A Chronic Pain Activist Has a Message for the Rest of Us – “Think Before You Act” (or React)

A Chronic Pain Activist Has a Message for the Rest of Us – “Think Before You Act” (or React)

Amy Partridge lives in Pittsburgh. She has Arachnoiditis. Like many with it, this professional woman who worked for a health insurance company for nearly two decades, has had to quit her job.

But she didn’t quit working—she turned her attention to fighting for chronic pain patients.

Last summer, she testified before the FDA. (Here’s a link to it)

Amy Partridge

I should have met her before now, but I hadn’t. Then over the weekend, I saw a conversation that she started on Twitter—a conversation that was so “on point” that I reached out to her.

She captured the same feeling that I get practically every time I review the reader commentary on many National Pain Report stories and columns. That is the growing intolerance that many chronic pain patients have toward just about anyone who doesn’t toe the line on the “opioid controversy”.

Her theme was pretty basic—chronic pain patients need to be smart about how they comment and, quite frankly, more tolerant and less negative about people who either may say something they disagree with or are only now surfacing as supporters.

I called Amy and asked her if I could put together Tweets into something for all of us to read (and consider)—She agreed.

So, if for some reason, this post angers you—be mad at me (Ed Coghlan). To Amy, you should be thankful. She is a serious, intelligent and active chronic pain patient who not only is being heard at federal agencies, but is making an important point. That is that the debate seems to be changing toward the point of view that the chronic pain community has been asking for, for three years.

Amy’s eight tweets consolidated read like this:

I’ve seen some troubling comments lately. We have a worked very hard to impact change. Now that the CDC, FDA & AMA have all issued statements, we have the foundation to impact positive change. It will not happen overnight and it cannot happen 3 years ago.

As a pain patient I DO understand the frustration of 3+ years of having to fight for care. But if you’re unhappy with the clarifications, absent a time machine to undo the guidelines altogether, what is it you think WOULD help? I am not understanding the constant negativity and genuinely want to know what actions you feel would help. It will take some time to roll back state regs and payer policy. But without these recent clarifications, none of it would likely be possible.

So, while it’s frustrating to have to wait, this is the foundation we need to make those changes that WILL impact prescriber behavior. We are far from done advocating, but these announcements have been a MAJOR change. We finally have statements directly from these agencies to take to the medical boards, to insurers, etc. I just wanted to lay out some context from my perspective. When leaders come forward and advocate WITH us for the first time, what good does it do to bash them and tell them they’re 3 years too late? Do you realize that may prevent others from speaking out on our behalf when they see how others advocating for us are treated?

Again, I completely understand the frustration. I, too, have been denied care on multiple occasions. We HAVE to move forward, but with the lessons learned. We will continue advocating until access is restored! But while we do, please think about how your comment may be perceived. We’ve pushed so hard & waited for so long for agencies and industry leaders to stand up & recognize the suffering in our community. Now that they’re doing it, let’s greet them w/ respectful comments. You can disagree without being rude.

If all they get are comments saying how horrible they are, do you really think they’re going to have any inclination to work even harder to help us get the next round of changes implemented? Please, for the sake of the community, let’s keep it professional.

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Authored by: Ed Coghlan

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Ali

The definition of Opoids addiction, abuse, and misuse has crossed over into the definition of Opoids as pain medication for intracable chronic pain patients and made them part of a group of noncompliant addicts who use Opoids to abuse,.misuse, and mix with other drugs. Definition of Addiction,.abuse, and misuse of Opoids do not apply to the compliant patient.
Define withdrawal from Opoids addict verses an intractable chronic pain patients withdrawal.
So if an intracable chronic pain patient stops and has withdrawal
Is this from substance abuse or intracable chronic pain that affects life so they can be an asset to society. Somehow this grouping them together seems like compliant patients are being profiled, selected, and placed with a study of patient addicts.
Define withdrawl of an addict and withdrawl of an intracable chronic pain patient. The definition of Opoids addict with withdrawl is all about Opoids and next fix where withdrawl of an intracable chronic pain patient is about quality of life free of pain to be an asset to family, lived ones, and society.
This is a travisty of injustice to the intracable chronic pain patients by profiling without due
diligence and definition of profiling of an addict placed on the intracable chronic pain patient.

Louis Ogden

Kelly, I agree with you on many of your points. What the govt has done to us is tantamount to torture and the last time I checked, torture is unconstitutional. I am angry – all of us are angry but the fact remains that civil dialogue will get us farther than slamming people. Another thing that I often see in comments is a break down between addicts and pain patients. EVERYONE deserves to be treated with kindness, respect and human dignity. Have I ever made a snide or angry comment? Of course, I have – I’m only human with human frailties. After doing so, I feel guilty about what I’ve said and usually come back and apologize. Please, as someone else commented ‘turning against each other will ruin our cause.’ PEACE!

