A new report commissioned by the U.S. Food and Drug Administration is calling for a sustained and coordinated national campaign to combat the opioid crisis, including more aggressive regulation of opioids by the FDA and a “cultural change” in the prescribing of opioid medication,
“The broad reach of the epidemic has blurred the formerly distinct social boundary between prescribed opioids and illegally manufactured ones, such as heroin,” said committee chair Richard Bonnie, a Professor of Medicine and Law at the University of Virginia.
“This report provides an action plan directed particularly at the health professions and government agencies responsible for regulating them. This plan aims to help the millions of people who suffer from chronic pain while reducing unnecessary opioid prescribing. We also wanted to convey a clear message about the magnitude of the challenge. This epidemic took nearly two decades to develop, and it will take years to unravel.”
The report estimates that at least 2 million people in the U.S. have an “opioid use disorder” involving prescription opioids — meaning they are addicted to prescription painkillers — and almost 600,000 have an opioid use disorder involving heroin.
Although opioid prescribing has been declining for several years and the number of overdose deaths from prescription opioids has remained relatively stable in recent years, deaths from illicit opioids such as heroin have tripled in the past decade.
Personal Commentary: “This plan aims to help the millions of people who suffer from chronic pain while reducing unnecessary opioid prescribing.”
How can it help the millions of people who suffer from chronic pain if opioid prescribing is reduced or denied for said chronic pain sufferers? Who chooses which patients receive or are rejected? The physician or the government?
“The report claimed that many people who normally would use prescription opioids have transitioned to heroin because of the declining price of heroin and the introduction of abuse-deterrent formulations that make opioid medication harder to snort or inject.”
Yet the report declines to mention the many people who have never transitioned to heroin or any other type of illicit drugs.
These reports never mention the vast majority of patients who remain compliant, who’ve never failed a scheduled or random drug screen, who’s quality of life however slight was a quality enough to stay alive for.
Perhaps it’s the people who aren’t in the chronic pain they claim to be that are abusing the system and heading for heroin and perhaps it’s easier to lump us all together for political gain and ulterior motives that have little to do with helping us and everything to do with you. Just you.
Approximately 3 weeks ago I was contacted by Barby Ingle, President of the International Pain Foundation with a program to consider. Barby sent me Dr. Edward Glaser’s phone number and a link to what the program entailed.
Those of you who know me would also know that I had to do more research on the Manual Ligament Therapy (MLT) being offered. I had to learn more! I had to try to understand the concept, and how it might work if it could. It wasn’t just the Gohl Program itself that I researched. I also pulled up each name involved. 3 of which were Dr. Glaser, Arik Gohl, and Dr. Forbes. Then I read up on Monica DePriest and her daughter Haley DePriest who had CRPS and who is well today because of the program and the techniques that Mr. Gohl’s therapy provider her. Testimonials.
See how my curiosity piqued even more? We’ve all been told that CRPS/RSD is incurable. We’ve learned that it’s also in our blood not just our bodies. I wasn’t as skeptical as some may have been because I had already, several times, researched techniques involving manual trigger point therapies, acupressure, Chinese medicine techniques and similar holistic treatments dating back to the 1800’s. I had already been treated earlier this year with the Bowen Technique.
I had become so let down by western medicine not being able to relieve my own CRPS, or specifically CRPS Type 2/Causalgia in any way other than by Lumbar Sympathetic Nerve Blocks, medications, and traditional physical therapies that only provided minimal relief, if any, that depressions worsened and hope was nowhere to be found. Since December of 2006 the only steady I had was my Medtronic Spinal Cord Stimulator which reduced or disguised enough symptoms that walking wasn’t as painful as it was prior, and pain medications could be reduced by my choice in the permanent placement.
Complex Regional Pain Syndrome: Systemic Complications
CRPS is becoming the great imitator in pain medicine. This article discusses the symptomatology of the disease, including atypical presentations.
By Robert J. Schwartzman, MD
All those things I had accomplished over the years, I found little happiness in. I put on the fake it to make it mask and I wore it quite well. Who would have ever thought that I struggled so badly with suicidal ideations that even my spiritual beliefs couldn’t stop me from wanting to bail on this world.
