Pain Patients – Time to Do Something?

Pain Patients – Time to Do Something?

By Ed Coghlan

When the National Pain Report ran this story about a US Pain Foundation survey that showed pain patients expressing overwhelming skepticism about the federal government programs affecting them, many readers commented on the story.

Those comments prompted one of our valued contributors and pain patient advocate, Terri Lewis PhD to write that pain patients should stop complaining and start doing something. Here’s what she wrote:

I’m going to say something people don’t want to hear.

People with pain need to stop acting like victims.

People who have pain must become experts, informed with the best information about the problems they are experiencing, with solutions they can articulate with ONE VOICE.

Everyone with an ax to grind doesn’t need a Facebook group.  What is needed is collaboration, and research.  Even with limited resources, massing the voices and pocketbooks of persons with pain as a single voice working under strong leadership can make a difference.

If we want the attention we deserve we must walk the walk and speak like professionals with voices that can be heard.

Not happy?

Do something about it instead of shouting into the well and listening to your own voice come back to you. Shouting may make you feel better but it will not lead to change.



When I emailed Dr. Lewis, who is teaching in Taiwan, that I planned to run her comments in a blog, she wrote:

“1,000,000 voices acting together as 1 will be far more powerful than multiple messages deteriorating in the echoes.”

Paul Gileno, the President of the US Pain Foundation—the nation’s largest pain patient advocacy group—indicated that the group is planning a heightened advocacy campaign which will be announced soon.

As one survey respondent said, “What we need is a social uprising campaign to bring everyone together and fully informed on each of the different policies in order to make change happen.”

Gileno said, “They want to make a statement.”

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Authored by: Ed Coghlan

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Kathy Cooper

I am in Where do I send the money. The Industry has an unlimited amount of money though. We need to show a clean cut hardworking person, and explain it was not their fault. There are those Media Myths about the Moochers who hit the Jackpot when they are disabled. Then are the mythological Moochers who sit around all day collecting “Social Security” and getting free drugs. There are number of narratives we have to counter. The facts are almost irrelevant anymore.

Jean Price

Lana…your group has been very active and as with this foundation, advocates for those with life limiting pain. I believe by working together, individuals can create the power needed, and even joining all the groups in a coalition would be great and add exponentially to our power base and influence! (Something I’ve suggested numerous times, and hope to see someday!) As a nurse who also worked in marketing and public relations, I have a PR problem with the naming of your group, and the continual use of the words addict and addiction by all those who are working for people with pain. I voiced these same thoughts and suggestions to the person in charge of your group, who had reached out to me in response to a comment I made on a post and asked for my help and suggestions, and involvement with their efforts. First and foremost the word pain is absent, plus those who are addicted are also patients, in their own right…not merely addicts who use illegal substances. They have serious patient-based needs too, although more from a mental health standpoint. So the naming could be confused as an organization whose goal is to have those addicted viewed as patients, not just criminals! And since people tend to read headlines and not go into depth, it’s important for a name to reflect as much of the organizations goal and definition as possible. Her response was less than I hoped for, yet understandable since the organization is still in its first several years and has “made a name” for themselves with followers who have pain. Unfortunately we also need followers and supporters who don’t have pain and aren’t as aware of the issues as we all are. A name change early in the game would be possible without too much loss, in my opinion, and well worth the positive image it might reflect! So that, being said…I am very aware of wording choices and the concepts we convey by these choices in our articles, and in the articles written by others about what’s happening to pain care from the president on down. The current trend in denying opioids to those with life-limiting pain has little to do with actual science and common sense, and more to do with the misleading concepts and the negative PR generated by those in powerful enough positions who have enough funding to get their abstract points across…regardless of the truth! So we have to battle not only invisible dieases, but also invisible concepts and untruths in their communications…and we must use equally effective PR campaigns and attention to wording. We truly have to be very diligent about not using THEIR words to put our points across, otherwise our words just add more bite to their bark!! (With this in mind, you group name not only doesn’t do you justice, in my opinion, it may actually adds points In their favor!). Just like so much being said about addiction in our articles and communications… Read more »


