Online Chronic Pain Group Targets CDC Guidelines

Online Chronic Pain Group Targets CDC Guidelines

By Ed Coghlan.

A group has formed online to fight the CDC Guidelines on Opioid Prescribing.

The Pain Advocacy Coalition launched on January 1st with the goal of crowd sourcing an effort to mobilize the chronic pain community.

Here’s the website.

“This lets people advocate from our homes and our beds,” said Duane Pool, an Austin, Texas woman who was a registered nurse who was injured and became a pain patient.

One of her partners in the coalition is Ken Adams who lives near Gary, Indiana.

“There can be no more talking about us without us,” he said. “We want to be part of the conversation and where appropriate make sure we are part of it. Bottom line is we want a seat at the table.”

The emphasis of their work, at least for now, is the CDC Guideline. The plan is to inundate elected leaders in Washington and state legislature with messages every month through social media platforms.

The first outreach is planned for February 1.

“We need people from each state to be involved, because this issue is going to be fought state by state,” said Pool.

So how does someone get involved?

On Twitter, the group uses the hashtag #shareourpain, which has attracted dozens of followers in just the past week.

The website, also has a feature called #ResistBot which makes it easier for someone to contact their Congressional representative and their Governor.

A recent provocative interview with Dr. Terri Lewis on the National Pain Report encouraged the pain community to “get on the train or get out of the way,” which irritated some who believed they can’t advocate because they are disabled.

“We have the tools to do this.  Engaged patients can make a difference,” she told us.

Adams, who read the article,  pointed out that their coalition now lets folks who don’t think they are able to participate can do it sitting in front of their computer.

For now, this “movement” is exclusively focused on the opioid controversy, specifically the CDC Guideline.

They both acknowledge that their scope could expand in the future and include other chronic pain communities, including medical cannabis, kratom and others.

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Authored by: Ed Coghlan

There are 45 comments for this article
  1. Duane at 12:48 pm

    Hi, everyone! It’s been about a week since this story ran, and the outpouring of support and interest has been astonishing! So much so we have had to re-think our e-mail strategy to try to get back with everyone! We have attempted to respond personally to each email, but if we missed you please accept our apology. We also wanted to wait to comment on National Pain Report and give you an update! Thank you so much for your support of the Pain Advocacy Coalition #ShareOurPain initiative and your willingness to get involved and participate! A special thanks for Ed Coghlan’s and Dr. Lewis’s support! Thank you to National Pain Report and all of the advocacy efforts taking place. There are lot of people to collaborating together on behalf of the pain community, and we are encouraging everyone to be involved at whatever capacity that’s available to you. Thank you so much for responding so positively to our collaborative project! Our common experience bind us together. We have had a lot of feedback, so we decided to put the following together to help respond to everyone. We sincerely appreciate your reaching out to connect with us. Just to remind you, we are a collaborative group who use social media tools and platforms to support a patient-centric movement that is “e-Advocacy” based to speak with a unified voice to effectively amplify our message. Here is a link to help explain the philosophy of collaboration.

    We use social media and collaborative tools to collaborate, problem solve, advocate for ourselves and the pain community. The philosophy of collaboration is crucial to understand if we are to be successful. If we implement this philosophy, we can be successful, where others have failed.

    Check out this link to the article about “collaboration and crowdsourcing a common problem together”

    The idea is that we are going to band together in order to work in a collaborative fashion to get our voices heard. This requires a paradigm shift from traditional leadership.
    We are all equal (thus a collaboration), there is no “boss” per say as we are all in this together, advocating for ourselves and for each other to achieve a common goal. Leadership is by acting of the group, for the group and by the group. It’s a group mentality and that means the wisdom of the collective group prevails. Each individual is responsible for guiding the group to success.

    We want to empower you and everyone else that is wanting to join the movement to advocate for themselves, as well as the pain community as a whole. We believe that if we unify, that our voice will be heard as we become louder and stronger. We will build each other up. This is what it is going to take in order to be heard. We need to not be fearful (which can be difficult) and we need to step out of the “stigma shadow”. I like this phrase because it clearly defines what has happened to pain patients and what we need to do. We have been marginalized, made to feel fearful; we are stigmatized and we are standing in a shadow which brings to mind the image of darkness. I bet you understand what I mean.

    We are here to support each other in order to accomplish this goal. Our goal is to collectively advocate together to have the CDC Guidelines rescinded and to restore the sacred doctor/patient relationship. We hope, at some point to have protections put in place for patients with pain o that we will never see what has happened to our community, happen again. Our goal is to get the government, CDC, DEA, insurance companies and pharmacists out of our exam rooms. We want our doctors to feel comfortable doing what they went to school to do and that is to treat the patient. We want our rights back as patients to receive proper care for our pain and for our physicians to feel safe providing us with that relief.

