Spinal Cord Stimulators – comment on RSD


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Spinal Cord Stimulators 

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 Craig’s comment

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By no means do I mean to say that I or anyone else has better insight into how to treat pain, but I am against spinal cord stimulators [SCS’s] for treatment of pain due to CRPS, and possibly against use in other situations. I demand that the billions in profit they made be put into a retrospective and prospective study of damage caused by them in order for them to give full informed consent.

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I have 3 goals writing this.

  1. SCS’s

  2. Craig’s experience

  3. The Only Real Answer for severe pain, not damaging the system with opioids

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Informed consent is never given for spinal cord stimulators because it requires truth telling, something our corporations have been reluctant to do. Business ethics are not medical ethics, as we keep being reminded daily in the headlines.

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I enclose, below, a generously expressed and detailed comment by a man who had the patience to sit down and  write the painfully gory details so you can weigh-in on your decision whether to follow your pain specialist’s opinion to give you one. I don’t want anyone to feel suckered into choosing them and if I had pain I’ll admit I’d crave relief too. Anything. I’d be in line before the doors open.

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But if you have CRPS, spinal cord stimulators will create more pain. CRPS evolves unpredictably, by a will of its own. I know some very desperate patients with CRPS everywhere including face, mouth, gums, tongue, organs, trunk, limbs. Spinal cord stimulators will create more pain. Keep in mind, I don’t see the 5 year success stories even for lumbar disc pain. They don’t need me if they are pain free.

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But if you have CRPS and desperate need for pain relief because all else has failed — every known drug in highest possible doses of ketamine, propofol, opioids for weeks in ICU fail to even touch pain— there is one thing, and only one thing to do and I will set it out below. I just sent my recommendation to a patient with CRPS in extreme pain.

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My recommendation, below, is for patients who have nowhere else to turn.

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First I’ll mention the problems Craig encountered with SCS’s. He sent his comment to the opening page of this blog, so I will reproduce below. 

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I am currently undergoing a trial Medtronic SCS. I have had to have it reprogrammed 3 times since it was installed 5 days ago. I have had sensations and issues that I have addressed with my rep and my neurosurgeon. I get a severe headache when the unit is turned on. I get the constant feeling of having to urinate. I have current running through my testicles which they can not seem to program out and I am getting little pain relief. I have had to failed back surgeries, many failed injections and I have CRPS. The leads that were inserted when I was in the table covered my mid back and both legs. After I got to my feet and waited while they programmed the unit in another room. They came in and plugged it in and I no longer had coverage on the right side. My crps is in both legs, my hands, arms and face. The lyrica helped to tamp down some of the burning but I am in pain 24/7 and this was my last resort. I have scar tissue completely surrounding my S1 nerve. By the grace of God, I am on my feet, on crutches. I seem to get a look of disbelief when I tell them the unit is causing these issues or it’s not giving me the relief I was counting on. Relief, only to cause greater issues and pain. Is not relief to me. I can not wait to get this trial out of my back. I believe the leads slipped and that is why I am not getting the full coverage I had on the table. The issues I have had are as follows: severe headache, constant feeling of having to urinate, extreme joint pain, abdominal pain, sleeplessness, involuntary jerking, surges in current even when sitting still. Intense pain around the lead insertion site. Current uncomfortably running through my testicles, regardless of setting. It is my opinion there is still not a lot known about crps and I have read evidence of people have great success with these units. Everyone reacts differently. My body obviously creates a lot of scar tissue and my orthopedic surgeon created a fair amount herself. I can’t imagine even more or being forced into a chair for yet another unlucky decision. The medication helps and I have lived this far without the optimism that it would end soon. I had high hoed for this device but I don’t think it is right for me.

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One of my patients with CRPS was hospitalized for weeks with recurring unusual abscesses and required repeated surgery of hand and forearm. Even before surgery, she had failed opioids, failed ketamine, and was in ICU for weeks and weeks while the same medications were still given along with Propofol and IV Tylenol. Nothing helps her extreme pain.

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Anesthesiologists on staff in ICU threw everything they had at the pain for weeks. Most anesthesia pain doctors would have probably done what they did because that is the limit of tools we have.

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When you have hit the limit of benefit from opioids, ketamine, propofol, we have nothing else that treats pain with one exception: drug holiday.

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Stop all analgesics including Tylenol that destroys the liver as severely as cancer, the severity of which was newly discovered and published yesterday.

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The receptors for these analgesic drugs have up-regulated to such an extent they have caused the situation. Again, I stress, everything that was done during the ICU admissions would be done by any anesthesiology pain specialist. Those are the only tools. They cause the problem. The same for opioid induced hyperalgesia. We used to do it with Parkinson’s drugs in the 80’s.

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The only way to rehabilitate the up-regulation of all those receptors that have now exploded in numbers, immune to anything you throw at them, is stop the drugs.  Stop all of them for weeks, maybe months, years, no one knows, you are all the human guinea pig waiting to happen. But if we restart them, how long do we wait, how quickly will it again lead to this massive hyper-excitable state of pro-inflammatory cytokines that we know have gone wild, flooding the CNS. A flooded engine will not restart.

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Ketamine at least is known to reduce pro-inflammatory cytokines, but the system is too busy exploding, birthing new receptors that take over, and you’ve got a 55 car pile up. Well, more like millions I’d guess. No scientist here. Clnically, when can we resume something after a drug holiday, how soon and which drug? I’d avoid opioids because they create more pro-inflammatory cytokines. Choose ketamine, because they reduce pro-inflammatory cytokines, but if it works at all, stop it at first sign of tolerance, which is the need for increased dose. It becomes less effective. Walk a fine line, endure more pain because unless you do, it will no longer help. Opioids, analgesics of many kinds. 

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How do we get you through a drug holiday because we know withdrawing these drugs will trigger even more pain for possibly weeks until the system settles down?

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Pain storms, hurricanes

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This is complex regional pain syndrome where we see this insanity of pain storms. There is no other condition, unless several neuropathic pains in people with cancer, nowhere I have seen this type of pain in decades except CRPS – comparable to pain of subarrachnoid hemorrhage, blinding pain.

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No one has answers. None. One university does outpatient infusions of ketamine six hours daily for 8 to 12 weeks. Does it help? A small percentage. Outpatient, 6 hours daily, 5 days a week, staying at a hotel, 8 weeks.

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This is CRPS/RSD. No one has answers. It is futile to throw more of the drug in the system. That is my opinion. You have a choice and may choose otherwise. It is your body. You may stay on monthly opioids for decades, until you finally admit how poorly they work. A drug holiday is what we did in the 70s during my ancient training with Parkinson’s patients. They needed full 24-hour support. The American medical system has changed since then and those are not options currently available—cost.

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You need full psychological and psychiatric support.

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The Only Real Answer

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The country needs to invest $10 million to complete the clinical trials needed for an injectable, long-lasting interleukin 10 [IL-10], the anti-inflammatory cytokine. It already has full scientific and animal studies performed by and with the world’s foremost glial scientist at University of Colorado Boulder. Professor Linda Watkins has won awards from many countries. She has been the keynote speaker at the annual academy pain meetings for years. IL-10 can relieve pain for three months in animals that have intractable chronic neuropathic pain. This is not new —–NIH I’m looking at you to fund clinical trials. And those of you who care, do a Kickstarter to fund the clinical trials.

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This is the power of the innate immune system. NIH would rather fund research on the unknowns like stem cells rather than the known. It’s known for decades, NIH does not like to fund pain research. Glia are not all about pain. They are the innate immune system, the key to Alzheimer’s, neurodegenerative diseases, almost all known disease including atherosclerosis. It’s all about inflammation. We need the trials to stop giving drugs that cause inflammation, opioids —–CDC fiats are not as good as a drug that relieves pain, a drug that really works on mechanism. Where will the addicts go if the ER only has IL-10 for pain? That is one way to overspend on ER visits.  And NIH, please get us some real clinical research funding on how to use glia for our benefit. Get us some research on the entourage effect, combining medications to achieve relief especially for neuropathic pain.

