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

There,s a good website for fibromyalgia and RE its,: community @newlife.com ,good info on it

@ayankeeinnm

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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@ayankeeinnm

@19lin posted a link above for a good article. An email address is included to tell your experience with meds. It's to a woman named Laura. Email millsl@hrw.org.

Jim

@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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@lioness IN. Pain much worse because because of hypothyroidism now. Been going on since last September with increase of Nature throid. Breached the subject then and was poohed poohed. Nearly died in 2013 because a doctor would not listen about allergy to the Synthroid. Have been referred to an endo which could take a month or more being a new patient. Very discouraged and not one to cry I can't stop. Symptoms improve some as day progresses, but increased dosage has me itching, sore throat, swollen glands, the scoots, cramping is awful…give my body time to adjust. Very hypo so have to take it or risk doing permanent damage which were instructions by the nurse. So much for positive thinking for now. Going to ER won't help…Geesh, what to do.

@jimhd, @19lin I actually wrote email to lmills, with the human rights group. Also, sent same message to all 8 senators who are spearheading the alleged "opiod crisis" and the new CARA 2.0 proposed bill. I think I am using the correct terminology. In the mean time, the family member I am dealing with the medical issues has had 1 problem right after another. We have finally had appt with a new NEURO doctor who said that she has Atypical facial neuralgia, there is no procedure to help relieve pain. He is working on getting her into a new pain clinic that should be more knowledgeable. This sight has been very informative concerning the politics of pain. Now If we can just find some medication that will actually help her manage pain to a tolerable level. I keep reading and searching but can't find very much information seems like same medications being used and no real benefit.

@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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Do you ever try going to a urgent care ? They have medicine for uncontrollable crying ,see your Dr. For prescription. I belong to a prayer group would you like me to put you on?Count the days till you see the endo.I'm sure he can help you with your thyroid Read God,s word ,hang in there .

@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

Liked by stfnwtl89

@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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Here is a link to a broad explanation of ablation procedures, https://www.mayoclinic.org/tests-procedures/ablation-therapy/about/pac-20385072. This is a bit of a generic definition however, not for specific diagnoses and treatments, but may help understand a bit more about multiple types of ablation treatments.

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!!!!

Liked by 19lin

@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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Thanks for this information wasn't aware of it

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.

@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.

@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

@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.

@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.

@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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