9 Pieces of ‘Health Advice’ It’s OK To Ignore if you Have Chronic Illness


Hello Luvs,

Well, I’m sure that you all have those friends &/or that family member who always has “advice” for your chronic illness? Don’t you just want to make them feel how you feel for about 30 minutes, at times? Let them feel the pain and suffer as you do, just for awhile? Better yet, don’t tell them that it’s only for 30 minutes! Let them think they’ll feel that way forever; for life! No end in sight just like you(us) and no cure! What if they thought they had to live with it forever? Do you think they’d be changed?

I get so tired of people giving advice, when they have absolutely no idea what it’s like to look pretty much “fine” on the outside; while feeling so much pain & fatigue.

9 Pieces of ‘Health Advice’ It’s OK to Ignore If You Have a Chronic Illness https://themighty.com/2018/12/bad-health-advice-chronic-illness/

Pushing Pain Patients into Labels “Opioid Misuse”


Hello Luvs,
My fellow advocate and friend, Bob Schubring sent me this message via email. I wanted to share with his permission. It’s regarding a bit of a turn around regarding this under-treated & untreated pain crisis. So without further ado, here is the message sending love & light:
“I’ve taken the liberty of clipping and dropping the entire article below.  It is compelling and I believe highly representative of the experience of many chronic pain patients.  Please feel free to reference these published findings in your own editorial or advocacy work.  I also attempted to submit a comment,  but NEMJ isn’t accepting input from non-subscribers.  I’ll look for a comment gateway direct to the editors. 

Title:  Reported Outcomes for Mister O are Highly Representative

As a non-physician advocate for chronic pain patients with 22 years experience, I see the story of Mr O repeated widely and horrendously.  The current regulatory environment on opioid analgesic therapy is grossly distorted by mythologies about who becomes addicted and from what sources.  Public policy is actively denying treatment to hundreds of thousands of people in agony.  Doctors are fleeing practice, deserting their patients;  those who do not flee are refusing the therapies that are often the only effective measures.

The largest mythology is the least acknowledged:  physician over-prescribing did not cause and is not sustaining our public health crisis in addiction and mortality.  CDC statistics reveal no cause and effect relationship between State by State prescribing rates vs opioid-related mortality from all sources, legal, diverted, or illegal. Contribution of medically managed opioids is so small that it gets lost in the noise of street drugs.  Moreover, the demographics don’t work and never have.  Seniors have the highest prescription rates and the lowest mortality due to opioids. People under 30 are six times more likely than seniors to die of opioids. 
Regards, 
Richard A “Red” Lawhern PhD

Director of Research

Alliance for the Treatment of Intractable Pain  

on Twitter: @theatipusa
Facebook:  https://www.facebook.com/ATIPUSA/
My Publications: http://www.face-facts.org/Lawhern
Personal Website:  http://www.lawhern.org

https://www.nejm.org/doi/full/10.1056/NEJMp1811473

Structural Iatrogenesis — A 43-Year-Old Man with “Opioid Misuse”

  • Scott Stonington, M.D., Ph.D., 
  • and Diana Coffa, M.D

Mr. O., a 43-year-old man with severe, destructive rheumatoid arthritis, had been receiving acetaminophen–hydrocodone at low doses from his primary care provider (PCP) for 15 years. He worked in an auto-parts factory in southeastern Michigan, and pain control was essential to maintaining his employment. His pain had been well managed on a stable regimen, and he had not shown evidence of opioid use disorder.
In 2011, his primary care clinic began requiring patient–provider agreements (“pain contracts”) and regular urine drug testing. Mr. O. participated willingly, and his tests were consistently negative for unprescribed substances. In 2014, his insurance company began to require annual prior authorization for all controlled-substance refills. Although there were small delays in receiving medication once a year when the authorization was due, the patient was able to keep his pain level stable on his usual regimen.
In 2016, Mr. O.’s PCP retired, and his care was transferred to another PCP in the same office, who followed the patient’s existing pain-management plan. The same year, the insurance company began requiring more frequent prior authorizations and then that prescriptions be sent to the pharmacy every 15 days. The new PCP was occasionally late providing these prescriptions and approving prior authorizations because of the required multistep interactions with the insurance company. Mr. O. did not own a car and had difficulty making frequent trips to the pharmacy. He began to have several-day gaps in medication. During these gaps, he experienced severe pain and mild withdrawal, as a result of which he performed poorly at work and received a citation. He became very concerned about losing his job.

Mr. O. made an appointment with his PCP and requested an increase in his number of pills, wanting to “stockpile pills so that I’ll never run out.” The PCP noted that Mr. O. seemed nervous during the conversation. She noted in the chart that the interaction “made her uncomfortable.” She knew that the previous PCP had reported that Mr. O. had shown no evidence of opioid misuse, but in the current environment of vigilance regarding the risks posed by opiates, she did not feel comfortable increasing the number of pills.