    I highly recommend reading other sources as well. You should read as much as you can about what is happening in the pain community, what is happening to pain patients and our physicians. We need to learn about the people who are trying to take away our legal, safe, lifesaving opiates and what their motives and goals are. We need to be aware of who is funding them. The best way to begin to fight against this push to ban opiate medications is to educate yourself as much as humanly possible. You should consider reading the CDC Guidelines, learn about the addiction rates among the general population and chronic pain patients (by the way, it is extremely low) and learn about the statistics that are being touted by the CDC and DEA and how the facts are being misrepresented and stats are being skewed. You should try and learn as much as you can about “alternative” therapies, non-opiate medications, their efficacy and their side effects. You should educate yourself about the side effects and any possible negatives about opiates so you can counter any arguments that are being made out in the social media world against using opiate medication for long term therapy. When you are presenting your position, it helps to understand the position of the opposition and know ahead of time what their arguments will be. Remember, if you can form an argument and support that argument of the opposing side, then you have the tools to support your argument as you are fully prepared for anything that they throw your way.

    As a group, we can educate each other by sharing things that we have read, charts and graphs we have found, arguments and counter arguments that we have heard and journal articles and studies that support our position so we can oppose the opposition.

    As we embark on this journey, we all need to prepare ourselves. The first thing we should do is read the website. Of course, we can’t memorize it, but will provide a template for everyone to work from. It I helpful if you are familiar with the concepts that are outlined and explored there.

    There are a few things that we are or have implemented at the moment. First of all, you should definitely check the website as often as you can. There will be updates as things are implemented and this is your template for e-Advocacy. This is your essential roadmap. Read the information as often as possible and ask questions on Twitter or Facebook if there is anything that you may not understand. Remember, there is no such thing as a stupid question.

    The next thing that we are working on is the #Resistbot Campaign.

    Resistbot is a fun little program that enables you to contact your Congressman, Senator, Representative, Governor, President and it even helps you contact and write letters to your editors of local papers. If you text “resist” to 50409 and the program will text you back and lead you through the process. It is so easy and you can do it several times a day. All you have to do is write a letter and save it, text “resist” to 50409 and then you copy and paste your letter and send it to the desired person. It is so easy to do and if you keep doing it, you will get noticed. There are people that have received personal responses from various people that they have contacted. It is a great way to get their attention and we are planning to officially do a roll out on Feb 1st,, 2018 where we are all going to be using Resist-Bot to send these emails/faxes to our Congress, Governors, and the President, all at the same time with one unified voice. If we do this together, we will be noticed. It only takes a few minutes to participate. However, please send a many responses as you can.

    There are instructions on how to use Facebook for this campaign.
    Even if you do not have a phone, you can still participate using Facebook.
    See instructions in the link.

    The next thing that you might consider doing, getting an account on Twitter.

    Follow us @ShareOurPain then connect with us by using the putting the hashtag #ShareOurPain on your Tweets. Wherever there is a blue link that says #ShareOurPain, click on it because it will deliver you to the chat board where you can connect with the Share Our Pain Tribe and see their tweets live and in action. (Make sure you choose “latest” to see the most recent tweets on the chat board from the menu.)

    By including #ShareOurPain, we will see your posts and you will see ours, and we can follow each other. Once you do that, you will to what we are doing for the day, people that we are tweeting to, people that we are educating, and how we engage with each other.
    I know it can be intimidating at first if you have never done it but we all have to start somewhere. We must get out of the echo chamber and bring our concerns to the public. Twitter is the place to do that. This is where the social and political dialogue about healthcare and pain is being held in public, not on Facebook.

    Might as well start here as #ShareOurPain is a very active group with a lot of really nice members that will show you the ropes and help you get acquainted with Twitter as well as each other. Being that we are an e-Advocacy movement, that is something that you really need to do in order to keep up with what the group is doing. Just remember, when you tweet or respond to a tweet, use the hashtag #ShareOurPain and that will connect you with the group, members will notice you and then you can follow members and get to know the ropes. It is a lot of fun and like I said; it’s an amazing community that is so much fun to engage with.

    You can follow us on Facebook for information.
    We have our
    If you want to be involved, you must set up a Twitter account

    Here is our Twitter address

    Twitter Help Site is available for assistance.

    If you have questions, our Facebook and Twitter chat board are good places where you can go get them answered. Someone as you may have the same question and you can find an answer or you can pose your question and someone can help you. We can help and support each other. We would much rather you ask a question then try to struggle and figure out something on your own.

    In the future, if you would like to send an email, you can use the email address that is linked to the site. However, email is an echo chamber and cumbersome. If you can ask on Twitter or Facebook, please do!
    We are here to help guide each other so please don’t be afraid to ask questions. Our goal is to empower you to help yourself so of course, making ourselves available to you is one of our number one goals.

