Chronic Pain Patients Must Get Organized To Lobby For Their Rights. (Page 3) (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: Ed (# 20)

I hurt 24/7, 365. What has happened to our health care systems?? Why, why, why, why? What Statesman/woman is going to stand up and help us stand up for our basic rightvto decent health care? Lord, my cats live more pain free than I do! Comr on now my fellow Americans. Right is right. Shame on you doctors that don't stand up for us. You took an oath just like I did when i joined the service. . I can't go back on mine, but you can?

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Re: Kelly (# 53)

I wish I would have read and responded to you prior to your pm appointment. I would have said, don’t say a word, just mentioning the word opioid to your dr is a big red flag. I asked my pm. Dr to change the meds I’m on due to their ineffective poor “new” reconstituted formula, he decided to cut me off! He informed me that “pain medication actually makes your pain worse!" Yes, this is the bs we are being fed, lies on lies, it amazes me that these drs graduated from advanced courses in the treatment of chronic pain, receiving certifications allowing them to treat chronic pain, years and years of studying how to treat pain thrown out the window. The new way: let the chronic pain patients suffer. Tell them that opioid treatment is bad! UN FREAKIN REAL!!! My new Moto: save the addict kill the chronic pain patients!

I hope your appointment went well and you weren’t thrown to the curb.

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I’m with you My PCP recently booted me out of her clinic. She put me in Norco 5/325 5 years ago as she said that’s all that would work for my chronic osteoarthritis pain. Never once ran out early ( in fact have extra left over every month) or lost a prescription. I asked her twice about a long acting pain med, that was it. Her words “ I think you should find another primary care provider”.

Thanks, thanks for caring about me. She never even bothered to give me my latest PAP results which had some questionable cells. She is a prime example of doctors fishing for money only. Wish me luck for finding a doctor who cares in Cleveland,Ohio area.

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Re: Vicki (# 94)

Hi Vicki, here is a good place to start...National Pain Report.

Don't miss Dr. Terry Lewis' article: "If We Don’t Ask, We Don’t Get and If We Don’t Tell, They Will Stop Asking"
- (Posted on May 28, 2018 in Government of National Pain Report) By Terri Lewis, Ph.D.

Rose Bigham's article: How to Talk to an Elected Official About Chronic Pain - (Posted on July 14, 2018 in Opinion of National Pain Report, with 25 Comments) By Rose Bigham.

Last, I want to share two replies to Dr. Lewis's article. WOW!

"Thank you doctor. Some practical information from one who completed the fda survey. It took me 3 hours. I did not comment fully because of the severe pain I experienced. Also, some of the questions and answers do not make sense, so do not check those. Instead try to comment. Some were blatantly rigged to skew data. You will discover that this is also a gotcha type of document. If you answer some questions truthfully and give your information at the end it will go to the local police and pharmacy. Probably not your doctors. You will be at further risk of losing medical treatment if you take the survey. One ‘answer’ asks if you will be driven to buy street drugs if you are fired from medical treatment. What street drugs? None here in the land of Andy Griffith. And don’t become emotional and answer yes. You will be put on a police database. The survey probably is bogus, not for collecting medical data or getting a feel for the agony of intractable pain, but for identifying community members and their pain medications and their prescribers. Then at any time, the pharmacy will throw you a surprise party and stop your weak dose of short acting opioid when you come with your valid script. Again, if in pain, the survey will be difficult if you comment on all 30 or so questions. To comment fully would have taken me six hours and I am a fair keyboardist. But some of the questions are dubious and so was the required disclosure of personal information at the end. It doesn’t look as if an honest Christian crafted this survey. But on the slim chance Christians took part in it, take a bufferin and fill it out. If they were not Christians, then they must change or they will have a place in hell. Are you listening Jeff? Or Big Brother?
Truth and pain patients are the casualties of this war on innocent, suffering citizens of the United States. I pray that no more take their own lives because of this disgraceful mess. Thank you Dr. Lewis for your help and compassion."

"There are over 1400 comments on the HHS docket, but only 247 on the FDA docket. If you have commented on just one of these two, YOU ARE NOT DONE!!. Every single comment on the HHS (regulations.gov/document?D=HHS-OS-2018-0009-0001) docket needs to be made as well on the FDA (regulations.gov/document?D=FDA-2018-N-1621-0001) docket, and vice versa. And if you have commented on both, guess what? You are STILL NOT DONE!! That red button on the side of the page is a link to a survey tool that will aggregate your responses for a presentation Dr. Lewis is going to make to a meeting of the FDA."

