Chronic Pain Community Reacts to Challenge

Chronic Pain Community Reacts to Challenge

By Ed Coghlan.

When our interview with Dr. Terri Lewis was published last week, it caused a swift and yet varied reaction from many of our readers.

Dr. Lewis, who has been a consistently clear and strong voice for the chronic pain patient and who has argued vociferously against the crackdown on opioid prescriptions, called on the chronic pain community to work harder to make change.

“This is hard work.  Get on the train or get out of the way,” she told the National Pain Report. “Get involved or accept the results without complaint.  I am perfectly willing to tell folks exactly what none of us want to hear.  The world is changing and we have to change with it.”

“We have the tools to do this.  Engaged patients can make a difference.  Those who think it is too hard or who refuse to get involved will get left behind the door in their communities – and their communities will function more poorly for it.  It is as simple as that.”

Dr. Lewis also believes the chronic pain community—both patients and providers—are ready to act.

“I expect to see practitioners and consumers come together in the same space to build on the demand for a system of care that is accessible, helps, and reduces harms,” she said.

The interview set off a reaction that ranged from supportive of her call for activism to critical of her for asking people to do more.

Said April Dawn, “If I am not even able to get out of bed, or barely able to eat and go to the bathroom. It is completely unrealistic to expect someone like me to get out there and fight for anything. It was a strangely unfeeling statement that showed an extreme lack of awareness of the reality of my everyday life – and those like me.”

For critics like April Dawn there was an equal number of supporters like Andrea Anderson who wrote,

“Terri, You are fabulous! What a well-written, important letter to us all. We have spent way too much time dealing with people both within our own population and from outside, and we’ve been playing defense the whole time. It’s time for us to take a those who beleaguer us from outside. We all need to take bigger role in obtaining and maintaining legitimate treatment options. You have our support, both individually and through ATIP, and I hope we can work together more closely as the new year begins. You have an important platform and you are using it tirelessly. I hope we can support you more and find more outlets for your very important voice. Thank you for all you do.”

To read the story and the commentary click here.

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Authored by: Ed Coghlan

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31 Comments on "Chronic Pain Community Reacts to Challenge"

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It’s time for a television debate!
KOLODNEY and ballentyne
Vs Lewis and TENNENT
60 minutes should do it. It’s about time thos SOCIETY realizes there are 2 definitive sides to opioids.
THE needs for chronic pain in order for life quality and the need for addiction rehabilitation.
Mainly AMERICA MUST know heroin and illegal fentanyl are the problem not pain relievers
THATS been controlled for years
Less then 8% of fatal overdoses contain prescription pain relievers



Join our WHITE COAT PROTEST RALLY AT THE DOJ, Tuesday, April 23, 2018, 11:00am -2:00pm, Washington, DC.

Contact your two U.S. Senators (, 202-224-3121) and U.S. Congressman (, 202-224-3121), through their health issues staff representative, about participating in our Congressional Briefing on Chronic Pain, 12:00noon to 2:00pm, Wednesday, April 25, 2018, at the U.S. Capitol Building, Washington, DC.

Join out “America’s In Pain!” – MARCH ON WASHINGTON – “Silent No More!”, at the U.S. Capitol Reflecting Pool, Thursday, April 26, 2018, Washinhton, DC.

All 435 members of the U.S. House of Representatives and 1/3 of the U.S. Senate are up for re-election in 2018.

Many members of local state legislatures (your state senators and state representatives), Governors and Lt. Governors are up for re-election in 2018.

Check all of their voting records on chronic pain treatment issues, especially concerning the persecution of compassionate physicians who treat chronic pain patients who are opioid non-abusers by the DOJ, DEA, law enforcement, the criminal justice system and state medical boards, and support those candidates and incumbents who are pro-chronic pain treatment in their platforms.