A mid-metatarsal separation of my right foot (also known as a Lis Franc fracture) January of 2001 in an industrial injury began the last 16 years of uncertainty, loss, rejection, abandonment, failure, and secondary diagnosis’. I still had my upper body though. My hands, fingers, and arms would make up the difference. I could still write type and use social media. In 2009, 9 years after, I got a left foot accelerator pedal installed on our van to be able to drive again. Oh I tried! By that time my left leg was too weak also to drive safely.
I had already had degenerative changes in my spine, but pretended that I didn’t. My legs hurt so bad that it diverted any back pain. 3 years ago my arms started doing things I didn’t understand. Beginning with my left and worsening on the right. By the time I had an EMG my left was reduced and my right just continued to worsen. I’ve never had an EMG or nerve conduction studies on the right side. As 2016 approached the pain in my neck, shoulder, chest, upper and mid back, head, face, the sensations of pulling, tugging, ripping, intense pins and needles, paraesthesia, became so unrelenting that I really couldn’t take it anymore. Bending at the waist started a flare each and every time. I still have to work on that. I had lost feeling in my thumb, forefinger and wrist. My right hand had lost strength.
But wait! I still had my left hand and arm. If I ever needed the gift in being ambidextrous, I would really need it now more than ever to be a part of anything, offline or online.
I had unknowingly believed in hope while other’s told me I was in denial and that I had to accept all those things I wouldn’t be and couldn’t do and would never do. At a higher level of consciousness I saw the light ahead, but was conflicted by the darkness of despair.
I’m already so much better than I’ve ever been in 16 years because of MLT.
I celebrated my 48th birthday while at the program. My son drove my husband to Loomis CA to spend an hour or so with me. First time I’ve been away, on my own, anywhere in 15 years.
Me and my husband Erik
Me and our son Ozra
While I’m still wrapping my own head around it, it’s not as unbelievable as it seems. I promise.
National Pain Strategy PAINS Collaborators Meeting Recap
By Barby Ingle, Power of Pain Foundation President
On June 29 and 30, 2015, the Pain Action Alliance to Implement a National Strategy (PAINS), a group of over 100 pain collaborators and stakeholders, came together in Washington DC to discuss the National Pain Strategy (NPS). The purpose was to provide attendees an opportunity to discuss the NPS and find areas of agreement on next steps, collaborations, priorities, and to hold accountable those responsible for implementation.As the president of the Power of Pain Foundation, I was invited to participate. I went into the meeting with some preconceived notions based on little happening since the Institute of Medicine’s report in 2011 and didn’t expect much to be accomplished. To my great surprise, the meeting exceeded my expectations. I left the meeting feeling that a path toward implementation of stronger access to care issues was clarified as a result of the meeting. I am excited to be one of the attendees present that will be helping move a chronic pain agenda forward, making a difference in the lives of those living with pain.The goals of the meeting were to encourage collaboration among key pain community leaders, to promote the NPS report and build enthusiasm for it, and to facilitate conversations about how to move forward to implementation of the strategy outlined in the report.For me, the meeting clarified the path ahead for the NPS in terms of priorities,implementation, next steps, funding,leadership and accountability. One of the unintended outcomes from the meeting was the consensus to support the messaging of the Chronic Pain Advocacy Task Force (CPATF). The CPATF is a group of 17 consumer advocacy groups convened by the State Pain Policy Action Network (SPPAN), which is a program of the American Academy of Pain Management (AAPM). As a founding member of the CPATF and the representative of one of the 17 groups involved, I was very proud to see that our work was recognized by this larger group of collaborators and stakeholders. As agreed upon, the core messages are: Chronic pain is a real and complex disease that may exist by itself or be linked with other medical conditions.Chronic pain is both an under-recognized and under-resourced public health crisis with devastating personal and economic impact. Effective chronic pain care requires access to a wide range of treatment options, including biomedical, behavioral health and complementary treatment. Denying appropriate care to people with chronic pain is unethical and can lead to unnecessary suffering, depression, disability, and even suicide.