Three months later, the patient submitted a urine sample that tested positive for unprescribed oxycodone. When the PCP discussed the result with Mr. O., she learned that he had obtained oxycodone from a friend during one of his gaps in medication. 

The following month, oxycodone was once again found in his urine. Already overwhelmed by the frequent need for prior authorizations, and noting that Mr. O. had “violated his contract” by submitting two urine samples containing unprescribed opioids, the PCP referred him to a local pain clinic.

The wait time for an appointment at the clinic was 4 months. The PCP continued to provide prescriptions during that period, planning to stop prescribing as soon as Mr. O. had his first appointment. When he arrived at the pain clinic, Mr. O. learned that it had a policy of not prescribing opioids for the first two visits. Facing a prolonged period without his usual regimen, and having previously failed to obtain any “extra” acetaminophen–hydrocodone from his PCP, Mr. O. began purchasing his full narcotic regimen (in the form of oxycodone) from a friend.

Social Analysis Concept: Structural Iatrogenesis

Through a series of events, Mr. O.’s therapeutic relationship with his PCP deteriorated, and he became compelled to obtain medications outside the medical setting, which in turn increased his risk of overdose, as well as his risk of arrest for possession of unprescribed opioids. This shift was not precipitated by physiological changes in Mr. O.’s disease, need for medication, or personal attributes. Rather, it was caused by structural forces outside his control, ranging from clinic policies (pain agreements, a drug-testing initiative, a moratorium on prescribing) to corporate bureaucracies (insurance companies, factory management) to larger-scale social forces (poverty, lack of availability of transportation, lack of opportunities for work appropriate for someone with a painful condition).

We call this type of harm “structural iatrogenesis” (see box). Drawing on a long history of social science scholarship,1the use of the term “structure” emphasizes that Mr. O.’s poor outcome was determined by social forces and structures outside his control. The term “iatrogenesis” specifically focuses on the harmful role of bureaucratic structures within medicine itself. In Mr. O.’s case, many of these structures had been instituted to protect patients at risk for opioid use disorder: clinicians acted according to prevailing standards of care in chronic pain management; his prior clinic’s pain contract and urine drug screens were meant to prevent deviation from prescribed opioid use that might place him at risk for overdose or addiction; the pain clinic’s protocol of delayed prescribing was meant to prevent patients from “shopping” for opioid prescriptions; prior authorizations required by the insurance company were intended to reduce overprescription of potentially harmful (and costly) medications. But these systems were not beneficial to Mr. O. in the context of his economically and socially precarious life, which was shaped by a lack of transportation and a need to perform painful manual labor for economic survival.

Structural Iatrogenesis

Structural iatrogenesis is the causing of clinical harm to patients by bureaucratic systems within medicine, including those intended to benefit them.

Structural iatrogenesis is a type of “structural violence,” defined as the systematic infliction of disproportionate harm on certain people by large-scale social forces such as resource distribution and hierarchies of race, gender, or language.2,3 “Iatrogenesis” points to the causation of such harm by bureaucratic systems that are potentially under clinicians’ or health systems’ control.4

Clinical Implications: Stopping Structural Iatrogenesis

Clinicians who identify structural iatrogenesis may alter structures or create action plans to prevent them from causing harm. Generalizing from Mr. O.’s case, we would offer the following approach:


1. Recognize and alter structures that systematically harm patients.
 Clinicians may be the first to identify a structure that is systematically harming patients and can then advocate for or directly effect change. For example, in the 1980s, the Food and Drug Administration and physician organizations recommended that women undergo pelvic exams before receiving hormonal contraception. Some clinicians noted that these exams were a barrier to contraceptive access and stopped requiring them in their own clinics. By the 1990s, these local changes led to removal of the recommendation from national policy, which increased access to contraception and rates of effective use.5

Similarly, if Mr. O.’s PCP noticed that her clinic’s opioid-prescribing policy generated frequent gaps in medication coverage for patients in general, she could have advocated for a new approach. It’s important, however, to avoid the pitfall of thinking that structural harm emerges only from “broken” systems. All structures carry a risk of harm, even when they are functioning “properly.” 
The policy in Mr. O.’s PCP’s office might have been working well for most patients, but it turned out to be a poor fit for Mr. O.


