Opioids, Cannabis And Complimentary Therapies


When our Attorney general, Jeff Sessions told the pain community to take an Aspirin and tough it out; I hope he didn’t mean those living with cancer pain, A.S., CRPS, E.D.S. and many of the high pain chronic illnesses? I’m guessing that he must have meant that more for someone who strained their back by lifting a TV or a dresser that was too heavy? Maybe not? But that’s my guess. Along those same lines are “Complimentary Therapies”. In my personal opinion, if Acupuncture works for your kind of pain, that is great. If something called “grounding”, where walking barefoot and reconnecting with the earths energy can help your pain, thats wonderful too! Whatever works to diminish your pain, that’s what matters most. Insurance companies should be more than willing to pay for these complimentary therapies ahead of any major or minor invasive or noninvasive surgeries! There should be choices available to those who want and need them. But as much as mindfulness, guided imagery and “thinking your pain away”, are awesome ideas; I don’t think they generally help to curtail certain high levels of pain and pain illnesses.

Medical cannabis is helping many chronic pain patients with nausea, physical withdrawal symptoms and chronic pain. The Marijuana Effective Drug Studies (MEDS) Act, introduced by U.S. Senator Orrin Hatch (R-UT). He has proposed a bill, (S.1803) to encourage scientific research on cannabis as an effective and safe medical treatment. We need to advocate for this bill because Medical cannabis can be helpful to some people who live with chronic conditions. The U.S. Pain Foundation along with the American Pain Society support this Act.

We are fighting for a variety of methods to help those with high pain illnesses to deal with their pain. I’ve read that Kratom is another plant based fighter against chronic pain. These can be wonderful tools to help many persons. We need to keep fighting for many different methods to help with chronic pain, because we are all individuals and what works for one person, does not always work for another. Pain patients should be able to use whatever method of pain relief works for them because individual metabolisms vary. The therapies available to us, help many different kinds of chronic pain. Each method contains various medicinal qualities that work differently in each patient. It’s also true that one specific method of pain relief doesn’t help everyone. Nobody should be forced into taking or doing something that they don’t feel comfortable with.

The same is true with surgeries and injections. In my personal opinion, these continuous injections into the spine, are just “money makers” for the chronic pain clinics who are now too afraid to prescribe opioids. Even though the CDC told us that the 2016 guidelines

were just a “guide” and they are not the law. It seems as though the majority of pain clinics and Doctors jumped on the bandwagon to demonize opioids after the guidelines were disclosed. Now we are seeing suicides go up with the decrease in prescribing of Opioids for chronic pain illnesses. It seems as though there is a correlation between the lowering of Opioid prescribing and an increase in surgeries for Spinal cord stimulators, pain pumps and nerve ablations. But no one should EVER be forced into having an invasive surgery that could possibly cause more pain and stress for these already medically fragile human beings. My physical therapist told me that the SCS means surgically putting a catheter into your spine to give small electric shocks in order make you think of those shocks instead of the pain! She told me that our brain cannot think of pain and pleasure at the same time. I’m guessing that some think these electric shocks are pleasurable? I had a T.E.N.S. unit soon after my car accident and it did help with muscular pain and soft tissue damage, slightly. I have read that they’re (SCS) most helpful in people who have low back pain, leg pain or one area of pain and not multiple pain issues (http://aansneurosurgeon.org/features/neurosurgeons-rise-address-opioid-crisis-america/).