On one level I agree with this, but on another…not so much.
There was a story a few days ago about terminal cancer patients being denied pain meds. One commenter’s response boiled down to, “This is an icky story & it makes me uncomfortable to think about, so I’m going to refuse to believe it’s true.”

I can understand how people who have no experience with intractable pain can fail to understand the reality of it. This is simple ignorance, & can be remedied if the person isn’t close-minded. But there’s a big difference between simple ignorance & willful ignorance, which is what the above-mentioned woman was engaging in. I have absolutely no patience or understanding for people who are willfully ignorant, who deny reality merely because it makes them uncomfortable. I won’t even attempt to be kind & understanding & professional with people like that. I had to watch my mother die in unspeakable, unnecessary agony, because a combination of hysteria & willful ignorance caused the “medical professionals” to deny her any pain relief whatsoever. There was no question that she was going to die, and within a few weeks. But those weeks were utter, unmitigated, monstrous Hell, and they probably felt like an eternity to her. And no one can convince me that torturing her did anyone any good, that it saved even one recreational drug user from ODing. A wonderful, kind, intelligent woman was forced into sadistic agony for NO REASON. And that commenter CHOSE not to believe it because it made her uncomfortable. Frankly, I hope she learns the hard way that insanely awful things happen because people choose to be ignorant and thick-headed. That sort of attitude that has led to the worst crimes against humanity, from the Holocaust to the Tuskegee Experiment to eugenics and genocide, and to the monstrous tortures that are going on right now.

Cindy

Thanks so much, Amy for all the work you do. I agree we need to be civil. It is hard, most people are very angry, for good reasons. We all have to try our best and know people are much more willing to help when you are nice, or as nice is you can be under the circumstances.

Anonymous

Amy, thanks for all you do!

Ed, thanks for posting this.

I agree and was thinking the same thing. It took a few years, but the fact that so many people advocated on our behalf and agencies said that they were in error,appear to be listening and are willing to revisit changing policies is an accomplishment.

We definitely have to keep advocating – but it is a big step in the right direction.

That was Step 1. The logistics will come,

I have had no nerve blocks since Nov.2019 and now no pain meds since Mar. 2019. The neurectomy I had on Apr. 10th. did not work. I was given three days worth of oxycodone after my surgery. I have no pain doctor anymore and cannot find one. Another one of my doctors tried to get me a RX for 2.5 MG oxycodone with 325 MG acetominophen on Apr. 29th. The pharmacy said it had to be pre-authorized first. When my doctor found out all the hoops he had to go through to do it he said he could not. I sat in my room and cried and for a split second I thought how easy it would be to get my gun and shoot myself but then I thought of my two sisters I would leave behind and thought of Jesus Christ and that my life belongs to Him. I called my insurance company to try to get some help finding a pain doctor and he was able to get the pharmacy to give me an emergency supply from the RX that was not pre-authorized, it amounted to six pills. Out of these six pills I take the last one at 8AM this morning. I had to forfeit the other 54 pills when the six day emergency RX was filled. I have not heard from my insurance company concerning a pain doctor, I guess they cannot find one either. I have been in severe pain and as I write this letter I am suffering greatly. I called and made an appointment with the surgeon again for the 9th. to see if he will agree to do an exploratory to try to find the source of my pain, it is basically my last chance for any hope of relief. Sometimes I wish I had been born without any abdomen as I have never been without pain since my earliest memory. I would like to have all feeling to this area removed. Being a christian I try to keep a short tab and forgive as I go like my Lord wants me to. Have always been severely under treated for my pain but my question to the author of this article is ; how is all the damage going to be fixed from this horrendous mess and how are we to get pain meds if we have lost our doctors? I am trying to ask in a positive manner, LOL.

T. Negrete

Gail Honadle, thank you for the correction! I will be changing my terminology to INTRACTABLE Pain.
I’d like to remain positive with my comments, it’s difficult! I jumped through all the hoops I was supposed to keep the medication that work for me and my Legal Opioid Prescription was cut off anyway. Nevet abused them. It took three Doctors who passed the buck on to each other to tell me. Cowards! I don’t trust most Doctors anymore! I know there are qualified compassionate Doctors, I’m not willing to weed out the Cowards to get to another good one. I’m not rich! That was the best positive comment I could manage today!