Then bring on some crack negotiating teams from insurers to do some negotiation about pharmaceutical prices. Our new president has mentioned that.

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Please bring this to everyone’s attention. One way to get a grip on pain and/or depression is to build hope, help others, and energize behind a goal.

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Kickstarters work to raise tens of millions overnight. 

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IL-10 – animals have been shown to be pain free for three months, already proven in animal studies, by one of the world’s most widely acknowledged pain specialists Professor Linda Watkins, PhD. We need the final steps to fund the clinical trials in humans.

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The material on this site is for informational purposes only.
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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

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This site is not for email and not for appointments.

If you wish an appointment, please telephone the office to schedule.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Opioids: a think tank to expose the deep-rooted failures and injustices in our health care system


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STAT is “a new national publication focused on finding and telling compelling stories about health, medicine, and scientific discovery” in partnership with the Lown Institute.

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“The Lown Institute is a think tank dedicated to research and public communication to expose the deep-rooted failures and injustices in our health care system, and to helping clinicians, patients, and communities develop a shared vision for a better health system.”

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.“Since 2012, the Lown Institute has been a leading voice in the movement to recognize the harms of overuse of medical care, and in pointing out the clear connection between wasteful medical treatment and our system’s failure to deliver needed care.”

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This article from STAT, excerpted below, beautifully and painfully describes the opposing sides of the deep divide in our country about treatment with opioid analgesics for chronic pain. It is a divide deeper than the growing upheaval of politics in America, and it is unique to us. The United States, with 5% of the world’s population, consumes 80% of the global opioid supply, and an estimated 99% of hydrocodone. “Pain drugs are the second-largest pharmaceutical class globally, after cancer medicines.”

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I have seen both sides, those who cannot live or function without opioids and those whose pain improves radically once they taper off. The war on patients plays out many times daily, while patients and doctors alike are deeply concerned at the lack of research in this volatile unpredictable field, where patients are subjected to whack-a-dose prescriptions since the March 2016 CDC fiat that dictated slashed opioid dosages, a dictate that now entitles insurers to deny all medication overnight —saving them tremendous costs. All denied, no matter how small the dose, nor how intense the diagnoses and pain.

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This irrational, inhumane, and unpredictable disease of change has become a constant, destroying lives of patients and caregivers while addicts continue to overdose evermore and prisons are filled with low level street corner dealers —never the rich who buy their way out of prison. Cheating is a way of life for corporations, condoned by congress.

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A ‘civil war’ over painkillers rips apart the medical community — and leaves patients in fear

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PALO ALTO, Calif. — For Thomas P. Yacoe, the word is “terrifying.”

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Leah Hemberry describes it as “constant fear.”

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For Michael Tausig Jr., the terror is “beyond description.”

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All three are patients struggling with chronic pain, but what they are describing is not physical agony but a war inside the medical community that is threatening their access to painkillers — and, by extension, their work, their relationships, and their sanity.

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Two years after the United States saw a record 27,000 deaths involving prescription opioid medications and heroin, doctors and regulators are sharply restricting access to drugs like Oxycontin and Vicodin. But as the pendulum swings in the other direction, many patients who genuinely need drugs to manage their pain say they are being left behind.

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Doctors can’t agree on how to help them.

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There’s a civil war in the pain community [my emphasis],” said Dr. Daniel B. Carr, president of the American Academy of Pain Medicine. “One group believes the primary goal of pain treatment is curtailing opioid prescribing. The other group looks at the disability, the human suffering, the expense of chronic pain.”

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Pain specialists say there is little civil about this war.

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“There’s almost a McCarthyism on this, that’s silencing so many people who are simply scared,” said Dr. Sean Mackey, who oversees Stanford University’s pain management program.

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“The thing is, we all want black and white. We don’t do well with nuance. And this is an incredibly nuanced issue.”

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Stanford’s Mackey said those risks are important to recognize. But, he said, nearly 15,000 people die a year from anti-inflammatory medications like ibuprofen. “People aren’t talking about that,” he said….

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…Dr. Anna Lembke, who practices alongside Mackey at Stanford’s pain clinic and is chief of the Stanford Addiction Medicine Dual Diagnosis Clinic, published a book about the opioid crisis last year. It was titled: “Drug Dealer, MD: How Doctors Were Duped, Patients Got Hooked, and Why It’s So Hard to Stop.

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Lembke believes that long-term opioid use can cause patients to perceive pain even after the original cause of pain has cleared. Some patients, she said, find themselves free of pain only once they have endured the often agonizing effects of opioid withdrawal.

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“That’s what we’re seeing again and again,” she said.

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…. a single father of two teens, said that every month he needs to fill a prescription, he’s fearful it will be denied.

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Mackey says doctors being trained at Stanford’s pain center have grown increasingly fearful about prescribing opioids...

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[Dr. Mackey describes a practicing 81 year old physician who cycled to work until recent back surgery. His life is now complicated by severe back pain and he requires opioids to continue to function.]

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“If you’re 81 and you stop getting out of bed, it’s a slippery slope,” he said.

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The material on this site is for informational purposes only.
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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

~~
This site is not for email and not for appointments.

If you wish an appointment, please telephone the office to schedule.

~~~~~

For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Please IGNORE THE ADS BELOW. They are not from me.

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War On Opioids Is War On Patients With Pain: Obama Seeks $1.1 Billion to Fight Opioid Abuse


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A “war” on opioids is a war on patients with pain. The CDC just radically, across the board, cut access to opioid doses.

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Obama seeks to fight opioid abuse by arbitrarily limiting access to medication for 100 million patients with chronic pain. This does nothing to help the appalling lack of funding for research on chronic pain.

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Today, the New York Times announces President Obama is seeking $1.1 billion to fight the opioid epidemic.

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Obama had already signed a budget agreement in December for $400 million for the same.

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Imagine war on pain instead of war on addiction, war on drugs. If $1.1 billion were instead spent on finding better pain treatment— would addiction to opioids occur less often? Almost nothing is spent on pain research. Less than half of one per cent of NIH budget in 2008. There are over 20 different splice variants in the mu opioid receptor, some of which are not addicting – research from Gavril Pasternak at Memorial Sloan Kettering Cancer Center. Money for research is urgent.

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Federal agencies have heard about deaths of addicts, deaths of people with pain (addicts?) who overdosed on opioids, heard from families, from police officers but not from people with chronic pain who have no voice. There is no “BALANCE,” no conversation. Only after the American Pain Society appealed CDC’s radical plans, that CDC allowed one partial exclusion in dosage cuts: to allow opioid for cancer patients, but only if undergoing active cancer treatment. However, not for those cancer patients who are not in active cancer treatment, who have severe chronic pain resulting from the cancer itself that destroyed nerves or bone or spinal cord or brain, not for pain from cancer chemotherapy or radiation: you will suffer the same severe sharp drop in opioid allowed for treatment of your chronic pain.

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Time magazine in 2011 reported: “Serious, chronic pain affects at least 116 million Americans each year, many of whom are inadequately treated by the health-care system, according to a new report by the Institute of Medicine (IOM). The report offers a blueprint for addressing what it calls a “public health crisis” of pain.”

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“…and the chronic suffering costs the country $560 to $635 billion each year in medical bills, lost productivity and missed work.”

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“Yet the reports’ authors said they believed that they had actually underestimated the incidence of chronic pain — that which lasts 30 to 60 days or more and takes a toll on personal and professional life — because their data didn’t include people living in settings like nursing homes. Further, as baby boomers age, the rate of chronic pain increases daily.”

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Unless you have experienced pain yourself, it is very hard to understand pain in others and to accept the fact that disabling severe pain can exist without obvious signs of fracture or other obvious causes. And if you are among the tens of millions who cannot afford the $10,000 or $5,000 deductible for medicine and doctor visits, heroin is cheap and can be found everywhere – death is the risk thanks to the American healthcare system that will not cover cost of your needs.

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Before we have an effective alternative,

CDC wants to take opioids away.

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Yes, side effects are a huge problem, but thanks to some relief from opioids, people are working or able to function. Since the sudden DEA conference late October 2015 announcing limits, I have been deeply concerned about the direction the American government is taking to deny medication for people with chronic pain. I have posted ten times on this radical nationwide experiment since October! – see many articles at top left below my photo. The CDC suddenly imposed limits on opioid medication for treatment of chronic pain, setting the daily opioid dose to be 100 mg morphine or its equivalent. Yet for years healthcare insurers have refused almost all forms of treatment with the exception of opioids, see the detailed list of FACTS at that link. Now the opioids are the last frontier, the final culprit. And then what? . . . nothing?

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There is no data to support this radical nationwide experiment. Many concerns of the American Pain Society were completely ignored. The anti-opioidists have won.

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People with chronic pain seem to be content to lose or to think that a few pain specialists can win their denials for drug coverage, while healthcare insurers’ profits go up by refusing to pay, by demanding “prior authorizations” that require doctors to jump one hurdle of forms after another, until finally, always: DENIED. This has gone on for years, vast, time consuming denials rather than practice of medicine. The more expensive the drug, the quicker and more comprehensive are the denials.

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Bottom line, insurers profit. CDC is interested in deaths from opioids, and they think training doctors in opioids is the same as training in pain management. I have made more than enough arguments on this site for years, and spent more than 15 years in better ways to treat pain.

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Just this moment, three letters of denial from insurance for 20 mg morphine, not 100 mg, no, they are denying a mere 20 mg, for severe pain, multiple diagnoses causing pain, “in accordance with CMS (Centers for Medicare …) guidelines.” That is the “training” in opioids. Why waste our time giving MD’s credit for 4 or 5 hours of training, and obtaining millions of dollars from pharmaceutical companies who make opioids for this “training,” in order for the DEA to go around the country “training” us, when opioids are being denied anyway? Denials for 20 mg morphine is not training. 

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Americans need to take action through the American Pain Society.

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I have written recently about the radical CDC opioid guidelines:

 

Tapering patients without sound and attainable alternatives

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Tampering with patient autonomy

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Failure to provide informed consent

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Avoidance of coercion

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Nonmeleficence – Do No Harm – Primum non nocere

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Treating patients like numbers not individualized

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Intellectual and academic dishonesty

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Anti-opioid zealots supported by zealous insurers? 

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Containment of drug costs, not pain

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Failure to assess risk vs benefit

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etc, etc – refer to prior posts

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These arbitrary actions are mind numbing and hopeless until voices of millions become united. Elected officials cannot afford to ignore the mounting deaths from prescription opioids that are killing white people. Clearly they can afford to ignore 116 million Americans with serious chronic pain.

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The material on this site is for informational purposes only.

It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

Relevant comments are welcome.

If any questions, please schedule an appointment with my office.

This site is not for email.