In the early evening of Valentines Day, February 14, 16, I was placed in handcuffs in front of my residence and transferred to #MethodistHospital psychiatric hold where I got to come home the evening of February 16th Initially, I was being transferred to another facility for a 72 hour hold and evaluation after the Dr. said I wasn’t a threat to others, but I was to myself. Upon re evaluation the afternoon of the 16th, the doctor via tele medicine (Robot) allowed me to go home. The bruises on my body (severe) are not self inflicted, but are the consequences of my actions. After being denied 2 types of medications I’ve been on over 10 years (non opioid, anti-depressent/nerve pain and an anticonvulsent, 2 others removed entirely and abruptly January 2015 and reduced from 90 to 30 on Cymbalta at the same time, being continuously delayed, denied, retaking these 2, being denied again, going through the withdrawals over and over and knowing how many of you go through the same or similar, I began to crack. Days prior I filed the appeal, the next day I sought psych help from one of my providers, but was never contacted back. Valentines day started beautifully. My husband set up our patio, and have a vase of flowers for me, coffee and it was peaceful. When I woke that morning, he said “don’t go back” referring to the bedroom. He said” close your eyes” I did. He led me to the patio, the best gift I could have been given. As the early afternoon and sunshine made it’s way in, I was updating hand notes previously taken on a legislative conference to send as minutes. I was listening to music. My emotions began to rise. I was upset that I couldn’t be there for Barby in the loss of her dad, or my mom who’s doing all she can to keep her heart beating, or my dad, or my children, even my sister. I saw that denial letter again as I was highlighting the inaccuracies it contained. I tossed back a 200 ml bottle of vodka. To be specific the $1.99 bottle of Tamiroff (the cheap crap) 40% alcohol by volume. It wasn’t the cause of my actions, but it was the liquid courage to tell it how it was and how it shouldn’t be, however misplaced. I remembered what WC took from me, what I was manipulated into 14 years ago. Something that even possibility, chance or a cure can never bring back and I realized how absolutely stupid I was to listen to my health team at the time. See? I’ve learned and I’ve grown since then and while now I have to tread carefully, I refuse to shut up for me, or for you. And I remember that when my case was initially force closed in 2003, I asked for 1 thing. Just one, and whether my 3 know that or not, I submitted it in writing. I asked for them to apologize to my children.
They’re still waiting
I stood in the street and screamed everything we go through. #Chronic, #IntractabIe#Pain, #CRPS, #DWC#California#MTUS, denials and delays, I screamed that if you take an opioid, tomorrow you’re defined an addict If you have a drink, guess what? Now you’re an alcoholic. I screamed that records should be maintained accurately and that I was DONE! With irresponsible people fucking up responsible lives. Was my act responsible? Perhaps not, but the cause and reason was.
My tongue was foul.
When I attempted to advocate for myself, speak of compassion and understanding, humanizing people for all, and reveal what I do and that I wasn’t blind to it all, I was considered hallucinating, fabricating, making it up, laughed at, demeaned and ridiculed. Being kind, caring, loving, understanding, respectful, honest, and trustworthy has got me no where. Incline my head to the higher ups as if they’re right, when really I just don’t have the guts to advocate on my own behalf and tell them they’re wrong.
A person (and patient) who’s done everything right has labeled me, defined me, and stigmatized me as someone who’s wrong and who’s done everyone wrong.
They wouldn’t even give me my SCS controller to turn off my stim. Flat increases stimulation. The nurse tried to give me some line about, not right now, she didn’t know what I was talking about, so I tried to tell her. Being dismissed from that made me see even more red, I called her stupid and told her to f off. Then I apologized because even in my upset state, I had the mind to know it really wasn’t her fault, she was just ignorant and uneducated.
I won’t be tolerating inaccuracies in records, healthcare or otherwise. I won’t be tolerating patients not being able to add note to correct the record. I won’t be hiding away under the blankets anymore, while people create their reports to satisfy their own job criteria, yet leave out pertinent information. I’ll be up to make sure you know you better get it right. And that people deserve truth about all else.