Adam H

Sometimes the truth is unpleasant ..but civility is called for. Fear and anger often work together and we are only human. This has been a total nightmare beyond comprehension and its time to end it. Peace and love..Adam

Adam H

Well if the pharmaceuticall companies continue to receive astronomical lawsuits because of addicts..we mayj have a serious problem beyond imagination. The pain medication we depend on to live might be rationed because of dangerous drug shortages. Remember drug manufacturers are already cutting back. We have to be mindful whats at stake..peoples lives. People in our pain community are essentially very kind and decent, but let it be known we aren’t to be taken as a joke. We are weary and just want our medication left the hell alone. Even major trauma centers here have been having huge problems with narcotic drug stocks..Im no genius but I dont think this is a good sign. my ptsd has been seriously aggravated from this fiasco about our meds and I get pretty excited sometimes..I do apologize if I get carried away but my god we needs
our medication period! Hooah!!

Missy

Plus….
I must say I agree with you! When you see people suffering and dying everyday, maybe a little a**chewing is in order!
Sorry, I’m just not in the mood to play nice, especially when I think of DEAD PAIN WARRIORS!
They’re never coming back and all because of a big lie that has no basis in fact!!
Sorry if this seems negative!!

Dar

Why are illegal guidelines still being applied? I know of many hospitals, clinics, and doctors, still refusing proper treatment to intractable pain patients in NYS. Yes, doctors are scared. The policymakers were able to threaten doctors, etc. to force guidelines that were inhumane at the least, even deadly. This all happened very quickly. Doctors are scared, and became targets for dismissal if they didn’t listen to the guidelines. We all see the results. Yes, finally the policymakers admit the misguided applications now. If they could have continued their initial war on pain patients, I feel terrible to say, they would have. But this America, and those people who were aware of their constitutional rights finally spoke up, fought to be heard, and are winning. Thank you to all of our advocates. It seems the policymakers counted on the posibility that the weakest, most vulnerable of painpatients did not know their rights, and acted on it. We are aware of the horrible pain, and death, this has caused intractable pain patients. If the incorrect guidelines could be put in place so quickly, why can’t the corrected guidelines bet applied right away. I am pretty sure the professionals of the medical community that were contacted, causing this outcry are stillavailable in a national database. They should send notice to all of them explaining the misapplied guidelines, and explainthat adaquate treatment be reapplied, without fear of reprisal. They could add the reminder that doctors took an oath to treat patients in pain, (and every patient), with empathy and respect, with effective treatment, based on their professional knowledge, explaining the harm these misguided, and misapplied guidelines have caused. Doctors should know they can do this without fear, and if pain patients do not receive proper care, there will be conquences for that, not for treating pain patients based on their individual needs. Even animals get deffensive when in pain.

James McCay

Thank you Amy & thank you Ed and everyone advocating for others. We all appreciate what you are doing!
This would have gone NOWHERE (emphasizing), it not for the National Pain Report and its writers- bringing us all together in one place. Some are affected far more than others, like myself who’s fought for others my entire life. I fought far before I became sick at 34 (I’m 52 now) being forced out of my medical career I loved. I’m in SO MUCH NON-STOP 24/7 PAIN/FATIGUE I cannot fight right anymore or barely live a “life”. Yet I won’t give up life. So THANK YOU SO MUCH to those who can still fight!

I agree with Gail’s post; there needs to be a CLEAR Level System of pain that is registered with the FDA & CDC so we don’t have to jump through a hundred hoops to see a new doctor. Or be REFUSED SERVICE just because we are Chronic Pain patients!
It could be a 1-5 System with clear standards for each level. How about a scannable FDA PAIN ID CARD for the CDC (when fixed), FDA, pharmacies and doctors? I too have Chronic Intractable Pain. >>>EVERYONE SHOULD KNOW EXACTLY WHAT THAT MEANS.<<<

We can't be "fixed", most of us are INOPERABLE, we tried EVERY medication at least once (non-narcotic or other), had every procedure (injections) and NOTHING HELPED our pain! When we finally found something that worked; that became OUR LIFELINE and usually we need a High Dose BEFORE the 2016 CDC Guidelines. So if anyone questions why we "show drug seeking behavior"… YOU BET WE DO. Because it is usually the only medication that helps us enough to keep us from suicide!

Ed, we are MAD because many of us have had no one to talk to who understands us. So many of us are finally able to vent to someone who "gets it". This is a NECESSARY process in our healing from what we've gone through (some far worse than others). But the last thing we should ever do is attack each other!