I feel for you Beth I truly do,
Sadly, you are probably in an even worse situation than I am.
I was on both oral and intrathecal opiates and my coward of a pain management doctor told me that it was illegal for him to prescribe both oral opiates and intrathecal opiates for me at the same time – it isn’t – and that he wouldn’t risk this license for me – although he will happily risk my life.
When he cut me off cold from a significant daily amount of oral opiates with no weaning, no nothing, even though I was within the CDC guidelines, I said what the hey? His response: tell you what, we’re just gonna dismiss you from the practice.
So now they are forcing me to come in to have delivery rate in my pain pump reduced, reducing the amount of intrathecal opiates I am getting until it’s down to zero, they are also very graciously now going to allow me some oral opiates for weaning purposes to help with the withdrawals from the intrathecal opiates – I have never been so sick in my life.
My pain has for years been significantly, critically under-managed, something that I politely but pointedly advised them of on a monthly basis.
When I spoke up about having my oral meds cut off cold effectively cutting my pain medication in half the response as I said was to kick me out of the practice and within about a month I will have no pain medication whatsoever.
Forgive me if I seem to be rambling somewhat incoherently but pain does terrible things to a person’s ability concentrate.
The over-arching question bouncing around in my head right now is: how long will my body be able to function with unrelenting and unindurable pain before I experience a catastrophic system failure in the form of a heart attack or a stroke?
The human body does not have an unlimited ability to cope with unlimited pain for an unlimited period of time, sooner or later something has to give.
I will not give the cowards my pain management doctors or the cowards at the CDC the satisfaction of doing my self harm. I will wait and let the pain kill me and I will call it negligent homicide by virtue of depraved indifference at the hands of the CDC and my pain management doctors.
There is any justice in the world somebody will end up in prison for the rest of their life.
You were oh so right when you talked about the powers that be having to live in our shoes. I wouldn’t give these clowns a week before they were writing prescriptions for themselves for the very medications they have denied persons like you and I. Medications that people like you I literally need to keep ourselves alive.

This is an opiate phobic nightmare that I hoped I would never live just 🗼. I can’t help but wonder if the government is trying to get rid of the expensive cost of caring for the elderly and disabled hoping that we will commit suicide. Let’s not give them the satisfaction…Let’s fight back!

I’ll do anything that will give pain patients a chance! I’ve thought for years that if we could just get together we could persuade the government that our needs are real. I’d like to see DEA agents and government officials along with the pharmacist and docs that are jumping ship cope with intractable pain; and central pain for just a few hours then we’d see some changes!!!! I’ll get off my death bed to help.

I’ve just lost all my meds because I can’t find a pharmacy to fill my scripts. I want to sue optima rx for holding scripts for 6 weeks telling me twice that my meds are on the way. Then deciding I live to far from my doc after extorting paperwork and his time and causing me to be completely out of meds and in suicidal pain while waiting. Sign me up I’ll come iff not I’ll do whatever I can do…it’s life or death now.

We have filed a complaint to our State Congressman as well as exhausting the Appeal process with our insurance company. Our Congressman did respond, however, claimed she could not intercede/interfere with the the insurance agency. Do you truly feel that anyone in our State, Local, and Federal government are sincerely interested in hearing individual cases, when the official stance of our Government is to crackdown on Opiate use, period??

My wife was diagnosed with Behcet Syndrome in 1986 and consequent to this has lost the majority of her colon. She suffers from chronic pain, nausea, and blisters due to this disease. Her Pain Specialist has had her on Fentanyl patches as well as Fentanyl lollipops for breakthrough pain since 1987. Recently our insurance refused to pay for her lollipops claiming that she was not diagnosed with cancer and therefore was not eligible to receive them. WHY, after all of these years especially when it was providing her with some quality of life?? Sadly, I am watching my wife, of 34 years, deteriorate right before my very eyes. Other pain medications do not provide her with the pain relief she once maintained. Is there any hope for the near future? It is not my wife’s fault that this type of pain regimine has been abused and mishandled by physicians who did not have the training or expertise to manage their patients in terms of appropriate pain management. Thank you!

PS. Dr. Lawhern, God love you. We are thinking alike in terms of news coverage. But what have you learned in your long life that would lead you to believe that a legislator would refuse ANY financial contribution from anyone. Politics being what they are today.

Just posted a comment on Dr. Lewis’s article then saw this discussion. Briefly, I agreed with the Dr.’s message but not her presentation. I expressed the opinion that in our media driven society, I believe we need an investigative reporter to bring our cause to the attention of the public. If you read my post and have ideas to help drive the train in this direction, I would be so interested in hearing your views.