~~~~~

For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Please be aware any advertising on this free website is

NOT advocated by me and NOT approved by me.

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CDC Will Create New Injuries & Suicide with Unprecedented Experiment in Sudden Opioid Changes – Prediction


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Tapering patients without sound and attainable alternatives

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Tampering with patient autonomy

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Failure to provide informed consent

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Avoidance of coercion

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Nonmeleficence – Do No Harm – Primum non nocere

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Treating patients like numbers not individualized

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Intellectual and academic dishonesty

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Anti-opioid zealots supported by zealous insurers? 

Containment of drug costs, not pain

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Failure to assess risk vs benefit

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Chronic pain has long term consequences including

brain atrophy and memory loss

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We have a duty to preserve life, and relieve suffering.

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Is it morally wrong to do nothing when almost 18,000 Americans died of prescription opioids in 2014?

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Is it morally right to radically chop the opioid dose of everyone in severe pain?

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Are we relying on drugs rather than coping skills and physical therapy?

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CDC will profoundly limit opioid doses to 100 mg/day morphine maximum or its equivalent for severe pain.  Is this safe? Ethical? See several previous posts on the dosage limits and CDC proposal.

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Michael E. Schatman, PhD, who edited “Ethical Issues in Chronic Pain Management,” lectures nationally on optimal treatment for chronic pain when ethical principals collide, has published “The role of the health insurance industry in perpetuating suboptimal pain management.” Medical ethics is not a business model of “cost containment and profitability.” His essay “addressed some of the insurance industry’s efforts to delegitimize chronic pain and its treatment as a whole.” He examined the industry’s “self-serving strategies, which include failure to reimburse services and certain medications irrespective of their evidence-bases for clinical efficacy and cost-efficiency; ‘carving out’ specific services from interdisciplinary treatment programs; and delaying and/or interrupting the provision of medically necessary treatment.”

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Many of the above ideas are taken from the course on ethics he taught May 2015 at the American Pain Society annual meeting.

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I have spent 15 years developing alternatives to failed opioid treatment for chronic intractable pain and writing about that on these pages since April 2009. When patients have failed all known treatments, low cost  alternatives to opioid medications become unaffordable when not covered by insurance – cost may be $300/month out-of-pocket rather than a $30 copay for opioids costing $17,000/month. How many can afford $300/month for the rest of their lives when they are on disability with severe chronic pain?

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When there are no options, opioids are the last resort.

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There is no argument opioids are often misused when there are better choices of treatment but resources are lacking, even more so in rural and under-served communities. And studies show lack of evidence of benefit with opioid treatment — but my patients would not be able to work or care for themselves if not on opioid therapy.

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Opioids cause pain by creating inflammation in the innate immune sytem (brain/spinal cord).

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There is no argument that opioids can cause central sensitization – that means higher doses cause worse pain which is misinterpreted as requiring more opioid when instead pain would improve with less. Opioids cause increasing numbers of deaths (almost 18,000 deaths in USA in 2014 from prescription opioids, NOT street drugs). Opioids may lead to addiction and diversion. Efficacy of many drugs is often compromised by some form of toxicity or need to add drugs to treat side effects, often denied by insurers.

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Likewise there is misuse of surgery, procedures, nerve blocks, spinal cord stimulators, pumps which can lead to paralysis, anxiety, depression, insomnia and death. How many billions are spent on spine surgeries done simply for pain that is not surgically treatable?

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Opioids may be treating anxiety, mental health problems or addictions, but they also serve an important function in relieving pain. They may be the only option many patients have. Opioid taper can uncover or cause PTSD, depression, anxiety, insomnia, fear of withdrawal symptoms, inability to cope. Poorly managed or sudden opioid withdrawal can lead to severe hypertension, stroke, heart attack and/or intolerable side effects of substitute drugs.

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The disabled insurance system has shut down patient autonomy, by closing more than 1,000 interdisciplinary pain programs — now only 70. And are those truly interdisciplinary? or are they strictly procedure oriented with $50,000 pumps and spinal cord stimulators that have failed to work for my patients? Have they ever shown long lasting efficacy for 5 years? Have you seen the

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“Chronic pain a malefic force”

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“Pain kills”

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John Liebeskind, MD

Past President American Pain Society

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Tapering opioids in chronic pain is very different from tapering opioids in addicts and much more difficult than treating cancer pain.

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Unlike cancer pain, severe chronic intractable pain is endless, lifelong, day and night, often associated with depression, insomnia, anxiety, PTSD, hypertension, and disability caused by severe pain.

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Having taught cancer pain at an 800 bed cancer hospital, cancer pain may be easier to treat simply because most cancer pain is acute pain which responds better to opioids than chronic pain. Cancer is often treatable and pain resolves. And insurers are not battering doctors by denying medications for pain every couple months as they do for chronic pain. Stress! Denials nonstop! Paperwork instead of practice of medicine. Doctors cannot take the constant battering and leave.

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This unprecedented radical frightening cut in medication comes from the CDC National Center for Injury Prevention and Control.

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The CDC excluded cancer patients from this new chopping block.

Will that come next?