    If you follow #ShareOurPain then you will be “in the know” on what we are doing in our advocacy journey. We are getting our Instagram, YouTube, Facebook and pages going so please follow us there as well. We are most active on Twitter at this time but that will change as we grow.

    There is another project in January, 2018 addressing an upcoming Food and Drug Administration (FDA) hearing, please review this material. It has been adapted from the original FDA announcement to make it more “user- friendly” so you can participate.

    There is a petition that is available to be signed at this time. Please sign the petition and leave a comment before or after the hearing. There will be a public hearing on January 30, 2018 regarding the Opioid Steering Committee and they are going to be discussing all the things that they want to do to make it even harder for us to receive our life saving medications. They want to implement more rules that interferes with the doctor/patient relationship. Here is the link to the original petition.

    So, you are up to speed! Keep in touch because we will be ramping up to introduce campaigns as #Mision2018 plays out. I hope that I have given you a good start to your journey in e-Advocacy. Remember to please always feel free to ask questions. No question is a dumb question! Also, from a collaborative spirit, all contributions are equal. No one contribution is worth more or less! We win as a team, we celebrate victories, but we win or lose as a team. We have subject matter experts to guide us, but we are “harnessing the wisdom of the crowd’ so, your input matters, the best and most feasible idea float to the top and are implemented. Even a “re-tweet or a share is helpful!”

    Once you get in motion online, you will meet a whole community happy to help you.
    We are looking forward to collaborating with you and we appreciate your support!
    @chronicwar @blesingbox4u @shasta77777

  2. Don Whimpey at 8:29 pm

    Very good comments on what’s happening to the loving people with Cronic Pain. Everything you talked about is true.
    I can’t understand that making Opioids hard to get and even then the medication is half what was given before by a professional Pain Management Doctor that they didn’t come up 1st with something to help people with Cronic Pain that was as good or better to help us.

  3. Deborah Arterbury at 12:18 pm

    I will indeed jump on this band wagon, as I am a 64 yr old women who suffers greatly with
    RSD/ RCPD, severe back pain, fibro, RA, and migraines.
    We moved from Southern California a year ago to western central Missouri’
    Not even thinking or advised that this is a place that only look at you as a
    drug seeker .
    If I were, I sure as hell wouldn’t be going to every DR in the area hoping
    to find it legally and safely.

    Even for my age, and being on Opiates for 14+ yrs with my illnesses
    they all just turned their heads. My Dr in CA said he wished every one
    of his patients were like me. Never an incident of any kind, never ran out
    of my meds, means taking incorrectly. Urine test great, I had some good
    days, and some bad days but still followed directions. Some really good
    pain control and some bad days but still followed what th Dr instructed.
    I would have never even thought it would be this bad.

    Come to find out Springfield Mo is the largest meth capital in the US.
    Well, that would be deadly for me as for one, wouldn’t even thinking about
    it, much less try and find it or doing it period.!!
    So, I have done some great researching online and couldn’t find nothing.
    The Doctors in Springfield MO and for what my diagnosis are, should
    not even be Dr’s. For two reasons, they didn’t even keep me on what i
    was taking, not even taking me seriously, I could show them I was a patient
    that cared about living, just not in so much pain I can barely get out
    in the community and meet all our new neighbors etc. We are New
    to the area but even getting ready to make myself presentable to the public.

    As I care what I look like, even with my illnesses. If they should ever get blessed
    with what i have, he/she will have a very hard time getting meds to let him enjoy
    what life they have left. As for me, I know my ending of life will be in a wheelchair
    not able to walk or stand for that matter.

    Then again, I wish to say, who the hell even cares as the Dr’s today are
    afraid of their own shadow. If a patient is in dire straights, help them for Gods
    sake. God is seeing what your doing to people that got their meds taken
    right out from under them, or are to afraid to prescribe what they need to have
    a little quality of life. Because if they do the opposite they will get their meds
    taken away for not following the Doctors dose they have them on.
    Believe me, you people who take it for fun, or to get high
    with the drugs, will be caught, and deserve to be taken away from them.

    But for Gods sake dont take the meds away from patients who so desperately
    need the medication to just want the will to live. Because pain is exhausting
    and after a while will give up. Just like 2 sisters i used to have. Yeah 2, one
    pain made her a mental case, my other sister, couldn’t get the meds she needed
    for bi-polar, depression, severe anxiety, and back pain from 3 back surgerys.
    After they made a mess of her spine, they turned their backs on her. She just
    couldn’t live with all the back pain, and with her mental conditions, a bottle of
    Tylenol and alcohol was her choice. Oh, this happened after 3, 911 calls
    for help, and got nothing. They just sent her back home. Enough was Enough
    was on the letter she left for my parents and siblings to read why she did what
    she did. What she did was tear a family all apart. Can you imagine loosing
    2 children because of worthless medical professionals.