My previous pain clinic physician informed me that the intrathecal pain pump administers approximately 1/300th of the amount of oral medication needed to relieve high amounts of chronic pain. But this is also living with a literal “hockey puck” inside of your gut forever and and depending on one person to fill it! That same Dr., told me that I would be “married to him” as a patient, for life. In my research, I have found that if your physician leaves his practice, retires or if you have complications in another city/state or country; your pretty much out of luck, in all honesty! Emergency rooms and other physicians won’t normally touch another Dr’s patient with a pain pump! Again, this is another invasive surgery where your body is being cut and something is put into your spine. Complications stem from worsening pain to paralysis. Here is an article that speaks to some of the complications (http://www.stltoday.com/lifestyles/health-med-fit/health/to-your-good-health/implanted-back-pain-pump-is-an-option-for-very-few/article_474eed95-3f54-59ca-9b9b-9f8f941c0300.html). The nerve ablation or Radiofrequency Neurotomy, means literally “burning” nerves to “create a heat lesion”, thus, making the nerves lose functionality (https://www.spine-health.com/treatment/injections/radiofrequency-neurotomy-facet-and-sacroiliac-joint-pain). Each person feeling relief from chronic pain, is all that matters. We should be able to have choices available to discuss with our own physicians.

Someone who knows our past history of illness and our current diseases. A Dr. who can discuss these different methods with us and help us determine which route is best for each individual.

This past week I read an article in “Clinical Pain Advisor” (https://www.clinicalpainadvisor.com/treatments/epidural-steroid-injections-postmenopausal-women-bone-mineral-density-vertebral-fractures/article/739080/) that touched on the issues with the Epidural Steroid Injections. After having many of these injections in the first years following my car accident, now I find out that they cause decreased bone mineral density and increased risks for vertebral fractures. It appears that there are complications with every method of pain relief. We just need to be able to choose what is best for our own body. Nobody should be forced into surgeries, Acupuncture, Marijuana or Opioids. On the other hand, if one method, such as Opioids, have worked for you and you’ve literally tried many other methods of pain relief, then you should be able to continue. Taking a pill that has little or no side effects for a group of people who are doing well with Opioid therapy, should be still allowed and not demonized. I believe there will always be a place for Opioids for the relief of chronic pain. If you have been taking them for many years and are stable, then obviously you are not “addicted”. Don’t forget that there is a difference between addiction and dependency. Also, don’t forget to support the “Opioids and Stop Pain Act” (S.2260/H.R. 4733), introduced by Senator Schatz and Representatives Welch & MicKinley. The U.S. Pain Foundation, along with 30 other Pain organizations support this Act. It will provide $5 billion over 5 years for research of the NIH into the understanding of pain and the discovery and development of therapy for chronic pain.

Human Rights Group Addresses Opioid Issue


 

I was uplifted to see that someone is finally standing up for the rights of 100 million chronic pain patients in these United States of America. We’ve been waiting for a group, a person, a physician or anyone to stand of for this group of people who are mostly too busy worrying about Dr. appointments and just carrying out daily tasks of living to advocate for themselves . Those who deal with daily pain are often too weak to form a huge protest, fight with signs and stand on Capitol Hill for days or hours at a time. Many of us have written letters and tried to encourage people to respond to the FDA docket. Many people have done what they could do to help, while living with illness, chronic pain and debilitating fatigue.

This past week I was so happy to find that a Human Rights group called “Human Rights Watch” has taken an interest in our cause. Someone has finally noticed that ignoring a large group of citizens who live with chronic pain and who are being largely untreated or under-treated, is inhumane! This Human rights group has reported on other forms of torture throughout the third world countries as well. They are based in New York and at last, they are looking towards helping the people at “home”, in the USA. They were doing research on cancer patients and were shocked to find that so many had lost their pain control/relief. This is considered torture in many other countries. Before this Opioid issue began, I never would have believed that the USA would want to torture their most fragile citizens? Hopefully this advocacy group will truly help this cause. They could begin by reversing the effects of the CDC guidelines and by helping to keep the government (and politics) out of practicing medicine. In my opinion, it feels as though some legislators who may want to be re-elected, make a name for themselves or get news media attention have been “using” the chronic pain community for their own gains. One example of politics mixing with medicine is the “Lifeboat tax”. A group of Senators want patients who are taking Opioids, to pay for addiction treatments centers by forcing a tax of .01 cent per milligram of Opioids prescribed daily. But the majority of people who are legitimately prescribed Opioids are not “addicted”. This is wrong and someone has to take a stand, be brave and help those who truly cannot always fight for themselves. Living with untreated and under-treated chronic pain is definitely a human rights issue because people can and do die from it! They pass away because increased amounts of pain can cause very high blood pressure, high glucose level, stroke and a heart attack. But it’s the “living” without pain relief that is the torturous part.