Okay, folks, let’s all take a deep breath, please? I understand both the points that Terri Lewis is making, and the concerns expressed by largely disabled patients. I’ve been talking with people in pain for over 20 years about these concerns. May I suggest a meeting place for the two points of view?

Many patients feel (and truly are) so disabled that they cannot do very much to advance the cause of sanity in the treatment of others like themselves. However…. If you can write a letter of complaint to National Pain Report, then you can write a letter of complaint to your Congressional Representative. Or you can look up a phone number of your local newspaper editor or television news anchor, and place a call. Invite him or her to send a reporter to your home, to see “the human face of pain” and “the other side of opioids”, before writing a story about people like you.

Likewise, where are your more able-bodied caregivers? Have they read this article? If not, then why not? Anybody who can walk, chew gum, and drive to your State Capitol can schedule a half-hour appointment with the healthcare legislative assistants of your Governor or State Assembly person. I and others in the Alliance for the Treatment of Intractable Pain can back you up with briefing papers or a phone call to rehearse what you may wish to say.

I know that chronic pain patients have it tough. My wife and daughter are pain patients, so I face this issue every day. But I also know that Terri is very largely correct in her insight: if patients themselves and those who love them don’t require change from our legislators, then nothing will change. And letter writing by itself isn’t enough to bring that change about. Some of us must go in person to demand that our legislators grow a backbone and start refusing campaign contributions from Insurance companies and the owners of addiction recovery centers.

I have been trying to get pain patients to rally together for YEARS, yet they have been few & far apart. I too, suffer greatly & have days when I can’t get out of bed; but have found that I MUST try to “suck it up” as this is a fight for my life!!
I realize that not everyone can “suck it up” but, that does not mean that they cannot not be a VERY valuable soldier in this fight! If you are able to get online & comment; then you can write letters & help spread the word & educate as many as possible!
I know many of you have written letters & not gotten much response, however this is due to the fact that not enough are being written as we must FLOOD them until they can no longer ignore us!
I tried to get people to write to alt. news secular talk & along w/ the fact that I wrote him several times also; he has now started doing stories that show our side & suffering! So it does work, if we ALL work together!!

I think Dr Lewis is right. I have seen many people who can do something but instead are waiting for others. People in USA can file a Civil Right Violation with DOJ using American With Disabilities Act because Informed Consent is not being applied. Patients are entitled to have all reasonable options for treatment presented to them. They are entitled to know all benefits and risks of treatment proposed and benefits and risks of alternative treatment options. To deny this because one suffers from Chronic Pain is a discriminatory practice. If the complaint is thrown out at least a person tried. People who can fight need to be proactive. We have yet to see one filed though many people claim to be discriminated against. In Canada one must file with Human Rights Commission in their Province. Use Facebook and Twitter-Communication is important

Get on the train or get out of the way. Well thats all well & good for some of us that can. But what about the ones that cant???? I am a chronic pain patient. Ive seen just about every specialist and doctor there is asking for help and or to point me in the direction. The only doc that did try and stand beside me jst informed me this past December that he can no longer help any of his patients anymore. That he will be gettn into sleep medicine only. Just like my neuro, most of the docs ive seen are terrified to even write a script for cholestrol meds muchless prednisone. Just like every other chronic pain patient, Ive spent a ton of money lookn for answers & direction. And as for writing our politicians & gettn anyone to back us up or even support us seems as though its going no where. Im for anyone gettn relief, help or whatever it takes but it seems as though physicians, pharmacists are running for the hills due to rogue ass DEA agents & govt. So now what? Are we supposed to eat more greens cram more vitamins down are throats to pacify the a-hole govt?? Im really at a loss on what to do or where to turn. Its obvious our local politicians dont seem to care. But watch the suicide rate quadriple in no time. But im guessn the govt & media will blame that on opiates as well. My inlaws are in there 70’s and they do not believe my husband & I about what is happening to chronic pain patients and our Veterans. Funny thing is my father n law is a Veteran. He claims we should stop watchn all these news channels and stick to Fox News. I told him yet again we dont watch cable tv & watchn the news 24/7 is whats wrong with him. I guess its really true what they say about ignorance being bliss. Sorry for the rant

