Chronic Pain Patients Must Get Organized To Lobby For Their Rights. (Page 18)

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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I am now forced into a position of going to a treatment center to get medication for my chronic pain because no doctors in IN will treat pain now, folks like myself have to go to a clinic for addiction and treatment and stay there to get pain medication because I cannot get a written prescription for medication yet they say they are not a “pain Managment” facility and I would say 1/3 of the patients that are there are there because they have chronic pain and nowhere else to turn or the doctor they were going to stopped the pain medications they were on because they were controlled substances so they have no other option now.

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It is good to see an article like this! I have been worried about this for many years as I have been on oral narcotics since 2001 and I am 33 years old. I have arthritis and have had five joint replacements, have an amputated left leg, have fibromyalgia, as well as osteoporosis. I cannot imagine even getting through a day without medication and although you do develop a dependence upon it as well as a tolerance, it is good to see an article like this! I have been worried about this for many years as I have been on oral narcotics since 2001 and I am 33 years old. I have arthritis and have had five joint replacements, have an amputated left leg, have fibromyalgia, as well as osteoporosis. I cannot imagine even getting through a day without medication and although you do develop a dependence upon it as well as a tolerance, my primary care doctor and I are good at watching the amount that I take and monitoring my pain based upon these levels. I do get scared that maybe one day these types of medicines won’t be out there. I already take everything out there for my rheumatoid arthritis and several drugs are very dangerous to my system such as the steroids, which have a weekend my bones to the point of breaking them when I roll over in bed. Thank you for making people informed regarding the importance of their rights if they my primary care doctor and I are good at watching the amount that I take and monitoring my pain based upon these levels. I do get scared that maybe one day these types of medicines won’t be out there. I already take everything out there for my rheumatoid arthritis and several drugs are very dangerous to my system such as the steroids, which have a weekend my bones to the point of breaking them when I roll over in bed. Thank you for making people informed regarding the importance of their rights if they are are chronic pain patients with an opioid regiment that is monitored by their physician.

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Re: WIllChillRNMS (# 340)

Well said. What we people who have chronic pain go through in order to have some quality of life for pain management shouldn't have anything at all to do with the long term drug abuse problem that has been ongoing in America. Lumping people that have legally been prescribed pain killers of any kind in with drug abusers is totally WRONG. Yes, there can be problems if doctors don't pay attention to patients that self prescribe. Here in Pennsylvania the Office of the Attorney General has made the political decision that we and our doctors are not competent to administer opioid medications to control chronic pain as part of a patients pain management and thus should be removed from taking any habit-forming drug in that quest. "IF" we cannot get the public first and then the politicians to understand there is a huge difference between us and people misusing Vicodin purely for the purpose of attaining a "HIGH", our only hope is going to be a rash of politicians and attorney generals being in situations of chronic pain and NOT being able to obtain pain meds and suffering from intense pain. One of our local doctors was set up by the PA AG and prosecuted. The AG's office sent a person to this doctors office who claimed he was hurting. Courts have determined pain is subjective and the doctor gave the sting person an Rx for pain and she was arrested.

Thank GOD she was found innocent but the stage was set in PA if you are NOT certified to treat pain, you don't prescribe ANYTHING. I live close enough to the NY border that my personal doctor has always been in NY. I'm really old and I've been on various pain meds over the years coming up with the right pain med, dosage, quantity, etc. that works for me. Everybody that knows me, including my wife comment they have no clue (glazed over eyes, etc.) that I take pain meds. Bottom line, how my doctor and I control my pain is none of the business of the government. I was at a point in my life I had no quality of life at all and was considering suicide as the ultimate pain management. Again, unless politicians are somehow forced to experience these circumstances, they don't give a rat's patootie if you are suffering in agony. A while back I wrote a letter to PA Senator Pat Toomey. From the content of his response what he heard from me was blah, blah, blah because his response was yadda, yadda, yadda., total BS that made it clear to me he doesn't care, doesn't understand the problem and looks at it as a purely legal and political problem. I'm guessing most of these politicians get few letters from people like us and LOTS of letters from people where legal opioid Rx's have been abused and people calling it "opioid crisis (falsely).

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Re: Annamarie (# 342)

If you are that worried, ask your Dr about a pain pump. They can place on your back flanks if you want. Mine was placed on my lower left side of my abdomen. I have it refilled 1 1/2 - 2 months. It depends on how much you need for relief. It really helped me. It’s a continuous feed that runs up to my T10 vertebrae. Also, I never have to worry about if I have enough or having to buy more. It was a very simple operation & ur Dr can put in so many different meds so u get the relief u need. Hope that helps you.

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Re: WIllChillRNMS (# 340)

I’ve said this to many chronic pain patients before. Ask ur PM Dr about having a pain pump implanted. It’s on a continuous feed & ur Dr can put several different meds in it. One of the best thing I did. Hope this helps u.

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Re: marin5 (# 336)

I am so sorry! Yes, we are treated poorly.....