Honestly, removing Opioids from the bigger picture of high pain illnesses, is inhumane. I hope this Human Rights Watch group will help the chronic pain community, curb the fear in our physicians and stop the Government from creeping into our patient/Dr. Relationship and exam room. This group found that nobody has been paying attention to those suffering because their physicians “jumped ship” and abandoned them. They found that the testimonies given by some patients who have lost access to appropriate medications for pain relief, “were similar to those who were victims of police torture”( https://www.painnewsnetwork.org/stories/2018/3/15/human-rights-watch-investigating-treatment-of-pain-patients. We needed someone to be brave and step up to help our community.

If you want to help the chronic pain community and/or if you have a story of your own, please write to this group? Share your story in just a few lines. They have asked for people to send these stories to: Human Rights Watch, email researcher Laura Mills at millsl@hrw.org…They also have a Facebook page: https://www.facebook.com/HumanRightsWatch and they have a Twitter feed @HumanRightsWatch. The more true stories about increased pain and loss of treatment that can be sent to them, the better. The more real human faces that they can connect with this Cause, the more it will help to stop the continued torture of Americans who rely on Opioid therapy for relief of chronic pain Illnesses.

The “O” Word


Hello Luvs,

I have just uploaded a video to my advocacy YouTube channel. I have called it “The “O” Word (The Opioid Issue)”,  It explains a lot about Chronic pain and the issue involving Opoids for the relief of chronic pain. After a pain patient has tried a good number of treatments and they have not worked out, then a patient should be able to make the choice WITH their pain management physician, to either take Opioids or not.  This would be in order to give them some semblence of a life outside of their bed or recliner.  The video is right here, below.  My YouTube Advocacy/Awareness channel is located at: http://www.youtube.com/Suzydukettes.

I don’t want to give too much away, but here is the video:

The “O” Word- The Opioid Issue

Inhumane Treatment Of Pain Patients In USA


I opened up My friends blog today (“Pharmacist Steve”). It is Steve Ariens Blog; and I saw a story of torture. There is torture going on in America! I’m seeing it every day now on the Internet! More & more chronic pain patients are being treated like common criminals! This is despicable! My God, are we living in North Korea, Afghanistan or in some 3rd world country (whos people , by the way; don’t deserve this kind of treatment any more than we don’t!!)?

How can the news media @Foxnews.com, @CNN, @MSNBC and all of the rest, be so one sided? Please, I implore you @POTUS, @GovChristie @PetersforMichigan (Senator Gary Peters), @NYGovCuomo (Governor Andrew Cuomo), @onetoughnerd (Governor Rick Snyder of MI). I implore you to think of the forgotten legitimate chronic pain patients. People are now living with daily chronic pain and receiving no treatment at all. They being totally forgotten & considered collateral damage of this “fake war on drugs” ! It’s a war against the chronic pain community; because they’re the ones who are dying. The pain community is stuck with zero semblance of a life as all of this is crashing down around them/us! The posted video is not just sad, it’s torturous to listen to. It’s terrible to watch. But it’s true and it’s happening all over the United States Of America! This is a story about a young mother, wife and daughter; who’s going through sheer bloody hell in Albany New York Trauma Center!

“Amy” Amy’s story of Human Torture in a NY hospital! is a young woman who just went through a painful stomach surgery and her stomach ruptured as well! The contents are therefore spreading throughout her body inside and this causes not only sepsis, but horrible excruciating pain! My husband went through it years ago, but they gave him a Morphine pump while in the hospital for several days following surgery. He was given pain relief, as any HUMAN BEING or any living, breathing animal should have!!

