Krissy at 9:49 am

    Chris – you hit the nail on the head. Although some articles in big papers are coming out with softer voices (quoting doctors who believe in opioids whole-heartedly and are finally speaking out), IMO the legal route is what is next. Although, I believe we still have to continue to read, comment, write and speak out wherever we can. In other words, I wouldn’t want to see people stopping their fight; that would only appear that we’ve given in. So keep fighting no matter what!

  12. BL at 10:23 pm

    Kimberly Rosenberger, have you tried seeing a pain management dr ? Many pcp’s have and are deciding to not prescribe opiates to their chronic pain patients. It is up to each individual dr to decide what they will and won’t prescribe each patient. But, just because one dr won’t prescribe you an opiate does not mean that others won’t.

    If you are on a high dose of opiates, you may need to reduce them if you want to still be able to manage your pain with them. It does take at least a few months, maybe more depending on the dose you’ve been taking, but you can adjust to less meds. You will also feel better when the adjustment period is over and your pain will be managed better on a lower dose than it was on the higher dose. It does take time and it isn’t fun when you’re going thorough it, but it really is better for you. I know several people that have done this and they are able to do more now than they were before on the higher doses.

  13. Richard Oberg M.D. at 3:44 pm

    Here’s the abominable part. The Feds (CDC), the states, the media….. all howling about our opioid meds and how this ‘Epidemic of Biblical Proportions’ (a direct quote from our TENNESSEAN newspaper) must be stopped with 1200 deaths/year in our top 3 high outlier drug abuse state of over 6.5 million people. And now my inbox is full of ‘preventable medical errors the third leading cause of death after heart disease and cancer’ at around 250,000/year making the news again.

    Fine, use the bogus number of 28,000 nationwide dying of prescription opioids PLUS heroin and ‘our’ epidemic is still <10% of that epidemic. If you use the more correct and still-inflated figure of 19,000 just from supposed prescription opioids it's much less.

    How can anyone justify this foolishness AT ALL with a straight face? Because they can't be that stupid at math it would seem we most certainly have to look at the alternatives for a reason. I've heard some of the dumbest things from supposed 'very smart people' posing as physicians around here lately – has me wondering about their medical judgement period. This latest iteration of 'they just don't work for chronic pain' has really caught on becoming more important than the death rate – perhaps because they knew eventually that the latter reason wouldn't fly anymore.

  14. Chris Miller at 1:41 pm

    Having read many of these comments it seems the CDC and other regulatory organizations don’t care what we (the group here asking for more lenient restrictions on opioids) think and want. They’re not going to change their position from letters, emails, etc. from us. I think the only way to achieve what we want is going to be done through a lawsuit, possibly state-by-state. The U.S. Pain Foundation can do something very useful by serving as the plaintiff in the case–hiring lawyers, getting statistics and expert opinions, etc.–and using the contacts and legal knowledge it has. I’m sure a lot of people would be willing to contribute to pay the legal fees involved. Can the Foundation appoint someone to oversee this effort and organize the elements needed here?

  15. Therese at 11:12 am

    I’ve written it before somewhere, but for anyone who hasn’t seen or signed yet, there is a petition at MoveOn.org to withdraw the CDC guidelines. It is going to President Obama, the Senate, and the House of Representatives, and only around 140 more signatures are needed.

  16. Dave at 9:43 am

    @ Krissy- In our country we believe in limited self government- a belief that came from a time when government acted tyrannically and without the advice or consent of the governed. Now the CDC with their despotic opioid guidelines wants Americans to forget their history and to go back to days when government tyrannically imposed their will on Americans. The guidelines are un American and treat people in pain as serfs without rights. So they are wrong morally and politically. With regard to their evidence, the CDC is wrong to assert that their is no evidence of the long term benefits of opioids- they received testimony from many Americans that opioids were working for them for several years. The CDC decided that the experience of those that testified to the effectiveness of opioids was not of any value. And this goes to the heart of the immorality and incivility of the CDC guidelines-for essentially the CDC says to Americans who have used opioids effectively- that their experience doesn’t matter. They assert that only scientists have the right to make reliable assertions about the value of opioids. So clearly the CDC believes in moral exceptionalism and that peoples experiences with opioids are less then hearsay. The CDC also knows- that there are few effective therapies for pain, few doctors trained in pain care, and something about the terrible suffering that pain can bring to individuals. Despite that they cruelly decided to decrease options available for people with pain without a real effort to see other options are made more available and that doctors are trained in using other options.
    The individual and Americans as a whole should decide what access there is to pain care- not the government, not the AMA, or the AAPM, or APS. And so these guidelines will also weaken our democracy, will demoralize individuals, and will harm the relationship between people in pain and their health care providers.
    The CDC guidelines are a symbol of what is wrong with pain care in America and what is wrong with our government. Its remarkable the lack of caritas and humilitas the CDC and government has shown with regard to the millions of people in pain and out democracy.

