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.

@19lin

@stfnwtl89 https://www.sciencedaily.com/releases/2013/04/130415172013.htm , This is an article I tried to copy the link, I hope I did it as I am not very good at this, however they were talking of a new method of pain control using a system of freezing the nerve that carries the pain? I don't really understand it but maybe you can? It may be helpful to you or to others with the right kind of pain to use this on?? Good Luck. 19lin It was in Science Daily of April 15, 2013
"Doctors freeze nerves to knock Chronic Pain out Cold". It might have been Science News or Science Daily? Sorry I am not very skilled at copying things. 19lin

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After botching a cervical spine surgery leaving me in severe pain, a neurosurgeon wanted to fuse my lumbar spine. I left his clinic and “Care.” The next doc recommended a RFA to the facet joints in my lower back at S1. I was pain free x 6 months. I’m still coping with severe pain but any additional pain makes my body overreact and no medication is effective. It does not work for everyone and it’s not cheap(I have private insurance) $8,000 the doc got about $800 the hospital $7,200. If it works, it’s amazing to walk pain-free.

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@stfnwtl89

Well... this is just a mess but someone posted an article from human rights group on this topic and the article was informative. Also, I found thru the article to go to the board in your state and look for board certified pain specialist rather than pain mgt clinic. Which I found only 3 within a 75 mile radius of my home and to my surprise my mother's pain dr. Was not on the list. I had no idea there was a difference. Would you like to know why I am having to do this? Since current pain Dr. Does not like the outcome he is receiving from backing my mom off her meds and I can only imagine it doesn't meet cdc guidelines he sent her a certified letter stating he would no longer treat her and he would refer her to another clinic. (I think not.) And primary dr. Of 20+ years has dropped her via certified letter as well because his letter said she was rude to a staff member. Well Maybe she was but Mayne she was not, we have been calling for 2 months trying to get help only to be ignored because she is not meeting the 6 month goal set by them. Saw a Neuro surgeon in the meantime said no more procedures would benefit mom she is a typical facial neuralgia and needs to be managed with meds. In addition, found new PCP, and have appt with new pain specialist Thursday. I pray this helps because we found out ahe has small benign tumor right frontal lobe, and these 2 fellas don't like my response to the lack of professionalism and their inability to Dr my mom. I am mortified and when I get my mom back situated and her health seen about which is first and foremost, these 2 crackerjacks are going to be reported at Best. Anyone else out there having issues such as this? Sad state and my parents have 3 different medical insurances. So it's not a Medicaid issue.

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Sorry to hear your Mom is having all this trouble and those rude Dr,s can't believe it ,horrible ,yes they should be reported to the medical lboard hope things get better

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@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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Just leave our pain meds alone. Should be on a case by case situation. I'm 72, have an incurable disease and, you're right. The "jelly bean" tylenol is a joke. As I say, "oh, yeah, she's cut her arm off, give her a tylenol" what a joke.

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@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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Have you gone to endo yet?my emails are ending up in spam ,sorry for not writing sooner but have thought about you.

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@19lin

@stfnwtl89 https://www.sciencedaily.com/releases/2013/04/130415172013.htm , This is an article I tried to copy the link, I hope I did it as I am not very good at this, however they were talking of a new method of pain control using a system of freezing the nerve that carries the pain? I don't really understand it but maybe you can? It may be helpful to you or to others with the right kind of pain to use this on?? Good Luck. 19lin It was in Science Daily of April 15, 2013
"Doctors freeze nerves to knock Chronic Pain out Cold". It might have been Science News or Science Daily? Sorry I am not very skilled at copying things. 19lin

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Thank you

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@patch

Whether it is electricity, freezing, or radio wave, these methods are all the same. they are designed to "cut/kill" the nerves that are causing the pain. I have had nerves cut (all of the 2nd branch and part of the 1st branch of he trigeminal nerve on the right side of my face. I think, though I could be wrong, that these procedures are not a permanent fix to the pain. I think most doctors/anesthesilogists are saying the relief can last up to 6 months. You might think this is a waste of time, but it is not. If you do get one of these procedures and get relief, then you may be closing in on a permanent fix for your pain problem. I say this because if you get relief, you KNOW what nerves are causing the pain. Always keep looking for a solution. I got about a month's worth of relief from my procedure. I was able to get a deep brain stimulator a year or two later. It cut my pain meds in half, and I was much more comfortable!!! They are making progress on chronic pain and controlling it, so what's not available right now might be available in the not too distant future!!! Good luck everybody!!!!