2. Bend policies according to context.
 Attempts to standardize clinical care in order to ensure high quality often inadvertently lump complex phenomena into simplistic categories. Such oversimplification, in turn, can create structures within clinical care that harm patients more than help them. By questioning how such categories (such as “opioid misuse”) apply to particular patients and types of patients, clinicians can work to reduce the risk of structural iatrogenesis. The label of “opioid misuser,” for example, negatively affected Mr. O.’s care by failing to acknowledge reasons that he might be acquiring medications outside the clinic.
Similarly, clinic policies that penalize patients for arriving late to appointments disproportionately harm people who don’t own a car or control their work schedule. And policies of rewarding clinicians on the basis of quantitative measures of practice quality, such as reductions in glycated hemoglobin levels, may ignore complex disease interactions and the social factors contributing to diabetes and may create an incentive for clinicians to drop particularly sick patients. Instead, one might identify patients with particular vulnerabilities and adjust policies on the basis of their life context
3. Address implicit agendas head-on. Mr. O.’s care deteriorated when he was labeled an “opioid misuser.” This designation was putatively a clinical diagnosis, but it also marked a tacit category shift from “good patient” to “bad patient,” reflecting the mixing of clinical reasoning with moral judgment. Similarly, the insurance company’s rationale for requiring more frequent prescriptions mixed a harm-reduction agenda (reducing risk for addiction and death) with a profit motive (reducing payouts for medications). Mr. O’s poor clinical outcome was due in part to tensions between these implicit agendas. Clinicians often consider such agendas to be outside their purview, but given that they have such a significant impact on clinical outcomes, it may be more effective clinically to identify these agendas, assess their interactions, and decide which ones to prioritize. The staff of Mr. O.’s clinic, for example, could recognize the moral judgment involved in the diagnosis of “opioid misuse” and instead set an explicit goal of identifying behaviors that could increase a patient’s risk of addition, overdose, or dangerous side effects. They could then assess whether their established protocols were achieving that goal and how to balance it with other goals.

Case Follow-up

At Mr. O.’s next visit, his PCP expressed concern about risks of overdose and legal harm from use of unprescribed oxycodone. She persuaded him to return to the pain clinic, and in the meantime she agreed to continue prescribing his opioids. A medical assistant appealed for an exemption to the insurance company’s 15-day prescription rule, citing Mr. O.’s lack of transportation, fragile work circumstances, and long-standing treatment. At the time we wrote this article, it remained unclear whether these modifications would stabilize Mr. O.’s treatment and prevent his use of unprescribed opioids.

Disclosure forms provided by the authors are available at NEJM.org.

The editors of the Case Studies in Social Medicine are Scott D. Stonington, M.D., Ph.D., Seth M. Holmes, Ph.D., M.D., Helena Hansen, M.D., Ph.D., Jeremy A. Greene, M.D., Ph.D., Keith A. Wailoo, Ph.D., Debra Malina, Ph.D., Stephen Morrissey, Ph.D., Paul E. Farmer, M.D., Ph.D., and Michael G. Marmot, M.B., B.S., Ph.D.

The patient’s initial and some identifying characteristics have been changed to protect his privacy.

Author Affiliations

From the Departments of Anthropology and Internal Medicine, University of Michigan, and the Veterans Administration Medical Center, Ann Arbor (S.S.); and the Department of Family and Community Medicine, University of California, San Francisco, San Francisco (D.C.)

Anti-Opioid Zealots


I opened up facebook to see that a person who calls herself an “investigative reporter”; doesn’t actually have a clue about the subject for which she stands upon her soapbox and spews hate and prejudice! Her hate speeches, disdain, lack of knowledge & empathy for the chronic pain community are outrageous. She also states that she’s a pastors wife! Which in a stereotypical sense, should make her more kind, loving & empathetic (on the contrary). I’m definitely not a cold or callous person. I deeply care about others & especially my fellow chronic pain patients. But I pity her in her for the way she’s unable to get help for her grief. I’m terribly and deeply sorry for anyone who’s lost someone that they love to any kind of addiction. She lost an adult child to overdose of prescription opioids. She’s made it her fight in life now, to rid the world of the “evil narcotics”. Do you think she knows that the statistics prove that only 1-3% of prescription opioids ever result in overdose?Check out this new report from the Cato Institute

It’s the illicit fentanyl and Cara-fentanyl from Mexico & China that are the problem! It’s not legitimate chronic pain patients with legitimate prescriptions from licensed pain management physicians that are to blame for this manufactured “opioid crisis”. The opioids are only a tool. Just as guns, kitchen knives and cars are all tools. These tools don’t kill people any more than opioids “kill people”! There’s a genetic link to addiction. There’s also a distinct difference between addiction and being dependent physiologically to a medication that one has taken for several years to decades. With addiction, the addict must make a conscious decision to get the meds, tell lies, keeps secrets and physically take the increasing amounts of drugs to give them a “high” or a euphoric feeling! They ruminate look at the clock, just waiting for their next fix! Chronic pain patients, for the most part; were never given the “luxury” of a choice! Most are people living the rest of their lives with high amounts of ongoing daily chronic pain; with no end in sight! The average chronic Pain patient, is living a life sentence in agony through no fault of their own! Usually an unsuccessful surgery, freak accident or a motor vehicle accident. Today we have an “under & untreated pain crisis”, with suicides from pain mounting in numbers weekly. A very knowledgeable and vocal physician and chronic pain patient advocate, Dr Thomas Kline, MD, has kept a record of these rising number of suicides.

