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”.
I know in my heart, that some of what I had originally written in my first “PAIN WARS” article (9/19/2017 see it in its almost original form below—I did still change a few small details. But for the most part, the original article is below ) in the National Pain Report), are Kolodny’s true “opinions”. We all are aware of those; because he’s proven his opinions over and over again to all of us. But I made a mistake and there were two issues to which I could not find an exact citation. I rewrote the article with citations down to the details. This time there was no reaction; no response from him? The fact that he thinks Intractable and/or chronic pain patients should be able to be OK with Tylenol or Ibuprofen is just laughable. It reads on the bottle of Tylenol “for minor aches and pains”. Obviously Andrew Kolodny, the shrink/Psychiatrist; has not ever lived with chronic intractable pain. What’s interesting is that he doesn’t treat Chronic pain either!
IF he is not educated in the treatment of chronic paian, then how is it that he is able to dictate what happens to the chronic pain patients?
What I find also odd, in a way, its that he thought what I wrote in the original article was “unfair”? What about what he’s doing to a large number of chronic pain patients? I want to scream that it is UNFAIR that he is responsible for the rise in suicides due to the immediate drop or quick tapering of our pain communities medications that are & have been used as directed and in a responsible manner. He has our communities deaths from suicide on his conscience and on his hands. He is lying to the people, tugging at unknowing, good peoples heartstrings, so to speak. By telling them that these medicines are killing people and they are dangerous etc.; he is getting many of these people to side with him! They are only “dangerous” if misused or taken improperly, just like anything else! Water is dangerous and you can die if you drink too much!
The Dictionary’s definition of “enemy” is = a person who is actively opposed or hostile to someone or something. Also it states that “enemy” is a thing that harms or weakens something else. Well, Andrew Kolodny M.D., may harm us and we may die due to suicide or increase BP and HR from higher pain levels; because of his opinions. This is on his conscience as well. But he will never weaken the strength of compassion and endurance in the chronic pain community of the USA.
What I don’t understand is why can’t the government officials see through him?
Why don’t they see him trying to have “saving the addicts” (certainly not saving the chronic pain patients) as being his claim to “fame”? Why can’t anyone else see that he owns treatments centers with a “revolving door” policy and he makes a ton of money off these poor people?
He tries to tug at the heartstrings of those who have lost loved ones to addiction. Chronic pain management and addiction management are two different areas. Those who have lost someone to an overdose want all Opioids gone now; because someone that they love has passed away due to addiction and /or the misuse of opioids. That’s horrible, terrible and unimaginable to say the least. But Well, now we, the chronic pain community are losing people daily; due to the quick tapering and abrupt ending of opioid treatment to chronic pain patients. Chronic pain can kill as stated in the National pain report article from June 20, 2017. The terrible true fact is that Opioids don’t kill people any more than guns kill people? If you misuse either of them, you can die. If you don’t follow the instructions of a legitimate pain management physician, then you have a higher chance of dying from overdose. People can overdose on insulin that they have in their home for Diabetes. Just as someone on High blood pressure meds, anti-depressants and other medications can overdose if they misuse their medications. We are not children and if we are responsible adults who are doing well on opioid therapy and do not get high, do not ask for more, are not groggy or foggy from the medications, and we don’t take more or less than prescribed; then we should have a right to live our lives in as little pain as possible! Nobody should be forced into having risky and/or expensive surgeries either.
Whatever works for each specific person, is what should be done to allow that person live the best life that they possibly can. If medical marijuana is legal for you and it works, then you should be allowed to make that choice. If acupuncture, yoga or meditation relieves your pain, then so be it. Everyone should leave you to do whatever works for you. But for me, with my complicated medical history, Long QT syndrome and more; the opioids have no side effects and they are still working, without raised doseages.
They need to totally get rid of the CDC guidelines and start over from the beginning. They need to do so with educated pain management physicians and not PROP and /or treatment center owners who stand to make money from the drop in pain medications. This entire conversation has the pain community afraid, panicked and in more pain because of their fear of living in pain or dying because they cannot live with it.
It seems to me that Andrew Kolodny will not respond to the National Pain Report because he knows that Ed Coghlan is an upstanding publisher. He doesn’t allow people to use propaganda or say things that cannot be proven. That Health News magazine has a great reputation and that is because many peoples voices are allowed to be heard. Andrew Kolodny was offered the chance to have his voice heard. He wont respond because in the pain community, he is the “enemy” and not the “star”.
These are my own private views.