Ali

Syphilis study men died horrible deaths. Government didn’t stop it.
Radiation of newborn’s thryoid.
Found out about it in later years when developed thyroid cancer.
Government didn’t stop study.
Formula to third world countries many infant’s deaths. Government didn’t stop it.
Agent Orange many veterans babies born with lukemia died horrible deaths. I saw this personally. Government denied it.
AIDS hospitals wouldn’t allow physician’s to tell medical staff patient diagnosis. If accident of body fluids nurse was not told or tested. Government’s rules. I was one of those nurses.
Pain control addressed. FDA didn’t feel patients were being treated fairly in regards to pain.
Patients evaluated for pain and given appropriate doses of pain meds including Opoids encouraged. I took classes on how patient’s pain was number one when admitted to hospital, seen by physician’s, and pain clinics. I was one of the nurses.
Now 360degree turn around and patients stripped of all pain meds, rejection of physician’s, bullied at hospitals, and now I am one of those patients. Now we wait as the others who have died before us because we need to polite.
I will be calm, polite, and considerate but I will not be silent about the negligence of duediligence that these guidelines we’re applied at soft targets. Law abiding citizens who followed all the guidelines are now being treated as lepors.
I truly appreciate your stance but the wheels of the government turning slow has cost millions of lives.
Whose life has been lost in the last hour I have written this?
Even one minute, one life, is to long for those who have profound chronic pain to commit suicide knowing there countries government has tossed them aside and wait until the wheels of the government decide change.
So very sad 😢💔.

Kevin

Well said, Amy. I often read the comment section that appears after these NPR articles because, if you can bear to wade through the hysteria, conspiracy theories and vitriol, helpful information is provided by a handful of commenters. I cringe at many of the comments and often think, “this is the stuff that alienates the medical community.” You can see this by how some commenters completely ignore the very point of this article, and launch into tirades. Try as you might, and I do appreciate your effort, there will always be those that use their suffering, which is surely worse than most everyone else’s suffering, to launch an unhinged, unspell-checked diatribe on how the government, in a conspiracy with Big Pharma, is out to get us. Good grief.

Gail Honadle

Why do all of you continue to use the wrong terminology? Chronic pain is NOT a medical disease, nor does it last 10, 20, 30 yrs. What we have is it’s INTRACTABLE PAIN, IP an MEDICAL DISEASE, caused by another Medical Disease, thus subject to Malpractice laws of any given state. Regardless of the new stupid laws based on Redfield’s and Kolodny’s Lies for Greed and Revenge. States saw a chance to enrich bankrupt coffers suing Big Pharma, now hospitals that rely of the same Pain Meds for Surgeries and Anesthesia. there that new Term you need to be using, instead of Opioid as it is now a blanket term that includes all Illicit Drugs too. Hospitals would soon be doing NO surgeries with out Pain Meds, unless they were emergencies from accidents, car wrecks, or gun/stab wounds. We all have issues with PIG Pharma and their damaging drugs, or the over priced ones. Going Generic is not always the right course. They have side effects too, some don’t work as well as the name brand. Look at the 5 Recalled BP meds from CHINA. Over taxation drove our medical Manufacturing out of the USA. NAFTA drove Illicit drugs in and is still doing so. Trade agreements with China brought in More Illicit drugs in container shipments. Lack of personnel to screen every load or truck is a issue. Then we have designer Illicit drugs. I lived through the 60’s when LSD was on the scene and other hallucinogenic drugs. Nothing has changed in those 4 decades on that front. Yet here we are Patients and doctors who should know better using the WRONG WORDS. Failing to correct any one who uses the Wrong Words.

On point 100%! We’ve been asking them to just LISTEN to us for the past 3 years and they’ve done more than that by a big leap. We can’t move forward with negativity toward those that are now admitting publicly that there’s a huge problem and it needs to be fixed. Absolutely nothing happens overnight and they need our input not bashing to move forward and begin fixing the problem one issue at a time.

Plus,

So, if we are good and well behaved children, things will go better for us.
I’m glad the founding fathers differed and dumped the tea into Boston Harbor.

The elements of this so called crisis are actually a compilation of very negative issues.
Negative realities, like uncontrolled run away chronic pain, lies and deception by the authorities, cowardly doctors, grandparents unnecessarily suffering and dying in pain after 80 + years of a hard but fruitful life, greed and corruption by providers and yes suicide by pain.

So let’s not confuse negativity with reality.
And the vast majority of comments from people in pain are from the perspective of grim reality. Not much room for niceities here. And in considering that, most are quite reserved.

Amy, I really do understand your point, but I’m just afraid that a soft pushback from our community, will only invite another turn of the thumbscrew. Most folks just cannot take the current pressure and all trust is gone.

Am I being negative or realistic?

Kenneth Hyatt

Wow what an interesting point I agree 100 percent the current state of affairs suck but keep trying for compassion

Terrific point. Let’s think about it… Those who have gone before us, to work very hard and to speak on our behalf have made good lead way by being direct but professional in their communications. Let’s follow suit and keep the momentum rolling. Good and positive communication is the key.