Chronic pain is in fact a disease; as explained in this article in Health Magazine (February 2016) and in many other news articles. It’s Origin is Neurological. Scientists now believe that one cause of chronic pain is a dysfunction of the nervous system & includes the misfiring of nerve signals long after an accident or injury. According to this article: http://amp.timeinc.net/health/health/condition-article/0,,20187942,00.html, Neurons (cells in the nervous system that communicate with each other) become overexcited and keep firing, even after the original cause (injury or illness, in some cases) has long since passed. The person receives persistent pain signals.

If I may be so bold as to speak for the majority of the chronic pain community, we are not insensitive or calloused persons. In fact, I’ve never met a more caring, empathetic group of citizens. We care very much that people have lost their family members to the disease of addiction. We grieve for their loss of lives and love.

But we are grieving too! We have had so many deaths due to either suicide, untreated or under treated chronic pain since the CDC Guidelines appeared in 2016. Read this: Article by Dr Jeffrey Singer MD, Cato Institute. Dr Singer states that, “patients have become the civilian casualties of the misguided policies addressing the opioid crisis.” These “guidelines”have somehow become “law” to the majority of anti-opioid zealots; along with many physicians and pharmacists!

I wrote to the CDC and if you look at their response to my letter here(*& in photo below) A Response letter sent to me, from Exec Secretary of CDC, they state that “the CDC Guidelines are not meant to be rule, regulation or law. It’s not intended to deny access to opioid pain medications as an option for pain management”. I also agree that nobody should be denied pain care. That these are just supposed to be nothing more than guidelines. They weren’t meant to become the Law!!

Now there are admissions of the over fabrication of statistics by the CDC. Also, the AMA has come out with their own resolutions to these Draconian CDC Guidelines. You can find what they’ve written in this article by The Pain News Network https://www.painnewsnetwork.org/stories/2018/11/14/ama-calls-for-misapplication-of-cdc-opioid-guideline-to-end

This person calls herself an investigative reporter. People like her feel that because they have an audience & a platform; that they can stand on their soapbox and spew misinformation and hatred due to unresolved feelings of loss and grief! But they are just plain wrong!

When I opened up Facebook to try and reason with her. To attempt to discuss and/or debate like adults; I found that her page was blocked from any comments or discussions. That’s when you know you’re on the side of light and good. When you’re willing to discuss hard subjects in a civilized manner. But when discussions are cut out and blocked; that’s when we know that a person just wants to pontificate and spew hate!

Lastly, I wanted to add that this person should be in violation of the ADA, for her written comments regarding Cindy Steinberg. She made derogatory remarks about Cindy, a very well known pain patient advocate and friend of mine! I don’t think she is allowed to say the things that she said about Cindy supposedly being “theatrical” because she used a cot in between her statements regarding the opioid hysteria. This reporter even went so far as to say that Cindy was “laying in her her cot while testifying to Congress.”! Gee, I saw the video and it sure appears that she’s sitting in a seat discussing the situation in an intelligent manner. Here is part of Cindy Steinberg’s message:

“In the near term, we can and must restore balance to opioid prescribing with depoliticized, rational and cleareyed recognition of the risks and benefits of these medications,” she said, according to her prepared remarks. “In the long term, we must invest in the discovery of new, effective, and safer options for people living with pain.”

What’s wrong with that message? How could any sane person find something incorrect or one-sided, with that direct quote”. On the contrary, Cindy spoke intelligently! She discussed ways to help end opioid hysteria and the under-treated/untreated pain crisis today!

Lastly, if this one-sided, so called “investigative reporter”, would share an ounce of the truth with her readers; she’d have not lied about Cindy “laying in a cot while testifying to Congress”. Cindy, as you can see from the video of her testimony, is sitting upright in a chair as she speaks to Congress. But would there have been a problem if she had been in a cot while testifying? NBC & this reporter could very well be violating the Americans with Disabilities Act? In what world is mocking a disabled person OK? Isn’t there an ADA law that calls for accommodating persons with a disability?

Below is a photo from a portion of the return response letter that I received from the Executive Secretary of the CDC:

Here are some great resources for those who are skeptical of my words here today:

  • ALSO: Here are a couple of articles written by the person being referred to in my article today:
  • Lastly, I just want to add (so that I an not accused of being a “mouthpiece” for the USPF) that I resigned from the US Pain Foundation in September 2018; after only 8 months as a Board Member & 3 1/2 years as a volunteer Ambassador. I was planning on staying to try and help them rebuild. But the moment that I felt my integrity was challenged, I resigned.
  • Please send Your comments Re: HHS Draft for Pain Best Practices


    Hello Luvs,

    I just wanted give my readers a little “nudge” & remind you all to visit the The HHS Task Force online, which has provided a 90 day public comment period (ending April 1st,2019)

    Click here to post your comments re: the HHS Draft for Best Practices (90 day comment period)

    ****In the Search Box, put these words so you’ll get to the correct place for commenting: HHS Draft for Best Practices.

    I implore you to send in your comments. This is our chance to have our voices heard. Please go to the above link, in order to have your voice heard regarding the Draft Report to HHS. * my comments are copied & pasted for you below.