  17. Kimberly Rosenberger at 12:55 am

    Experiencing the the issue that many are experiencing today with practitioners cutting meds back then sitting there saying to my face “It’s been proven that long term opoid use is ineffective” I’m outraged and have spent the entire day crying hysterically and even more outraged my general practitioner who’s known me for several years now has allowed herself to be “brain washed” by these new guildlines. I’m just beside myself. I’m living proof proper pain management, that is effective, works I’ve survived 20 years in chronic pain, making the most of it and I have done just that. I was told shortly after being diagnosed that I was done and little to no improvement was expected, that was almost 20 years ago, we all come from different walks of life and different situations. I will post more tomorrow if it will help to support the cause and have theses guide lines is. I’ve contacted my disability lawyer as well regarding the issue and how detrimental to me will not only affect my ability to work part at a hardware but maybe even at all which is my worst nightmare com I worked full time for years and both full time and a part time job for years, traveled around the country as a respiratory therapist, not anymore, pain’s too unstable, occupational health in these hospital jobs will laugh at my list of injuries then combined that with my medications and they’ll laugh even harder, no matter what my doctor says, been there done that. My MRI is not stable either I have one disc left in my neck that is unaffected. Unsure where my life will take me at this point, one thing’s for sure, I’ll be damned if I’m going to be left hanging out brcause

    ntal this could be to my

  18. Stephen Rodrigues, MD at 8:46 pm

    @Kathy Cooper. You are correct.

    Every American, MDs, researchers, academics, educators, professors and those who are living in pain have ALL been and are being deceived by the AMA, Wall Street Investors and the Federal Government – The Unethical Alliance. Our government is now in charge of this criminal minded racket genocidal system, they hold your well being and the keys to your freedom from pain. The original sinister actions was conceived and perpetrated in the 60s. Lead by the first surgeons of Trigeminal Neuralgia, spinal fusions and knee replacements. These unnatural procedures opened the floodgates of corrupted policies and procedure which are infected with science flaws. These are the men who started this mess and thus are the perpetrators of the deceit and your imprisonment.

    About 15 yrs ago, I discovered these surgical options was not the best options to help my patients in pain. There were noticeably too many treatment failures and quite a percentage said they were worse after they went through all of that pain and inconveniences. High failures treatments cannot happen if a treatment is a close match to remove the exact pain pathology at the source. A matched treatment should yield greater 80% successes and very few, <1% harmed.

    Then I discovered Acupuncture, Ah-shi acupuncture, dry and wet needle IM stimulation which are now my go to medicines for all ailments of the external body. These work perfectly in experienced hands to eradicate the exact sources of pain pathology in muscles.

    Now I’m 100% certain that many surgeries to fix pain are not logical or scientifically valid. These surgeries to quick fix long-term pain were simply made up out of the blue done by ignorance and arrogance. These “fix’em up” surgeries took off without oversight because the rewards were astronomically greater than the real treatment options. So the idea of removing skeletal parts and craniotomy for the treatment of long-term pain are unnatural, unethical and put into practice by for-profits over for-patients. These very common surgical procedures which are being used today do not work properly or accurately! These standard of care practices are wreaking havoc on many millions of American souls while no one seems to be interested in protecting these wounded Americans from further abuse, harm and legalized malpractice.

    So where is long term or chronic pain? This category of pain is primarily located in the muscular system all over the body.

    How to treat this type of muscular derived pain? Apply the full spectrum of hands-on physical therapy with and without needling until the pain is resolved. The logic equation: Pain in the body of muscles + hands-on physical therapy with and without needles = resolution of the pain.