    Why cant Doctors be the Doctors we had decades ago? They actually cared.
    Why would I waste my life, it I was not in pain, spend it looking for the meds
    the legal and safe way? Yes, that is me.
    Another thing, I am wondering, after hearing all these pain sufferers, make
    Marijuana legal so at least we will help getting some kind of pain control.
    They say this stuff is really good for a number of things, like stress, anxiety,
    pain, Insomnia, and so much more. If they legalize the plant that grows
    freely in our own dirt and fields.? Why because they would put the drug companies out of business. After All, they are one of the riches people in the world, can you imagine
    the business costs of not making opiate pain meds, making marijuana legal in all
    And the best part of it, have you ever heard of someone overdosing on marijuana?
    NOPE, and if they did they got it from a street vendor that didnt care what thye
    put on the product, as its not controlled, unless you go to the states that is legal
    and they are many, and more to come. Don’t they even realize how much money
    they could take in? No, of course not, because they would be helping a pain ridden
    person. The people that overdose on the opiates, I feel, just had death wishes.
    Well, I sure as hell don’t. I take my meds the way they are prescribe and willing
    to take urine tests when ever asked.
    So, to come to a close here, for one, I can’t type anymore, my hands are killing me
    and I get my meds but have to go 200 plus miles every month to see a real Dr
    that understands why i am in so much pain. I guess they were tired of hearing
    people taking their lives because RSD/RCPD is so painful and didn’t get the
    Doctors they know, how painful it really is.
    That is to me, a real and caring Dr. If a Springfield Mo. Dr should read this, (which I kind of doubt ) I will be praying for all the Drs that showed me the door. instead of helping an
    old lady just trying to live her life with a bit of pain control. As it does affect your body,
    mind & soul.

    Bless all you poor pain people out there, they have too have something other then
    opiates for severe pain control.
    Instead of wasting the money our government sends to so many overseas company
    and pay offs, keep the money here and come up with as safe, affordable way for pain
    sufferers. You can tell who is and who is NOT. At least I can, and i am not a medical
    God Bless This Country

  4. Kevin Jelley at 1:41 pm

    Two sugesstions:

    1.) Consider a Go Fund Me Campaign. Nothing gets done without money. I’d love to direct some of my giving to a cause that greatly impacts my life.
    2.) Create a Chronic Pain message board or provide links to existing message boards related to chronic pain. Many people use the comments section of published articles or blogs such as this to seek help for their personal circumstances. It’s not a very effective forum, and it distacts from the intention of the article.

  5. Don Whimpey at 8:30 am

    I’m glad to find The Cronic Pain Group to be a part of.
    I’ve been advocating on my own by emailing Congress Members of the House and Utah State Legislators but all to a blind ear basically saying a lot of what your letter said.
    People get results from large numbers. To many of us are going either untreated or there Opioids dropped by great percentages. I know live with a 6 to 9 pain level where before it was a 3 to 5 . With this change my exercising has gone down and I’m even had to go part-time at work not being able to work full-time with the pain level I end up with working 8 to 10 hours per day now I’m lucky to get 3 or 4 hours I can work. But I feel lucky being able to do that because a lot of us can’t even did that.
    Let me know what I can do to assist you.

  6. James Watkins at 7:05 am

    With the purpose of this article, and a call for action/advocacy for pain patients and opiods issues, a few posts bring up Lyrica ( I am taking successfully for Neurophy). As a few others also have posted that Lyrica is a non-opiod medication.

  7. David Schroeder at 9:39 pm

    Lyrica seems to help me with nerve pain but it makes me kind of crazy = poor impulse control.

  8. James Watkins at 7:28 pm

    Hi, much to share. With medical issues and associated severe pain, have had great success with Tramadol (opioid) for over a decade. Now as many other people who live with severe pain we are being treated like criminals, for responsible taking medication. I have put disability issue blog (Ability Chicago Info) on hiatus since Dec. 2017, I’m tired and with others advocacy is all we have at this point, looking forward to be involved. TY

  9. Terri Lewis at 7:13 pm

    On a deeply personal level, I am really proud to see ALL of the activity that is picking up in the community of people who live with chronic and intractable pain.

    We are our only rescue team. Nobody is going to do this for us – we must do it ourselves.

    We will build this track and the system to support it.

    But we won’t be silent anymore. Complacent no more.

    We can do this!