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I read the nerves can grow back and be even more painful. The 3rd Neuro surgeon we spoke with said no procedures or meditation will help.

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The Pain News Network has an article that says the CDC admitted they over estimated the deaths from prescription opidids. https://www.painnewsnetwork.org/stories/2018/3/21/cdc-admits-rx-opioid-deaths-significantly-inflated . This was suppose to be in an editorial of the American Journal of Public Health. I don't get the journal so I can not check it out maybe some others on here do and can see what it says. 19lin

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@wsh66

It's an uphill struggle to maintain access to opioids. I don't believe that all the drug abuse around opioids is happening from waylaid prescriptions and prescriptions that are tricked out of doctors. I rather believe that the drug companies are selling these drugs out the back door to drug dealers. The drug companies know how much money is made in the streets on these pills and they want a piece of that action. The previous director of the DEA was fired because he wanted to go after the drug companies for dumping opioids. Congress passed the law and Trump signed it preventing the DEA for prosecuting drug companies. Nice huh. They obviously have something to hide. The scale of the problem is just too large to be coming from legitimate prescription pads. I don't know how many of you are old enough to remember the Quaaludes epidemic of the 70s. It turned out that the company that manufacture Quaaludes was dumping five of every seven pills out the back door to illicit drug dealers and the company was shut down. now the drug companies have Congress on their side paid for by the drug companies lobbyist. Now they have a law that prevents them from being prosecuted. Shameful shameful shameful.

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Wow! I’m replying to follow up on what has happened? Did the bill pass? I am fortunate to have private insurance first and Medicare second as I am disabled due to a stroke that ended my career as an ICU Nurse in 2011 and left me with a complex Pain Syndrome in my Left Leg. I too have felt the government ‘s obsession with what they call the ‘opiate craze’. My primary physician has lowered the amount of rescue meds I receive and has lock me into a single dose on my main opiate refusing to increase the dose or shorten the time between doses even tho I have been at the same dose and schedule for 2 years and have been taking the drug at varying strengths for 6 years. The kicker is that he’s done it before; gone up in dosage and shortened the time between doses, all medically suggested. It’s the FDA. There watching everyone, looking for unusual activity. Whatever. It’s sad that good, honest people have to suffer BC of the bad apples.

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Here in Oregon, the Board of Physicians recently imposed strict limits on the amount of opioid a doctor may prescribe. It all seems completely arbitrary, with little or no consideration for the individual patients and their needs or history of opioid use.

Jim

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@wsh66

It's an uphill struggle to maintain access to opioids. I don't believe that all the drug abuse around opioids is happening from waylaid prescriptions and prescriptions that are tricked out of doctors. I rather believe that the drug companies are selling these drugs out the back door to drug dealers. The drug companies know how much money is made in the streets on these pills and they want a piece of that action. The previous director of the DEA was fired because he wanted to go after the drug companies for dumping opioids. Congress passed the law and Trump signed it preventing the DEA for prosecuting drug companies. Nice huh. They obviously have something to hide. The scale of the problem is just too large to be coming from legitimate prescription pads. I don't know how many of you are old enough to remember the Quaaludes epidemic of the 70s. It turned out that the company that manufacture Quaaludes was dumping five of every seven pills out the back door to illicit drug dealers and the company was shut down. now the drug companies have Congress on their side paid for by the drug companies lobbyist. Now they have a law that prevents them from being prosecuted. Shameful shameful shameful.

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Fortunately the bad apples have now spoiled the entire barrel. It is difficult for those of us who truly need the help. Those of us whom are serious about getting help for their pain have started looking into alternative methods. I can say there are methods that may help some do help some and even a little relief is better than none at all. We are all different. Distraction works the best for me even though it is oft difficult to push through the pain to do so.

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