    I’m now 100% certain that it is impossible for pain to primarily be exactly located within the skeleton, joints, vertebrae, discs, cranial nerves, peripheral nerves, nerve roots, cartilage, discs, menisci, or any other internal organ. (unless there is a smoking gun like in tumors, traumas, cancers or infections)

    I’ve also concluded that if anyone wants to escape this prison of torment, they will have to help themselves out of danger. Awareness, time, effort, intent, focus, tenacity, assistance, helpers and the correct knowledge will lead the way to peace and quiet within the body.

  19. Krissy at 6:50 pm

    I’M GOING up to Minneapolis next week and the Star-Tribune wants to interview me for an article. I commented directly to a writer about something else and told him a bit of our story. I said we need reporters to write the “real” stuff. You guys know my email. Please help arm me with some good points as I continue to gather them. Also, would like to find another MN pain patient who would be good in an interview.

  20. Richard Oberg M.D. at 1:03 pm

    Very well said Dave – many thanks for all your thoughtful replies and always a joy to see your analyses which are spot-on. I see no reason why our collective talents, experiences, and energies can’t be focused into something meaningful as have other causes you correctly state. I’m just grateful to have so many terrific people on our side without which this WOULD be impossible.

    I sometimes fantasize about a room full of us with Frieden, Kolodny, and some major media outlets – now wouldn’t that be entertaining. There has to be a way to organize a face-off with these untouchables and bring all this out into the open.

  21. Dave at 6:38 pm

    We can and should try many things to be heard and for our wishes to receive full and fair consideration by the powers that be in our pain care system and we should share our experiences in this regard so that we can learn from each other. We cant afford to get stuck on things that wont advance the cause of individuals suffering from our inhumane pain care system. That is the folly of the folly of the powers that be who believe their ways cant fail and that their will be no real backfire effects from people who care about people in pain. Let us tell them how wrong they are to assume that we will be silent or feckless when it comes to changing the sorry state of affairs they have consigned people in pain to.
    We could set up a site for just that purpose where we report on our efforts and make recommendations.
    Some say petitions dont work- but I kow they work for other issues like animal rights issues.
    I havent seen petitions to deans of medical schools to NIH, to insurers, to commissioners of health. Maybe ill create some in this regard.
    In any event, if there are costs in terms of dollars and time to the powers that be in pain care- they may relent. Their basic values and thinking on pain care is essentially flawed as they wish pain care to be done to people in pain and not with them- and so it is clear they dont respect individual rights and have no problem dehumanizing people in pain. In addition the evidence base for their ideas is weak and has little probative value- in fact their “facts” thei “evidence” is prejudicial and suffers from several logical fallacies. In addition it represents the “narrow path of approach” which disregards several important issues. So the ethos, and logos of our current pain system falls far short as they say.
    We need to present ourselves as more sophisticated and careful in our thinking and we need to have the higher moral ground. We need to get beyond just speaking about individuals needs but the collective good of people in pain and of our society.
    I think the troubles in pain care are a great test for our democracy, our ethics, and our willingness to care for others. We live in interesting times in pain care- but let us work to put an end to the suffering of individuals in pain as soon as we can.

  22. Richard Oberg M.D. at 10:45 am

    Kathy Cooper – I want you to know I agree with your assessment and really enjoyed reading your well written reply. I’m in particular not misled about your correct analysis of the ‘meta’ social factors that are very real including loss of the media as the fourth branch of government and other disturbing things very well stated.

    All of that being true however, the thrust of what I see going on among those similar advocates here is attempting to bite off what we can chew which is formidable enough and brings many of the factors you state as to why this is so difficult. I’ve never been into ‘nihilistic’ assessments because it’s not me for one, but no one would ever get anything done and some things do get done when enough people speak out. Focusing energy is better.

    Even with the oft used 100,000,000 in pain, that still means over 2/3 of the country are very healthy and most aren’t like many of our advocates here and just don’t care. A 66 2/3 majority would be considered a blowout in any election and far less than 100 million need to be on chronic opioid therapy which is no doubt overused.

    Though on a much much smaller scale, I’ve been in situations like this in our hospital most of my 30 year career. Things set in stone in serious need of change were uphill battles – yet I managed to eventually facilitate change on the majority of things improving/expediting patient care. Most never happened as quickly as I’d have liked and I had to adapt to accepting longer time frames for change – but realized with perseverance it happens even when most said it wouldn’t. It’s about being on the ‘right’ side of an issue and finding allies with similar points of view being careful not to alienate those on the fence.