  10. pharmaciststeve at 5:41 pm

    Having advocating for the chronic pain community with my blog for going on SIX YEARS … I sincerely hope this group has a lot more success than many other who have tried over the years.
    IMO.. all previous attempts resembles trying to corral a large group of Ferrel cats. Maybe more and more of those in the chronic pain community are realizing that there is no way that they can “stay off the radar” and they can’t keep their heads LOW ENOUGH to not be impacted by what is happening to more and more chronic painers.
    As the various Fed agencies continue to ramp up the war on pts… the individual chronic painers are going to have to decide if they are going to be PROACTIVE or COLLATERAL DAMAGE

  11. Barbara W at 4:52 pm

    I think what Kimberly suggested having a database for our condition on our ID or put in a pharmaceutical data base is Brilliant so no matter where we went to fill a prescription all doctors & pharmacists would be protected as well!!! I don’t know what it would do for those employed in certain proffessions but in general great idea!!

  12. Joseph at 4:30 pm

    They are forcing us to use medical weed very expensive but what choice I max out my credit cards iam done help if any one got some information Thankk younGod bless

  13. Buck at 4:21 pm

    I’m a chronic pain patient and i suffer more as i get older.i was comftebel until 8 month’s ago i was cut not 1 but 2 times.been on meds since 1996 learned to walk agin just from meds.i would hate to be just now being hurt.somthing needs to be fixed. This aint working.the BIG H train is here. That is the opioid killing not pills. Do your homework people.

  14. D.kraus at 3:20 pm

    My doctor and his patients had the same problems filling opioid scripts.My doctor had to switch all his patients to a pharmacy that deals with opioid meds.The paper script is picked up weekly by the pharmacy and meds are delivered to the patients house or workplace.It has it’s advantages,but it also has it’s drawbacks.As far as I know the pharmacy only has locations in 3 U.S. cities.

  15. Ingrid Hollis at 2:55 pm

    Thank you so much Ed Coghlan and National Pain Report for sharing this! A big shout out of thanks to Duane Pool and Ken Adams for all the hard work and hours putting together the new website and forming the – the Pain Advocacy Coalition- #ShareOurPain. It’s a welcoming and open group-tribe- open to everyone who cares about the state of pain care. We believe the time has come for a concerted effort using the 21st Century tools of E-advocacy, Twitter, Facebook, Instagram, You Tube, etc. All the collaborative tools of social media are all easily accessed by those in the pain community. This allows every patient to have a voice, even if it’s from home in their bed! We hope is to include and unite all the various groups advocating for timely and humanitarian pain care. We are engaging physicians, reporters, legislators, and other advocates so we can become one voice to become empowered pain care advocates. No more about us without us! By employing daily social media strategies, and interacting with a group of fellow patients and advocates, it no longer feels like shouting out alone in the wilderness. It can feel so alone when you are going against the dominate social narrative. When it comes to restoring humane pain care, how can you be silent! Taking action together is empowering!
    About us:
    Our individual group, Families for Intractable Pain Relief, FIPR, also wishes to deeply thank the Pain Advocacy Coalition for standing in solidarity with Dr. Forest Tennant and all the other pain management physicians who are serving the pain community tirelessly and in good faith. The DEA over-reach into pain care has stop. Patients are suffering and doctors are scared. These good physicians are saving lives! We strive to bring truth back to the table! We agree that the patient/doctor needs to be restored and no longer influenced by third party influences.
    We all are working to step out to the sigma shadow. I have felt more empowered to make a difference, for my social media group- #ShareOurPain, and also for our group-Families for Intractable Pain Relief since joining efforts together with the Pain Advocacy Coalition. Thank you!

  16. Tammy Wilson at 2:44 pm

    The Government should stay out of peoples lives when it comes to them acting as if they know more then a trained professional Dr. I suffer from chronic pain and my Pain Dr has cut my meds so severely ( due to the CDC guidelines) that all I do is lie in bed and cry. This is ridiculous. Thank you so much for this group and fighting for the little rights that we have left.

  17. Maureen Mollico at 1:32 pm

    @Jannie, are you asking what may help nerve pain?
    Generally patients are prescribed Lyrica, Neurontin and Gabapentin for nerve pain.
    And perhaps pain medication to help it. You ought to speak with your Doctor about it.
    Best of luck.

  18. Maureen Mollico at 1:28 pm

    Amen! Thank you Jesus! This is it!! Answer to our prayers! Finally!
    This is exactly what our community has needed and asked for!
    This is soooo greatly informative, helpful and GIVES GREAT HOPE!!
    Thank you to the founders, advocacy collaborators, patients, Doctors and all involved!!
    The video included from the news station in Las Vegas is exactly what all news stations need to be doing! Excellent reporting and kudos to them!
    I find this pretty easy to be involved in, as a CP warrior. And I surely will become a part of this
    movement. God bless you all for your hard work and for bringing this to fruition on our behalf.
    Keep strong warriors and please get involved in this! It may be our only resort.
    I feel a great, positive filled train coming down the tracks….!!!

  19. Jim Moulton at 1:25 pm

    Thanks for sharing this, this should be on a lot more news stations.