    There are three different ways that you can send in your comments regarding this Draft report:

    **When you write, email or post your messages regarding the Draft Report, please refer to this Docket Number:HHS-OS-2018-0027

    How to Submit Comments:

    1) Visit this Federal Portal at: http://www.regulations.gov

     2). Or you may Email topaintaskforce@hhs.gov

    3) or use USPS and you may Mail written comments to:

    U.S. Department of Health and Human ServicesOffice of the Assistant Secretary for Health200 Independence Avenue, S.W., Room 736E,Attn: Alicia Richmond Scott, Task Force Designated Federal OfficerWashington, DC 20201

    These are my thoughts. I will be condensing them into being my comments to the HHS Best Practices (again, comment period goes until April 1,2019:

    • I agree with the “individualized patient centered care”. But allow the Dr./Patient relationship to the determine treatments. But don’t allow the government, pharmacists/pharmacies, to override the treatment, including type, class & dosage of pain medications. Pain management Drs. went through, in many cases; 14-15 years of extra education. They know more about what’s best for the patients.
    • Opioids taken as prescribed, have less harsh & lasting side-effects than many other medications that are prescribed freely for patients today (such as Bupenorphrine, Suboxone)
    • 1) Many medications can cause death, if an overdose occurs.  2) Many medications can cause physical dependence, including heart, blood pressure and even insulin.
    • Pain Medications shouldn’t be decided on by what illness(es) a patient is living with. Pain is subjective and the CDC, in their 2012 response to Andrew Kolodny, stated that there was no research to prove that there’s any difference between cancer and non-cancer pain. Mr. Kolodny was trying to say that cancer pain was the only worst pain. There are a number of illnesses nicknamed “the suicide disease”,( including: RSD/CRPS, A.S., T.M. & others). People with comorbid highly painful conditions, should not be lumped & labeled as a sum of their illnesses. Everyone metabolizes differently. Some people may do well on a certain medication, while it makes others desperately more ill (due to the horrible side effects).
    • Nothing should ever be dictated “across the board” . Never should one rule be applied to 100 million chronic pain Patients. Some people living with illnesses such as Ehlers Danlos syndrome, for example; don’t metabolize medication like most other people do. They may need a much higher dosage than what the recommended ceiling of 90MME allows. By the way, when did recommended become law?
    • The CDC Guidelines were supposed to be just recommendations for General practitioners. But not even a year later, pain management Drs started being hassled by the DEA & other government & law enforcement officials. In 2018, they turned into “laws”. In many cases, good Drs. Have been losing their livelihood, their entire life’s work, because the DEA thinks that they had too many pain patients taking higher doses of opioids! It’s normal that Pain clinics would have a much higher number of people taking higher dosages of opioids.
    • Many persons who are living with several lifelong chronic painful illnesses, do not wish to have: massage, Reike, acupuncture or anything involving touching. People for example with CRPS, (systemic especially), cannot bear the pain of touching like this.
    • Many of those who live with horribly painful Rheumatoid disease, Neuropathies, Ehlers Danlos Syndrome & others, may get worse from doing things like Yoga, Tai Chi and even PT. (I had 9 years of PT & it made me worse & not better,many times)
    • Meditation most often doesn’t work well for the patients living with anxiety &/or PTSD, for example. *If it does help a little; it still does not lower high amounts of pain for the rest of someones life. Not enough to give someone their life back after a catasrophic painful event.
    • Why should anyone be forced to get an invasive surgery over taking a simple oral pill? Again, any medication is dangerous if taken incorrectly or by a person other than the intended patient. Therefore demonizing only opioids makes no sense.
    • Many persons aren’t candidates for the SCS and/or intra-thecal pain pumps. Many living with several painful illnesses have also compromised immune systems (CVID +others).
    • It appears that nobody on this HHS task force lives with chronic pain, in high amounts, due to lifelong, high pain chronic illnesses? Because they should know that no amount of meditation, injections or tai chi, would end ongoing continuous life long chronic pain!
    • *meditation, music therapy and aqua therapy may help to lessen pain for a short period of time (**if the patient doesn’t have an aversion to being in water or have open sores due to secondary illnesses)
    • As you can see, there’s no one fix for everyone. Mostly because we are individuals who must have individualized care. Nobody should be putting one group of persons with physical chronic pain or PTSD, ahead of another group of survivors. You don’t know what horrors anyone has been through. A soldiers PTSD may be horrific. Also horrific may a grown up’s PTSD. Someone who had lived a life of horrors in their own home (which should’ve been a safe place), at the hands of abusive family members.
    • Please don’t prescribe dosage limits “across the board” for everyone. That’s not keeping with the physicians code of ethics “to do no harm”!
    • Don’t pick & choose what medication or dosage by each illness or condition. Some medications work for one person and don’t help others
    • Give the physician back their right(after years and years of education & experiences) to diagnose and treat people with ongoing lifelong pain. Keep the Dr/patient relationships together, without intrusion or interruption in patient care!
    • Please keep in mind that chronic pain does not = addiction.! Just because someone needs opioids to help high amounts of pain (*that will most often, never go away), does not make them an addict. It shouldn’t give them the label of “substance use disorder” either!
    • Do Not make the Hippa privacy laws a joke or obsolete. Confidentiality matters! In order to have any confidence in your health care team, you must trust them. What I’m saying is that the police departments and other employees of the government or anywhere, should NOT BE GIVEN ACCESS TO THE MAPS*! The MAPS are already invasive enough without giving access to everyone!