Sequoia wildflower

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QUESTIONS FOR THE CDC & ANTI-OPIOIDISTS

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 Where is the data? What is the risk/benefit ratio for this radical cut in dosage? There is no evidence upon which to base their chosen dose.


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40 million Americans have severe pain, 17.6% of the adult population, not counting children with severe pain or adults with moderate pain.

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Will the CDC monitor the increase in auto accidents that occurs from untreated pain? People with incident pain have slowed reaction times due to pain. Despite normal strength and cognitive function, they may not be able to move muscles quickly due to untreated pain. They may not be able to move at all when severe pain clouds even the ability to think.

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Will CDC monitor risk of suicides from untreated pain? Columbia University recently published on suicide in only one pain syndrome, but there are many forms of severe pain, not just one.

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When will NIH and CDC fund research on medications besides opioids for treatment of pain?

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Will CDC monitor how many days of lost work, lost jobs from opioid withdrawal?

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Will CDC monitor how many new injuries occur from untreated pain? My patients may be perfectly strong, but cannot prevent falling if sudden pain prevents them from stabilizing their hips, legs, or spine.

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How suddenly do they demand this be implemented? Insurers have already been cutting opioids for months and allow 30 days on the last prescription. What then?

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Will CDC recommend that insurers provide medications for opioid withdrawal?

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Will CDC recommend that insurers allow payment of  medications such as Wellbutrin to replace dopamine for the depression malaise that occurs after opioid withdrawal that may last for one year or more?

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Will CDC recommend admission to hospital programs when patients are unable to suddenly drop opioid dose to the magical 100 mg without supervised inpatient care?

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Will CDC have nationwide training programs for doctors to teach how to deal with and study the sequellae of this unprecedented population experiment in suicide, new injuries, depression and hopelessness in patients and even physicians?

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Will CDC recommend anything for untreated pain after opioid reduction?

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Emily Dickinson

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Pain has an element of blank;

It cannot recollect

When it began, or if there were

A day when it was not.

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It has no future but itself,

Its infinite realms contain

It’s past, enlightened to perceive

New periods of pain.

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HamiltonFallsSequoiaHighSierraTrail

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The material on this site is for informational purposes only.

It is not a substitute for medical advice,

diagnosis or treatment provided by a qualified health care provider.

Relevant comments are welcome.

If any questions, please call the office to schedule an appointment.

This site is not for email.

~~~~~

For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Please be aware any advertising on this free website is

NOT advocated by me and NOT approved by me.

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Be the change you wish to see – or walk away. Money at NIH


 

 

A Turning Point

 

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John C. Liebeskind, 1935 – 1997, distinguished scholar and researcher, past president of the American Pain Society, had the radical idea that pain can affect your health.

 

Research decades ago by an Israeli team at UCLA and others had shown “that pain can accelerate the growth of tumors and increase mortality after tumor challenge.” Decades ago Professor Liebeskind lectured all over the country: Pain kills.

 

He wrote an editorial in 1991, summarizing a life’s work:

 

“Pain and stress can inhibit immune function.”

 

 

Quoting John Bonica, the father of modern pain management, he wrote:

 

“Bonica has long argued that the term ‘chronic benign pain’ (used in distinction to pain associated with cancer) is seriously misleading.  Chronic pain is never benign, he contends; “it is a ‘malefic force’ that can devastate its victims’ lives and even lead to suicide.”

 

 

Liebeskind continues, “It appears that the dictum ‘pain does not kill,’ sometimes invoked to justify ignoring pain complaints, may be dangerously wrong.”

 

Pain mediates immune function

 

Importantly

 

  Opioids mediate the suppressive effect of stress on natural killer cells,

 

 published in 1984, immune system.

 

Alcohol increases tumor progression, 1992, immune system.

 

It used to be news.

He did not live to see change.

 

People just want to go on doing what they’re doing.

They want business as usual.

 

 

After 1991, we saw the great discoveries of neuroinflammation, pioneered by Linda Watkins, PhD, the early understanding of the innate immune system, its involvement in chronic pain and depression, and a few weeks ago, a British team showed neuroinflammation in teens with early signs of schizophrenia and DNA markers.

 

 

Major Depression has the same neuro-inflammation found in chronic pain, often responding to same medications, in particular glial modulators – immune modulators. Now, perhaps early schizophrenia will respond to glial modulators, reducing inflammation seen on scan in teens, before they become homeless and burned out by antipsychotic drugs

 

Inflammation out of control destroys neurons

 

Fire on the brain

 

 

We must be the change we wish to see

 

It’s not just the Bern. It’s been starting. Forces are finally coming together. We want change. It’s been too much. Too long.

 

We won’t take it anymore.

 

I figure if I tell you about it, you might just mention it to someone to pass it on. That is all. One small action may lead to change. Activate inputs to the NIH strategic plan.

 

 

~ Action needed ~

 

Prices of drugs becoming unaffordable

No new drugs for pain or major depression

Research to repurpose existing drugs

Expose the politics destroying our compounding pharmacies

 

Above all

The #1

Major Priority:

Request NIH to solicit priority call for research on

Glial modulators of the

Innate immune system

 

 

Why?

 

Glia modulate

chronic pain, major depression

and almost every known disease

 

Glia are your innate immune system

 

Inflammation kills

 

 

 

 Stress kills. Inflammation kills.

 

 

Pain kills

 

In the 1970’s, Professor Liebeskind and an Israeli team at UCLA injected cancer cells to two groups of rats that had sham surgery. Cancer spread much faster and killed far sooner in the group with poor treatment of surgical pain.

 

 

~ Pain kills ~

 

He lectured all over the country

 

Forty five years ago

 

 

I’m gonna be dead before I see this country do anything but unaffordable opioids and the magical ineffective trio of gabapentin, Lyrica, Cymbalta to treat chronic pain. The devastating, blind, nationwide emphasis does nothing to address the cause: inflammation, the innate immune system gone wild.


 

 

Innate immune system in action

 

Untreated pain suppresses the hormone systems too.

 

Untreated depression – same inflammation kills lives.

 

Where’s the money?

 

We are the change we wish to see. It’s pitiful I am so lazy. Suddenly, too late, we may need something, but, aha, no new drugs in the pipeline.

 

 

 

~ Make a joyful cry to NIH ~

 

They are soliciting input from professional societies

 

If your condition has failed all known drugs for pain or major depression, then make a joyful cry to NIH, now, before they give away all that nice new $$$$$money$$$$$.

 

 

Follow and join

 

American Pain Society

 

 

International Association for Pain

celebrating 40 years of pain research

 

 

Reflex Sympathetic Dystrophy Syndrome Association

help for CRPS/RSD  

 

 

 

The key to CRPS/RSD pain will apply to all forms of chronic pain, in particular the most difficult form, neuropathic pain. RSDSA funds research into all forms of chronic pain, not only Complex Regional Pain Syndrome (CRPS/RSD). Their scientific board members are not funded by opioid money.

 

 

 

Exactly

what is the annual cost of care

as fraction of GDP

for the growing population of Americans on opioids

for one year, for lifetime?

 

 

People are dying from prescription opioids and those who need them find they don’t work well enough. Prescriptions opioid costs must be a huge fraction of the medical costs in the United States GDP. You are required  to see a doctor every single month each year, often lifelong, just for one opioid, 12 months a year x 30 years x tens of millions of people and increasing – a growth industry. Not even counting $600 a day for the opioid, what the cost of monthly visits for 30 years? Not counting the army of DEA, FDA, CDC agents watching the opioids like a hawk. We all have to be sharp, addiction is growing. Addiction aside, deaths from prescription opioids are shaking up the CDC forcing urgent change this coming month.

 

 

 

Opioids do not work well for chronic pain

We need better

It’s not just the $600/day price

They just don’t work

 

 

donate

 

 

Raise a joyful noise at NIH now or write back at us readers with comments and better suggestions. Tell others what you’d like to see. Which politicians do you know would be most interested in this at national levels and organizations?

 

You may never see this change unless you do it now. Other forces will get this new money.

 

 

Turning point now

May not return

 

 

We are at a turning point and we will fail to catch the sail that’s coming fast to carry all research money in their shiny big stem cell direction. They never look back.

 

 

There is so many medications we can use today, FDA approved drugs that can be re-purposed and applied to recent cutting edge science. Someone must pay to do the work to study this.

 

 

Re-purpose old drugs

 

 

Stanford just showed a popular generic drug improved recovery of stroke paralysis in mice to begin at 3 days rather than 30. Old drug, new purpose, of course more years of testing to confirm in humans. Brilliant team applying new science.

 

 

Request
NIH to solicit a

Special Invitation

for 30 good protocols to

repurpose old drugs

 

 

Hundreds of old drugs, already approved, could be involved in mechanisms we have recently learned about. Speak up or money will go to shiny new stem cells. None for chronic pain or major depression. No company will find this profitable – it must be funded by NIH. A popular generic sleeping pill can bring astonishing return from stroke paralysis.

 

 

Congress has not opened this new money to NIH in many long years. How often will there be extra money?

 

 

donate

 

 

Lawrence A. Tabak, D.D.S., Ph.D.
Principal Deputy Director, NIH, solicits you to

Review the NIH Strategic Initiative Plan and their

Request for Information (RFI) and the NIH website

and provide your feedback via the RFI Submission site

 

 

This is for “stakeholder organizations (e.g., patient advocacy groups, professional societies) to submit a single response reflective of the views of the organization/membership as a whole. We also will be hosting webinars to gather additional input. These webinars will be held in early to mid-August.

 

 

 

Be the change you wish to see

Donate to those organizations

to solicit the change you wish to be

 

 

 

Happy New Year

Rejoice!

There’s money at NIH

 

 

 

 

 

 

The material on this site is for informational purposes only.

It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

Relevant comments are welcome.

If any questions, please schedule an appointment with my office.

This site is not for email.