ElizabethR

I am still essentially a newbie to this forum (I’ve been commenting for about 8 months) and a relative newbie to living with long-term incurable pain. I’ve had back problems most of my life and had 3 surgeries in my 20s. The last one was, for many years, relatively successful in that I worked full time; I could do what I needed to do and even some of what I enjoyed doing. However, about 4 years ago at age 78, my body began to signal that it has outlived its projected shelf life and now lets me know every day in no uncertain terms. I’m retired now and still working on accepting not being able to do many of the things I once did.

I didn’t intend or plan to live out my last years in serious, undertreated pain–but there it is. I deeply appreciate the advocacy that those on this site and others have done and continue to do in response to the 2016 “Guidelines”. I’m not at all sure that I would have had the fortitude and courage to live 10, 20, 30 years in the kind of pain some of the contributors to this forum have experienced. I don’t do pain well at all!

As difficult as it is for patients, I agree that clearly stating our situations and concerns in civil terms will likely win more of the attention we need from the world of healthcare “experts” and regulatory officials–most of whom are healthy adults between 30-50, few of whom suffer from debilitating, chronic pain. Thank you for pointing out that they will be more likely to work with us and listen to us if we try to keep it professional. I appreciate the progress that has been made recently and will try to keep that in mind.

Maria

Totally agree! We need to move forward! These recent clarifications give us the ability to move forward and while I too feel the past 3 years have been horrific, I’m grateful that changes are in our future and we need to concentrate our efforts and positive energy on making them happen. We are pain warriors! Keep fighting!

Kris Aaron

I can’t imagine being angry at first-time supporters, even though the oppression of chronic pain patients began three years ago. We do need all the help we can get.
But I completely understand our rage at people like Jeff Sessions with his comment about how pain patients should be like a “marine” who, when in pain, would “take two aspirin and suck it up”. THAT we don’t need!
People who’ve never experienced chronic pain, those with a cavalier attitude to suffering like the anti-opioid hysterics, get no sympathy or patience from me. Andrew Kolodny, a founder of Physicians for Responsible Opioid Prescribing, firmly insists opioids are worthless for chronic pain. His recommendation? “Physical therapy, NSAIDS and ‘pain acceptance’,” if you’re ready for that. We are supposed to “accept” the unbearable pain of broken bodies that don’t respond to either NSAIDS or therapy. Otherwise, he frets, opioids will do us no good whatsoever and turn us into addicts.
I should add that Kolodny made a nice profit off his ownership of Phoenix House, a chain of drug rehabilitation clinics that specializes in working with opioid addicts. Of course he mentions addiction as a fate worse than death — his income depends on people believing he has the solution to drug use.
Perhaps that’s true for addicts, but it’s pure nonsense when directed at those of us living with chronic pain.– with our addiction rates of less than one-fifth of one percent. It does, however, explain why so many pain patients are making a single visit to the Drs.Smith & Wesson Pain Clinic. We’re being driven to suicide, thanks to the non-existent opioid hysteria sweeping over the US.
Illegal fentanyl and heroin are killing people. Let pain patients have pharmaceutical opioids!

Glen

Once in a while I take myself off fb because I get So sick and tired of the ignorant people telling me my information is wrong and I do Not know what I’m talking about! When I get to that point I’ll snap and tell them off in a information way and sometimes go as far as to say “if you disagree with this True information, that’s fine. You can be Completely Wrong. Lol?”. I never swear at people as much as I may want to. Lol
With out politicians and government I thanked them, but I also ask if they can help change the DEA to change their laws. I explained that although this is a good start, the DEA Has to Stop going after all Drs for Perscribing! That’s the Only way to truly make any change. I get hot headed like anyone, I’m only human. Lol. I also lost all of my meds in May 2016 after Dr Gosy was attacked by the DEA. I have Not been able to find 1 PM Dr that is willing to Perscribe in Western NY since then and that has not changed!

Barb

Well said! Point taken.

Cheryl Marosi

Im not emotionally prepared to compliment the people responsible with interfering with patient care. They have taken on the role of physicians, violating patient rights, whilst removing medications that have successfully treated hundreds of thousands of patients who could not otherwise function. They must be told under no uncertain terms was this so called opiod crisis a right of lawmakers involvements. They have again violated HIPPA and patient rights. So Amy, I as a Registered Nurse tend to shy from your wanting to compliment these people at the expense of beuracratic nonsense while patients are literally suffering. Sorry!