Altogether, this may seem like a LOT of work, especially for someone in chronic pain, but since this nightmare began, we have NEVER HAD A BETTER CHANCE for someone in government to actually HEAR OUR VOICE!! If you need help, ask a family member or your caregiver. There are over 60 anti-opioid bills in Congress right now. Chances are, not a single one even mentions patients in chronic pain.

Please do NOT let this chance to finally be heard pass you by.

IT COULD VERY WELL BE THE LAST CHANCE YOU WILL EVER GET!

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sandy

I agree we are treated like addicts. I am needing a PCP first thing out of mouth was I never give Pain meds. He is a jerk. will keep looking. I told him I would not ever ask.

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Re: C (# 216)

Thank you for your and others' feedback about the inappropriate down votes. This was a catalyst for us to push out an update which we had been considering. Moving forward, users can only "like" a post. No more down votes. That way, if somebody did share something of value, they can get many up votes. If no one likes what they had to say, then users can simply move onto the next message. Please let us know if there are any questions.

Lastly, thank you all again for your feedback and comments! We hope that this update provides a more positive user experience in the long run.

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James (# 230) --

Excuse me.. I had sitting job and it pays my rent. I am alone and use a cane and an up walker.. I take offense to you deciding what I need. I can barely walk after the surgeries I have had. I am 66 and have a multitude of problems. I was in the hospital for ten weeks AFTER A VERY BAD CAR ACCIDENT THAT ALMOST COST ME MY LEGS. I have lymphedema in both legs and many skin grafts later. I have no choice when I had meds but to find someway to not be homeless. If you read my post since they took the meds I cannot work at all. You have a lot of nerve to tell me anything. What I need is my medication as much probably more than you. You are not a doctor.

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My Doctor gives me a legitimate prescription for my pain meds and pharmacies say they don't have the product to fill it, making me go from one pharmacy to the next, so it makes me look like a pill searcher. I have the same Dr since the beginning and same pharmacy, but it's the pharmacy that says they can't get the product to refill it! This has been happening every time the DEA or CDC makes new rules that should only be for the drug addicts that take the meds for their own pleasure, not for law aboding citizens in chronic pain. I am 85 years old and disabled with at least 18 autoimmune diseases that keep me from being able to leave my home without assistance. Why can't they get it straight that the addicts take the meds for pleasure and we take them for our pain, which doesn't give us any pleasure at all! It only takes the edge off of my pain, and I would never want the results that addicts get! That would cause a lot of accidents. Why can't I just fill my legal script from my doctor, without being treated like I'm the addict??

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Wow... This went nowhere fast... guess after all this time, Big Brother is winning this war against LEGAL PAIN MEDICATION PATIENTS. Street abusers are still getting high... legitamite chronic pain patients are losing hope that we can never live our lives normally and without debilitating and depressing pain. This is ridiculous!!!

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Re: BiggerBrat (# 351)

Can you give details on the rally? Thanks!

Well, I was on a decent dose of morphine at one time. What happened is, the FDA came out with "guidelines" for the administration of opioids. The insurance companies then warned doctors that prescribing more than the recommended dosages of opioids would put them under scrutiny by the DEA and put their licenses at risk.

The guidelines can be found at the FDA website. The dosages are far, far below what is needed for pain control. Even though doctors have discretion when prescribing opioids, they will adopt the lowest dosages in order to avoid scrutiny. Then, in comes the politics, and the news media hype. The statistics used do not reflect the demographics of opioid users. They simply lump all users together under one umbrella.

To make matters worse, nobody, chronic pain patients or pain specialists are given equal air time. I feel the best thing we could do is to get out in public, put our faces out there and counteract the negative publicity and stereotypes. Letters to the editor, talking to the newspapers and TV news, insisting that they give us equal time. We need to educate.

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The opioid "crisis" is a JOKE! Darvocet is not the same as codeine. Codeine is not the same as hydrocodone. Hydrocodone is not the same thing as Oxycodone. Oxycododone is not the same thing as oxycotin. Oxycototin is not the same as morphine. Morphine is not the same thing as heroin. Heroin is not the same thing as fentanyl. Why are all these drugs being treated the same way under this insane opiod "crisis" nonsense?

People who have chronic pain aren't going to jump from darocet to fentanyl unless their options are limited to going to the streets to get God knows what to handle their pain. These decisions should be made by a doctor, not made by the desperation of people who need to have their pain managed by going to the streets.