~~~~~

For My Home Page, click here:  Welcome to my Weblog on Pain Management!

 

 

 

 

Opioids and Deaths – If Sloan Kettering Cancer Center Can Do It, Why Can’t My Hospital OK Herbal & Compounded Medications?


 

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Gina Kolata reports in NYT

on the breaking study by two Princeton Economists    

 

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The key figure

Screen Shot 2015-11-05 at 7.53.11 PM
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“The two Princeton economics professors — Angus Deaton and his wife, Anne Case — who wrote the report that is the subject of my front-page article today about rising death rates for middle-aged white Americans, have no clear answer, only speculation. But the effect is stark. Dr. Deaton and Dr. Case calculate that if the death rate among middle-aged whites had continued to decline at the rate it fell between 1979 and 1998, half a million deaths would have been avoided over the years from 1999 through 2013. That, they note, is about the same number of deaths as those caused by AIDS through 2015.”

  .

 

“…The dismal picture for middle-aged whites makes Case and Deaton wonder how much of what they are seeing might be attributed to the explosive increase in prescription narcotics.”

.

 

“What’s interesting, Dr. Case said, is that the people who report pain in middle age are the people who report difficulty in socializing, shopping, sitting for three hours, walking for two blocks.”

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.

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“Dr. Deaton envisions poorly educated middle-aged white Americans who feel socially isolated are out of work, suffering from chronic pain and turning to narcotics or alcohol for relief, or taking their own lives. Starting in the 1990s, he said, there was a huge emphasis on controlling pain, with pain charts going up in every doctor’s office and a concomitant increase in prescription narcotics.”

.
 
“We don’t know which came first, were the drugs pushed so much that people are hypersensitive to pain or does overprescription of the drugs make pain worse?” Dr. Case said.”

.

“Dr. Deaton noted that blacks and Hispanics may have been protected to an extent. Some pharmacies in neighborhoods where blacks and Hispanics live do not even stock those drugs, and doctors have been less likely to prescribe them for these groups. Dr. Deaton said.”

.

“A black person has to be in a lot more pain to get a prescription,” Dr. Case said. “That was thought to be horrible, but now it turns out to maybe have a silver lining.”…..

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Commenter: “D. Morris 1 hour ago
“unfortunately it’s easier to get a prescription of Oxycontin, or legally buy a handgun, than it is to get affordable mental health care in…”

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..
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My Comments are too long, need days of edits, no time to do.


We have so many inexpensive generic medications in allopathic, Ayurvedic, and complementary medicine that are never taught.

.

.

It is cost effective for Universities to limit their instruction to Anesthesia pain that teaches procedures. Thank goodness when they work. But is that all we teach? I fear the answer is yes. That was all that was available in Santa Monica in the early and mid 1990’s, after UCLA closed the Anesthesiology Interdisciplinary Pain Management Center in 1991 – others closed nationwide. It is cost effective to teach and do procedures.

~

Epidurals

~

 Bread and butter epidurals have never been compared to the same steroid and local anesthetic injected to the adjacent muscle without putting a needle into the spine. It could be equally as effective, able to be done in office, without surgery and x-ray scheduling, but then it would not be a good income generator. Selective nerve root blocks and facet blocks can be very helpful. But are epidurals just flooding the area with the same effect as a local muscle injection? What are we teaching before we get to procedures? How many patients can afford to take time off from work or school for repeated costly procedures?

~

Glial modulators, compounded medications

~

.

 

It would help if MD’s were trained (with CME credit) in the use of generic medications to include glial modulators that mitigate the need for high doses of opioids. There is often more relief than expensive procedures and hardware can provide – which may not work or may be short lasting and unaffordable for many, either due to cost or time away from work every few weeks.

~

Physical Therapy

~

.

Good training in Physical Therapy would be the very first step, not by PhD’s who teach fine academic theory, but by certified Orthopedic Physical Therapists with decades of bedside experience are needed to teach therapists who have shown time and again that the most basic P.T. is not being done in this country. Even people with purely neuropathic pain often develop mechanical changes, splinting to avoid pain. That must also be addressed.   

.

.

I do not mean to imply that opioids are not useful. But there is more to pain relief than opioids and I suspect it may not be taught at all. Opioids rightfully remain on the WHO list of ten most essential medications. But when you use them – and believe me I am a wimp and would not be able to tolerate pain, but when you use opioids for years and years, how effective will they be when you really need them far more?

.

Opioids are essential for many of my patients and when they fail, when all drugs fail including opioids, I know one thing is on their mind, and it grieves me that this country does not care enough to fund more than a pittance for pain research. This country must do better. Nobel prizes are abundant in La Jolla, but how about translational research in the clinics where we try to keep patients functioning and able to return to work without opioids.

~

Drugs do not address muscle

Trigger Points

~

.

.

Any doctor can do simple trigger point injections if they knew how to identify trigger points, the classic spots on common overused muscles that mimic disabling knee pain or headache or loss of grip strength, yes a strained, shortened brachioradialis – not neurological but do MD’s know?  P.T. specialists too, I hope they know trigger points, but they are not always communicating them to me because I find them and they can be simple.

.

  .

 

Could they add the identification and training of doctors to know meaningful differences in types of physical therapy. They all should be taught by an Orthopedic Physical Therapist like Bruce Inniss who trained decades ago at Rancho Los Amigos, a national treasure center back then innovating care for the most difficult paralyzed, handicapped and publishing it. Not the fancy PhD theory that the newer P.T. grads know – good but not best. Why don’t all physical therapists know the basics Bruce finds every day —- the same basics that were never once treated in the 30 years that my disabled patients were forced to return to. They come from the best university specialists in the country, and they all groan when I say “P.T.” until the next day after they have seen Bruce for their “intractable pain.” Thirty years of lost life. Expensive, joyless, hoping for the worst, praying for the day you will be old enough for Medicare so you could afford care because it has cost you your life savings. I am grateful for academic researchers for their brilliance, their ability to tolerate an academic environment. Best of all I love their shiny new cardiology toys and Dr. Topol translating medicine over wi-fi. Lets not leave behind the basics.

.