    There are a few good parts to the draft:

    • The suggestion to treat each patient on an individual, patient by patient basis.
    • Stop raiding innocent Drs offices.
    • Stop taking physicians livelihood/careers away because someone at the top of the ladder at the HHS, CDC or elsewhere; lost a brother, mother or best friend, to opioid abuse &/or addiction, that ended with a death, loss and then turned into bitterness!
    • Give more hours of education in pain management to medical students

    Lastly, opioids are a safe, effective and an inexpensive way to treat lifelong chronic pain, for many patients in this category. They help & work for so many! Especially legacy patients with multiple high pain comorbidities, depend on opioids to have some semblance of life. I know, because it happened to me and I lost my LA/ER pain medications in Sept 2018. I have a much less full life now.

    The PTSD, that chronic pain patients are living with after being legacy patients who had been doing well taking opioids for a decade or two or three, is a nightmare! People are becoming a shell of their former selves. Persons with multiple & painful comorbidities, who were able to possibly do a job, be a mother, father, caregiver or grandmother, while taking opioids (*also btw, never getting high from their opioids!); are doomed to live a half-life in bed or a recliner forever. Many are committing suicide.

    I read some nasty comments on an article recently (I’ll look for that article. Sorry, I can’t remember where I saw it, but I will find it and post for you asap). There were comments from a person who lost someone to an opioid overdose/addiction. She said she was  “tired” of hearing about pain patients contemplating suicide. Tired of seeing where chronic pain patients have written in whining that “if they don’t get their pain meds back they will kill themselves”. Well, I pity that lady because she’s obviously never gone through anything that involves long term, never ending high amounts of chronic pain. The chronic pain population needs to know that there is hope. Because someone doesn’t contemplate suicide, where there is “Hope”. So someone please tell that woman to “chill out” and to “be kind”. Also, tell her not to cut down, put down, belittle or be insidious about life long, never ending, high amounts of daily chronic pain.  Unless she is in my shoes/our shoes, our wheelchairs, walkers, crutchs, braces and motorized scooters, don’t judge!

    Unless you’ve lived with high levels of continuous chronic pain that you know will never ever stop; don’t judge the chronic pain patient who chooses suicide over being a burden to their loved ones. Maybe they have no loved ones and cannot bear to be alone forever with such high amounts of under-treated or untreated pain? Don’t judge someone who’s been doing well for over a decade and suddenly they lose their pain relief and they’ve resorted to “living” a half-life in their bed or a recliner.

    These drafts really need more work. There are a lot of contradictions. Tylenol/Acetaminophen is very dangerous and can kill it cause liver failure if taken continuously. Which is what a chronic pain patient will need! NSAID’s cause kidney failure and anyone who thinks Tylenol or Aspirin will help pain levels at a 7,8 or above; doesn’t know anything about pain. In fact, they’ve never lived with ongoing chronic pain illnesses that are Incurable.

    Lastly, meditation, grounding, yoga & aqua therapy are nice for PT patients rehabilitating. They’re fine for some people as an addition to pain medication therapy. But they’ll never work alone to end or relieve high amounts of pain for a person who will most likely need pain control forever. It’s just impossible for anyone to go several times weekly and pay for PT forever! Not everyone has access to a pool. Then there are those of us who have open sores from secondary illnesses or from systemic autoimmune and other issues. I’m sorry, but “grounding” is just silly and I’m entitled to my opinions; as are each one of us.

    The above paragraphs are my thoughts about some of the HHS Draft for Pain Best Practices. I’ve got to condense these thoughts so that I can actually leave a comment. With the government shut-down, I’m not sure exactlly what will be happening to this side of things? If I find out any more, I promise to inform all of you.  But lets still get those comments posted before April 1, 2019. If we follow the rules, then hopefully someone will hear us. If we wait to see what happens, it may be too late.