This is torturous and despicable treatment of anyone in a hospital, or any patient care facility; let alone, following a stomach surgery! How can the Albany Medical Center in Albany, New York, allow their patient to be treated in such an inhumane manner??? The behavior of the nurses who pledge also, to “care for the sick” and to “do no harm”; is unforgivable! This sort of treatment to other human beings deserves termination. Those so called patient care employees need to be fired and they should never be allowed to not care for another patient! This woman, who has a name, a face, a husband & a family; is living through hell!

You know what though? This is entirely preventable! She is not a prisoner of War! This is a young woman who’d much prefer to have a “normal” life! This young woman has a name, and that name is “AMY”! She has a young child and a husband. I’m guessing that her husband had to leave her to go home and take care of their little one! He had to do that and he thought he’d left his wife in the care of a reputable hospital facility!! Obviously, he was mistaken and that’s really sad!

What if Amy was unable to show us this video? What if she was incapacitated and couldn’t tell anyone what’s happening to her? Please share this video and Amy’s story. Write to your legislators and put a name and a face to all of our stories. Nothing can change if we cannot be brave and do something to help ourselves and to help Amy!

Our government leaders, the news media agencies and society need to as many faces and hear as many stories as possible about us! The chronic pain community being left behind and treated as though we are just collateral damage in the war on drugs! This has taken a turn for the worse. It’s gone from a “war” against illicit drugs to a war against the legitimate chronic pain patients. We will lose & continue to lose if not for people being brave like “Amy”.

Please speak out and tell everyone your story and the stories like this one! Get the word out about how chronic pain patients are not drug addicts. We are not addicted at all! Ask them if they can remember a time when they had lived through their worst pain imaginable? Then ask them to think about that pain never ceasing! Tell them this is what it’s like for us, for you!

Please pass this story around. Know that I received Amy’s video & story from Pharmacist Steve Arians Blog, at: PharmacistSteve.com….. It is posted in several places on Facebook. He asked if we could “please make this video go viral”?

Thank you for your help! Please…. let’s all help Amy & all of the other “Amy’s”! Thank you Steve Ariens too!

Pain Acceptance, The Newest Lie


As I was listening to the Vox.com podcast a few days ago, I heard the voice of PROP’s president, Jane Ballentyne, surprised and complaining about how she’s been treated recently. After hearing about her belief regarding the “acceptance of pain”; several pain patients wrote negatively to her in the comments of articles and a podcast.  Some people even wrote to her employer at the University of Washington and wanted her fired, she says. I’m wondering, why she is so surprised? But obviously those who agree with her and think this is a good idea, have not lived with daily, unrelenting, horrible pain such as the kind that comes with  illnesses like:  CRPS, Ehlers Danlos Syndrome, Ankylosing Spondylosis and many others.

What I don’t understand is that in these modern liberal days of persons not having to accept anything else about themselves, why are pain patients being forced to “accept” their pain? Today in 2017, people are allowed to change their gender, nationality and  their bodies.  There’s nothing wrong with a man becoming a woman, or a Caucasian man becoming a Filipino woman; as I saw on the news the other night. In 2017, there’s nothing wrong with a woman getting liposuction on her hips, if she feels they are too big, or breast implants if she feels those are too small. If other human beings are “allowed” to do all of this, then why are chronic pain patients supposed to or urged now, to accept their torturous, horrific daily 24/7/365 state of living with chronic pain?? Now days nobody has to “just accept” anything about themselves. Something is really “fishy” here? In my own personal opinion, I feel like the United States is trying to kill off it’s weakest and most vulnerable chronic pain patients. Why do you think this might be the case? Again, my thoughts are that it is because they are concerned that the “baby boomers” are going to deplete the Medicare/Medicaid system and there won’t be anything left soon. Why not “get rid of” the sickest and most weak of Americans to save some money? I don’t know this of course, but it sure is a scary thought when everyone else is allowed to surgically change everything about their gender, race and body; but the chronic pain patients are now not allowed to have the simplest pill that can help to lower their chronic pain.  Suddenly, opioids are now being considered evil and all must be destroyed.  We must learn to “accept our pain”.  I don’t want to just accept my pain, anymore than someone who feels that they were born the wrong gender, should have to stay that way forever and just “accept” it.