  20. D.kraus at 1:24 pm

    EXCELLENT I think these two should be praised for their site.Its also a very informative and we’ll put together site.Easy to read and full of info that otherwise you would have to read many sites to get.I have already recommended it to 5 ppl that have responded to various opioid bashing articles on the web.Everyday I scan the net reading the lies put forth by the opioid bashers now I have a place to send the ppl who respond in the comments section of these articles.Got to get to these fingers busy again now,there are alot of ppl in Chronic pain that still only know of the lies produced by mainstream media and not the truth on this so called epidemic.

  21. Arianne Grand-Gassaway at 12:36 pm

    The false narrative has spiraled out of control and has become an hysteria reminiscent of the REEFER MADNESS of old. Some of us were out here trying to sound a warning years ago, and most pain patients thought that they would be exempt. No one is exempt. Everyone in this country is one diagnosis or tragic accident away from being one of ‘us’.

    Not only have patients with chronic pain been affected by this madness, but post surgical and acute pain protocols have as well. This will only get worse unless we start fighting back in earnest. NO MORE ABOUT US WITHOUT US! People are dying. Existing every day, every minute, in uncontrolled chronic pain is tantamount to torture. This should not be happening in a country that proclaims to be the greatest nation on Earth.

  22. Kimberly at 12:24 pm

    I would like to help with this group. On a personal level, my medications have been changed twice in the past six months. First due to Opana being pulled off the market; second, this month due to an inability to get my prescription for Percocet filled. In our new world in January 2018 my regular pharmacy of five years is being audited and cannot order narcotics, benzodiazepines, Adderall or similar medications until further notice (maybe indefinitely). This because they filled too many LEGITIMATE prescriptions last quarter. So off I went to attempt to fill my prescription at another pharmacy. I was turned away at six pharmacies either because they didn’t have the medication, it was on back order or the pharmacist had allotted their monthly allowable order to “monthly fills”. They simply could not take on any more “narcotic fills” even though I told them I would transfer my entire drug profile (all of my prescriptions). I am fortunate to have a very caring pain management physician who is highly skilled and an unbelievable human being. He took the time to call the pharmacist at a major drug store chain in Florida who refused to fill my prescription for Percocet, even after speaking with him an initial time to verify the script.

    In what world should pharmacists have the right to question what medication or combination thereof is best to treat my chronic pain?

    The pharmacist called me when he couldn’t initially speak with the doctor. He asked me what medical conditions I had & why was I taking Percocet?

    I understand there are people overdosing on narcotics. That has hit my family too. My cousin overdosed on heroine when she couldn’t get her pain medication refilled.

    Why can’t chronic pain patients, cancer patients & others requiring these life-saving medications, used properly by US, have our licenses or State IDs marked & in the now-standing database so that we can get our medications without the constant struggles, embarrassment & needless withdrawals??

  23. Terri S at 12:16 pm

    I’m a 53 yr old woman who has an entire spine that’s got defects and moving from PA to Mo., has put my life at risk, little did I know. I was under the care of a great pain specialist in PA. and thought from what I was told that I could continue care here. Sadly I’ve gone through withdrawal from my morphine even after going to the ER twice here in Marshall MO asking for assistance in the process, very sick at the time. I have no words for the way I was treated. I was made to leave after being scolded, asked if I abused my pills, wow. I’ve never thought of it let alone do that, I don’t drink, do drugs, never had a speeding ticket for Pete’s sake! Now that the morphine is continuing to leave my body my pain has become very close to unbearable. I’ve pondered suicide because of it, last night was my fourth night of little to no sleep. I’ve gone to so many doctor’s only to be turned away yet NOT ONCE have any of them said, let’s get an MRI. My spine won’t lie. So … If I do become one of hopefully not many of the people that not only ponder suicide but set it in motion, may I say God Bless this America and the cruel cruel hearts.
    Veteran US Army

  24. Dotsie Hunt at 12:09 pm

    Thankfull to find a advoacy group to give our pain a voice. My pain was managed to a level that i could get out take a walk vist my kids and grangkids and greatgrandkids until 21/2 yrs ago when my pain Dr did not want to prescribe my pain meds but wanted to put me back on a pain med that just didn’t work for me . I stopped after 3 surgray , wrisrs carpel tune Knee total

  25. David Schroeder at 11:59 am

    Lyrica seems to reduce nerve pain but it makes me crazy and obsessed with suicide.

  26. Dave at 11:45 am

    The pain community is organizing like never before and its interesting to witness grassroots democracy in action.
    Hopefully advocacy groups will learn the lessons of history when it comes to advocacy for there are snares and traps laid along the trail.
    In addition its of vital importance to think carefully about vision values and methods.
    Government has lacked vision in pain care and has been terribly sloppy with values and methods. So too has the health care industry when it comes to pain care.
    Its a terrible thing to see and have no vision but even worse to not see things clearly. Hopefully advocacy groups will get it right.