It shocks me to see some of the basic things were overlooked or not even considered in people who come to me, often seen by the best five pain centers in the country. Of course I rely on those centers who may be able to help my patients. But I am shocked by the omission of simple basics: physical therapy being a key ingredient. That alone could save lives and save our taxpayers billions if the investment were contemplated.

.

.

Last week, the well respected pain specialist Joseph Shurman, MD, at Scripps, said that young Rehabilitation Pain Specialists were rare. Few are going into Pain Management from an essential field. It’s a tough field, changing daily.

.~

 

~

What about other things?

 Compounded medication

Botanical, Ayurvedic, Herbals

~

.

Hospital and university pharmacy committees must begin to open their minds to highly valued compounded and herbal drugs made by respected compounding pharmacists. We all know the high volume thieves who delivered contaminated IV’s, and had  the cheapest prices that brought a bad name, but why stop beneficial interstitial cystitis infusions ordered for decades by the senior specialist in the field? This attitude against compounding and against highly recognized herbal and Ayurvedic preparations must be improved. For example, Boswellia sold by Gliacin.com points to studies by the headache specialist in Scottsdale who trained at the Mayo Migraine Clinic. His site has publications showing 7 of the most intractable Indocin-responsive headache syndromes were improved with Gliacin (Boswellia)..

Most notable in the field is the website and research by Sloan Kettering Cancer Center on herbals and botanicals. You can hardly exclude half the country from your hospital if they found relief at last?  Surely you must teach and know the effects of patient use on FDA approved medications you are prescribing.

~

.

What happens to that patient, whose intractable pain

responds only to compounded medicine,

when they have to be admitted to hospital or rehab

for weeks where compounded medications are forbidden?

Do we make you worse to get you better?

~

.

Hospitals and universities are run by respected seniors, whip smart, who have no experience with many tools that are essential to many in our population. They are rightfully very protective of our beloved high technology centers and want no lawsuits from unapproved drugs not sold by big pharmaceutical companies. Not all of us live in such rarefied privileged worlds in our daily lives. We already have the tools and could use many of them at home without burdening resources. I would love to see physicians on hospital pharmacy committees work side by side with compounding pharmacists and be protected by law for using such inexpensive medications. Insurers have stopped coverage for compounded medications in the last four years, finishing the job in June with Tricare no longer paying. Medicare never has.

.

So goes medicine in this country. We all lose. We are reaching for bright shiny things that dazzle me too. Don’t forget to keep the basics, the first thing I learned when teaching at UCLA Epilepsy Center. Often, the basics were not omitted. Case solved.

.

It’s hard to know what to trust in so-called alternative treatment, but we must begin to trust if we have evaluated the credentials of best providers. Can we not trust even your patient’s heavily documented history? 

  .

 

We must do better. It is costing too many lives. The study I mention, above, just published, is tragic and predictable. Just ask any of us who see this daily. Ask your neighbors and family.

.

Politicians could give us a law to protect hospitals from law suit if they allow compounded medications from highly respected compounding pharmacists who are owners of high quality small trusted pharmacies — not those big ones without supervision, where quarterly profit is the goal. We must keep these precious resources of medicine alive so that only the upper middle class can afford them. Does everything have to have overpriced studies and FDA approval with publications by many peers? We all know what that did to colchicine pills used for 100 years for gout, taken 3 times a day. Everyone knew they worked. But if you are the 1%, you invest a little and you can charge $7 each, $21 every single day for just one pill for life, instead of pennies a day.   


 

.

INTRACTABLE PAIN IS NOT INTRACTABLE

IF YOU USE THE TOOLS YOU ALREADY HAVE

.

It is past time we start teaching tools for pain that many of us daily encounter. Teach to doctors and physical therapists at the very least, but bring it into middle school and even younger.

 .

So many people are forced to put up with lack of medical care, lack of jobs, lack of income, and disability from working in factories owned by the 1% who control care, often through worker’s compensation.

.

.

Now insurers require ICD10 codes before pharmacy can fill an antidepressant. That feels like ICD10 prison, and this comes at the same time as 70,000 new codes – merely an extra 50 hours a week. Why is the MD not the judge of medication after due deliberation of all the details, all the failed drugs. Practicing medicine without a license has become the standard of care since 1990, out of the doctor’s hands. Now that and insurance will not accept a prior authorization for a low dose of 25 mcg patch the patient has required for the last ten years for their lupus, Sjogren’s, RSD, and painful neuropathy. We have all felt its claws.

~

~

computer system errors may appear typing letters out of sequence – please forgive, no time to edit and finding gremlins everywhere, possibly in the opinions so dangerously passionate. We can do better America. You don’t have to take it. Step up! Vote for the ones who care about your well being.

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 , Ayurvedic, Herbal “

Proposal: A 5-Year Study of Best Methods to Treat Intractable Pain


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PROPOSAL

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A controlled trial to improve care for chronic pain:

The study to understand prognoses and preferences for

outcomes and risks of treatments

.

..

 

..

Model after Joanne Lynn’s 1995 SUPPORT Study

.

A controlled trial to improve care for seriously ill hospitalized patients:

The study to understand prognoses and preferences for

outcomes and risks of treatments (SUPPORT)

.

.

Proposal

 .

A controlled five-year trial to improve care for outpatients with chronic pain. The study will be designed to understand prognoses and preferences related to the outcomes and risks of various treatments.

.

The focus:

.

Intractable pain, those who have failed pain medications and procedures or those with moderate to severe pain who only partially respond.

.

Study polypharmacy, compare medications that may show synergy or that additively improve relief.

.

Study and search for glial modulators – medications that reduce proinflammatory cytokines.

.

.

Problem

.

Research is needed to give persons with intractable pain the data and the confidence that they can affordably use to choose the best treatment needed to get their lives back again. They have already spent tens of thousands. They may be unable to work. We all need these options.

.

There are a few small islands in this country doing a radical experiment in managing pain without opioids [narcotics, the police term] as discussed in the New York Times in May 2014, and the 2008 Mayo Clinic study. Efforts such as these need to be supported with data as soon as possible in order to reduce the burden of disability and pain in our society, especially our youth, our children, our veterans, our aging seniors, well everyone. We can be productive and we want to be.

.

I have seen remarkable outcomes, pain that failed to respond to all known pain medications, going into partial and even total remission, lives restored after weaning off opioids and appropriate treatment given.

.

We cannot expect any medication to work every time. How often can we achieve better results after opioids are tapered off? Opioids may prolong pain in Complex Regional Pain Syndrome where remission seems possible only after they are stopped, yet opioids may be essential in many forms of chronic pain. We need data on the radical experiment to manage pain without opioids, and determine how best to manage chronic pain with them.

.

Opioids have a long history of being the drug of choice to treat chronic intractable pain by doctors who lack information and training about other exciting options now coming to the fore. Compounding the problem is the fact that physicians do not know how to diagnose musculoskeletal pain and do not know how that good physical therapy is actually effective.

.

Healthcare providers need data about all the options to begin to address the toll that chronic intractable pain exacts and government worldwide need to know what is cost effective and possible. Many countries cannot obtain opioids.

.

We must not be insensitive to the financial burden that frustrates patients when they spend tens of thousands of dollars for drugs that provide little if any benefit.

.

Investment in developing nonopioid treatments for pain does not even begin to compare to the investment in opioids for pain. The few medication choices we have are not enough. Often they fail to help. Expensive drugs are not the best choice if they are not affordable or they are limited to diabetic neuropathy when more than 100 types of peripheral neuropathy have been identified, plus many more types of even more severe neuropathic pain not classified as neuropathy. Shall we continue to ignore all those because FDA has classed these few new drugs for diabetic neuropathy exclusively?

.

Let me be clear, prescription of opioids is justified and they are valuable. Opioids are on the World Health Organization list of ten essential drugs. BUT there is little or no research on treatment of intractable pain without opioids.

.