We definately need a voice, one that will bring attention to this travesty of injustice for chronic pain patients. If each of all the patients put in just one dollar, think of what 100 million of those single dollars could afford us? Commercial about pain patients and what we deal with on a daily basis , a commercial putting the people so against helping us, in a “pain suit” so they may realize just a little of what we deal with daily, and have them retract the stigma put upon us, by realizing or awakening their common sense. The “addicts” who are causing the legitamate patients suffering , are actually being considered to need more help with their addiction, than people who live in constant 24/7 pain! Why? There is much money to be had for those with financial interests in the rehab biz, especially when those same people are the very ones making the absurd laws. Yes even the higher ups in the cdc, have been tied to the rehab and big pharma backing them financially. Plus, big pharma wants to keep people now on opiates to take their suboxone etc, so they can have a steady income for life, which are prohibitly expensive, as much as 600$ a month, and if they stop taking them, have worse withdrawals , longer lasting. They do not “care” about us, its the bottom line that matters, and if they can get people to think they only have “our” best interests at heart, all the better. If they publish the cures to many conditions, @ cancer, they lose paying, desperate customers who believe that its the best treatment, will continue to line big pharmas pockets and the government will continue to be bought by them. Just my 2 cants, not a lot these days! But, who knows our bodies better than we do, and yet get treated as imbicels (sp)(sorry). @nd told as if we were children, what is “good” for us. Why should they be allowed to decide how drs treat their patients, and take any authority to help patients away from drs. Most people in the deciding factor, dont have medical degrees, but, because of the $$power they hold, decide for all. Sorry for the rant people, but, thats my opinion.

Lana Kirby

This article reiterates what our group, #PATIENTS NOT ADDICT, want to spread – the word that we are people in pain and being denied medical help. We won’t be casualties of the government’s “war on drugs” and we will be heard. We are banning together to make a difference. With this all being enacted by the feds, leaving doctors afraid to write prescriptions and pharmacists being afraid to fill them, unfortunately, we are being left in the shadows. And the State laws on top of the federal guidelines leaves us with a double edge sword. Our advice – get involved and let’s do something about this. Our group is also a support group for each other. If you can’t get involved, at least speak your voice and get updates from our group. Collectively, we can speak louder and at some point we will be heard. We try to help everyone on an individual basis. We are all in this together. #PATIENTSNOTADDICTS

Barb Hite

Kathy Cooper, your article brought me to tears, it sounds just like myself. Please keep fighting and maybe, just maybe someday soon someone will be able to help us. A friend in chronic pain.


I am a chronic pain patient with rheumatoid arthritis and fibromyalgia. I have been on the same dose for three years and have never misused my medication. Most days I have difficulty with routine activities, and that is WITH my medication. Now, I have been sent to pain management as my Rhematiologist will no longer presribe narcotics. The pain management doctor wants to only prescribe only half of my dose. I was told that there is a long acting med that he could give me but the insurance would not cover it, and it cost $800.00 a month. These laws are really hurting the weakest, most vulnerable people. Something needs to change!

Teresa C


I cried reading your eloquent post. I cannot even ask you to ‘tough’ it out. I just don’t have the heart to repeat to you the platitudes told to me. There are NO words sufficient to ease your pain, psychological and physiological.

I will tell you this, I am to damn stubborn, mean and am just ornery enough to stick around to make those bastards squirm for ruining my ability to live, not just to be alive!!

A nation of sheep breeds a government of wolves.


Start with your local congressperson. Don’t stop until you get an appointment to speak with someone. Speaking to staffers is okay. Move on to your senators. Don’t stop until you get an appointment – phone appointments are ok if you are too sick or too far away. By the time you’ve accomplished that, there will be a new issue to discuss with your local congressperson. Don’t stop until you get an appointment. Repeat compulsively….