So I’ve been researching other countries and speaking to other chronic pain patients around the world, thanks to the internet.  I was discussing the “opioid crisis” with my friend in Israel.  He sent me a piece of information about a University of Michigan Coursera. You can look at what I looked at here:  Teach-Out: Solving the Opioid Crisis/Coursera.  He told me that he had been seeing what’s happening in the USA and how concerned we are about the topic of Opioids.  He wanted to know if this was truth or not?   Naturally,  you must take the course to learn about what they want you to know. But just from the introduction that I read, it is packed full of disinformation. They tell the same “lies” that were exposed in Andrew Kolodny’s article “The Opioid Epidemic in 6 Charts”. Josh Bloom, a journalist and PHD, exposes how Kolodny, those that follow him, and some of the media (it seems), are changing the truth to their advantage. In his article, The Opioid Epidemic In 6 Charts Designed To Deceive You , Josh proves how in Kolodny’s orginial article, The Opioid Epidemic in 6 Charts, deceives us with false numbers.  The first sentence that Kolodny writes in his editorial states “drug overdose deaths” are about 60,000 annually. When we see that we immediately think that he’s talking about prescription pain medication overdoses. But, Josh Bloom points out that actually 30,000 people were killed.  This included all opioids including heroin.  The actual true number of deaths just from prescription pain medications or opioids used for chronic pain; was about 17,000.  Also, in Mr. Blooms article as cited above, he states that the number of 17,000 is “half the number of accidental falls”.  But 17,000 is not exactly right either, because that includes all opioid overdose deaths which were in combination with other medications.  The true death by opioid pain medications is about 5,000, according to this same article.  That is much less than Kolodny’s original “60,000 deaths”, scare tactic, from drug overdose.

Also, why are we not looking into the deaths by alcohol?  According to the NIH (National Institute of Health), the NIAAA (National Institute on Alcohol Abuse and Alcoholism) and this article Alcohol Facts and Statistics, “88,000 (62,000 men and 26,000 women) people die from alcohol-related causes annually”.  This makes alcohol the third  preventable cause of death in the United States. Do you know that the first and second causes of preventable deaths are from tobacco and poor diet/physical inactivity? So why are we not talking about the Alcohol and/or tobacco related death epidemic? Do you want to know why? I know I sure would like to know the answer. I know that my friends in other countries are telling me to come and live there. They don’t understand why this is happening over here in the USA? The friend that I was referring to earlier on, who lives in Israel; cannot believe that this is happening to the people he knows here in the USA.  He even said that he sent me the information regarding the Coursera, because he “had a feeling they were lying”. He asked me “Do you have any guess why they are doing all of these things to hurt all of you?” The only answer that I could come up with is, “Money”. The reason that I stated above, regarding Medicare/Medicaid and the baby boomers. I was embarrassed to say that to my friend, but I still did. His response was “this is horrible”. He said that “in Israel you can get as much as you need; as long as it is opioids and not medical marijuana”.  It is totally opposite of that here in the USA.  In Israel, the primary care doc can prescribe what he believes will help the diagnosis of his patients. Imagine that! Oh wait, that is how it used to be here in the USA also! But not anymore!  I asked my friend if his primary  or pain Dr. helps him more? He told me “My primary helps me, of course! She helps the most.  She is nice, caring and gave me the pain medication with out any pain doctors advice.  On her own, because she is a DOCTOR herself…..you know? AS it should be”! Also, as I feel it should be in the United States once again.