The CDC is killing me

I have been reading these posts from the people above and I feel for them because I am in the same boat and let me just say it right straight out:
We, chronic pain sufferers, as a group are getting literally and deliberately [edit] on because that is the easiest way to deal with us.
Our government, whether it is federal or state literally does not give a flying [edit] about us.
Our government would much rather have us crawl into a hole and effing die, because then were no longer a problem.
Far easier, and less expensive, to kill us with neglect than to take care of us – even if we have insurance which generally isn’t worth anything when you get down to it.
It’s a shame that we cannot share our afflictions with our so-called leaders and government representatives, because were they suffering the torments of hell that we are, and could only have access to the exact same level and kind of treatment that we in the general public get, they would change the rules in a heartbeat because none of them have the heart or the courage to live with the kind of pain that we have been living with, some of us for years.
We need to change the rules on our so-called leaders: they are allowed nothing in the way of medical care, treatment or insurance benefits that we the citizens of this country do not have access to.
No insurance for us, no insurance for our government representatives.
No narcotic painkillers for us, no narcotic painkillers for our government representatives.
Only third rate medical care for us, only third rate medical care for our government representatives.
It is long past time that the American public started doing unto our government representatives as they have been doing unto us for years: bending us over [edit] and then telling us you’re welcome.
Pardon the profanity but sometimes a a few words of profanity can say more than entire paragraphs.

The CDC is killing me
I had been a patient at my pain management doctor for almost 7 1/2 years when I was told that the pain management regimen that I had been on at my doctor’s recommendation for well over three years was suddenly going to be terminated. That I had the choice between staying on either oral opiates or intrathecal opiates but I could no longer have both. When I selected intrathecal opiates they cut me off dead from the oral opiates. No tapering, no weaning, no period of adjustment to allow them to increase my intrathecal opiates to compensate for the lack of oral opiates. I was just cut off dead, spent Christmas Eve and Christmas in such heavy narcotic withdrawal I was practically comatose . When I stood up for myself I was kicked out of the practice quicker than you can say Jack rabbit. My doctor flat told me he would not risk his license for me and that it was illegal for him to continue prescribing oral opiates while giving me intrathecal opiates. The funny thing is when talking to his physician’s assistant I am told that this is not being unilaterally applied, only selectively applied which is the very definition of discrimination. Besides which the physician’s assistant and I had already come to an agreement that while my intrathecal opiate dosage was slowly being increased there would be a commensurate decrease in my oral opiates and tell my intrathecal opiate level was high enough to be doing the job by itself at which time I would be off the oral opiates completely and that was all finding good until I talk to the doctor. The owner was so brave Doctor Who look me in the face and essentially said too f**king bad for you suck it up or get out of my practice. My doctors are using the CDC guidelines to effectively kill me. Let me repeat that: my doctors are using the CDC guidelines to kill me. They don’t want me in their practice: I am a work comp patient, they don’t know how to really deal with the problem and they don’t want to do the hard work that it is going take to find a solution. It’s just easier to kick me out the door by characterizing me as a troublemaker and a malcontent. Two months ago none of this was even an issue and now all of a sudden the pain management protocol that I have been on for more than three years as recommended by my pain management doctors is suddenly has to come to a screeching halt, even though it was within the CDC guidelines. Yes, I stood up for myself, I spoke up for myself, and found myself kicked to the curb, now with neither oral opiates nor intrathecal opiates, no pain medication whatsoever. I have a severe case of RSD/CRPS that causes me absolutely excruciating, literally crippling pain, and that was with the dual narcotic pain management regimen. I expect… Read more »

Would some benevolent soul please create a template letter for those in pain who can’t sit, type, think decent or put together words to create a decent letter? Can you include how to find contact information on where to submit our letter.

It would be wonderful to help affect change in a world where our voices are rarely heard. We must suffer the consequences of this crazy hoax they call an opiate crisis; reducing our long-used meds to levels where we must now live in bed, barely moving to mitigate our pain. This is not life.

Please help by helping us help ourself and the chronic pain community.

