Chronic Pain Advocacy Comes to New York

Chronic Pain Advocacy Comes to New York

By Ed Coghlan

When US Pain Foundation Founder and CEO Paul Gileno called on the chronic pain community to get organized, some of the reader reaction on the National Pain Report was “how do we do that?”

On Sunday (April 3) in Westchester County, New York chronic pain patients are going to learn how.

The New York Pain Society is holding a free event (in connection with US Pain Foundation) called “Take Control of Your Pain”. The event, which will be live streamed world wide, will inform pain patients how to become better educated regarding treatments and how to utilize their voices with advocacy effort locally and nationally.

“This is another in a series of free events designed to both educate and inspire chronic pain sufferers and their loved ones,” said Gracie Gean Bagosy-Young, one of the organizers of the event. “We will hear from doctors and patients. It promises to be a good event with very strong attendance.”

Topics include alternative therapies, meditation, medical marijuana and interventional therapies that are available.

Here’s a copy of the agenda for the patient education event, which will be held at the Renaissance Westchester Hotel in West Harrison, New York (north of New York City), beginning at 10 am EDT.

“Getting involved takes work, but it’s very much worth it,” said Bagosy-Young, who suffers from CRPS and is a well-known advocate for chronic patients. “

Chronic Pain is a major health problem in the United States. According to the American Academy of Pain Medicine, 100 million adult Americans have chronic pain conditions, not including acute or pediatric pain. Pain affects more Americans than diabetes, heart disease and cancer combined. Pain costs society at least $560-$635 annually, equal to $2,000 for everyone living in the U.S. The total incremental cost of health care due to pain ranges between $261-$300 billion and $297-$336 billion due to lost productivity.

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Authored by: Ed Coghlan

There are 7 comments for this article
  1. Jean Price at 9:19 pm

    Again, I would like to see change/loss/grief information shared at these types of gatherings. I think this is a major component of coping with long term life limiting pain, and it’s not addressed! So many people are caught up in grief over their obvious losses and have no parameters to use to understand this. I’ve offered information and also to be a presenter and there are others I’m sure that are well versed in the task oriented model of grief work. Please look into this.

  2. Jimmy Rose at 3:22 pm

    When will you come to speak to and help RSD patients here in Little River/ North Myrtle Beach South Carolin?

  3. Stephen S. Rodrigues, MD at 1:45 pm

    Today Hippocrates is rolling over in his grave because of this pain fiasco. I was not told in medical school that all pain problems have restorative effective treatments. I’m certain that you do not know either. I was set up to fail and all of you have been set up to suffer in pain.

    In the mid 20th century a group of physicians came up with the perfect solution to the #1 most perplexing disease which tormented mankind for millennia. Pain. There are 2 major types of pain in the body; 1. pain of death and 2. pain of life. Pain in the body that did not signal death, had to be somewhere and the only location pain of life can be is in the muscular system.

    Pain of life is caused by life, living, falls, breaks and work. Pain of life is located and scattered throughout the muscular system. This pain is 100% invisible. Everyone has pain of life. Pain of live in muscles demand to be treated like any other disease in the body. Pain of life is 100% treatable. Pain of life if not treated or under-treated will cause the muscular system to contract, wither, falter and fail over decades. Pain of life will not kill you but it will make you kill yourself. Here are a few “pain of life” examples: Migraines, TN, Whiplash, lower back pain, CRPS, POTS, RSD, thoracic outlet syndrome, Diabetic neuropathy, CPS, CFS etc.

    “Pain of life” can only be treated with the opposite of life and work; wellness, magnesium, massage, spinal unwinding, kneading, thin filament needling and ultimately hypodermic needling.

    How were we all tricked and set up to fail?
    The false steps away from reality or how nature and the human body works:

    Hippocrates teaching and oaths were removed and abandoned in the late 1800s by a few provocateurs and scientist who took out all hands-on, touch and compassion. These provocateurs called their bag science-based medicine, the perfect doctor’s bag. Then they put all else into a separate and unequal doctor’s bag called Alternatives or Complementary medicine.

    The “SBM” group the went about to kill all ideas, access, beliefs and concepts related to the treatment of “pain of life,” by overt and covert actions.
    The overt and documented: https://en.wikipedia.org/wiki/Wilk_v._American_Medical_Ass%27n#Judge.27s_findings_in_the_second_trial
    The covert actions was to set all of us up by “brainwashing” and trained us all to ignore the muscle system and thus to ignore all of the cries for help of those who are in pain by a simple human nature technique; Blame, shame and overlook the victim.
    The most effect way to keep people ignorant, betrayed and misinformed is to separate them into different groups, add in competition, levels of power, pay to play, hate and the human disability of groupthink runs these systems automatically forever.