We have a unique opportunity to act- as it is election year.
50 years ago there were articles about how pain care wasn’t meeting the needs of people in pain and they called for a bill of rights to address the inadequacies of pain care.
I believe we need a rights based approach to address structural inequalities in our institutions- government, education, the health care industry that are at the root of poor pain care. These inequalities have lead to the sorry state of affairs and the voice and needs of people in pain being trampled on and people in pain have been turned into serfs without rights to serve the designs of government and the health care industry- despite their empty rhetoric about “patient centered” and “individualized” and “effective” care.
People in pain need a much greater voice in the education, practices, and regulation of providers. We need a much greater say over what research is conducted and how and how it is reported. We need a much greater voice over the FDA and how they review and approve of treatments. We need a much greater voice over what treatments are paid for by insurers. We need to address subtle coercion in providers offices, eliminate blacklisting, and ensure that the person in pain is in control of their care- and not insurers, providers or the government.
We will need to try a great many different methods for creating real change in our failed pain care system. We will need to try to change many parts of our pain care system from Federal agencies, to departments of health, universities, civil rights organizations, international organizations, grassroots campaigns. We will need to act energetically and with a lasting commitment to structural changes in our society.
Our institutions have stripped people in pain of dignity, stripped us of freedom of choice, stripped us of respectful consideration, and provided us with slovenly and ineffective care. They have ignored international law- and provided cruel and degrading treatment to even children and infants.
We can sue the CDC over their guidelines over the prohibition against cruel and degrading treatment. We can do many things from petitions, letter writing campaigns, suing government, medical organizations, universities, departments of health, etc. We have been like sleeping giants and we can take back pain care and make it much more humane and responsive to the needs of people in pain as people in pain define them. Let us make sure the dried voices of people in pain no longer remain mute and meaningless and distant as fading stars to our institutions that have collectively created a humanitarian tragedy for people in pain.

Terri Lewis

It is time to come out of the shadows;
to reset your relationship with chronic pain;
to take back your name and personhood status;
to reclaim your identities not as sick people with invisible illness but as persons who deserve and demand a seat at the healthcare decision and policy table;
to organize pain patients into a national registry;
to create state organizations and challenge existing institutions;
to arm individuals with a single unifying message across efforts;
to create educational programs that educate other consumers and their families;
to create educational programs that educate the community;
to get involved in drafting our own legislation and responding to rules that affect us;
to run our own reform candidates;
to put people on notice that there will be no decisions about persons with chronic pain that are made without people who have chronic pain at the table;
to question the validity of the status quo;
to support the efforts of those who can on behalf of those who cannot;
to assign your proxy to someone who has your back on days when it’s just too much;
to become knowledgeable about what is working and what is not working;
to regularly communicate with your local leaders;

People with chronic pain are not commodities that can be bought and sold for the benefit of providers.
You have the right to receive adequate and safe health care.
Nobody has the right to experiment on you.

If you can only do one thing, it is to come out of the shadows of invisible illness.
Make your needs known;
Collaborate in research efforts so that your needs can be identified, properly characterized and counted;
Define what matters to you.
John a consumer network that is engaged in advocacy.
Become informed about what affects you.

Is it hard?
You bet it is.

Is it worth doing?

Can you do it?
You can do anything you want to do.

We make the change we want to see.
Nothing about us without us.

Yes indeed, it is time to do something now like last year. I’m in and our of the ER and they are not doing anything except for looking at me like a fu!#$*^ drug addict. It is not my fault that I suffer from severe chronic pancreatic pain that also follow with pancreatic stones as well. I had my spleen totally removed along with a partial pancreatomy as well. Now I belong to live support group and I am a very good part of the organization and condition and founders Robin and Adam are a special part of me. They can understand why the pain Nation is really filled with all types of chronic debilitating disorders all ov e the world. I’m filing law suit after lawsuit against doctors and whoever else crosses my path because I really hurt too damn bad to have an as”:;,#!&* TELL ME HOW TO FEEL.

Savannah Granahan

What Barbara said!

Barbara Bavier
April 18, 2016 at 7:37 am
I agree 100%. I think part of the problem is, ppl with chronic pain are so fully preoccupied with the pain — dealing with it, doctors, medications, medical issues, paperwork, and honestly, just having enough energy to get through the day — that there’s nothing left. Personally, I barely have energy to take care of myself and my husband, let alone participate in a movement.

Also, I already know that I may have to cancel any one activity that I’ve agreed to attend. I don’t think it’s fair to commit myself to an agenda involving millions of others because I may not be able to follow through.

What we REALLY need are some healthy ppl who understand the issues to step up and help.