I read Dr Terry’s letter last week. I really didn’t get it, she’s talking about getting with the changes,(store changes, state rules, getting off of pain meds?) those changes? I have been fighting this as much as possible. I don’t see any Doctors, or authorities fighting for us pain sufferers, like Dr Terry, or like she did anyway. The more and more I hear in the news is heroin abuse and oDs, what does this have to do with pain patients? I am sick a lot, I don’t feel like there is enough pain meds in me. Dose has not been changed in 7 years and then it was decreased.

No doubt it has been a great convenience to legislators to neglect people in pain for so long. It has also been profitable to researchers and practitioners to not get pain care right.
Pain care has been terribly wrong for so long and people in pain have been expected to accept poor pain care regardless of how it has hurt their lives.
Now is the time that tests people in pain politically and morally. Some people in pain are doing quite admirably to call for change in pain care. But too many remain victims of our poor politics and of their own political passivity.
Demonstrations and protests r needed and any effort counts.
Its not just what u do that matters but the spirit behind it.
I know this year more people in pain will make an effort to change pain care.
Lets learn from the mistakes of our careless government and passive providers.
Lets create a new vision for all in pain based on new rights and more unity in the pain community.
As Helen Keller wrote there are many forms of suffering and many ways to overcome them.

I live in SW FL and it seems as though I spend more time driving around (when I’m in excruciating pain) to find a pharmacy that will fill my script. It’s absolutely ludicrous!
Last month I drove to Publix, where I get ALL of my meds filled because they say to stick to ONE pharmacy but they claim to never have enough or they are expecting an order in any day, which is a week! Or they tell me to try another Publix. I went to about 7 of them and finally the one 45 minutes from me asked if I’d ever filled my pain medication there. I said no and the I’ve only recently moved to this area and the pharmacist said she can’t fill it. I started asking why and she was abusive and loud and yelled at me and said “ma’am! I am NOT going to fill this so go back to your original Publix because all pharmacies are different and because I’ve never filled this for you, if I did fill it, it’d make my supply low for my existing customers”.
I was tired, in pain and now in tears! It’s almost like now a script means nothing! Why pay to see your physician for a pharmacist to undermine them? I was truly so embarrassed and just felt like I’m at the end of my rope! You feel helpless and even if you felt you needed alternative meds to get off the opioids they are pricey and now you’re entering into a whole other problem.
Who REALLY has control here? Maybe we should put limits on nicotine and caffeine too, seriously.

Obviously, the author needs to qualify their statements. I would say the vast majority of pain patients at least that are in severe pain can hardly get out of bed much less get on a train. I have written my Representatives and have gotten only form letters back that mean nothing. We are simply collateral damage to them if they notice us at all. In many respects the article is discouraging to the person who feels like they don’t matter and Society is just waiting for them to die. I’m reminded of Europe In The Heat Of Summer where they just let they’re old and sick people expire. Disgraceful

Chickens will find the weakest chicken in the coop and pick at it and pick at it until it dies. It’s the animal kingdom getting rid of the weakest. It’s no different than what is going on in our school systems today with all the bullying. It is the same thing that is going on in the chronic pain world today. It is sad that we (humans) have all be reduced to chickens or never evolved past chickens.

Some of us have concerns with the article and I decided to take time this morning to provide feedback: What’s the old saying from Theodore Roosevelt? “It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better.” Quite frankly, some of us have been hit by the train, run over by the train and left for dead. Sometimes it’s a good thing for pain patients to pull themselves off the tracks, think about the cost of spending limited energy on activities that enable us to survive — then fight the good fight as compromised health and pain conditions will allow. Shaming or adding guilt often turns people in the opposite direction. Many of us have been fighting long before the CDC guidelines were issued. We’ve been taking on risks of ESI harms, Big Pharma and Medical Device Manufacturers for several years now. Added stress from advocacy takes a toll as our diseases are often progressive. As you know, we’ve entered a new era where the hospitals, surgical centers, interventional pain physicians, PROPs, Kolodnys, Ballantynes, Sullivans, Munzings, and numerous political and medical professional organizations have convinced the public that pain patients are addicts and suffer from “opioid use disorder”. For starters, many patients fear the DEA or they fear going public for being called an “addict” — or worse, they fear a home break-in when they go public with this issue. More important, pain patients fear that they will lose their last option for pain control, or they’re fighting for their rightful entitlements (Work Comp or SSDI benefits). More importantly, patients want to feel that the movement is inclusive and worth their limited time. Advocacy is really about finding people of integrity who will cover their team member’s back side if/when they falter, and work through inevitable miscommunications and misunderstandings as we continue striving to work together in a concerted effort to achieve a worthy goal. After all, conflict and miscommunications are a normal, everyday occurrence, and social media forums are notorious for ramping up conflict. Often, social media forums are not the best forum in which to organize complex movements. I’m not sure where this train is going and there are many leaders trying to organize a movement in this chaos. There are a few organizations with courageous pain patients taking on the world, but from what I see, there are too many pain groups and advocates with self-promoting agendas that have only added to our increased anxiety and stress. Regardless, many of us have been working behind the scenes, writing letters, organizing, fighting back, since before the CDC announced its intentions, and I hope you will acknowledge some of these efforts. On a personal note: if it were not for Dr. Forest Tennant’s protocol for adhesive arachnoiditis, I would not be able to continue to work, which leaves limited time for advocacy and often only adds to stress and, often, increased… Read more »