I’ll be sharing this story in it’s entirety, there’s so much more than this. My records, PRIUM, tox screen, etc are being sent to the International Pain Foundation. Via iPain someone gets the exclusive. I’ll decide free or fee. Oh and I got on the inside in all of it, now I know what goes on behind those scenes and those doors. I supposedly blew a high alcohol level. But here’s the deal. The bottle is still the same bottle it can’t magically become something else. The amount my body took in wasn’t more than that, I’m 200 pounds, so go figure. I’ve saved that little bottle as a souvenir. Excuses? Not at all. I’m not proud, but nor am I ashamed. My transparency will bring me back up, enough to prove, I haven’t lied, fabricated and I wasn’t on any illicit or illegal drugs which no one believed either.
On the contrary, the truth I’ve told and will tell
Will become me
(This is my #FightSong
… Take back my life song)
If I gave anything that night, I gave 2 things.
1. On command I removed my hands from my mama’s jacket pockets and complied without incident to place my hands behind my back. #SacramentoSheriffsDepartment. Everyone should do the same in all situations.
2. I’ve given all of you the rest of my life; the one I can’t go back on.
My name is now associated with defiance and lock down.
Nothing else was considered
Sleep disorders, narcoleptic episodes
CSA (my brain doesn’t send the signals to my body to breathe)
Myoclonia
Withdrawal (probably over that by now, but the effects I’m still dealing with)
CRPS (Flare) + and an altered brain from the last 13 months of continuous WC hell.
CRPS (secondary depression, anxiety disorders, PTSD x 2 (diagnosed)
(excluded are internal diagnosis’)
My medication list has been updated each and every time I’m seen by my physicians. Yet, my discharge shows I’m on 11 meds, including Butrans, 5 and 10, a benzo and others. I’m on Lisinopril 1 x a.m, Atorvastatin 1 x p.m, Hydralazine as needed only, BP 180/+, Nuvigil daily, and BuTrans Patch/wk. #DignityHealth is linked to all my doctors. The hospital is part of Dignity Health. What’s the point of the EMR, PMP, PDMP or even a computer if it’s not properly used?
Understand why I kept saying “I’m fucking done” I’m done doesn’t equal I’m going to kill myself. I’m over it, doesn’t mean it either. I don’t want to be here doesn’t either. What they all are is some else’s perception and reality I could fart and my son would throw up his hands and say “I’m done!”
Check it out.. My voice will carry, I have the guts to say it, open eyes and touch hearts, contribute to change, maybe not for me, but hopefully for someone else
If I killed myself, I wouldn’t get to say it, now would I?
I’m sure they gave me Cymbalta, Zonegran and Hydralazine in the lockdown. I wasn’t suppose to be given any of those. Only Lisinopril and the Statin. No wonder my head hurts.
I have no regrets
I pray you don’t either.
To be continued…
Sincerely,
Twinkle VanFleet,
Advocacy Director, Healthcare Advisor, Consultant, Speaker, International Pain Foundation (iPain) powerofpain.org/leader-directory
On the 29th of January, I put in for my Cymbalta (30, 1x) and Zonegran (100, 2 x). I went to my grandson’s 10th birthday party yesterday (sick) but I played it like it was something else, I played it off so good and to the point of… shrugs. Yah, slam dunk withdrawal again. Pharmacy kept telling me my doc hadn’t refilled. (A lie) If you didn’t know the truth, say you don’t know. Today I get a letter in the mail from PRIUM. Cymbalta and Zonegran denied. Last January, 13 months ago, I was removed from 2 other medications entirely (one of which was Lidoderm) and reduced from 90 to 30 Cymbalta. I tried. I faked it to make it and I prayed it and played it. but was slipping harder than anyone could ever see, . There’s 1 med left and I know it’s next. Nearly every month I’m delayed, the months I’m not delayed by days, I am by weeks. I’m sure my brain is fried by now. I’m sick all the time from abrupt discontinuation, to trying to re stabilize after getting back on, to slam dunked again. Over and over and over. Those medications aren’t suppose to be slam dunked off of. They aren’t suppose to be abruptly discontinued. They are suppose to be weaned off to prevent seizures and adverse affects that can in some cases include death. Their letter is a lie, it contradicted 12 months ago where it did indicate Cymbalta and Zonegran and now says the CA MTUS doesn’t indicate for the treatment of neuropathic pain. (wrong). It also said because I’ve been treating with a dentist and was ON Norco 5/325 that the Cymbalta and Zonegran didn’t keep me OFF OPIOIDS. A fucking lie. As of the date of that letter. I had 3 dentist appointments. And I suffered and declined med, even tho I took some. I also got permission from my PMD prior to ever getting an RX , filling it or taking it. I have not asked for 1 single extra pill and I didn’t even fill the Rx I had for days later. But know what? It’s a done deal now. TOWER ENERGY GROUP – SCOTT CORNWELL ADJUSTER ARROWPOINT CAPITAL. You might want to get your facts right. You expect us to have ours accurate, yes? Let me see here in 1 year approximately $15,000 a year in medication management times 81 years of age. I’m still only 47. I got your game, you better get mine, too.
