Chronic Pain Patients Must Get Organized To Lobby For Their Rights. (Page 4) (Top voted first)

People with chronic, intractable pain are being discriminated against and it is imperative that we join forces to fight for our civil rights to life, liberty and the pursuit of happiness. Please send information on existing associations and organizations that can help or how to establish one that can help pain patients fight for their rights with petitions, letters; emails to send to these state and federal politicians that are determined use prescription drugs, doctors and pharmacies to further their political careers. Drug abuse is not the same as opiate dependent because of chronic pain management and there are over 100 million people living with pain and many of us are unable to live without medication. If the deaths from abuse seems high, the suicides from pain patients that are unable to get relief will be significantly higher. If we do not fight these governors (Colorado's Hickenlooper is a perfect example) and federal agencies that are discriminating pain patients we will be even more victimized. Obviously these politicians no little about pain and they are not aware that chronic pain patients are voters. The statistics used to support their claims regarding deaths from prescription medications are seriously skewed and lacking in additional factors that contributed to the deaths. Compromising the doctor/pharmacy and patient relations is not the government's job; as John Boehner stated government needs to stay out of healthcare and let the trained healthcare professionals make decisions regarding their patients not some politician looking for recognition.

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Re: pessimist (# 71)

I was just dropped from a pain management practice by the MD who owns over 50% of this practice. I'd been a patient for nearly 5 years. He claimed he would wean me over a 2 month period. However, when my insure company required reauthorization he took his sweet time and when I went to an appt having worn a 50 mcg patch for 4 days he said I was detoxed, we all know that's untrue, canceled the order for the lower dose and said I'd require no more appointments. This is malpractice. I'd like to find an attorney.
Recently I participated in the DEA meeting for chronic pain patients to make their voices heard. DEA will be taking further testimony through mid August. Please get your information/condition and treatment submitted. They need to know what the CDC so called suggestions are doing to chronic pain patients. I'd also suggest that you copy it to your Governor, Lt Governor, State Legislators, CDC, FDA, our President, and members of Congress. Best wishes to you I need to limp to hang my head over white porcelain.

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Re: Hop63 (# 103)

You absolutely correct. Several months ago, my Pain Dr said I had a choice pain meds or a muscle released. I’ve been on the same exact meds since 2003 when I became permanently disabled from a failed back surgery. The surgeon removed 95% of my disc at L4-L5. Left with 5% that continued to disintegrate. How much is actually left & has started compromising the other discs above & below that vertebrae? Answer is Yes. But because the government & DEA have started raiding doctors offices, my doctor told me I can no longer take pain pills & a muscle relaxant. I had to decide which ones help the most cause you can’t have both. Since the pain killers weren’t helping much, I chose the muscle relaxant. I’m still not able to stand straight erect. Have to use a cane & in the foreseeable, I will probably be in a walker or wheelchair. The insurance companies dictate what we can take for fear these pills are getting out in the streets. I’m sure almost everyone would agree that their medications are so important to them that you would know even if one is missing.

My world turned upside down ever since I had back surgery. I went to see another orthopedic surgeon in 2003 & he said I was inoperable. But living like this is no life what so ever. It has only gotten worse since then. There is zero stability at L4-L5 & other discs are wearing out much faster. When this first happened back in the 1990s when I first was injured, things have not improved at all & made it just as pain full. I now have a pain pump & stimulator implanted. And yet can not do daily things any longer. Friends & family see the way I stand or walk but still don’t grasp what is really going on. Since it’s been so long, I choose not to even bring it up anymore. My day / night consist on staying on a couch & not moving much because anything I do can cause a slippage in that disc. Causing unbearable pain. I feel for everyone in these blogs that goes through severe pain without getting the proper care. I get it. I understand. I pray that somewhere out there is someone who can fix our problems come through. Not with a “quick fix”. But someone who can give us some quality of life. I don’t know how much more I can take. Especially since they made so much progress since I was first injured. Also stop the government, DEA & the insurance companies from telling us what we can & cannot have. They need to live in our shoes for a day or week. Then maybe something will get done. God bless us all.

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We do NOT have an opioid crisis. We have a drug abuse problem crisis that we've had for a couple hundred years and corrupt politicians trying to make it seem like people self-medicating, stealing opioids is a criminal act separate from the drug problem in America. Tens of millions of law-abiding, responsible Americans taking opioids as part of their pain management programs and politicians making opioids a raison d'etre for re-electing them to supposedly solve a manufactured problem. I too have seen doctors prosecuted for trying to help people with chronic pain. We also have a suicide crisis in America and I'll bet the farm a lot of it has to do with people in chronic pain that cannot find a doctor who dares to prescribe a painkiller for fear of an over-zealous prosecutor.

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Pain Warriors is making a movie, I donated through PayPal. It is to get a movie out there about OUR SIDE and doctors. Canada made harsh laws, harmed chronic pain patients, and guess what? The Government changed it because of the harm they cause!!! Here is a way to get our message out there: Pain Warriors I believe has released part of movie on YouTube so you can see it is not a scam and is done professionally, so it will be taken seriously.

