1. < Chronic Pain

Politics of Pain

Posted by 19lin @19lin, Mar 2, 2018

I have chronic pain and have had since I lost my leg and injured my back in Vietnam in 1968. Now nearly 50 years later it has gotten worst with advanced age. In the last few years I started using strong pain medicine and now the powers that be want to shut it off unless your a cancer suffer. Even though many opioid users who follow their doctors advise do well and lead near normal lives. So I would like to open up discussion on the politics of pain if it is allowed?
I just received a notice from the pain news network (Painnewsnetwork.org) that the CMS (Centers for Medicare and Medicaid Services) is about to close public comment for citizens on payment for opioid type medicine through Medicare and Medicaid. If their proposal is approved they will restrict payment for pain medicine (opioid) to a small amount that needs to be renewed every few days. The Comments close March 6th and any citizen or concerned person may submit their comments.
For more detailed information please check the Pain News Network (painnewsnetwork.org) February 19, 2018 a post written by Richard Lawhern who provides a lot more information than I can.
You can write direct to regulations.gov (www.regulation.gov) look for Docket ID: CMS-2017-0163 . In the search box at the top of the page fill in the docket ID which should take you to the page with two requests for comment. I believe the one calling for payment is most important but you can comment on both. IMPORTANT make comments by the end of March 5, 2018. Just tell them how this will effect you or your family, of course family and friends can comment also. In addition contact you elected officials on the federal level and state level. Their office address and phone number is in the phone book or you can Google them and send an email. I did an internship in a congressional office and I know that they give more weight to letters sent through the mail but all comments make an impact so phone, email or write to make an impact. The pain news network article provides a direct link to make comments.
There are many sites that have formed to provide information about pain so if you wish to do something I recommend you get in contact with them to find out more information on opioid regulations.
I realize that most people come to this site for support, but if you would like to do more to lobby for change to opioid regulation then maybe we can bring up information on this site also. One of the things that counselors and Social Workers do is advocate for people, so as a Social Worker I have done some of this. 19lin

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Mentor
Jim, Volunteer Mentor | @jimhd | Mar 5, 2018
In reply to @janet111 "The problem I believe is Jeff Sessions. It literally makes me crazy, this ignorant man not..." + (show)
@janet111

The problem I believe is Jeff Sessions. It literally makes me crazy, this ignorant man not only wants our drugs but marijuana too. I have had this disease for twenty years and in the last 5 years it was joined by arthritis and two back surgeries. AND NOW when I finally agreed to pain relief they want to take it away.

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@gman007

I wrote my first letter to a magazine last week after I read the opioid special edition. I was disgusted.

Jim

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Stephen | @wsh66 | Mar 5, 2018
In reply to @janet111 "The problem I believe is Jeff Sessions. It literally makes me crazy, this ignorant man not..." + (show)
@janet111

The problem I believe is Jeff Sessions. It literally makes me crazy, this ignorant man not only wants our drugs but marijuana too. I have had this disease for twenty years and in the last 5 years it was joined by arthritis and two back surgeries. AND NOW when I finally agreed to pain relief they want to take it away.

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What magazine?

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Mentor
Jim, Volunteer Mentor | @jimhd | Mar 5, 2018
In reply to @janet111 "The problem I believe is Jeff Sessions. It literally makes me crazy, this ignorant man not..." + (show)
@janet111

The problem I believe is Jeff Sessions. It literally makes me crazy, this ignorant man not only wants our drugs but marijuana too. I have had this disease for twenty years and in the last 5 years it was joined by arthritis and two back surgeries. AND NOW when I finally agreed to pain relief they want to take it away.

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@wsh66

Time

The whole issue was about street drug addiction. Not a peep about the legitimate opioid medication for pain control. It was almost exclusively about heroin abuse.

Jim

REPLY
19lin | @19lin | Mar 15, 2018

This is not a reply, but something that might interest chronic pain suffers. https://www.painnewsnetwork.org/stories/2018/3/15/human-rights-watch-investigating-treatment-of-pain-patients This is a connection to an article that human rights watch maybe investigatig the treatment of Chronic pain patients.
I am not sure if this will lead to anything, but it may help by bringing attention to the struggle that pain patients are having in America. 19lin

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7 replies
Mentor
Jim, Volunteer Mentor | @jimhd | Mar 20, 2018
In reply to @19lin "This is not a reply, but something that might interest chronic pain suffers. https://www.painnewsnetwork.org/stories/2018/3/15/human-rights-watch-investigating-treatment-of-pain-patients This is..." + (show)
@19lin

This is not a reply, but something that might interest chronic pain suffers. https://www.painnewsnetwork.org/stories/2018/3/15/human-rights-watch-investigating-treatment-of-pain-patients This is a connection to an article that human rights watch maybe investigatig the treatment of Chronic pain patients.
I am not sure if this will lead to anything, but it may help by bringing attention to the struggle that pain patients are having in America. 19lin

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@19lin

Thanks for the link. I sent a message to Laura about what I'm going through with my doctor. He's gradually cutting back on the dosage of opioids, and told me to take NSAIDS, which I shouldn't take because of the risk of bleeding. I'm fearful of the future of my pain control.