    In 1968 the SBM group then acted not just against Hippocrates but they went to far as to act against God’s creation; natural laws of how the human body works. These men acted replaced a knee for knee pain. This action in effect steps over the line of between science facts and natural healing and ignorant, uneducated man’s unnatural ideas. The only way this could be done is to which our view of pain from the muscular system to the skeletal system.

    This was easy after the movie; “The Six Million Dollar Man” which promoted the idea of man-made bionics being millions of times better than what God gave us.

    After this tragic event, the “SBM” group had to begin to dismantle the all of the ideas of natural healing systems:
    They removed all hands-on physical therapy options off of your insurance benefit packages, restricted what hands-on PT therapists, dismantle the old-school Physical Medicine and Rehabilitation discipline, turned PM and R into Interventional Pain Medicine, alter all of the facts, figures, teachings, evidence to match that which they were promoting for-profits.

    The “SBM” group also had to get the Federal and State government involved which was easy. Money, power, influence, politicians and profits will blind some of us to overlook what they are doing – turning Americans into cash cows without souls.

    How to solve this situation? Pull out the roots of the deception planted by these provocateurs.

  4. Brenda Flippen at 5:11 pm

    We have 1 (one) pain Dr in our area of the state. And he is not the most caring person in the world. But I keep in mind me is over worked and,, over paid. He is not in my isurance network. Don’t know why. I asked and he says he has applied and could I put in a word for him. I did and they looked for his application and had no record or correspondence of him. They said they would be glad to ad him if he would apply because they didn’t have any pain docs in our area. This did not suprise me. So he attempted to do a block on my back, but could not get the medicine to go in. He would not stop digging and poking until I raised my voice to him to stop. At this point I was experiencing more anger than pain, almost. I had had many blocks before with no problems. I have had blocks for 20 years and they have almost always helped me, at least some. The only reason I let him attempt one is because my g.p. quit prescribing my Ultram,, he told me the pain clinic would be my only choice. I don’t think its fair to not have a choice. Isn’t that what America is about? Anyway after I would not let him “attempt” anymore blocks he said he was too busy to see people for prescribing pain meds. I had no other choice than to go back to my g.p. and beg like a drug addict for my Ultram. So humiliating. He said ok. That was 3 months ago and yesterday he said the government was not going to let him prescribe pain meds anymore. So he is weaning me off. Then he said , ” well I can prescribe, but I feel its more important to cover my butt by just stopping all together.” How caring….by all means ,COVER YOUR BUTT DOC. I have gone to him for 8yrs, I have never had a problem with my meds. I never ask for more before time, I never run out, never used any excuse to get more and have never taken a pain prescription from another Dr..
    I don’t know what to do now. I have too many problems to be without any meds. And I surely don’t feel like driving 2-3 hours to try and find another Dr.. I have tried everything they have asked me to try. And had little of no help, or bad reactions from them. I have too much pain to go it alone, meaning no meds.
    So what now??? And remember , I have tried everything offered.
    As I read all of these comments I wonder how all these new laws ever got to this point. Then I remember, no one asked us. And most of us are too sick and tired to advocate for ourselves, let alone anyone else. So if anyone is religoius, pray for us. If not, scream at the government to help us not hurt us.
    I hope everyone is doing as well as can be , and gets some relief soon.

  5. John S at 4:18 pm

    After watching nearly 3 hours of CSpan today – all about the ” Opiate Perscription Epedemic” it became apparent to me that the one voice not heard is that of the Chronic Pain Patient.

    Watching career politicians debate over ” how do we put a stop to this ” reminded me of the recent Presedential debates ; no substance, no updated facts and lots of name calling. There were a few that still believe the Heroin problem is worse because it’s Cheaper – Easier to get – More potent than ever before and needs tone stopped at the boarder.

    Some of the old timers still hang on to the myth that Marijuana is still the Gateway drug responsible for ALL illegal drug use.

    The DEA is on track with the new CDC guidelines and the real life stories are all the same ” my loved one got addicted and died because the Dr. gave them OxyContin for pain :/ after the Dr. stopped the OxyContin their only choice was Heroin and then the overdose that killed him or her. I know it happens and we all know someone that knows someone that died from too much Heroin .

    The only voice not heard is that of the Pain patient and that is what upsets me the most because they need to hear our side of this story.

    Surely there is a way to Get our message out to the people in Washington D C that will one day soon determine our fate. We have the experience and we suffer the pain. We need to do more than just complain on a website like this one. Sure it’s a great start but now it’s time to find a way to get the EAR of the Beltway boys before they yank the rug right out from under us.

    It’s now or never and for a lot of us – our life depends on it.