  27. Tina Stewart at 11:36 am

    Thanks to you and your group Alot of patients, spouses, families, and caretakers, can take sometime to feel relieved and start down a direction of real hope. Lets do this everyone. “No more about us without us”

    Thank you National Pain Report for finding this group and to spread the word even more.

  28. Denise Farmer at 11:03 am

    This is great news! Its time to lay that track down to Washington I have just now got a reply from the white house, and I have sent at least 5 emails alone to our President. I am willing to stand for Nevada. This is not my first rodeo, I was fighting the DEA back in 2010 I’ve lived in pain far too long to have to deal with this corruption again! If they want to help those that can’t get a grip on there addiction then by all means help them, but not at the cost of our lives. If the CDC wants to do the job there supposed to do, then help the people in Puerto Rico. I can’t believe how screwed up this Country has become.

  29. Jill at 9:54 am

    This is great and my thanks to Duane and Ken for their work. My 30yr battle with back pain has worn me out emotionally and physically to a point where the fatigue makes even working on the computer more difficult than I can imagine. Too tired to read, watch TV, go on Facebook. Hard for anyone to understand that type of daily exhaustion that is my life. Too exhausted to think. Any avenue that makes it easier for myself and those like me to join the fight is so appreciated.

  30. FormerPatriot at 9:50 am

    Apologies, I know I am repeatedly posting this like a troll but it is just too important to let anyone miss it.

    The Food and Drug Administration (FDA, the Agency, or we) is announcing a public hearing entitled, “Opioid Policy Steering Committee: Prescribing Intervention—Exploring a Strategy for Implementation.” The purpose of the public hearing is to receive stakeholder input on how FDA might, under its Risk Evaluation and Mitigation Strategy (REMS) authority, improve the safe use of opioid analgesics by curbing overprescribing to decrease the occurrence of new addictions and limit misuse and abuse of opioid analgesics.

    The public hearing will be held on January 30, 2018, from 8:30 a.m. to 4:30 p.m. The public hearing may be extended or may end early depending on the level of public participation. Persons seeking to attend, or to present at, the public hearing must register by January 16, 2018. Electronic or written comments will be accepted after the public hearing until March 16, 2018. See the SUPPLEMENTARY INFORMATION section for registration date and information.

    The public hearing will be held at FDA White Oak Campus, 10903 New Hampshire Ave., Bldg. 31 Conference Center, the Great Room (Rm. 1503 B and C), Silver Spring, MD 20993-0002. Entrance for public hearing participants (non-FDA employees) is through Building 1 where routine security check procedures will be performed.

  31. David Schroeder at 9:36 am

    About ten years ago, I began to have spinal fractures from undiagnosed osteoporosis. Some could be repaired, others remained very painful. The only thing that made life tolerable was opiate pain medication which the doctor slowly increased until the pain was tolerable. The medication doesn’t eliminate the pain but reduces it to the point that I can get out of bed and have somewhat of a life.
    Then, the CDC put out a set of guidelines that limited the amount of pain medication that any patient could have. The doctor has no choice, which means he is not allowed to adjust the amount of medication to meet the needs of each patient. My medication was cut in half leaving me in misery most every day and unable to sleep more than about one night out of three. These guidelines were developed in secret by a group of doctors who have no training or experience in pain management but own interest in rehabilitation clinics such as Phoenix House which has a success rate of about 3%. Since they couldn’t stay in business by doing a good job, they used political influence to force pain patients to use their services for which the government pays about $1,000/ day for.
    Worst of all, there have been uncounted hundreds of pain patients who have taken their own lives because they couldn’t live with the pain.
    This is the worst kind of tyranny; to refuse treatment for people in pain. It would be illegal to treat animals like this.

  32. scott michaels at 9:34 am

    It’s unfortunate, letters and BEGGING wasnt enough. We must make thier lives miserable. Like Terry said lead follow or get out of the way makes the most SENCE. Yes, most of us are too sick to do much but videos from your phone to every dea cdc and politician. THE I SURANCE CO.PANIES WILL NEVER SIDE WITH US. WERE JUST A HUGE EXPENSE. IF I LIVED NEAR A DEA OFFICE I WOULD BE THERE EVERY DAY WITH A SIGN SAYING. PY PAIN IS KILLIMG ME , LEAVE.MY DR ALONE. THEY ARE LIKE THE MAFIA EXTORTING FROM DRS. Those thugs misinterpreted the cdc guidelines.

  33. Sh at 9:08 am

    Great article
    We should create a pain kit for the NONBELIEVERS.
    Like the pregnant SUIT they used to do to young girls.
    Each person gets 2 small bags of marbles for each sock, a strip of DUCT tape about 3 ft long with POINTY BROKEN stones stuck to it and attach to spine. A 3 inch call BEARING that would get velcroed tightly at base of skull and one for the inside of each knee.