    This quite frankly is the most black and white issue I’ve ever seen – you don’t wholesale eliminate care for large cohorts of patients with differing diseases, the vast majority of which have no complications whatsoever, by making up bogus data or positing bogus arguments. Certainly not from the tunnel vision of addictionologists who don’t exactly have stellar bragging rights on what they do anyway. Again, great discussion.

  23. Krissy at 8:49 am

    To Kathy Cooper:

    “All of you well intentioned People have been seriously misled.”

    I don’t believe that all of “us people” have been seriously misled. I believe we are smarter than you might think. I didn’t read anything in your post that us “well-intended” folks don’t already know. The problems aren’t that tough to figure out; the solutions are. If you have some ideas and solutions, it would be great to hear. Negativity breeds negativity. If we don’t conduct ourselves in a positive and hopeful way, then nothing will be solved — we want to be heard, just like you. And there are now a number of people in the medical industry and even in government positions who are coming out and saying chronic pain does need to be treated by opioids. The people who make those statements, backed up by numbers and facts, are the people we need to follow and reply to.

    If you really felt as negative as you sound, you would have no interest in commenting or even reading articles. Show us the side of you that has hope, show us what you believe should be done. We need everyone’s opinions, but we need forward-thinking and critical thinking that can help in some way. We are a pretty smart and informed bunch of people and I would be very hesitant to put us into a box of misinformed dummies.

  24. Richard A. Lawhern, Ph.D. at 6:53 am

    Especially for Lisa and others who share her concern “where should I write”, the following link may be useful. This is a listing of gateway portals and rules for each in US Media. The key “rules” for many are a limit on number of words allowed, and the requirement that the writer be local to the city in which the paper or media is published. There are enough gateways here that you should be able to find one near you, anywhere in the US.

    See http://www.ccmc.org/node/16179

  25. Stephen S. Rodrigues, MD at 8:53 pm

    Well Red, we have had a few discussions on what is true and not true.

    From my view as an MD and pain treatment provider, we all are caught in a sophisticated trap which was set-up in the 60s by a few physicians who gamed the system for profits. After 40 years and many definition deceptions and modifications these tricksters/racketeers have rigged our entire medical educators and healthcare system.

    These instigators got all of us to believe and promote “true to false” and “false to true.” True=pain in the muscular system. False=pain in the skeleton or nerves. This scheme was apparently easy to pull off due to biology of the human body coupled with the huge profits being made by investors, elite surgeons, hospitals also pushing this misdirection so everyone’s on board with believing, promoting, protecting the science fictions.

    Today this scheme that has now grown into a multi-billion dollar charade that is being governed by our Federal Government. All off your souls and under everyone’s noses due to the ease of the switch.

    It took me 18 years to figure it out and it is not easy to convince many of the deception. I was a part of the scheme when I was innocent, misguided and took it all in – hook, line and sinker.

    The idea that you can fix pain in the operation room, find it via MRI, make it go away with a single procedure, think that it is in the nerve, bone, joint, tendon, disc, vertebrae or head are all not about how nature and the human body works.

    Critical Factual Points:
    The most common primary location of pain is in the soft tissues of the body and can simply be treated with physical therapy.
    Long-term or chronic recurring pain cannot be located in the nervous system; brain, nerves, or nerve roots, in the head or mind, in the skeletal system; its components or an inflammatory process. These locations are impossibilities w/o an exact eradicable pathology.

    The simplistic facts of life:
    The treatment for pain in the body has and always will be physical therapy in the form of the hands-on variety which includes; massage, kneading, pulling, stretching, unwinding along with preventative proactive self care and education. These are the ONLY valid, vetted treatments for pain of life and living which is stored in the body, mind and spirit all caused by our chaotic world.

    The most profound discovery of all of humanity is the idea of using a thin needle as a PT tool. In reality the use of a thin filament needle is simply a physical therapy tool that can be inserted through the skin into the muscle to stimulate and activate the natural forces from within which is the true healer of diseases. C. Chan Gunn, MD concept and description “Intramuscular Stimulation” is the most exact and correct term to use in an advanced scientific society.