    “You are never out of the fight”

    Thanks

    John S

  6. Robert Kutzner MD at 2:55 pm

    Discussion with reference to Dr. Nagel’s numbered items.

    NO CURE (1): We are dealing with Chronic Pain here and by definition, “chronic”, means it is without cure.
    • It needs to be noted that chronicity is a relative term time wise. Most acknowledge that 3 months is a good marker. Others point out that chronic really means any pain the lasts longer than would be expected. Although I use both, I prefer the definition being any pain that lasts longer than anticipated. Think of that the next time you get a simple “charlie horse” or “foot cramp”; a few minutes is one thing but hours or even days, let alone weeks or months, surely is a chronic pain problem.
    • It should also be noted that since chronicity is dependent on the underlying pathology it behooves us to move closer to the definition that chronicity is anything beyond what is expected. With this approach implementation of an integrated multidisciplinary approach as early as possible would open the door to stopping (curing) some forms of chronicity like Post Herpetic Neuralgia, Reflex Sympathetic Dystrophy, etc.. Since examples like these can be cured it should be considered malpractice to allow them to become chronic.

    BEHAVIOR CHANGES (2,3,5): With chronic pain comes behavior adaption.
    • Depression is common especially with suffering. Physiologic changes happen centrally. Opiates depress testosterone levels. Somatization, catastrophizing, anxiety, sleep deprivation, hopelessness, and anger are common.
    • Family, occupational, and social dynamics are impacted and must be addressed.
    • Pain is not suffering. We all live with pain but when it gets so sever or out of control then suffering ensues, i.e. torture. For over 40 years medicine has the ability to prevent suffering from pain. Suffering is without excuse and should be recognized as an abomination.

    MULTIDISCIPLINARY APPROACH (4, 5): No single profession can address all aspects of a chronic pain patient.
    • Integrated care means just that, integration. This cannot be accomplished by fractionating the care through referrals to different specialists outside, or inside, the same building. This cannot be accomplished by providing one type of care followed by another, then another. All care, all treatment, must be provided in concert. This also means that there must be regular meetings to ensure a team approach and that it is working in the same direction for the same goal.
    • To treat the whole patient we must address the biological, psychological, social, and spiritual. This requires multimodal treatments which necessitates practitioners from different disciplines, i.e. a multidisciplinary approach.
    • All the literature over the last 40 years has supported this approach. It is not new but few listen. The CA Div of WC Medical Treatment Utilization Schedule made it law back in 2004 and provided literature reviews every 5 years since. Recently the CDC published the same findings.

    SOCIETY MUST BE VESTED (6): Employers, insurance companies, government, places of worship, corrections, recovery, etc… Society as a whole, all have skin in the game, all have a shared responsibility, all have a vested interest in dealing with chronic pain.
    • In California the WC laws that demand a multidisciplinary approach are not enforced and never followed.
    • Insurances deny and fractionate care making multidisciplinary approach impossible.
    • Providers do not refer pain patients, preferring to band aid symptoms with opiates driving up chronicity, addiction, and overdose. Primary care providers are the biggest abusers.
    • True integrated multidisciplinary clinics struggle to stay open and are not supported.
    • Health care costs are decreased nearly 40% by a multidisciplinary approach.
    • All-Cause mortality is decreased nearly 80% a multidisciplinary approach.

    SELF MANAGEMENT (7): Chronicity means lifelong and as such the patient should become the expert in managing their pain.
    • The point of multidisciplinary is to provide as many effective treatments for the patient to utilize to manage their pain long term. Treatments are provided and those that work become tools for the patient to use to manage their pain. In effect, treatments that help are identified and the patient educated on how to use them. Physical therapy, CBT, even injections become part of the patients armamentarium, part of the patients tool box, they turn to manage their pain. Patients become the experts. Roles are reversed.
    • Early access to the patient is paramount. A diagnosis, prognosis, and treatment plans are developed as soon as possible. When the patient is permanent and stationary, without further improvement, then, and only then, does the patient have the tools to make an informed decision on what tools, treatments, to use and when. Since this is a concentrated effort, a “full court press”, it shouldn’t take much longer than 3 months or so depending on each patients underlying pathology. Think of it; you could have your legs broken, laid on a bed and fed yogurt, and Mother Nature would heal you within 3 months.

    So, Dr. Nagel, I do agree with you in every aspect except I do believe we can come up with a succinct, as possible, definition of pain management. Decades ago I wrote the following but, admittedly, I am not the best at writing. Maybe you, or someone else, may be able to improve it.

    Pain Management is an integrated multimodal approach intended to be implemented, as early as possible, to generate a diagnosis, prognosis, and treatment plan, as soon as possible, for the ultimate purpose of training the patient to take control of their long term care.