This is taken from The National Pain Report site: "We have launched an online crowdfunding campaign to finish post production. I am personally reaching out to you, my pain community to ask for help in completing it. Since I joined social media 5 years ago, I have heard thousands of cries for help, for visibility, for better lives and better access to treatment. This film has the capacity to do all that, and more. Even if you are bedridden or can’t advocate for your rights, contributing to our film’s completion can be YOUR VOICE, YOUR ADVOCACY."

You see more and donate at painwarriorsmovie.com. Thanks

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I'm supposed to be in palliative care. The Dr refuses to prescribe pain meds for me because I take clonapin for generalized dystonia and seizures. I have cerebral palsy, spina bifida, MS, Lupus and all of the accompanying organ damage. I am 64. I was always prescribed opiods in the past. However, when the "new" FDA "guidelines" appeared the insurance companies put pressure on Dr's to stop prescribing opioid meds, I have only been able to get them sporadically.
No Dr's even the Lags pain clinic I was going to drill prescribe opiods in California.
So, now I am getting an attorney. We need to sue the Dr's and insurance companies for malpractice, nonfeasance, and malfeasance. Then things will begin to change.

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Re: HOUSE (# 169)

Before you switch any medical provider you must request all of your medical records, and have already found a replacement. Sometimes when you make this request the doctor would ask why? Tell him you are not being treated correctly and need more medical attention: pain management.

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Re: Mare (# 198)

Good morning. I wanted to thank everyone for their comments about the situation I went through with that silly Narcan. This is just ridiculous. I'm going to call the corporate office and really light a fire under their asses. I'm just so sick of this crap and being tagged or looked at as a drug addict. I'll be 61 years old and I'm tired of this. That pharmacist made me feel like if I didn't take the Narcan he was going to tell like the Narcan police on me. LOL that was a joke. But he did make me feel very uncomfortable and that's why I purchased it. But I'm not done with him or that Pharmacy. Thank you so much for commenting and having my back. Have an awesome day. :) I will definitely keep you posted. Enough is enough.

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Re: BiggerBrat (# 190)

Go here and tell your story...pass it on please:

regulations.gov/docket?D=FDA-2018-N-1621

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W Johnson (# 231) --

Thank you, the two medications I took allowed me a sitting job. I had some quality of life now I have none. I cannot work or even do my house work I can stand 10 minutes and then have to stop. There is no quality to my life anymore. I need my medication so desperately.

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w john (# 251) --

John I hear so much anger and I feel same way. First of all we chronic pain sufferers and we r not supposed to b governed by a dictator or govt employees. What is going on is all to do with political gains. The gov't has no right to interfere with medical professionals. All the suffering we r made to endure plus on top of getting thru day we now have to research and tremendous anxiety worrying whether or not we can get it. Don't we have a right to the quality of life or apparently the politician I am an occupational therapist and with geriatrics in nursing homes in Brooklyn Queens and Long Island. I had to stop working due to health issues. Might go back doing homecare. Besides that I have seen the atrocities of chronically ill older adults who r suffering. I want to do something about this absolutely absurd method gov't is trying to rid country of drugs by going after medical doctors pharmacies etc. I am very angry. We r all human beings and should b treated as we matter. Our voices should b heard. Maybe one day these sleaze bags will wake up with empathy for their fellow man as it should b. Don't think so though. ?? all u people out there. Sue

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Re: sandy (# 347)

There is a group on Facebook that is fighting the CDC. Anyone that's trying to get those of us that need our pain meds taken off of them, "Don't Punish Pain Rally Nat" is fighting and anyone can join them. We have Rallies starting Jan. 29th at the State Capitals, sending letters, and finally starting January the 22nd, we have our first commercial on Fox Business! You have to look at your TV Guide to see if you get Fox Business channel. We also have doctors, pharmacist and well so many others in this group! Check it out, Join in on the fight to help us all win, it can and will be done! Yes, I know it will be a battle but with those backing us, we will beat this! You want results? Check it out, Join, if you cannot make the Rallies, you can always write or email Congress, your local news channel and so many more. We have so much going on that it would take a long time to post it all here! We even have T-Shirts and bracelets for sale so we can use the money to air more Commercials, which aren't cheap! They're several thousand dollars! We also have groups for each State, that way you can know what all is going on as far as the Rallies in your State. For those talking about wanting something done, here is your chance to make a difference. I do hope to see as many here as possible join the already over 8,000 members we have. Take care and thank you, everyone, for reading this and fighting with us to win this battle so we all can have some relief in our lives ~

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Opiophobia: The Irrational Fear of Opioids
By Dr. Jeffrey Grolig.

The irrational fear of opioids, opiophobia, has plagued our country before. Prior to 2000, especially in the 1980s and 1990s, opiophobia ruled the medical community. Physicians and pharmacists alike reserved opioids for only cancer and surgery. The fear was that opioids used for more than a short time would cause overdose, death and addiction. The War on Drugs from the Nixon era caused non-opiophobic doctors to be targeted, arrested and disciplined.