This letter said that I failed Lyrica and Neurontin (the reason it now says NO to Zonegran, but that I didn’t fail Carbamazepine or Lamotrigine. You got me stuck on stupid. For real? drugscom says make sure to tell your doctor if you have heart disease, high blood pressure, high cholesterol or triglycerides;
liver or kidney disease; ALL OF THE ABOVE. I get it, compromise one side for the other right? Which really means lower your spending. Sorry idiots, I settled for lifetime medical and didn’t take your money. Go on keep punishing me. Neither of these are NOT indicated for me. I didn’t appeal your last denials (January 2015) and I’m not appealing these either. Oh and by the way, next time you put bull shit in my letters, CA fail first/step therapy REFER TO AB 374 and know that if you’re going to quote taking and failing, you better also note all else that goes with it.
Because I think you failed something else…
Yourselves!
—
The Travesty of Delays- California Workers’ Compensation SB 863 and AB 1124
I would like to offer that in conversation this last week with Dr. Kolodny and others who advocate against the use of opioid pain care that I attempted to stress the importance of responsibility and education in stating that ”
“So much time proving how bad opioids are when we could have been educating, teaching personal responsibility.” (Twitter only allows so many characters)
A direct reply and quote from Dr. Kolodny
“Education & “teaching personal responsibility” will not make opioids less addictive or more effective.”
Already in today’s call responsibility has been spoken of as well as education several times. He came on and mentioned Guiding physicians. Isn’t guiding educating?
Other therapies can potentially be more harmful, anti depressants, anti seizure medications for the treatment of chronic pain, such as Cymbalta,
Neurontin, Nortriptyline, Amtriptolyne and similar medications also have misuse and abuse potential. When there is misuse, abuse and Overdose is already likely. Surgical intervention is contraindicated in patients with nerve damage, neuropathies, CRPS/RSD. Some of these opioid overdoses were in part due to other medications, mixtures and alcohol, not solely opioid. Integrated and functional restoration programs are important, but few insurances at all, cover them.
Can we try not to stress the decline in white people falling to addiction, when we didn’t seem to be as concerned about blacks, or minorities. many were like, oh well, let them kill themselves, calling them stupid. We’re your kids stupid? I think not. I find it disheartening.
People were people all along. Also personal responsibility is directly related to opioid overdoses. If these children or adults didn’t understand the risk, or what the medication may cause, then education was absolutely necessary by parents, family and spouses first and foremost before the medical community. It becomes a mutual responsibility. Not only the doctor who prescribed it.
If they can’t stop, it’s our responsibility to intervene on their behalf. and attempt to save their lives before it’s too late.
Pain is physical, and pain is emotional. Physical pain seeks quality of life, the emotional pain, those against opioid’s seek comfort for
their loss. Pain doesn’t discriminate.
Physiology also plays a major role in this topic. Lets not sacrifice people for people. Otherwise unintended consequences become intended
consequences. Responsibility in prescribing isn’t a one way street. We seek out the doctor, they don’t seek us out.
~Twinkle V. / Advocacy Director, International Pain Foundation #iPain
Power of Pain Foundation recognizes that Abuse Deterrent Formulations are only a step forward
toward drug diversion. We know this isn’t the final answer. It allows an option for patients to
continue to be treated with opioid analgesics and removes many of the barriers involved in non abuse
deterrent medication.