while there is claimed to be 100+ million chronic painers… I believe that in reality there are some 20 -30 million who are opiate dependent… the intensity of their pain requires 24/7 dosing. Some/many of the rest are able to get by with NSAIDs or “as needed” opiate besides the NSAID. They are the ones who should be leading the charge.. but.. they are probably failing to realize that as they age.. between deterioration/progression of their health issues and aging itself is going to move them up the ladder to having a need for increase opiate use. until they will be a 24/7 opiate dependent pt.
Behind every new and crazy opiate restriction, you will probably find a politician/bureaucrat who knows someone – or a friend of someone – who has OD’d..
It is unlikely that you will see these same bureaucrats… feeling sorry for someone who has died because they smoked most of their life or someone who dies of liver failure from drinking too much. Could that be because there is a state/federal tax revenue stream on those products.
It is claimed that the legal opiate prescription market is abt 10 billion/yr whereas the illegal substance abuse market is valued at 100 billion..
Gambling was illegal is most states, until the bureaucrats discovered how much money could be gained from taxing it… and now many states have multiple casinos and lotto games
The bureaucrats are going have a 10 billion/yr market – trying to reduce it… while ignoring a 100 billion market that could be legalized and TAXED… plus once legalized and decriminalized… we could say BYE-BYE to the DEA … and it 81 billion/yr war on drugs

I am a Chronic Pain Patient and I am homebound. Recently, I decided there must be something I can do. So, I grabbed my laptop and started emailing government officials to help Chronic Pain Patients, Doctors and Pharmacist who support us. I also had my husband buy poster boards so I can write something that will bring the attention to the injustice of treatment to Chronic Pain Patients, Doctors and Pharmacist and our posting them throughout our city. Also, i believe we should start a Petition demanding that the CDC, Justice Department and other entities separate Patients, Doctors & Pharmacist from being treated as criminals. If, a criminal investigation has begun against a person or persons then that is different but we all our Innocent until proven guilty and to take down Innocent people is against everything our Country stands for. Every month we should stand at City Hall or our Capitol in each State and take a peaceful stance and again signs seem to do the trick. There are some of us who are to ill to do this but we can have our love ones stand for us. I know that this is just a few small ideas but that’s how change begins!

“The only thing worse than being disabled and in pain is being isolated and marginalized, on top of everything else.”

Dr. Schulman, I so agree– and thank you for your kind and beautifully written comment, all of it. That “get on the train or get out of the way” is so disheartening to hear and harmful to the human spirit. Chronic pain patients too often hear that kind of “advice” from the people closest to them– spouses, parents, adult children, best friends, employers. And once is too often.

This community is suffering horribly, in so many ways now– some to the point of suicide. I’m a counseling psychologist, but it doesn’t take a graduate degree, or it shouldn’t, for all fellow human beings to know that the life instinct is powerful, even under the most dire circumstances. When a person who does NOT want to die is forced to end his/her life because of unrelenting pain that HAS been treated successfully for years and still CAN be… This is dangling fresh red meat in front of a starving animal– the height of cruelty. I am shocked and despairing over what’s happening.