    Remember not to be long winded. My comments will be condensed version of my issues with the HHS Draft. I will post it for you once I’ve gotten it all set up on the .gov website). Tell them who you are and how you feel about the HHS Draft for Pain Best Practices. Let them know that there are many contradicions in this draft. There are so many things wrong with telling someone who is living with #’s 7,8 or 9 on the pain scale, to take NSAID’s or Acetamenophin. Theres definitely something ludicrous about taking opioids away from someone who’s been doing great with them for a decade or two or three. Opioids are harmless, with very low or no side effects. When taken properly as prescribed for long term chronic intractable pain.  On the other hand, if you research Suboxone and Bupenorphrine. They have horrific side effects and you cannot taper off of them slowly because the medication works against you if you attempt to do this. I have  received several written accounts from chronic pain patients who believed in their physicians and blindly took what was offered to help their pain, as a last resort. They thought it would be better than nothing. (*these accounts will be in a future blog post).

    MY OWN COMMENTS:

    I have been living with high amounts of chronic pain on a daily basis since a catastrophic car accident in 2002. I did all that was asked of me as far as having 8 surgeries, 9 years of PT, 3 years of TBI rehab and 3 years worth of pain clinic Biofeedback and  injections to my knees, shoulders, neck and spine.  I am not a candidate for a pain pump, due to CVID. I tried many medications and most either made me deathly ill or just had horrible side effects that added to the pain. My story is not unique. Many thousands of chronic pain patients attempt to do all that they can do, prior to taking opioid pain medication. When pain is lifelong, whether you are old or young; the idea of staying in a state of high chronic daily pain for decades upon decades, is daunting.

    This draft needs much more work. There are too many contradictions.  There especially needs to be more done for the legacy patients who have been doing well on Opioid therapy for chronic pain.  Legacy patients, like me, are being put into “no win” situations. We have had our medications forcibly taken after doing relatively well for years. Forced tapering is bad for anyone.  It is life altering, dangerous and has taken lives. Why would you mess with something that is not broken?  If someone has been doing well, how could you fathom stopping the regimen that gave them some semblance of a life?  Then what? Then these people are unkowingly prescribed horrible meds like Buprenorphrine / Suboxone.  After much research, it seems like most of this manufactured “opioid hysteria” is for money making. That is shameful to use and even kill innocent people just to allow someone else to get rich.

    Why are we making insurance companies pay for all of this acupuncture, massage and yoga etc? Those dont work for long term chronic high pain illnesses where the patient deteriorates as the years go by. The majority of chronic pain patients that I know, say that they don’t want to be poked or even touched, because it hurts too much. This is not a solution. Please try to understand the reality of this situation. Don’t allow people who are living with high emotions, to be in positions of power, in charge of important decisions for the chronically ill. Persons with powerful positions who are greiving & who have lost someone from an overdose shouldn’t be making decisions that affect & involve millions of lives. Most people who have lost a family member or close friend from an overdose, won’t be rational in their decision making. Then they end up punishing an entire community of innocent people because they lost someone (*usually their loved one had overdosed by taking someone else’s prescription or illegal/illicit drugs to numb psychological pain).

    Please stop demonizing Opioids and selling the idea that these inanimate objects cause addictions and drug overdose. Addiction is a gene that someone is born with. It shows up in some people and not others. Opioids do not kill people any more than guns kill people. It is when the opioids or the guns who get into the wrong hands. Then the people behind them choose to make terrible decisions and others then die from drug overdose, homicide or suicide. Please remember that opioids are inexpensive, accessible (or they were) and they have few or no side effects. They have been helping many chronic pain patients for years and years. The medications are not “bad”, it is the people who obtain them illegally and then do things to the medications or with them, other than the intended purpose. That is what is dangerous and killing people. 

    Chronically ill persons living with high pain illnesses cannot take Tylenol or NSAID’s for the rest of their lives without horrible effects and outcomes. Those medications are not made for long term. They cause liver and kindney failure and worse. Also, this same group of ill citizens, are usually unable to do or pay for complimentary therapy treatments for decades at a time. Lastly, please leave the pain care physcians or any physician trained properly in the management of chronic intractable pain, to make the decisions that affect the pain community. These Dr’s have been highly educated for many extra years, in order to learn how to treat chronic pain.  Stop politicians, PROP, Addiction specialists, pharmacists, the CDC, FDA  and insurance companies from making medical decisions that should be left up to the Dr. and patients themselves. Thank you! Sincerely, Suzanne Stewart

    Health experts offer solutions for unintended consequences of opioid crackdown | Fox News


    Hello Luvs,

    This information came to me via an email & so I wanted to share it with you:

    The most urgently needed first step to addressing the misunderstandings about Centers for Disease and Prevention opioid prescribing guidelines, many clinicians and health experts say, is for the agency to clarify – in a high-profile way– what the guidelines were meant, and not meant, to do.
    — Read on www.foxnews.com/health/undoing-the-harm-of-the-response-to-the-opioid-overdose-epidemic-health-experts-suggest-solutions.amp

    Also, here is The Fox News Sequence of Stories Regarding the Opioid Hysteria & Chronic Pain Patients .