Rose Bigham

That’s great advice .. . where, exactly, is the most effective arena in which to point our unified voices? I know hundreds maybe thousands of people in legitimate, chronic, incurable pain and we all are willing to make our voices heard . . . but where? State level? Federal level? Elected official or the CDC or the supreme court? Can someone tell me what it will take for the media to hear us LOUDER than they hear all of the hype about the ‘epidemic’ (it isn’t, not by the numbers) of overuse? Argh!

Kathy Cooper

We are fighting a Medical Industry Misinformation Campaign, that happens to dovetail with the Agenda of the “War on Drugs.” They even wanted to remove pain from the treatment of any patients. The ramifications of that are pretty dangerous, yet it is one more attempt by the Industry to avoid Liability, mostly in the treatment of any patients they deem unworthy. We live in dangerous times, people who speak up are already labeled. The general public attitude has been shaped. The Corporate Media left out the Pain Patients, and the necessity of any pain treatment, while terrifying the public with pictures of Drugs, violence and even Syringes. The misinformation even included Doctors who treat legitimate pain as Drug pushers. They justified this with stories of people with Chronic Pain who ended their lives, the suicides. They do not mention their pain and medical issues that led to the despair, and the lack of options that led to suicide. They did not even collect the Data. There were no reporting requirements, so in many cases Autopsies were not done. Anyone who died with any opiates their blood was just another drug addict. They did not even mention which Opiate contributed to their deaths. The Inflammatory “New Articles” did not inform the public, they only repeated the current Propaganda. The Story line that Prescription drugs led to Heroin Addiction. In this way they could appear to be criticizing Big Pharma, doing a public service. In reality Big Pharma was behind this campaign. The Drugs they will replace the Standard Generic Opiates with are much more expensive. These Drugs have never been proven to be anywhere near as effective as opiates, but they Marketed them for Pain Conditions. The incessant and repeated Pharmaceutical Advertisement had multiple objectives, other than Marketing the Drug mentioned. They were directed to increase the public perception of positive Drug Companies, and lead to the public to believe, there was “progress” in Pharmaceutical research if not a “cure.” for some conditions. They were also manipulating public opinion to allow these companies to continue to raise prices and justify the exorbitant amount that Americans spend on not only Prescription Drugs, but health Care. The Numbers as Statistics don’t lie. The failure of anyone to grasp why we have the most expensive Healthcare in the world, while people die every day because they don’t have access to real health care, should be obvious. The Corporate Media used the Advertising Strategy of misdirection. The message left out any mention of people with chronic pain. Only exaggerating the negatives, they only tell one side of the Story, and after repeating this for Years, and using fear, and other negative emotions this becomes the “fact”. We have Physicians who act as corporate mouthpieces, their bias is obvious, but people don’t care. Even the Regulatory Agencies have been infiltrated by Industry people, or people who expect a job in the Industry if they play along. The misinformation even included Doctors who treat legitimate pain as… Read more »


I signed up to be an advocate and I just recently got an email for a couple of projects that are going on. one had to do with lights the other i think was promoting pain care in Sept. I’m sorry I don’t think either of these things will be effective for years. I can’t help with projects like that. A visit to the dr cost me 2 to 3 days in bed and not being able to do any of my housework. not that i have much housework anymore it’s a small apartment but I still can’t do anything for 2 or 3 days after a dr apt., or after I get groceries, or after anything that requires me to actually get dressed and leave the house.
It’s always great to hear what is on your mind Terri.


I agree with Terri and would just like to say that I have been saying that very same thing in every Facebook page that I’ve belonged to over the last year and a half. The fact that there are so many different petitions and Facebook pages out there with everyone wanting results but only complaining is frustrating. I’ve been posting the link to the US Pain Foundation on all of them in an attempt to unite the masses. It’s time.