Neuropathic pain, nerve pain, is the most difficult to treat. Neuropathy, radiculopathy, transverse myelitis, adhesive arachnoiditis, central pain, RSD, Guillain-Barre, trigeminal neuralgia, Tic Douloureaux, post herpetic neuralgia, to name a few. It is not enough to limit research of neuropathic pain to diabetic neuropathy when it fails to address all other causes. When FDA approves a drug only for diabetic neuropathy, insurers deny the drug for the other 95% of you without diabetes. Insurers may choose to read guidelines as mandates, fiats,  marching orders.

.

Neuropathic pain is not the only concern. Physicians do not know how to diagnose musculoskeletal pain. How can they if only 3% of medical schools teach pain management and when doctors do not know how to assess ineffective physical therapy when they have never seen better.

A patient dislocated her hip 7 times, manually repositioned each time in ER. The 6th surgeon impinged a wide band of muscle in the joint causing muscle all down the thigh to bulge 5 to 7 mm high, of rock hard spasm with intense relentless pain. The 7th surgeon had the gentle ability to restore position and release the entrapment. A light touch across the thigh even through clothing can detect the cause. Would a surgeon have discovered to release the entrapment unless she had dislocated a 7th time? Simple muscle strain, undiagnosed by a surgeon who deals with muscle all the time, was not even noticed and he ignored the acute pain it caused. She has now learned how to avoid dislocating that new hip. Had the muscle not been appropriately identified as cause, she would not be able to move by now. But the surgeon should have had the skills to notice instantly before those muscles became chronically strangled. She was referred for manual physical therapy and thankfully, before all else could occur, she dislocated and was repositioned by the 7th surgeon. A wonderful teaching case for a teaching hospital that should be every hospital. Grand Rounds for pain cases.

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MAJOR FUNDING DECLINE IN PAIN RESEARCH

.

 BEFORE 2008

.

 BEFORE CONGRESS CUT NIH BUDGET BY UNTHINKABLE 30% IN 2010

.

Perhaps the biggest impediment to gathering data about pain management is the lack of government funding for pain research and lack of a Pain Institute at NIH. If not, funding will continue to be fragmented and split elsewhere, not to learn about one of the most costly problems in every society.

.

In 2008, before the worldwide depression, pain research was in major decline. The AAAS, the American Association for Advancement of Science told us then:

.

“Federal funding for pain research is declining sharply, more than 9 percent a year since 2003, according to a new study published in The Journal of Pain. Pain research, as a result, now accounts for only 0.6 percent of all grants awarded by the National Institutes of Health (NIH), despite the high prevalence of chronic pain in the U.S.

.

“This startling finding shows the government’s meager investment in pain research is seriously out of proportion with the widespread chronic pain incidence in our society, which is estimated at one in four Americans and accounts for more than 20 percent of all physician office visits,” said Charles E. Inturrisi, president of the American Pain Society and professor of pharmacology at Weill Cornell Medical College, New York. “And this disparity is not attributable to years of budget cuts at NIH because the Journal of Pain study clearly shows pain research has a higher percentage decline than the overall NIH budget. So the drop in agency funding has not affected all research areas equally.”

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[emphasis mine.]

.

Research in pain was sharply declining prior to 2008. Then a 30% cut across the board in 2010. Thank the American Pain Society for those ancient 2008 figures. No one had ever asked – which is why we need a Pain Institute at NIH.

.

Frustration is compounded the last few years by insurers no longer willing to authorize many opioids and non-opioid medications, even generics.

.

As for the cost of opioids,  a single opioid for one patient may exceed $80,000 per month when the patient is required to use with another long acting opioid, and often several nonopioid adjuncts just to bring pain down from 9 on scale of 10, to a slightly more bearable 7 or 8 which is severe, relentless and prevents sleep and ability to concentrate. One drug that costs pennies to make, sells for $80,000 a month to allow 4 a day when at least 6 a day are needed and it is only one of many for pain every day.

.

Prescription of opioids is justified and may be invaluable.

but there is little or no research on

 treatment of intractable pain without opioids.

.

 

.

We need national consensus guidelines based on data

.

We must do a better job treating intractable pain. We need guidelines that have more to offer than the few opioids and few adjuvants we now have, so few in number, so great the need. Can we know when is it true that opioids are indicated? Our use is many times more than all the other First World countries?

 

.

Treatment must be individualized

.

Data is needed to guide choice

.

.

Compounded Medications are among the

most useful drugs we have for treatment of intractable pain

.

Compounded medications may be the only ones that help, and can reduce pain to zero. We can re-purpose the delivery of any medication, as long as it has been FDA approved. But the last few years insurers have been discontinuing coverage for compounded medications and Medicare has never covered them.

.

This must change. Who is funding that political blockade that denies coverage for compounded medicine? The cost may be $120 for one compounded medication vs $80,000 for one opioid. Either way, the person with intractable pain likely needs 3 or 4 or 5 or 6 medications, compounded or not. Who can afford $400 per month out of pocket for compounded medications that work, when insurance will not cover the affordable drugs. Who can afford that out-of-pocket expense if insurers cover nothing for your pain, neither the bright shiny opioid or the compounded sprays, capsules, suspensions, creams, troches, as well as the essential solutions instilled into the bladder for interstitial cystitis?

.

This must change. Lawmakers must be called to account for allowing and perpetuating the inhumane taking advantage of those who suffer intractable pain.

.

A first step in getting lawmakers to pay attention is to amass a body of compelling data.

.
.
BALANCE IS NEEDED

..

The United States as a society cannot afford for pain research to die and go bankrupt and leave only opioids as the standard treatment for hundreds of types of pain. Someone has to begin the needed studies. It does not just bankrupt the patient, it leaves us all bankrupt, the country most importantly. It ends marriages, tears apart families. To be struck down as a child with intractable nerve pain the rest of your life, or be struck in your prime, is devastating. And disability gets routinely denied for pain. Why? Perhaps because pain is taught in only 3% of university medical schools. How are doctors to imagine that pain can end lives when they have no experience seeing how disabling it can be?

.

.

 If doctors cannot see the devastating toll that pain takes,

how can we expect accountants to see it?

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.

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The Study We Need

.

Solution

.

 To gain a comprehensive and compelling picture of how pain impacts the population and how to effectively treat it we need a large-scale study:

 .

  • Five years in duration

  • 10,000 outpatients – statistically this must be adjusted to obtain multiple outcomes

  • At five major university teaching hospitals for regional differences

.

 Outcomes

.

The study will yield important information about the following:

..

  • Efficacy

  • Pain Numeric Rating Scores, Percent Improvement

  • Functional Improvement, etc

  • Compounded medications

  • Racial and Gender Disparities

  • Addicts who have chronic pain

  • Top notch manual physical therapy* [see below], not for what passes in most places. This must change ASAP. United States is far behind other countries. Even if the condition is neuropathic, it often becomes musculoskeletal after splinting for months, years

  • Interventional procedures

  • Meditation

    How you brain can heal your body and your body heal your brain.

  • Pain changes DNA, neurotransmitters. Have we permanently changed them with opioids?

  • Polypharmacy. When employing one drug alone is unlikely to lead to a successful outcome.

  • Stem cells for joint pain – autologous lipid derived mesenchymal stem cells

  • rTMS, experimental after 20 years, is it still better for acute than for chronic pain?
    Who will benefit, for how long? How many weeks of relief for that $15,000 investment?

  • Glia, the Innate Immune System

Opioids create pro-inflammatory cytokines that create pain and opioid tolerance.

Restore cytokine balance, reduce inflammation and pain.

Which of our existing medications either trigger or reduce inflammatory cytokines in the CNS?

  • Pain in the person with Alzheimers dementia

  • Danger of combining opioids with benzodiazepines

  • Danger of long term use of opioids (regardless if short or long acting)

  • Appropriateness of using opioids as a first choice in acute pain (loss of a milk tooth, sore throat in a teenager, acute back pain, ankle strain, etc.)

  • Appropriateness of opioid holidays.