Introduction To: Inside Incurable Lives


We see so much in print these days about the “addicted”, the “overdoses”, the “bad guys” that are posting incorrect information all over the internet and about the opioid crisis.  Of course it seems as though only those of us living with daily chronic pain, truly understand that the “crisis” is indeed one of the pain patients “falling through the cracks”. Being-untreated or under treated and then committing suicide or having to spend the rest of their lives in agony.  This is the true “Opioid Crisis”.  But then I saw a short clip of a very well spoken, kind young woman named Victoria Suan.  She was asking for volunteers to help with an upcoming video compilation called “Inside Incurable Lives”, that she was doing for Social media.  She was going to follow a few stories of persons living with daily chronic pain and show how it affects their lives. I responded to her request and sent in some video clips; as did several other chronic pain patients. The first Social media video compilation called “Inside Incurable Lives, Episode 1”,  came out in September 2017.  In the second video compilation, Victoria was asking if chronic pain patients would be able to tell her “What one pain medication, would they not be able to live without?” Secondly, “If your Dr. Could no longer provide this, what would you do?”  The second video compilation project, “Inside Incurable Lives Episode 2”, focused on the voices of pain patients and their views regarding access or lack of access to opioid pain medications as well as medical marijuana. Episode  2  finished and posted in October. I was happy to be able to participate in both of these projects. I’m trying to help with this crisis in any way that I can. Later, I will be providing the links to these 2 video compilations for Social media. But first, I want you to introduce you to Victoria Suan, and her feature Documentary “Becoming Incurable”.

Victoria lives in California and since High school, she was interested in becoming a filmmaker. She graduated from Sacramento State with a Communications degree. She started creating short documentaries during college and then afterwards she decided that she wanted to make a feature documentary. She started researching blogs and video’s on YouTube. From there she discovered the chronic illness community. Victoria found through her research, what she describes as “a wonderful support network of people who are giving one another validation as they deal with the frustrations of chronic pain.”  She told me that she was thrilled by what she saw, and inspired. She decided to create a feature documentary about “chronic illness through intimate stories of real people living with chronic pain”. Starting out with her cousin who lives with Dystonia and a friend with another incurable condition, she then found her third featured person for the documentary. She describes the 8 or 9 months of filming as a “wonderful journey”.

The two video compilations on social media, that I participated in, were an extension of her feature documentary. Victoria then made a Facebook page and it became a platform for the chronic illness and pain communities.  She has become a “voice” for those of us who live with pain & chronic illnesses and she is showing our side of this painful journey.   She also wants to do whatever she can so people learn about her feature documentary. 

Before we get to the two video compilations in which the chronic pain communitiy on Facebook participated; I’d like to share some of Victoria Suan’s views about the opioid crisis.  I feel that it is very important to listen to the views of others who are neither patient, politician nor physician. Now that she has become close to several of us from the shorter video’s; I asked what her thoughts and feelings are, regarding what is happening to the chronic pain community? Her response was very heartfelt and thoughtful. Victoria told me that regarding the opioid crisis, she “really feels for the families and individuals that are dealing with addiction. Sadly, there aren’t enough ways to treat addiction without affecting the millions of chronic pain patients in our society.”  She told me that she’d read that Governor Chris Christie blames hospitals and physicians for starting this opioid epidemic. She wondered “how would a person dealing with chronic pain feel about this? How ignored and betrayed they must feel.  Is it wrong to eliminate a torturous level of pain by taking medication as prescribed by Dr.s?”  My own feelings are that politicians seem to not really care as long as it doesn’t touch them or their own families.  Victoria agrees that they just don’t want to listen to this. She feels that as chronic pain patients, we should not have to fight so hard just to be heard, really listened to.  But we are trying to fight because our very lives depend on it.

Victoria feels that it is “sad that one governors personal opinion can do more to influence legislation than the voices of millions of chronic pain patients.” She is happy that there are News outlets such as this and others, along with non profit organizations, such as the U.S. Pain Foundation; that are educating the public about chronic pain.  Victoria thinks that the film industry; especially a film called “Unrest” that is touring worldwide; and her documentary, “Becoming Incurable”, show that efforts are being made to educate and inform the general public about chronic pain.