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Re: WIllChillRNMS (# 340)

We always say we need to fight back but I look at some of these replies and they’re back in 2014 I said that we should get a petition or whatever it is make sure it goes right we can get everybody signed it I am in such pain I can hardly stand it. And I was on my medication for 10 years with a good job but now I can’t work I can’t do anything my house is a mess and I’m hurting and all you do is sit around and cry. Let’s all get to gather and the sword seriously if everybody’s gonna read this let’s do something please I’ll do anything I can’t I’m just not good at writing a petition but I can try to get it signed by everybody in the world or die trying

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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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Re: RIpainlobby (# 1)

I agree with you I have pain in my knee everyday and if it wasn't for my pain medication I don't know how I would deal, I fell and broke my patella in my knee in 2015 I never even liked pain medication till then. I remember when I used to say something to my mom & brother for taking pain medication and I will never say anything to anyone anymore cause you never know whether someone is hurting or not till you go through it yourself.

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Re: Cynthia (# 348)

This is the first smartest idea I have seen so far..it kinda reminds me of a few kratom groups I found through Facebook. Instead of just sitting around complaining to each other get up and try to do something about the problem. Look how far the a.k.a. as come so far in a short amount of time. I'm not a pain patient but I follow, learn and listen. I will always fight to win this topic because they started this so called war and it's the pain patients who got affected. They still have drugs on the street. And if we keep letting the government tell us or the doctor how many pills you're allowed to have, the problem is American freedom... I mean if I was a doctor and paid or was still paying for the college tuition education I'd be pissed, like since when does the insurance company know what's best?

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Re: Charlene (# 350)

It isn't the insurance companies that have manufactured this so called "opioid crisis", it's the politicians looking for a raison d'etre to look like heroes to the public when they supposedly "FIX" the problem. They go around dislocating their shoulders patting themselves on the back. Legitimate chronic pain patients have been lumped in with druggies because in many instances it's their drugs that are stolen or its people faking pain to obtain opioid drugs only for the purpose of selling them on the street. Instead of looking for ways to limit how criminals get opioid drugs and prosecuting them, the easy solution is to simply prevent ALL people from obtaining opioid pain killers. When the phony problem is supposedly solved they can campaign what great politicians they've been.

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Re: Susan (# 349)

I would hate to inflict pain on any person but these politicians screaming "opioid crisis" that want to prevent people with legitimate pain from using opioids as part of pain management need to experience pain that can only be relieved by pain killers. If I could simply tell my pain to go away I could write up how I do that and sell it for millions.

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Re: Cynthia (# 348)

Visibility is the best option and letting politicians know we are NOT part of the problem and shouldn't be punished is what we need to do. The more venues and people in them the better.

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Re: Charlene (# 350)

Thank you Charlene! I did make a mistake on the date of our first commercial, it was last night and will continue on for, I think the next week or so. Hopefully I haven't forgotten anything else, I am running around and posting/replying so much that I do overlook a couple of things! Again, thank you for your awesome reply. Take care~

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Re: BiggerBrat (# 353)

Thank you for your reply. Yes, you're correct and that's what our group is doing by having a rally (& more), at each State Capital. Thanks again and take care~

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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: Cynthia (# 355)

As usual I am late to the game. when is the rally? thanks!

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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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Re: madashell (# 357)

Just pulled all the rally info for California off Facebook. and of course I shared it. See ya'll in Sacramento on January 21st.

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Re: Anjali (# 358)

I totally agree with you. Like I've said many times, courts have repeatedly stated that pain is subjective. NO politician or government official is qualified to state how great or how little you pain is or how debilitating it is. The treatment of pain should be totally between the doctor and patient. I won't disagree that doctors should have some kind of training in recognizing pain and the degrees a person can experience. My doctor often asks from 1 to 10 with 10 being the worst, how bad my pain is. And many times my reply has been a number higher than 10. I've explained to my doctor that if it were possible to transfer pain and I transferred my pain to another person with no pain experience they would immediately go into shock and die. Gotta tell you, when I get the power tools out to work on stuff my wife gets very scared because there's been many times I'm leaving a blood trail and didn't know I had injured myself until I saw the blood. My pain tolerance level is so incredibly higher than normal people. I've written the letters to the editor about what a scam the whole opioid crisis BS is. I've written to my congressman and senators too. For now, all I get back from them is BS responses.

I wish I were a younger person because I know from personal experience how you get politicians to wake up and pay attention. 16 years ago I and some friends created a taxpayer group in our county to confront corruption and tax and waste policies of government and school districts in the county. We got a lot of publicity and we were able to effect huge changes but only when we went after the politicians and exposed them. We didn't win every election but we got rid of a lot of corrupt people and we prevented a lot of bad and corrupt people from winning more elections. We lasted for about 10 years and I can say to this day our county is the envy of a lot of counties in the state. Age and health issues caused me to have to back out but I still remain politically involved, still write the letters to the editor and still name names when it comes to bad politicians. I'm too old to lead the charge but I can give help and advice to the person or people that want to go after the idiots that would lump legitimate pain sufferers in with dope addicts and make our suffering even worse.

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