I pray some measure of sanity in this nation is restored in 2018. I have never wished or prayed for anything more desperately. Thank you again, Dr. Schulman. God bless and keep all of us.

Laura P. Schulman, M.D.

Ms. April Dawn expresses a concern that I had when reading the original piece, but was unable to articulate at the time. I share her concern that the Dr. Lewis’s “lead, follow, or get the hell out of the way” stance neglects the most vulnerable among us: those who are too disabled to “get out there and DO something.”

The greatness of any society is in large part defined by its altruism. What this means for us, as sufferers of pain and those who care for us, is that we must be willing to advocate not only for ourselves as individuals, but also on the part of those who cannot “get out there.”

The only thing worse than being disabled and in pain is being isolated and marginalized, on top of everything else.

Let’s start 2018 by remembering that our abilities are a blessing, and let’s use those abilities to help all of our sisters and brothers who suffer in pain. Rather than leave them “behind the door,” alone and suffering and marginalized and even judged for not being able to “get out there,” let’s rally around them to relieve their suffering….as well as our own.

Blah , Blah !!!….. Sll I hear is talk !!!!!!
Where is this train ? Does it stop for just anyone ?
All in favor of starting a cooperative opium poppy farm: building a hemp green house;;
And cease sensuring Contributors for even mentioning a non-opioid like Ketamine and maybe something real might happen at this site !!

I’m not sure I really understand how a doctor, who in their oath (hypocritical I presume?), can really in good conscience, do their patients harm by lack of treatment, especially when the treatments prior to said refusal to prescribe further opioids have been used?
Number one, doctors do not need to follow these new laws if it causes harm to their patient, and they can prove it.
Number two, patients can sue, or otherwise file a grievance against that doctor for lack of treatment if their treatment has been with opioids prior to refusal of further prescriptions.
Number three, and this is a very hard thing to hear and even a harder thing to accomplish: you can lower your dosage of opioids quite considerably.
Number four, stockpile meds at all costs, always! There will come a time when you will be glad you did.
Number five, if your doctor is that scared about prescribing you opioids, get another doctor. No matter how much you think you know your doctor, there’s something you don’t want to know about them too. They’re doing some-thing wrong or they wouldn’t be afraid of the law. There is no law against prescribing medicine for patients; even opioids. You’ll see.

I want to get involved because I am in severe chronic pain and have followed all of the pain Dr rules. My Dr is compassionate at times (mainly when we meet face to face) but other times he treats me like an addict and that I want the pain meds to get a high!
I post comments about the pain that the “war on Opioids” has caused me. At times I want to die.
But NO ONE ever is willing to speak out on my behalf because in our affluent community.
I guess no one has chronic pain or used opioids prescribed by a doctor in all of Grand Rapids, Michigan.
Clearly it is a blot on your reputation if you admit that you are against the insane “war on opioids”! If you admit this, you are a “druggie”.
Seriously no one will support those of us in chronic pain for fear of being labeled as an addict!
What can I do?? I want to help since I cannot go on like this much longer!
Thank you for your very coherent article! Thank you for fighting for those of us who are suffering!

Pain patients,when presented with a request to sign a physician care contract ought to present a copy of the patients bill of rights, the us constitution, acopy of the Hippocratic oath. All these regulations to protect us were hard fought to be included into law and they are all being routinely violated. We must demand they be enforced. This paperwork should be presented to pharmacists who are illegally engaging in patient profiling and breaking hipa rules. This must be brought to ER rooms when they are triaging us out of emergency care. Our section of society is institutionally discriminated against and it is time we learn our rights and stand for them within the medical industrial complex which we have been forced into through illness.
There is a common sayin- ‘ you have nothing if you don’t have your health”. We can’t make this the reality

As a pain patient affected by this nightmare like so many, I too cannot get out. Going to the bathroom is a tremendous effort and drain on what little energy I may have. But…it hasn’t stopped me from writing my elected officials (not that they even read the letters) along with writing to any other org I can think of, and I am not going to stop either. I comment on possible changes that come thru the federal register. I share my plight with family/friends who are probably sick of hearing my story. I warn tthem that what has happened to us will affect them sooner than later. There are others in the pain community that would certainly help someone with writing a letter. We must speak up and out or like the good doctor says accept the consequences.