Lastly, I wondered what she has learned from doing the 2 video compilations and the documentary film. She mentioned that she hadn’t realized before doing this, how difficult it is for people living with chronic pain to “do normal tasks, such as getting out of bed and/or going to the grocery store”.  I think that it taught her and hopefully will teach others about “Invisible Illnesses”.  She says that actually seeing these people in their pain, made her “truly acknowledge what life is like with chronic pain and illness”.  She feels that these projects taught her that each person has their own unique story to tell. She has figured out through these projects, that we are united in our pain yet each of our situations vary widely. I want to share with you in Victoria’s words, what she wants people to learn from watching “Becoming Incurable”. She hopes that people “will see these video compilations showcasing pain patients and stand with organizations that are fighting for the chronic illness community.  If our government continues on this path of neglect, I’m certain that chronic pain patients will be forced to fight a human rights issue.  I think this has already begun, as we are learning the numbers of chronic illness patients committing suicide.  It is important that we speak and act now in order to invalidate a campaign that deems anyone taking opioid medication as a suspect of the addiction problem.

Here are the links to the 2 video compilations of “Inside Incurable Lives” by film producer, Victoria Suan:

https://www.youtube.com/watch?v=RjrJnriz6y8

https://www.youtube.com/watch?v=0CuFEgnz8yA

https://www.flipsnack.com/becomingincurable/inside-incurable-lives-issue-1.html?0=becomingincurable

We Are Not A “One Size Fits All” Society


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I’ve had a few interviews recently, with people who want to know about “my story” mostly. But I’m finding out more and more that so many in mainstreamed society do not understand chronic illnesses or pain whatsoever.  There are 100 million people living in the USA, who live with daily chronic pain. We truly need to “talk about” this.  I’ve even been speaking with legislators to try and get some of these House Bills to NOT be permanent law. The people who are sitting on these committees do not understand anything about chronic pain, yet these are the persons making the medical decisions for us instead of our physicians. Most or many chronic pain patients visit their pain management physicians, now monthly. The pain doctors are the ones who went to school for many many years to learn about how to treat people who live with real pain on a daily basis. Why are these Bills being turned into laws without the consent of a pain Dr.? Why were there no pain management physicians sitting in on the meetings when the CDC guidelines were being discussed?

The CDC guidelines that were put into place in 2016, were done behind “closed doors” and in “secret”; without any pain management physicians there to guide them at all. No, there was only PROP (physicians for responsible opioid prescribing), including their guy, Andrew Kolodny; who is a Psychiatrist.  He is an addiction specialist, not a Physician trained in the treatment of chronic pain. Why would the CDC set guidelines like these and allow them to be done like this in secret, by a person who is not even trained in the management of pain? Next, these guidelines are supposed to be just that, “guidelines”.  Somehow they have become the “law” without actually going through the right chain of events to become a “law”.  Physicians, pharmacies and others are now adhering to these “guidelines” that were meant for general physicians, not even for Pain physicians.  But some pain management Dr.’s have seen their colleagues have their livliehoods taken away by the DEA now, and they are fearful.  They fear losing their practice and everything that they went to school all of those years  to do.

These CDC guidelines are not the law but Dr.’s are being “bullied” into making them the law in their own practices.  They have famlies and a life outside of pain management. They don’t want to lose everything and I undertand that.  But someone has to stand up for what is good, lawful and right!  We need to remind our physicians that these are just guidelines and not anything that legally must be done right now.  The guidelines, after all, were also supposed to be about stopping the overprescribing of opioids right after an injury or a surgery.  They weren’t meant to take the very lives away from the chronic pain patients; yet that is what’s happening.  People are dying and suicides are rising even though in the last several years, the prescribing for opioids has actually gone down.  Did you know that legacy chronic pain patients, those who were already on an opioid pain medication plan that was working for them, before the  2016 guidelines came into effect; are supposed to be exempt from them? But that’s not what is happening in many cities and states.