  • Post op pain can be avoided completely with combined use of oral low dose naltrexone and ketamine IV anesthesia. Patients discharged directly from recovery room with no need for pain medication for months or years

  • Cost Benefit Analysis

 

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Five Conditions Will Be Studied

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Strong emphasis must be placed on neuropathic pain that so often fails to respond to any intervention

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1. Complex Regional Pain Syndrome

The Netherlands invested €25 million over 5 years to study this one devastating pain condition, far out of proportion to the incidence in that small country. There are pain specialists who cannot recognize it and/or doctors who routinely deny disability for this devastating pain, like death in life.

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2. Low Back Pain

Define criteria for surgery.

If we wait too long before surgery is done, will we ever reverse the chronic pain that has set in?

Have we condemned that patient to monthly visits for opioid the remaining 50 years of their life?

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3. Other neuropathic pain conditions such as adhesive arachnoiditis, trigeminal neuralgia, transverse myelitis, Tic Douloureaux, Post Herpetic Neuralgia, Interstitial Cystitis, Vulvodynia, Proctalgia, Pudendal Neuropathy


4. Painful peripheral neuropathy nondiabetic and Painful Small Fiber Neuropathy  all forms of painful neuropathy

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5. You choose – central pain?

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What We Must Do Now

 

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  • Find a pain advocate like the cancer advocate of the 1950’s that changed attitudes for research

  • Fund the pain SUPPORT study

  • This will spin off enormous research ideas that we must begin separately to implement with research as each develops, the need is beyond urgent. How many more years can we make everyone wait?

  • Write letters, to congress, the White House. Real letters, not email, not signature lists. Congress will not hear us unless we speak in very, very large numbers.

  • Help the topic of intractable pain become a part of the 2016 presidential conversation.

  • Incentivize teaching hospitals to teach pain management and to develop options for nonopioid treatment of chronic intractable pain. Pain is a multidisciplinary field, not limited to Anesthesiology procedures.

  • Create an Institute for Pain Management in addition to the 28 institutes at NIH, three of which are for addiction, none for pain. Pain is the number one reason people seek medical help.

  • Require that pain specialists sit on the FDA advisory committees for pain medication – none recently.

  • Require insurance coverage for compounded medications.

  • Prevent FDA from limiting medication to cancer pain.
    Cancer pain does not exist.

    There are basic types of pain that occur in persons who have cancer, neuropathic pain being worse than other forms of “cancer pain.” It has the same medication response or failure to respond as persons whose pain is not due to cancer.

  • How do we restrict the use of opioids to severe pain when there is nothing else to offer and after everyone is started on opioids by their family doctor years before they see a pain specialist?

  • Novel and ancient methods for treatment of pain should be explored including cannabis and possibly hallucinogens

  • Isolation of pharmacologically important medicine from rainforest and deep seas must be done before they disappear.

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Physical Therapy is the #1 Key to Chronic Pain

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Manual Physical Therapy was introduced to the United States in the late 1970’s but is rarely practiced or not done well. It does not mean “hands on.” It derives from techniques brought to us by British Commonwealth and Scandinavian countries. Our healthcare providers do not know how to differentiate between good and useless practices. Fortunes and lives are wasted hinging on that distinction. Pills never can undo the harm brought about by common musculoskeletal issues – and our providers have no training in recognizing simple muscle trigger points, let alone intractable connective tissue contractures. My patients have been misdiagnosed as histrionic, drug seeking, personality disorders, and worse. It boils down to ignorance and lack of basic training, let alone believing what the patient says and not having the tools to help.

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The trend is for year long residency programs following the 3 year Doctorate of Physical Therapy (DPT).  The year long residency program is a very positive step.  The limitations are that it is a year with a clinical staff that may have a specific perspective.  The push towards evidence based practice is a reasonable step but should not exclude considerations of outside the box treatment options.

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The osteopathic manipulative technique has been a cornerstone of best education for physical therapists.  The craniosacral approach is an offshoot from that tradition.  When we get to visceral mobilization, the evidence is much harder to produce but that does not have me shy away from its application.

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Movement is critical for the hormonal regulation of the body.  Chronic stasis leads to numerous changes that compound an underlying medical diagnosis.  We see that with a 16 y/o female, Lyme’s disease, CRPS diagnosis, bedridden for years.  She is significantly benefiting from stretching dysfunction and improving axial extension.  Another who quit walking had global lower limb connective tissue contracture.  Walking is currently limited by soft tissue contracture through the tarsal tunnel, affecting the plantar nerves and the burning and tingling with walking greater than 5 minutes at a time.  Mobilizing the soft tissues will ultimately restore function. This 20 year old quit college due to pain and one first visit requested motorized wheelchair and Social Security Disability. This young person will walk again.

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There is no end point to this educational process except when we think we know it all.  No certification, no degree, no one course signifies competency.  Ongoing intellectual curiosity is the most important element in preparation.

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Prescription painkiller overdose epidemic in the U.S.

Not in other countries

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Pain Management centers at major universities closed in 1991. They lose money, are time consuming, require team conferences that are not reimbursable. Thus began the era when prescription opioids took off for noncancer pain, and no one was generating nonopioid approaches to chronic pain. Anesthesiologists shifted to procedures – that is their focus after all. Procedures are not applicable to many types of pain.

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“Since 1999, the amount of prescription painkillers prescribed and sold in the U.S. has nearly quadrupled, yet there has not been an overall change in the amount of pain that Americans report.”

from the CDC report of prescription painkiller overdose epidemic

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I feel I have failed when I have to point out to my own patient whose pain is severe, that the high dose opioid I have prescribed is not helping, or is creating pain; when I know there are other options which are not available because the FDA has not approved them or because they are prohibitively expensive. I have failed when so many medications I prescribe are not on the formulary.

 

We need a mandatory formulary available for those with intractable pain.

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There were 16,651 deaths from prescription opioids in the U.S.in 2010, “Starting with 4,030 deaths in 1999….” “…nearly 60 percent of the drug overdose deaths (22,134) involved pharmaceutical drugs. Opioid analgesics, such as oxycodone, hydrocodone, and methadone, were involved in about 3 of every 4 pharmaceutical overdose deaths (16,651).” It’s far higher now. A CDC report stated that one in every 20 U.S. adults has a history of [opioid] use – not abuse, but use.

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Monitor risk, yes, but that should not get all the investment. Many addicts would not be there if there were better treatments for pain, if they had not been given opioids after a minor procedure or injury that is better treated with real therapy, not drugs.

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People with pain do not mention the pain has taken their lives. We may see them as weak. That young child with fractures on the ball field is going to need the best care so pain does not become chronic. Give him or her opioids and opioids cause pain, pain becomes worse, intractable before the 6th grade. That is not an addict, but that child and his or her parents are often treated like addicts, at least with suspicion, drug seeking. What is best for that child with chronic pain when she becomes pregnant? When nursing? Think of our young veterans, some with 3 or 4 different pains, and each type addressed differently. What if either of them was an addict before the pain? If we don’t treat them, they will turn to drugs. What are the best, most efficient, options for treatment of intractable pain? When will we learn? We need to identify and treat before it becomes chronic.

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Chronic pain can be reduced or eliminated in many situations now even possibly without drugs, provided the issue is properly identified – and that will never happen until providers are educated in how to identify first class physical therapy. Further research will help to release persons with intractable pain from the prison that too often makes them feel that life is unbearable and that they can more easily face death. We all need to wake up to this situation.

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If we continue to passively allow nothing to be done, then there may be nothing to help us when we fall into the sudden bind of intractable pain when we wake up one day with shingles or a pinched nerve or when pain of the face prevents us from eating or sleeping or speaking or even wanting to live. It will be too late.

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Sharp like a razor’s edge is the path,
The sages say, difficult to traverse.

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Shall we let those we love hang on the edge while we fail to move this multi-tentacled monster forward? How do we light the fire that enables us to solve this fearful fragmentation of choices?

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See how beautifully it works when the right combinations are brought together?

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Yellow rose blue hibiscus

 

 

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The material on this site is for informational purposes only.
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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

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This site is not for email and not for appointments.

If you wish an appointment, please telephone the office to schedule.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Please ignore the ads below. They are not from me.

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