But then Dr. Russell Portenoy conducted research showing that chronic pain patients actually did well on these opioids, achieving an excellent quality of life with vanishingly few developing problems. Study after study was published supporting this viewpoint. Dr. David Fishbain found that opioids prescribed to non-addicts rarely resulted in addiction.

Finally the government and the medical community realized that science and not fear should dictate proper prescribing policy. The American Pain Society spoke out and decried that a national epidemic of untreated pain existed in our nation’s hospitals. This led to the adoption of “Pain as the 5th Vital Sign”. In 2001, the Joint Commission mandated that hospitals across the country assess pain in each patient. The Veteran’s Hospital System did the same. Soon the government came fully on board to eliminate the scourge of opiophobia.

The Federation of State Medical Boards, the agency that sets national standards for state medical boards across the country, adopted the 2004 policy on controlled substances. This policy was so opioid friendly that it required all physicians to adequately treat chronic pain, or else risk license discipline. The DEA was unofficially told to “leave them alone” regarding opioid prescribing doctors unless there was blatant drug trafficking.

The pharmaceutical companies jumped on the train as well. They developed potent long-acting opioids that pain patients could conveniently dose at once per day. Over the next two decades, opioid prescriptions skyrocketed by 400%. High schoolers started stealing, using and in some cases selling their parent’s or grandparent’s pills. Greedy physicians built multi-million-dollar pill mills by trading cash for opioid scripts.

And then the music stopped...

Continued on the National Pain Report blog.

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How can I help? This has gotten rediculous. I am in Marion county, Florida. We just moved here from Pittsburgh. I love it here but havent been able to find a doctor who will accept medicaid and provide the medicine that enables my husband quality of life. Please don't judge because he is on medicaid. He worked very hard for many years. I'm so tired of being treated like we are doing something wrong for simply wanting medication that we know works.

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Yes guys, we must call, email, and leave voicemails for all of the senators, representatives, and governors for your respective state!!!! I have called each one of the above about 2 or 3 times! But it's gonna take everybody continuing to bombard them with call, emails, and voicemails. To find your representative and who your senators are, go to: whoismyrepresentative.com

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Re: BL (# 424)

Purdue Pharma makes OxyContin. I believe the so-called "opioid crisis" was the invention of someone or a group of persons whose goal was to harm Purdue Pharma. If you go back to the beginning, someone conflated illegal Heroin with prescription OxyContin. Over time, the attacks became more generic which is how Morphine, Hydrocodone and all other Opiates got caught up. FYI, Purdue's family owners were deemed legally complicit. I knew my life that was pretty great because of OxyContin, was over when I started seeing the articles against OxyContin. Today, it has been acknowledged that the big problems within the actual drug addict community are Heroin and Fentanyl (delivered primarily from China.) This is not new information. It was always the case and the real statistics support my contention. When it began, I called Purdue and I begged them to fight with me. They did the opposite and they have suffered for that decision. I would point out lastly, that Purdue is not alone, they brought millions of American citizens into the Hell of their own making.

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I don't know if anyone has mentioned this before but if there are really 100 million chronic pain patients, I would think if we could get a political candidate on our side... That's 100 million possible voters. I know it really depends on a lot, but this is a thought.

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Re: Kelly (# 16)

I agree with you 100%!,should be between you & your Dr,if their is truly compasion&trying too control the patients pain. It is pretty hard too find a "Good" Dr that is willing too work & try too help you control your pain without over dousing.

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Re: Fed up (# 23)

I am being sent to PAIN MGMT too. My neurosurgeon is banned from CVS, so he is kicking us all to the curb.
The good thing is, this specific doctor, sits on the CT. DCP Medical marijuana board. I have a legal card and I have a copy of his "board meeting notes" saying combining opiates and cannabis is a good thing, because the person requires less opiates. I agree as my CBD 1:1 vape pen has allowed me to wean 100MGS a day of narcotics. I am now down to 30MGS total per day. CT. is making people only get 1 week of opiates, and NOBODY can have "extended relief" without extra documentation from the doctor.

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Re: PAM (# 32)

File a suit. They can not leave you to withdrawal. It could kill you. Start making calls. Doctors are writing more scripts because they have taken on refugee patients. Call your reps, human services, esp if you have legit medically necessary opioid med for treatment. The gov is breaking the law interfering in your treatment. Contact dea and tell them your family is aware and will sue them. If you do not get your meds if you die from withdrawal. The laws are not made to deny you treatment but to stop addicts and now there are many docs taking cdc guidelines as law and dumping patients. Contact the national pain report. There is another doc they shut down too in cali for taking on refugee patients.

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I totally agree with you. We are being treated like a drug addict. I hate to say it but I can’t wait for someone in the government get denied when they are in pain.

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Is there a rep. for the ppl. who were controlled on 3 OxyContin OC a day, who now suffer and have proved the new OPs DON...

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