Today, in 2017, in our United States of America; people are being tortured. Yes, it is true.  Our service men, the Vets who came back from combat, after fighting for their country, return home to live with terrible and painful wounds.  They were the first to be denied pain medications and now everyone else is following. How can a country let those who lost a limb or more, fighting for them; just live with pain and not try to ease that pain?  If you read the CDC guidelines in the link that I’ve provided above (in the second paragraph), you will be able to read that the guidelines spell out these words “reduce opioids UNLESS THERE IS HARM BY DOING SO”.  So many in our country are now being harmed by these guidelines that are being abused and played out as “law”. Do you know that the elderly in nursing homes are now being denied opioids and left to live out their days in agony and chronic pain at various advanced ages? This is called “torture” and “abuse” and it’s just wrong! Just as it is wrong to make everyone be at the same dosage of opioid pain medication.  We are not  “one size fits all” human beings. Just as 90MME or less, will not work the same for everyone. We all metabolizes differently.  Some physicians & legislators are listening again, to the non-pain management Dr.’s, who think that 90 MME is the highest amount that every single person should be allowed to take, no matter the circumstances.  This is truly torture for patients who are in need of more than that amount.  There are patients who must take more than that in order to have some semblance of a life outside of their bed. They are not groggy or high.  They are just trying to get by and live their lives the best way that they possible. To the surprise of the journalists and legislators that I’ve spoken with, the chronic pain community that I know and love, doesn’t want more opioids for pain relief.  They want only what is needed to get by;  to live some kind of life with lessened pain.  I was asked “If I could have more opioid pain medication, would I want more?” I responded vehemently, “Absolutely not!” If I did not need to take the medications that give me some pain relief, then I would not take them.  I don’t want more and more pain medications.  I only want the amount that is necessary for me to have some kind of life outside of my bed.

Of course, I understand that opioids normally are not the very first course of action for a chronic pain patient.  We have to go through the rigorous pain clinic “steps”.  There are the trigger point injections, different kinds of Nerve blocks, biofeedback and occasional trip to see their pain Psychologist. Once found to “not have an addictive personality” they will try different medications.  There are persons who have tried many non-opioid pain medications and either they got deathly ill from them, were allergic or they didn’t work. The next step is usually invasive and expensive surgery to either get an intrathecal pain pump or a spinal cord stimulator. People have varying views regarding these surgeries and the outcomes. I don’t think anyone should be forced to have an invasive surgery.  One in which a catheter or electrodes are stuck into the patients spine.  The patient is then given a remote control device that controls the amount of stimulation they receive for pain relief (if it works). Otherwise the pain patient has pain medication filled into a “hockey puck” -like device (pump) placed inside of the abdomen area.  They visit their pain Dr. monthly to get this pump filled. The intrathecal pain pump, I was told, is equal to about 1/300 of the amount of oral pain medication. It is dripped slowly into the spinal cord to help with pain. Dangerous granulomas can form and there may be other complications. I must also mention that afterwards, you are then “married” to that specific pain Dr. for the rest of eternity (for the most part).  I also must add that most everyone who has these invasive surgeries, still need oral opioid pain medication for “breakthrough pain”.

There are persons who aren’t candidates for one reason or another and they are not able to get a Spinal cord Stimulator or an Intrathecal Pain Pump.  After trying many non-opioid medications and not being a candidate for either of these surgeries; there are not a lot of other options.  But I want the decision to be between my Pain Dr. and me, alone.  I don’t want the government in my patient room, uneducated in pain management but trying to make all of the decisions.  I honestly believe that me and my pain management physician, who went to school for approximately 13 years, or more, to specialize in taking care of people who live with pain; should be the ones to decide whats best for me. In my opinion, no one should ever be forced to have invasive surgeries; if there is a pill available that has little or no side effects, when taken responsibly.  All medications should be taken responsibly because a person can overdose on insulin, heart medication or anti-depressants. It’s not just opioids that are harmful if too much is taken. Lastly, I was asked if I am “pro-opioids”.  My answer is “No, I am pro-patients”.