Valerie Hirschberg

Well said. Think before you speak. My husband has a great motto: you can say almost anything to someone if you choose your words very carefully. One of mine is : make your point , don’t blunt it. Once our words are out, they are out there and we can’t take them back. The past three years have made life tougher than an already tough life. For the past 21 years in my pain journey I just have kept going back to fighting to keep my hope. Over and over. So hang on everyone.

Larry F

Totally agree. I’ve periodically left responses here that comments did us no good if they were either off-point or hysterical. Too often people like Andrew Kolodny have sought to portray members of the chronic pain community as being psychologically off-balanced, and too often the replies on pages such as this have given ammunition for tat kind of view to be presented to others in government that they are trying to influence against us. For any hope of continued success we need to show our pain is real not imagined, we are thoughtful not emotional, and that we are united and not petty and backstabbing.

Stacie Wagner

Ed Coghlan – Thank you for caring. I don’t know about intolerance for help but I do feel the desperation of my peers because we have so little energy and too much pain. Unfortunately the internet offers all of us a sense of annonimity. If have said anything that was ugly I do apologise. I’m angry at everything, even myself. It’s hard to be willing but unable every moment of everyday. So to anyone I may have hurt please accept my sincere apologies. Thank you all for your help, comments and support.

Dar

I agree we have to be as ‘professional’ as we can, but this is not always easy when we have been treated like criminals, and scolded for being truthful about our pain. Pain patients have been embarrassed, victimized, told to ‘shake it off’, looked at with smirks, and even been discharged from facilities we have been patients in for many years. Many patients have faced severe withdrawal, on top of deblitating pain. Even with proof, we have been victimized-and accused as drug-seeking. Aside from being isolated, alone, and shamed, many pain patients have taken their lives. There are people who have caused this crisis against humanity, and have to be held accountable.It can happen to anyone. It is easy to say ‘we are sorry’ to pain patients, however, will this lack of sufficient treatment of pain ever really go away? Will the shame, and death of loved ones continue? I do not belive those with emotional, and intense grief, should be told if they do not act professional, our actions to resolve these often criminal actions will lead to a an end to the sucess we have made in this war against people in pain We should act with respect, voicing our concerns, and trying to be respectable. This is not always easy when loved ones, veterans, and others have died, or will die before the actions against pain patients come to an end. What if diabetics are told they will no longer receive their medications, or cancer patients stop receiving treatment because some people think they are abusing their medications? Would these victims be able to keep calm while they, and their loved ones die? Opinions change when it hits closer to home. Can the damage ever be undone? The professionals that helped this war evolve, and flourish, are educated, intelligent people, and yet empathy was not an option. Yes, we have to be careful, because our rights can be violated, even dismissed at any time. It needs to change, now. Emotions run deep. This never should have happened.

Excellent article. Advocacy takes style and time to be most effective. We should all try to be cognizant of how our words affect all readers. However, I must ask if the regulators who might read angry input for chronic pain patients remember or realize that withholding opipids from responsible patients is a form of abuse and neglect perpetrated against adults with disabilities, the elderly and some children? Anger is simply one of the many recognized behavioral indicators of abuse, neglect and exploitation (ANE). ANE are generally illegal in all 50 states. In some states it’s a crime to cause physical or mental injury or suffering to any person in these three vulnerable populations. The regulators and other stakeholders should know or acknowledge this. Abuse, et al, are always ugly and destructive. Thank you for the article, I for one will try and “tone down” friction causing words in my advocacy work, but the truth must be told.

Stephen

I agree wholeheartedly with this post. When dealing with health care professionals, as with any other person, sugar goes a lot farther than vinegar. While I have been tempted to scream, rant, and rave at some of my providers, I know it only undermines my own and our pain communities credibility.

Louis Ogden

Amy is right. I’ve even seen comments advocating violence. I understand the frustration as I am so full of rage and anger myself but taking out our problems on others gets us nowhere. My wife has also testified b4 the FDA. If you would like to hear her testimony –
SEE: https://www.youtube.com/watch?v=t16c6co_Txk

C. Li

Well said. Keep everything civil.

Martha

Always a good reminder, so thank you.
Many thanks to our advocates for working so hard to help us all, especially for those of us who are not strong enough (yet!) to advocate for themselves.
As your message states & the old saying goes…. ‘you always catch more horses with sugar’

Jennie Agard

Over that past few weeks I have come to a conclusion, which is based partly on my own experience in managing my fibromyalgia in a state where rheumatologists are inaccessible and PCP’s decline to diagnose; partly from the posts I see in my fibromyalgia support groups on Facebook; and partly from reading the National Pain Report.
– Pain management is personal and unique. The most common approach of the medical profession is “ change your attitude.” It’s what I got, and it’s insulting. It needs to be rephrased as, “I am your advocate. I will work with you to achieve your personal best possible outcome. This best possible is likely to be some combination of medication, relaxation, exercise and diet, and maybe geography, and there’s going to be a lot of trial and error.”
– Some version of a 12-step program may be helpful. A sponsor. An admission that we are our of control, and need to open ourselves to alternatives. A grappling of who we are and what makes us better (psychologically, physically, emotionally) as well as learning how to avoid what makes us worse.