    So, Pain anywhere in the body is in the soft tissues + hands-on PT w and w/o needling = resolution of your pain.

    Without correcting the lies, it will almost be impossible to restore the integrity and altruism back into American medicine for those in pain. Good Luck Red!!

  26. Barbara Palmer at 8:29 pm

    I am a 61 year old grandmother who’s chronic pain Journey begin suddenly 5 years ago. Initially I destroyed my stomach for the first two years by taking 8 to 12 ibuprofen a day. That led to a severe case of gastritis and the inability to tolerate NSAIDs at all. With my doctor I have tried physical therapy for several years in a row, acupuncture, cranial sacral, myofascial release, combinations of Serotonin and norepinephrine drugs. I have experienced serotonin syndrome and am now allergic and/or highly sensitive to most medications. I have been on Vicodin for fifteen months now. Never in my wildest dreams would I have thought that I would be in the position I am in. It was very difficult for me to come to terms with the fact that the only way I was going to have any quality of life was to take opioids. I see my doctor every 30 days where my pills are counted and he and I consult about my pain. I have tried every possible alternative to opiod treatment that is available. The only thing at this point that gives me any relief is taking the prescribed dosage of Vicodin everyday. I also take a muscle relaxer. I take a very conservative amount they are for I am really not pain-free but it is manageable and that is all I ask . I didn’t ask for this in my life but I had to make a decision. My doctor and I made this decision together. To force my doctor to remove me from vicodin would be catastrophic for me. I am not an addict I do not get high from this medication. I am chemically dependent as anyone who would take an antidepressant or insulin or Humira would be. I know the difference between addiction and dependence. This is my story please listen to me. Untreated chronic pain is devastating to the human body and psyche. It elevates blood pressure and puts stress and strain on the heart. The depression of living in chronic pain is enough to drive anyone to drastic measures. Please understand this is my life that you are making decisions over. You do not know me you do not know what my doctor and I have been through together to get me to a stable place. Thank you very much for listening.

  27. Lisa at 7:45 pm

    These letters should be sent to “news offices”? Could you give some examples of exactly WHO we should send these letters to? Government officials? Newspapers? Television stations? All of the above? As a chronic pain patient I have a huge stake in what goes on with the prescribing of pain medications. Today, however, I am tired and fatigued and my mind isn’t as sharp as most days so, please, kindly give me some specific suggestions on who to send our letters to. Thanks so much.

  28. BL at 6:28 pm

    It might add weight if you give the specifics on how the CDC Guidelines have suddenly stopped your dr from prescribing you any pain meds . Also include, in quotes and reference exactly what the CDC Guidelines says about drs not prescribing pain meds. Without specifics, assumptions will more than likely be made that you are one of the patients that doesn’t need pain meds and should not be prescribed them.

    Personally, I think that the part about chronic pain patients turning to street drugs and/or suicide is a bit much. There is no evidence of the suicides that will be given any weight. Chronic pain patients have too much to lose if they are arrested with illegal drugs. I’m not saying no chronic pain patients will go to street drugs, but it will not be many. The risks and the costs far out weight not having pain meds. Drug addicts don’t think about things like this and those that do, don’t care about the risks and consequences of a drug arrest. Chronic pain patients need to separate what they do from what drug addicts do.

  29. Richard A. Lawhern, Ph.D. at 6:22 pm

    A note of thanks to Dr Oberg, Dr Ibsen, Dave, Martha, Martha, K. Rhoma, and others who have commented positively — and encouragement to all of us and others, to make ourselves known in public press and letters to governmental figures.

    In the coming weeks I hope to write a few blogs to the National Pain Report, outlining some ideas for discussion and thought, in moving forward toward better visibility and better outcomes for chronic pain patients. I don’t have all the answers in this, so the idea is to foster a “coming together” for people to collaborate in arriving at shared objectives and strategies to move our shared concerns off dead center. The writing and the process aren’t “about me”.

  30. HAZZY at 2:07 pm

    Iam a Disabled American Veteran, the V.A. hasen’t done a darn thing for me, gave me 12 tylenol 3 and sent me on my way. This was 15 Years ago, ive been taking Opioids for 13 years and haven’t had any problems with those. Now we have the government sticking their noses into Chronic Pain Sufferers bussiness. Our lawmakers need to leave us chronic pain patients alone and let the doctors do what they have to do to help us !!!!! I served our country for 20yrs since i was 17 years old and iam treated like a ADDICT which iam not. So Uncle Sam leave us alone and take care of the state of our country which is in as much Pain as we are!!!!!