    One of several very special physicians, who’ve been helping fight for the rights of Drs and chronic pain patients is Dr Stefan Kertesz, MD. He is quoted in this article on Fox News:

    • “We’re targeting the most vulnerable and sickest people who have been on opioids a long time”.

    Dr. Stefan Kertesz, addiction specialist and professor at the University of Alabama at Birmingham School of Medicine.

    Richard Lawhern, a very staunch advocate for chronic pain patient community; is also quoted in this report. He is also advocating for his wife daughter, who live with chronic pain. Here is the quote from Richard aka “Red” Lawhern:

    • “The [CDC opioid guideline] document is fatally flawed and needs to be withdrawn for a major revision in an open public process by qualified experts in community practice for chronic pain treatment, assisted by representatives or advocates from chronic pain communities.”

    — Richard Lawhern

    Lastly, Lauren Deluca, founder of Chronic Illness Advocacy & Awareness Group“,(an ever growing & popular Non profit 501/3c) is quoted here:

    • “Too many flawed approaches and policies targeting pain patients, she said, “will take many years to undo, but we can’t wait years.”
    • She also was quoted as saying this: I myself was a healthy 36-year-old professional embarking on starting a family and in a blink of an eye my life was destroyed due to a denial of care,” Deluca said. “It’s not just about pain; it’s about quality of life. Now we are teaching doctors to ignore pain, which not only leaves the patient suffering but likely will lead to many not getting diagnosed, therefore not only will they not receive pain medications they will not even receive basic care.”

    Please read the entire Fox News series of three stories. They are focused on different aspects of this Opioid Hysteria. Also the lack of treatment and compassionate care for the chronic pain community. *The current story, (3rd in a sequence of three), and the other stories in the sequence can be located above. They are the first two, blue hyperlinks, near the top of this blog post.

    Lastly, I wanted to share something on the same subject but different platform. As I mentioned above, Lauren Deluca is the founder of CIAAG. (a Non Profit 501 c-3. The link to her group website is above, but let me add it here for you as well: Chronic Illnesses Advocacy: & Awareness Group)

    Link to The Documentary Trailer “Untreated: The Healthcare Crisis”

    She recently attended an International Meeting with the United Nations in Vienna. According to her website, Lauren spoke about the inhumane  treatment chronic pain patients are facing due to the ‘Opioid Crisis’ in the United States. 

    Here’s is a link to get you to a YouTube video that shows her speaking in person at the event:

    United Nations Office of Drugs and Crime: 61st Commission on Narcotic Drugs

    Please look over everything, that I’ve tried to present to you in one neat little blog post. I hope that you feel updated and possibly more optimistic about the changes coming in this New Year, 2019.

    Something must be done to change the deplorable conditions that have been put upon the chronic pain community! These great leaders and others, working together as a united front; that is how we are going to help make the changes that we need to see happen this new year!

    Thank you for coming back to visit and read “Tears of Truth”.

    They Fell like Dominos: My License, My Certification, My Profession


    Hello Luvs,This blog post is actually something that was written and sent to me by Dr Mark Ibsen, MD, a physician from Helena, MT. He wrote and says:

    “I had similar experience. 
    Guilty. 
    Not even “guilty until proven innocent”
    Just guilty. 
    Once they set their sights on you,
    You
    Are
    Fkkd. 

    This system is feudal. 
    Primitive. 
    Insensitive. 
    Ineffective. 
    Unchecked, as in no checks or balances. 
    Run by appointed people who are completely unaccountable. 
    No recourse. 
    In the name of “safety”, 
    With no evidence of harm. 
    Like a trip to the Gulag. 

    The key is for patients to realize that doctors have become so vulnerable that we cannot risk ANY exposure to ANY accusations. 
    A risk-averse environment due to the hostile regulatory environment we now have. 

    So, as more and more patients despair over being abandoned by this system, the sacred physician patient relationship is further tarnished. 

    I, for one, will continue to stand by the patients I can, and pray for those I cannot.” 

    Here’s the article that accompanied the email from Dr Mark Ibsen, MD:

    They Fell like Dominos: My License, My Certification, My Profession

    Mark Ibsen MD
    Helena MT

    Medicare Patients Face New Rx Opioid Rules in 2019 — Pain News Network


    Hello Luvs,

    I received this information from Pat Anson of the Pain News Network. This information may prove to be very valuable to many of the chronic pain community. I wanted to be sure that you saw this. I also wanted to be sure to share it with you all. This is the new Medicare 2019 rules regarding Opioids.

    Medicare Patients Face New Rx Opioid Rules in 2019 — Pain News Network
    — Read on www.painnewsnetwork.org/stories/2018/12/31/medicare-patients-face-new-rx-opioid-rules-in-2019

    I hope your 2019 will be Blessed and peaceful. Sending light and love your way.