Here is a link to eliminate the CDC opioid guidelines- I have signed it.
I believe people in pain can and should have more freedom over deciding their care- without interference from providers, insurance, and government. It is clear that our institutions have been selfish and narcissistic in trying to control and profit off pain care-without real regard for what people in pain want-despite claiming it is for the good of people in pain. Even now- folks like Dr Darnall wishes to control our experience by labeling it as “catastrophizing”-without our advice or consent-and we might have a long march through our institutions to gain more control over pain care.
In addition, it is clear that our institutions- despite having enormous control over pain care-and despite receiving trillions of dollars of our tax dollars and insurance monies have performed terribly- with inadequate treatment, assessment, prevention How dare they claim a right to dictate to us- when they have been so careless and slovenly over pain-when they continue to show us they don’t even wish to have a respectable dialogue about our care.
It is time to take back pain care- it is not governments pain or the health care industry’s pain or insurers pain- it is the pain of individuals. Lets demand real control over pain care-and ensure they will not continue their careless inattention to a condition that is too often life ruining. Let us call for a real voice and real control with insurers, with government and the health care industry. When they wish to denigrate us with pejorative terms like “catastrophizers”- let us demand they eliminate such degrading terms. Let us have strict penalties for any disrespect or denials from insurers or providers. Let us have egalitarian representation in all government committees that deal with pain. And let us not wait any longer for our clueless and careless institutions to get it right some day- for that day doesn’t look like it will ever come.

sharon anthony

So, where do I sign onto a one voice? I am more than willing, I am desperate. I have been having pain that has done nothing but gotten worse for almost 10 years!! The first pain medication I was given was horrid. I hated it, I refused to take it cuz it made me feel awful. Finally, after lectures from my pain doctor, I started taking it as ordered. Yep, stopped the pain, but everyday I woke up in a sweat, knowing about 45 min after I took it, that would go away. I went to a rehab center to get off it. Not knowing my pain doc could have done the same thing. The psych there, omg, he told me I am a drug addict! He asked how do I take it? Ummm by mouth? Didn’t know then about physical dependence.
Long story little shorter, why isn’t there more research into non-opiate ways of pain relief that actually works? I mean this is 2016. Poppies have been growing for how long?
I’ve tried three neuro docs for an implant, they give me injections, that I tell them before hand, do not help, but they say they have to do that first. Like I am wealthy and can keep getting treatments that do not help.

Barbara Bavier

I agree 100%. I think part of the problem is, ppl with chronic pain are so fully preoccupied with the pain — dealing with it, doctors, medications, medical issues, paperwork, and honestly, just having enough energy to get through the day — that there’s nothing left. Personally, I barely have energy to take care of myself and my husband, let alone participate in a movement.

Also, I already know that I may have to cancel any one activity that I’ve agreed to attend. I don’t think it’s fair to commit myself to an agenda involving millions of others because I may not be able to follow through.

What we REALLY need are some healthy ppl who understand the issues to step up and help.

Jean Price

Yes, we do want to make a statement…and we want to orchestrate change and bring common sense back to health care, especially where the treatment of pain and chronic pain is concerned. And Terri has a good point about combining our voices. Hopefully this also means combining the voices of our advocacy groups too. I’m a little confused as to why she thought we didn’t want to hear this, since many have expressed this same opinion through the months I’ve been viewing this site. And many have been very aware that talking amongst ourselves isn’t doing anything except possibly raising our frustration levels and occasionally allowing us to give and receive the support which comes from knowing you’re not alone. We’re ready, and willing, and semi-able! The form this uprising takes will be very important and many good ideas have been offered up. Change usually happens more readily when people work together for a common goal. So clearly outlining our goals will also be important, as will some means to assess the impact and be able to add avenues to persue or change direction as needed. Many things to keep in mind for those who light the fuse on this effort, and many areas of pain care to address. I previously talked about a Facebook post about a movement sponsored by Orexo, a pharmaceutical company that has a naloxone type medication. The post is titled “Out the Monster” and addresses what they term”accidental addiction”, which I believe is their idea of the biological chemical changes that happen with long term use of opioids! Not addiction at all, in my opinion. I have almost 1000 responses to my comment I made holding up the plight of those which chronic pain and a third of those are people who have also been negatively impacted by the current trend to stop allowing opioids. The interest and need is out there, and growing. The issue will hinge on who leads this movement and how well they work with all who support these changes. I’m praying this will happen soon and utilize some new approaches to getting our major issues out there and getting the general public more involved as change happens. We stand ready to do our part to support coherent, results oriented processes to accomplish something important to both now and the future. We need a heighten campaign and cohesive efforts from all the advocacy groups. And we must be able to address all the absurdities in pain care and find out the true goals of these changes we are experiencing….and keep them TOTALLY separate from addiction issues in EVERY WAY, Including funding for our uprising!