  31. William Dorn at 1:50 pm

    Dr Lawhern needs to go on the news shows like Hannity.

  32. Jill at 1:02 pm

    Thanks to all of you who have given me a direction to take in fighting the CDC. But I believe that they are setting these guidelines in response to a social problem rather than a medical issue. We have a culture of young (and old) who need to get high in some form to have fun. This has always been the case, but today more so. Okay. So how does it make any sense to punish the law abiding patients (like me) who do not use opiods for fun. And why is it hard for the CDC to see the difference. This should be what we teach the public. We take opiods for pain, not for fun. When we educate the public we will get the CDC’s attention.

  33. Kathy Cooper at 12:12 pm

    All of you well intentioned People have been seriously misled. This is bigger than the CDC, it is bigger than any “Patient Advocacy.” Ask yourselves , how we got here. There is no “Being Heard.” The Media and the powers that be, have already made our voices useless. They have targeted any observation and dissent from this Juggernaut of so called “Health Care.” Look at eh Media Misdirection around the latest Celebrity Death. He had unlimited resources, yet he still succumbed. His death should have been counted as another person who was dealing with uncontrolled debilitating Chronic pain, instead he has been relegated to just one more “Drug Overdose.” One more of those disposable people that just could not cut it. He was another casualty of the “Opiate Epidemic” Another coddled celebrity who just was not strong enough to “Say no to drugs.” The Narrative has already been written. The same narrative they have been running for Years now.
    This is just one part of a False narrative they have used to bring together seamlessly a number of Social issues. Our failed Society, Poverty, hopelessness, Public Health, Crime, All of it. The Media is not keeping us informed, it is justifying all of our Social Problems. The lack of Education, leading to despair and Poverty is now “Urban Crime.” The Human Beings that have had to live with this are no longer human, they are some Media Described category of Others. No longer worthy of our concern.
    This is how it works, there is an alternate description for everyone who is not in the Millionaire class. The people whose spines have disintegrated due to years of low wage work are moochers. The few that did get Insurance or Benefits are one of the reasons we can’t get decent Heath Care. That is the narrative. This narrative was created by the Industry to point the blame elsewhere. Your Insurance would not pay for a Medical Examination of an Injury, while the CEO is on his 100 Million Dollar yacht at an event attended by the”Beautiful People.” This is not mentioned in the Mainstream Media. No one cares, they have been told repeatedly in the narrative that the people denied health care are “losers”. They want something for noting. Don’t pay attention to where that money is going, look at that loser. Now they want Opiates to control the pain of an unfix-able medical condition. We have drug problems in this Country. That is the reason we have so many disenfranchised. , That was the Media narrative.
    Don’t worry they have a solution, they have been using for a while. The VA and the Public Health Clinics have been working on this for 2 decades. No one was paying attention, since only losers end up at these places. Big Pharma has a Solution, instead of Opiates, costly Medical Interventions, even Preventive care. To anyone that returns for any reason. Pain and ongoing Physical Concerns, often bring people back to acsess health Care. Depression, PTSD and other Mental Health Issues too.. There is the Big Pharma answer, Atypical Anti Psychotics. They used to be for “Psychotic conditions.” Now due to the Power of Big Pharma and the need for an Inexpensive “Cure All.”for Depression, even that associated with a physical Health Issue and Cancer.
    The Distress due to any health condition, especially due to the distress of not having enough money to mitigate it or get adequate Health care. The ongoing failed Society, the lack of any hope for the future. Even the Traumatized, and physically injured Veterans have been getting this treatment. It was for their own good, the Atypical Anti Psychotics, they won’t cure anything, A steady regimen will not alleviate the Pain or distress, or the existential Pain for being a Human Being. It will dampen down any normal response to pain. It won’t go away it will just allow the Patient to be an automaton, to ignore this and and not expect any improvement from the System.
    A diet pf Atypical Anti Psychotics is the answer. They have been using it for a while no one paid attention. It was OK to use on Vets, the Poor, they have it all figured out. There should have been some outrage from the Medical Community, or the Psychiatrists, many have retired rather than deal with this Dystopian Future. The others have been indoctrinated. They won’t speak up their careers would be over. The Media, Big Pharma, and any other entities that Create Profit from the amplified message of these mouthpieces. They have no Scientific Basis, for their Claims, really Opinions. There is no discussion of Ethics, or Science, only a false narrative. They have stifled any dissent.