  34. Mist at 8:48 am

    over a month ago I sent a letter to Senator in my state and I just got a reply back She brought up the CDC
    ” To help address this issue, the federal government has taken a number of steps to create a more appropriate balance that provides patients and providers with more tools to make the best treatment decisions. On March 18, 2016, the Centers for Disease Control and Prevention (CDC) released its Guideline for Prescribing Opioids for Chronic Pain, which provide non-binding recommendations and information to safely use opioids for clinicians who prescribe opioids for chronic pain. I appreciate knowing of your concerns that efforts to combat prescription drug abuse could reduce patient access to needed medications. While I believe that our country has excessively prescribed prescription drugs, please know that I understand your concerns and I will be working to ensure that we create a system that strikes the right balance by prescribing prescription drugs when they are truly needed and avoiding them when alternative treatment methods are available. ”
    this is just part of letter I am unsure how to answer her back I need help.

  35. Russell at 8:43 am

    I was suicidal and despondent after docs removed my pain meds for Systemic Lupus Eurythmatosis, despite being fully disabled and compliant for over 20yrs. I was literally screamed at by a doc for taking my prescribed opioid meds as if taking pain meds is a moral choice. One doc asked me if it’s possible I could be imagining the pain.Over two years I walked myself off opioid meds 3 times due to the erratic prescribing of “docs”. #shareourpain has helped save my life and I will never forget the hope this group is giving me. I urge other CPP to JOIN and FIGHT for our human rights!

  36. Nicole Burrows at 8:21 am

    I have been without pain meds for several years now. I was depressed, in pain, and felt like there was nothing I could do, and nowhere I could turn. I have now joined the online and on twitter where we are joining together to embrace collaborative tools and social media to even the playing field and enter the 21ST century to unify our voice and amplify our message.By becoming more informed and engaging with our community online and with reporters, physicians, and with other advocates, we are now an empowered pain advocates. We are taking action and making an impact! Want to join us? Visit our website and tweet using #shareourpain. Let us know you are new to our group and we will welcome you and help you though the process of fighting for your rights as a chronic pain patient. Join us in our Resistbot campaign starting Feb 2018 by going here.

  37. Patti at 8:16 am

    Thank you for wonderful article! Great Job! As a member of SOP/PAC it saved my life. I was at the end of my rope, depressed , hopeless, until I found this group. Now, I wake up everyday, still in pain, but with knowledge that when people join together and speak out, we can change this terrible situation we as pain pts have been forced on us.
    I no longer feel powerless, hopeless. I know together, we are changing our history!
    If your feeling hopeless, youre not alone! Please, join us!

    You are not alone!
    I care about everyone of you!
    We will win this battle.

    Thank you again for wonderful article! PATTI

  38. Monica Quiroz at 7:36 am

    Great cause focused on giving a voice to those who suffer with pain daily and their caregivers who may feel helpless due to lack of resources. Let’s all get on the train and make a difference.

  39. Doug Hilgers at 6:46 am

    Thank You Ken and Duane for all of Your efforts to bring this Coallition to fruition !
    Indeed , the only means for so many of Us” to board the train”!
    Warm Regards

  40. Steven Smith at 4:51 am

    Great idea!. I thought getting out of the way was the only option for me.

  41. Philip Kraker at 4:03 am

    Thank God I have finally found an advocacy group for those of us who suffered severe chronic pain. I am at the mercy of the veterans administration who takes their marching orders from Washington. I’ve had doctors say they no longer
    feel they are able to practice medicine in the way they deem proper anymore.
    I joined the Marine Corps in 1969 because I felt I should have given something back to my country for the freedoms I enjoyed. However, I have contracted so many illnesses because I was a marine that many days when I wake up I just feel upset about it. I often wish the good Lord would just take me in my sleep. I promised my wife I would not iend vmy life prematurely or the truth is I would not be here to write this now. I never believed I would look forward to the day I died. However, I have been in that state of mind for 10 or 15 years now. I’m just so sick of fighting for something I feel would be a given considering the many maladies I suffer such as adult scoliosis, severe neuropathy, dupreans (sp?) contracture, migraine headaches and been diagnosed with ALS. Because the doctors have since retracted the ALS diagnosis, after seven months, they will not consider any pain medication even though I still suffer all the symptoms. I welcome this site with open arms.
    I agree that it is important that we be aware of the bills that are being pushed through Congress by people who have no idea what I just like to suffer like this day in and day out. But what really gets their attention, is that’s writing to them. Getting 10 or 20,000 pages of real testimony on your desk every few days leaves the protest that is hard to ignore. I think we need to consider letter writing campaign‘s that are would end as our pain is without end.

  42. Jannie White at 3:53 am

    What any of them have that works on nerve pain? Please reply back

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