Gary Howard

BRAVO Amy !!!! We are all angry and frustrated. However, the wheels of justice turn slowly and governmental change happens even slower. Being intelligent about the way we handle ourselves will determine how we are all perceived. That is one of the most common complaints from what I have been reading for a few years. We are all upset with the perception that we are a bunch of drug seekers and want to get high and we are all a bunch of “addicts who are acting out” etc. WE KNOW THAT IS NOT TRUE !!! But to convince these folks that are obviously uninformed ,notice that I didn’t say “ignorant”, we must be smart and speak out in an intelligent manner that will garner respect and admiration . We must touch their hearts, minds and souls while instilling a little fear of touching their power base and their wallets.You would not believe how uninformed some very powerful people actually are, or maybe you would believe it. I work in an industry very close to law enforcement and I have been to political galas and law enforcement group meetings etc… when congressman and law enforcement leaders get up and make these mostly self serving types of speeches, I cannot even believe what some of them think and say about the whole issue of the “Opioid epidemic” . There is no Opioid epidemic to be sure, there is however, a Heroin and Fentanyl epidemic of epic proportion. How do I know this? Because after 30+ yrs.as a pain mgnt.patient, I struggle to be treated properly and obtain my meds each month. However, my beautiful, bright and athletic 21 yr. old son just died from an accidental OD of Heroin, he got it 2 blocks away from his Ivy League college!!! He had no problem getting that !!! 300 Americans every day die that way !!!! The problem is not in the doctors office !!!

Gail Honadle

Arachnoiditis is comparable to Bone Cancer per pain. And should have the same proper pain treatment. Now we have hospitals that widely use Pain Meds post Surgery, and other medical conditions, wanting to sue Big Pharma over the Pain Meds. Hospitals would not be in the business of providing Surgeries or treating gun shot, car wreck victims for long if all they offered was Tylenol, and a Ice Pack. All they are are GREEDY.

Stacey Fields

Until the DEA backs off the doctors we are still in a bad situation. Doctors are still too afraid to prescribe and with good reason as the DEA keeps their witch hunt going. We have pain patients taking their lives daily and I have not seen ANY improvement since the agencies have spoken about the misinterpretation of the guidelines. I do not understand how the government could listen to a psychiatrist who is NOT a practising medical doctor and has NO clue how to treat diseases that cause severe intractable pain. Being politically correct has gotten us nowhere, no one is listening, no one cares! This whole mess is inhumane and discriminatory! I understand what you’re saying and I agree no need to be rude but, in the same token they need to HEAR how much suffering they are causing. They should have had alternatives in place before they did this and they should also have taken into consideration the DIAGNOSIS before saying how much medication a patient needs. The CDC needs to withdraw the guidelines and stay out of our doctors’ offices!

Gail Honadle

Arachnoiditis is a rare disease that is equated to the Pain of Bone Cancer. It should have the same pain treatment as Bone Cancer. Just because the FDA forced the CDC to ease the Forced Tapers doesn’t mean you will get a higher dose or get your pain meds back if you have already been Forced Tapered. You still have to get your Doctors, Hospitals, and State Laws to be changed. Some States have more Draconian laws than others. Changing their minds is a Herculean task. Now Hospitals are wanting a Piece of the Pie of Big Pharma’s deep Pockets. A Hospital would soon be out of the Surgery business with NO PAIN MEDS or Anesthesia.

Good post. Brings to mind the picture of Jesus washing the feet of the ill and injured and poor and hungry. If 100,000 people posted a brief story of their pain and what lacking pain meds did to them, and remind leaders that they cannot act like Gods of Medicines. Leaders have their jobs to LEAD the world into humanity’s grace. Is it a graceful act to be responsible for people to suffer? Paul Cahan

Andrea

Great job, great article, great points. Thank you Amy!

Cindy

I agree completely with this article and the tweets.
But it’s easier to say that when my pain is under control.
When my pain spikes and there’s nothing I can do about it, it’s hard for me to remain calm and rational.