Jim

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ayankeeinnm | @ayankeeinnm | Mar 21, 2018

Hello. Thank you for the info. I did not know about the painnews site. Went to the docket - comments closed March 5. 639 comments left. I am dependent on opiods after failed back surgery. The rest of my story is the same as ever other story.

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1 reply
Parus | @parus | Mar 21, 2018
In reply to @19lin "This is not a reply, but something that might interest chronic pain suffers. https://www.painnewsnetwork.org/stories/2018/3/15/human-rights-watch-investigating-treatment-of-pain-patients This is..." + (show)
@19lin

This is not a reply, but something that might interest chronic pain suffers. https://www.painnewsnetwork.org/stories/2018/3/15/human-rights-watch-investigating-treatment-of-pain-patients This is a connection to an article that human rights watch maybe investigatig the treatment of Chronic pain patients.
I am not sure if this will lead to anything, but it may help by bringing attention to the struggle that pain patients are having in America. 19lin

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@jimhd I am now experiencing not getting help for pain control and was told to walk. I can no longer use NSAIDS and have done everything I know to do. I only requested 1 hydro 5 mg. a day. Also having thyroid issues now because of severe, but rare side effects of Nature-Throid. TSH 13.36 as of last Friday and when they increase the dose the side effects become so severe it scares me. Weight on the rise and fear becoming a fat old sow.
Sorry, need to take the thyroid issue to the proper place. Now awaiting a call from from endo doc. Feeling my life is ending and cannot stop it. If this is all it is going to be it is no longer worth the trying. 🙁

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jlfisher56 | @jlfisher56 | Mar 21, 2018

Many of us are going through this also. Just wish there really would be better relief for us. Don't believe they understand the mechanism of chronic pain yet and we are all experiments. Even when something works, law/s get passed, we are no longer allowed to use. Subjective opinions of our pain instead of objective. Very frustrating. Don't know many who want to use all the various modalities every day to deal with pain... but we do (not just relying on medication. Drug addicts are making the lives of some chronic pain patients who need and responsibly use narcotics, difficult and are forced to stop using them. Also, any benzodiazepine used as a muscle relaxant. I know what works for me after 24 years. I have tried many different medications and use many modalities. I decrease my dosages depending upon my pain. Now we are going back to years ago when the main drugs were the anti-seizure drugs. They are not without their own side effects too. There is no "magic pill" for any of us but I get tired of doctors "pretending" resulting "pain" is not real. I have read new medical journals about, "what has happened to chronic pain patients who can no longer obtain narcotics"? They are turning to the street. I have not and will not, but this population is forgotten and being treated terribly. So far my doctors are helping me and being compassionate but I do have to STOP my narcotic.

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doxyjune | @doxyjune | Mar 21, 2018
In reply to @19lin "This is not a reply, but something that might interest chronic pain suffers. https://www.painnewsnetwork.org/stories/2018/3/15/human-rights-watch-investigating-treatment-of-pain-patients This is..." + (show)
@19lin

This is not a reply, but something that might interest chronic pain suffers. https://www.painnewsnetwork.org/stories/2018/3/15/human-rights-watch-investigating-treatment-of-pain-patients This is a connection to an article that human rights watch maybe investigatig the treatment of Chronic pain patients.
I am not sure if this will lead to anything, but it may help by bringing attention to the struggle that pain patients are having in America. 19lin

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HI parus, I was on Acella natural thyroid and the balance of T3 and T4 was not in synch. I am now on Canadian Erfa which is doing a better job than Acella's version. Acella was working great for about 6 years till the fall and winter of this year. See if you can get a script for Erfa. It might help you. 1 hydro is nothing - I'm really sorry you are going through this. Dorie

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lioness | @lioness | Mar 21, 2018
In reply to @19lin "This is not a reply, but something that might interest chronic pain suffers. https://www.painnewsnetwork.org/stories/2018/3/15/human-rights-watch-investigating-treatment-of-pain-patients This is..." + (show)
@19lin

This is not a reply, but something that might interest chronic pain suffers. https://www.painnewsnetwork.org/stories/2018/3/15/human-rights-watch-investigating-treatment-of-pain-patients This is a connection to an article that human rights watch maybe investigatig the treatment of Chronic pain patients.
I am not sure if this will lead to anything, but it may help by bringing attention to the struggle that pain patients are having in America. 19lin

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Parus where do you live? I'm so sorry you feel this way my heart goes out to you the info Dr did wonders for my friend hope for you the same.Love Lioness

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