  34. Therese at 11:22 am

    Krissy, you have helped embolden me to start raising my voice (albeit under an assumed name). I never imagined that would have influence. And I’m glad to see that it’s important to comment at the source. I am not a Facebook member, but as a chronic pain patient, find myself searching most every morning for more news on this ghastly topic. Given my nature, I know it will take a little time, but I will speak up!

  35. MichaelL at 9:20 am

    As a pain management physician, I was sanctioned. I tried to prevent abuse of the medication, but it did not mean anything to those who would sanction. Now, I suffer from a post-traumatic neuropathy that I can barely get treated. The poor treatment with opiates mean that the physicians use things like gabapentin, that can have bad side effects. They are even more dangerous than the opiates! I have to risk my life, with the maximum dose of the meds!? The alternative is to let a pain doctor, who lied about the exhaustion of my treatment, put a Dorsal column stimulator in my back. The last time I had surgery, I was infected with MRSA! I don’t want any foreign bodies shoved into my spinal column! It would mean likely death if I was to develop MRSA in my spinal canal. It is sad that many have to consider suicide as the only way to get a cure for their pain!

  36. Krissy at 8:19 am

    One of the easiest ways pain patients can help to give a voice to our fight is to make comments after articles they read. Many of the articles on opioids, the government and current affairs in our plight are posted to Facebook groups (I post many myself) and I am astounded when I go to the article, and scroll down to make a comment, by how few people are commenting. This is a great way to take a stand and make your point!. THIS IS WHAT THE OPEN MEDIA SECTION IS FOR. Don’t be shy. You don’t have to use your real name if that bothers you. (However using your name over and over again to me is a good idea, but your personal choice). Commenting after articles is just one of the many opportunities we have to make a statement like the letter here by Dr. Lawhern. And don’t ever think the comment sections aren’t well-read. They are!

    As a writer, when I read an article I do two things first. I check the date of the article and the number of comments posted. Then I read and comment. If you don’t know what to say, use this letter as an example, write your own version and save it. Then you can easily copy and paste it (and edit it if needed) to the comment sections in other articles you read. Also, as a writer, when I post a story I rely on the comment section to tell me what readers are thinking. Good or bad, comments help me learn how to write better next time — and I learn new ideas and facts all the time.

    With our struggle and fight being so saturated in the media (but leaning toward the other side), we have hundreds and hundreds of opportunities to make statements this way. Commenting on a Facebook page is fine and good, and should also be done, but the editors, authors, interested readers LIKE YOU need to hear your thoughts at the original source. Lately when I have been posting articles to FB, I write a ditty above the post that says, READ, COMMENT AND SHARE, SHARE, SHARE. But I’m still not seeing enough comments. We need to start doing this on a massive scale and believe me, it will help us get heard.

    If you are one to be seriously involved in our issue, and/or have the time, put out Google Alerts on your email page with key words like, Opioids, Pain Management, Government Opioid, CDC Opioid, Doctors opioid, etc. Then the articles will start coming to your inbox. READ, COMMENT AND SHARE!

    Do this and you will have completed an important task and contributed to helping yourself and the rest of us.

  37. Chris Miller at 6:50 am

    I’m in the same position as Dr. Lawhern, but for 22 years. How do we join forces and get the lawmakers to take responsible people like us into consideration.

  38. Martha Arntson at 6:44 am

    Richard A. Lawhern: I applaud your post! I have read so many posts from people attacking specific individuals, companies or other. Some of them I can’t even get past the first few paragraphs without becoming totally frustrated at their writings! Not only are they not specific as to how they have been impacted by the new “Guidelines” as to prescribing of opiate drugs to particular patients, they ramble on and on about what their “diagnosis” is? Such as “I had several MRI’s showing at level A and Level B, this and that”, and how nothing else works for their pain except a SPECIFIC drug, which they can’t spell. What needs to be done is exactly what you put forth in your post. Specific direction as to stating how you, personally, have been impacted by the new Guidelines without using slang, accusations that are unfounded and misdirected so much so that there is no way these people are helping the cause which we are here for, to get our messages across to the right Government Agencies, Senator’s, Lawmaker’s, Drug Companies, etc. Thank you for your post, I hope more people respond in a helpful way!