About a month ago, on Day 4 of a horrible spike, I spent hours considering suicide, because I was afraid to take another pill or two, due to my forced taper. I finally realized that until I run out completely, I won’t suffer like that any more. I will worry about later, later. I still conserve my pills and have more pain that I should, and spend days frozen on the sofa so as to not aggravate it, but when my pain is super out of control, I take what I need.

My pain today is horrible, and I just took another pill. Without it, I’ll never make it to my doctor appointment later today. Without it, I would not be calm right now.

And, I dont’ know anyone who has committed suicide due to inability to get drugs. And I don’t know anyone who was forced to buy illegal drugs in an attempt to survive, but then died from tainted drugs. So, for me, it’s easier to stay calm and rational and know that anything in gov’t takes time, and that we are making great progress these last weeks.

But, when I get told again, that my other health risks have increased — bone density, risk of cardiovascular event, etc —- due to my super sedentary lifestyle, I will be angry again since my forced taper has forced me to be even more sedentary than I already was due to my pain.

Kathy

AMEN!
Thank you so much, Amy P. for being a voice for us. You are right that honey draws more flies than does Vinegar.

Samantha

I agree that, there’s not one person in the world that, when faced with negativity, they’ll just stop listening! Judges, MDs, legislators, etc.
However, I believe also, that when you’ve experienced 1st hand a, “surprise! We’re cutting you off” type of treatment…maybe ppl just felt relief at having a safe place to “vent”, to commiserate, to feel finally, some vindication.
So, to be fair, if by “comments” you’re referring to this particular forum, maybe some understanding and tolerance is deserved on both sides.

Ali

As a retired RN and chronic pain patient I truly understand the political arena.
And I am one of those troubling commentators.
As an RN if I had practiced medical negligence once I would have been charged, lost my liscense, and no longer work in the medical field. Yet FDA, CDC, etc agencies allow this practice of guidelines to continue knowing suicides have occurred. How many deaths before this is addressed does it take for these agencies to be charged with medical negligence.
How many months, days, years do we citizens allow these agencies to continue with guidelines that are creating an atmosphere of profound loss.
Last two decades these same agencies promoted pain care, pain free, quality of life. Now instantly they stop and have new guidelines that are 360 degree turn around.
Please delete my comment as this is not let’s play nice till these agencies change there mind. The history our country has in committing medical negligence is horrendous.
Thank you for your kindness but even one suicide if I was the cause of it as an RN would have meant prison time. These agencies have caused many suicides and yet this travisty continues. The verterans are part of this guidelines negligence.
Again thank you but lives are being ruined by the minute and no government agency even turns a helping hand.
Waiting is not an option for many have died in history of America’s medical negligence and this very attitude gave these agencies time to cover there butts.
Good luck on your endeavor but even one life can not wait on these agencies time.

Mark Ibsen MD

Agreed. Let’s let the professionals keep it professional.
We can also distinguish between support groups and activist groups.
The anger and resentment you see is legit. People feel betrayed by institutions that formerly supported patients.
Scary.
Thank you for your leadership on this, and leadership always begins with listening and
Acknowledgment.
If we could channel the anger of 100 million Americans in pain, we would have by now.
We
Must
Persist.
To quote one of my Mentors:
“ we are giving up making “ making wrong” WRONG”

And by that I mean any injustice generates anger. It’s how we channel that energy that counts.
Let’s keep listening.
Restore trust
Build community
And end this National Nightmare that is only now becoming visible to all.

Jorja R Ghera

Amy Partidge is spot on. We all need to be thankful change is finally coming to fruition. What we don’t need are nasty, rude, unnecessary comments — as Amy stated, this will not help our plight–it will cause the powers that be to take note and rethink their decision.

I applaud her comments & agree with everything she said. We don’t need to start a war over change, we need to embrace it and try–as difficult as it may be–to be patient.

Change is just around the corner.

Howard

Amy is so right on. We can’t just jump on someone who doesn’t agree with us. We need to engage them in conversation that is polite and doesn’t belittle them. We can do this while not backing down on our position. Patients with intractable pain need to band together and support each other, not quarrel amongst ourselves over minutia.

We need to keep in mind that medical doctors are not our enemy. The enemy is the laws, ignorance of pain, insurance companies, society. Doctors are caught in the middle between them and us. Doctors need our help and understanding in getting society and the government turned around to see our plight. It will take some time and patience on our part.

Paula

Obviously this lady is not in the midst of being denied care, if she were she would react differently. What good are these statements when my provider is going in the polar opposite direction at 100 miles an hour?

Rosalind Rivera

The writer makes a good point however we the sufferers will be forced to endure, seek alternate sources for relief and often illegal sources or finally, take it upon ourselves to put ourselves out of our own misery once and for all!

Rosalind Rivera
Lucerne Valley, Ca.