POPF Pain Community Needs Assessment Survey
We are not focusing on any one treatment option, we are improving upon the patient/provider
relationship.
The purpose of our survey was to determine who is having trouble getting access to quality care.
who is being dismissed, who is being cared for by a primary physician, who is being sent to pain
management and who is having difficulty receiving ongoing pain care.
We are aware of many individuals who are not receiving proper medication management or treatment
and others who had been receiving care that are now facing obstacles.
Our goal is continued access to care. Our goal is patient empowerment.
Recent advances in stem cell research have led to exciting new treatment possibilities for patients with dysautonomia.
Exactly why people develop dysautonomia has eluded researchers for decades. Researchers from the University of Oklahoma have determined that one causative agent for dysautonomia is antibodies formed against certain receptors found on nerve cells1. In other words, for many patients, dysautonomia is actually an autoimmune condition. IVIG (gamma globulin) is increasingly being used to treat dysautonomia. Complications following IVIG are very unusual, but heart attack, stroke and renal failure have been reported. Stem cells are a potential alternative to IVIG for treatment of a broad array of autoimmune conditions.
Multiple System Atrophy (MSA) is one form of dysautonomia for which stem cells have shown promise as a therapy. Mesenchymal stem cell (MSC) therapy has been studied in a rat model for MSA2. The first human study was published in 20083 and found MSC therapy helpful for treating MSA. A randomized trial of the use of MSC therapy for MSA was published in 2012 and demonstrated a delay in disease progression4. A recently published study5 found that MSC treatment modulates cortical thickness in patients with MSA, which, the authors infer, may have implications for MSC treatment application for other cognitive disorders.
Autonomic Specialists are now investigating the application of stem cells in treatment of Dysautonomia. Treatment is offered as part of an IRB approved study. If you would like more information or to find out if you might be a candidate for Mesenchymal stem cell treatment, please contact us through this web form (click here) or call us at (949) 247-8877.
One of the most important health benefits of cannabinoids is their anti-inflammatory property. In this, they are strong modulators of the inflammatory cytokine cascade. Numerous disease states arise out of chronic inflammation; such as, depression, dementias including Alzheimer’s, cancer, arthritis and other autoimmune disorders, viral infection, HIV, brain injury, etc.
Inflammatory cytokines can be activated by oxidative stress and disease states. Cannabinoids, being immunomodulators interrupt the cytokine inflammatory cascade so that local inflammation does not result in tissue pathology. Thus we are spared morbid or terminal illnesses.4
If our own endocannabinoid system can maintain metabolic homeostasis and even cure seri- ous disease, why are we plagued by illness? We know that the body produces only small amounts of anandamide and 2-AG; enough to maintain the body but not enough to overcome chronic stress, illness, injury, or malnutrition. Cannabis is the only plant we know of that produces phyto-cannabinoids that mimic our own endocannabinoids. One of the great benefits of this mimetic medicine is that cannabinoids are essentially natural to our biology and do no harm to our tissues and systems.
It is well known that most diseases of aging are inflammatory in origin, thus making cannabis the best anti-aging supplement we could take to avoid arthritis, dementia, hypertension, diabetes, osteoporosis, and cancer. This is our key to good health and long life.
Since it is such an important attribute, as well as being independent of the cannabinoid receptor system, let’s look a little deeper into the ability of cannabinoids to inhibit the inflammatory cytokine cascade. Inflammation is good for us, a little here, a little there; it brings T-cells and macrophages to infection sites. This is good. However, chronic inflammation can cause serious illness and death. How do phytocannabinoids rescue us from dreaded infirmities? When the call comes in to the immune system to send troops, the first thing to happen is that the immune system signals glial cells to produce cytokines. Once this cat is out of the bag, the process can go one of two ways.
A) Killer cells clean up the infection and all is well.
B) Cytokines can stimulate more cytokine production and cause many more cytokine receptors to awaken. Unchecked, this becomes a cytokine storm showing symptoms of swelling, redness, fatigue, and nausea; even death.
RSD Advisory- Where Chronic Pain & Depression Collide 