May every one of these law makers who are pushing insane laws in the name of the opioid "crisis" get cancer or have an injury that causes chronic pain, day in and day out. Perhaps that would change their minds.

Prohibition has never worked and never will work.

The powers that be will only be providing a huge black market for these drugs. Guess what, if there is money to be had, and desperate people to pay to get out of pain, the black market will THRIVE. I don't think anyone wants that.

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Re: Barbara (# 40)

There is nothing wrong with fighting. But, this fight is not new. It has been going on for many years. And look where it is now.

The only ones that could make a difference have been and continue to be silent.

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I agree 100%!!! I know there is a problem with people abusing pain medicine, but the government is not going to stop it, no matter what they try to do!!! An abuser is an abuser!!! They are going to abuse it no matter what the government does, or try's to do, they will just go to the street's and get it! In the meantime, the people that really need their pain medicine cannot get what they "Really" need just to live a 1/2 way normal life, even then most still can't, but it does help "a lot" but the ones that really need it cannot get what they need! That is not fair to have to live this way every single day!!! If someone in government would need it, I guarantee they would get what they need while the rest of us have to "suffer" day in and day out and that is not only not fair, it is about as low as someone can get!!! I do not and never have abused any of my pain meds, but they took me from 80 mg down to 20, and from 30 mg of another down to 7.25 mg. Now all I can do is sit and sleep in a recliner!!! This is as low as low can get! When I had what I "needed" I could at least have somewhat of a normal life, now I am totally housebound!!! Do you call that "fair"? Well, it's not!!! Why cant the government stay out of what doctors "can" prescribe?!!! It is really none of your business!!! Medical situations should stay between a patient and their doctor and the doctors should be able to prescribe what their patients "really need"!!! Take care of all the school shootings and government business and stay the ____ out of a doctor and patient relationship, as it should be!

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Re: BL (# 39)

Hi. I just came across this post and realize this thread has been inactive for awhile. I was hoping by adding a comment we could reopen this discussion as the situation continues to get worse by the day. Patients with chronic pain are being denied the meds that kept them functioning for several years. Doctors are under scrutiny for the amount of prescriptions they write, pharmacies are limited to the number of controlled substances they can order and distribute. Pain management doctors are suddenly turning against their patients because they fear investigation. No suitable substitutes are offered. Soon there will be an epidemic of chronic pain patients going into withdrawal and possibly suffering heart attacks and strokes. Obviously we need to advocate for ourselves because the government sees us as part of the problem in the war against drugs. We are treated the same as those that use controlled substances recreationally. We just want to maintain some quality of life. Anyone else want to get this thread active again?

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Re: Mare (# 57)

You know, I can't wait either! In fact I would bet that some of these gov., the sky is falling opioid epidemic town criers, are receiving some sort of opioid relief from a doctor. After all just about all of them are up there in the years & have some sort of medical problem that required some sort of opioid med relief! Who's gonna say no to a senator, congressman or a representative in politics? They are no more an important human being than us non-gov. humans who suffer from some sort of chronic pain. That ticks me off.

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Re: Bobby C (# 65)

I just don't understand why people keep hitting the down button on every single vote. I just hate it. Because so many of us have such great questions to ask and we've had some great answers come back to us. So whoever thinks they're having fun hitting the down button you're not very nice. STOP IT....

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Re: PAM (# 55)

Unfortunately, this is what Obamacare looks like. When the government runs things, this is how it is. As a former RN for 38 years, I saw this coming. I'm going thru withdrawal now because of cost and being stigmatized. I pray to die soon. I can'T live in chronic pain indefinitely. I don'T sleep so chronically exhausted. I know your frustrastion.

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Re: pessimist (# 72)

The shortage of injectable opiates. Has nothing to do with the DEA. Pfizer supplies over half of these medications. Pfizer have been having manufacturing problems at their McPherson, Kan plant. Limited production has started back up. But full production is not expected until the second quarter of 2019.

The DEA raised the production quotas in February and March for Fresenius Kabi and West-Ward Pharmaceuticals and a third unnamed company.

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I definitely agree that government officials know nothing about pain. If someone wants to die they will find a way opioid are not the only way when they start taking heart and high BP meds to die what then stop them

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Why does the DEA think they know what pts need. They are not living peo plea lives but they sure are controlling them this is turning into a semicommunist state the Pres even wants his own berlin wall when they start controlling our food we eat and where we can go and say what then.

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