  39. Mark Ibsen MD at 6:35 am

    Yes.
    And please mention the variability in opioid metabolism.
    It is on a curve, just like everything else.
    People who require a lot
    Also metabolize rapidly.
    Claims that dose limits are needed are false. Yes, just like in cardiology and oncology, the patients needing the most meds are the sickest, and most likely to die.

  40. Dave at 6:13 am

    The CDC, members of Congress, state legislators and Governors have acted despotically and cruelly toward people in pain in seeking to limit the pain relief provided by opioids and failing to offer effective alternatives. The CDC and states failed to assess what the effect of their new policies would have on people who have used opioids for years and people, who through the past neglect of government and the health care industry may not be able to obtain other effective treatment for their pain. These efforts on the part of government and industry reflect their longstanding prejudice toward people in pain. Clear proof of such- is the failure of most states to expand access to needed pain treatments or ensure that providers are required to learn more then a few treatments for pain. In addition, the National Pain Strategy- which took 6 years to develop- still remains unfunded- it is dead in the water. Interesting how the Federal government will spend an addition $1.1 billion to combat opioid and heroin which directly effects a small fraction of those in pain- and wont spend a dime on the National Pain Strategy.
    We don’t have to allow the government and providers to continue their cruel indifferentism toward people in pain. Silence is sin when protest is needed. If we continue to allow government to be cruel toward people in pain- we will only embolden them to continue on that slippery slope- and they will restrict access even more to pain care and make it harder even to claim you are in pain.
    Whether it is calling people in government, medical organizations, signing petitions writing letters- we can and should make a stand to oppose the despotic cruelty of government and providers toward people in pain. I have and I will continue to be unalterably opposed to their inhumanity. I have sent banners to my legislatures and will sign petitions- soon companies and medical organizations will be contacted. Lets restore common decency and common sense to pain care- now is the time. The dried voices of people in pain should no longer be allowed to remain mute and meaningless and as distant as fading stars to government and the health care industry.

  41. K. Rhoma at 5:55 am

    Thank you! Many of us do not have a starting point. You’ve just given us one.
    K.

  42. Richard Oberg M.D. at 4:06 am

    Richard (Red) Lawhern Ph.D. is one of the best and most involved chronic pain advocates I know of and we should all heed his advice quickly before we lose all control over our healthcare and our lives. In Tennessee, our major healthcare provider stopped allowing physicians to script for opioids of any dose for outreach chronic pain care in 2014 blaming new state guidelines and it’s now spreading to other similar major centers in all parts of the state.

    State officials correctly point out that the official state guidelines don’t recommend doing this; however, the CDC has ‘poisoned the well’ on this issue and both hospital systems (often with employed physicians who must follow the rules) and individual pain management groups are pulling out of using opioids for chronic pain care at ANY dose. When will this visit your state?

    I’d like to emphasize that it doesn’t matter who you are, what you do, how much money you have, or what your diagnosis is (there are lots of bad diseases in addition to failed back surgeries, etc. that cause severe lifelong chronic pain) – WE ARE LOSING THIS AND IT’S SPREADING.

    Just because you’re getting care in some state now and think this can’t happen to you – you should take heed. I was always worried that the excellent care we got from a local internist would stop because he was older than me and he’d be difficult to replace after he retired since few providers here ever ‘approved’ of opioids for chronic pain management. We were blindsided and I confess to never imagining he’d be forced to quit treating us as he’s employed by our large hospital system. When they tell you to stop you stop.

    This is an issue that should unite ALL of us and listen to what Dr. Lawhern has to say. In states like ours (TN) it’s going to be a lot harder to re-establish some normalcy and would be much easier to stop it before it comes to you. Once gone you may not get opioid chronic pain care for the rest of your life. THE CDC MUST BE STOPPED.

    If individual states won’t stop this nonsense we’re going to have to or we’ll be living a long sad life of unmitigated chronic pain much worse than we had to – or consider uncomfortable alternatives some already have. Get behind Dr. Lawhern NOW and let’s figure this out.