Chronic Pain Patients Must Get Organized To Lobby For Their Rights. (Page 9)

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: madashell (# 154)

I know for a fact all prescriptions for controlled substances are already being tracked. My pharmacist informed me. The pharmacies are tracked as well as prescribing doctors. This doesn’t sound like the America I was born and raised in. Working class people with pain need medication to continue working to support themselves and their families. If there is no reason to suspect abuse, it should not be a problem. I have been on same dosage for over 10 years, have never used additional “illegal” drugs, or overdosed. Yet I know my file has been “summoned” for review. This was before the “war on drugs” became the catch phrase of the day.

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Re: Tom (# 159)

Thank you for the exceptionally well written post. You are so right on so many points and mirrored my thoughts exactly. I have gotten 'off track' and need to get back on point.

I don't like moaning about myself and my pain. But, if it helps our cause in any way, I'm all for it.

Without my pain meds, and I'm on a very low dose, I cannot get out of bed. I cannot make coffee, nor brush my teeth. I cannot dress myself and walk the dog. I cannot make a decent breakfast, nor perform any useful tasks, including grocery shopping, paying bills, anything that involves movement and concentration. Most people perform these easy, every day tasks without a second thought. Its just normal to be able to get up and carry on. Well, I can't. My illness's and therefore my body will not and cannot function unless the all-consuming pain is dealt with first. If a pill prescribed by my doctor allows me to perform what are normal functions for most of the population, then what's the big deal? I'm over 60 yrs old, who cares about addiction? You alphabet agencies don't care about pain.... what's the difference to you? It's all in my head anyway....

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It's a quality of life issue. My doctor years ago said he didn't want me to become addicted. BULLS***!!! When you're older and retired that doesn't matter if you are NOT functional. I told the doctor at me age, who cares? Without pain meds I would me non-functional. As it is I grit my teeth much of the day, the main reason why my 30 day supply runs past the 30 day limit. Before I was on pain meds I was being "sleep deprived". As all of us in this situation already know being sleep deprived can in fact kill you and it makes life extremely uncomfortable. At one point in time I had gone 7 days without sleep because of pain. Apparently had finally passed out because I woke up sitting behind the wheel of my car in my underwear ONLY. Pretty scary. Told the doctor and he finally put me on narcotic pain meds. I still have some minor sleep issues but not any that will be killing me.

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Re: madashell (# 155)

Thank you for this information. DEA is still taking letters also. Nothing will move quickly to help correct the mistreatment of chronic pain patients. However, we've got to get the strict "suggestions" for prescribing reversed. The alphabet agencies, special Congressional committee members, President, Congress and the local government need to hear from us in various ways. We must not forget to send letters to the media sources. They need to report the truth not propaganda. Chronic Pain Patients are suffering and dying from treatable conditions. Suicide of chronic pain patients, according to information shared at a DEA meeting, has increased by 45% in the last two years alone. We're losing the ability to function as we could.

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I totally agree this issue of pain meds should b left to medical profession not politicians. where do I begin?

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I am here to speak of Chronic Pain. I can say I have been suffering with chronic pain for years. I have osteoarthritis, in my knees, ankles. I have a bulging disc in my neck. and Oa in neck and lower back. The pain is always there. 24/7 every minute of every hour of everyday. I take hydrocodone for my pain. If I did not have my pain meds. I would not beable to do anything but sit with a heating pad on my knees and spinal column. I do not abuse the pain meds I receive from my Dr. I have joined pain websites and not of these people abuse their pain meds, none of them. I think for you to understand what we go through. You need to walk a mile in our shoes. You say that people abuse their pain meds and over dose, These are not Chronic Pain patients. These are what I call drug seekers. The problem is if you had to live everyday in pain. You would understand what we go through. We cry cause we are in pain. Take away our medicine and people would not be able to stand it. I believe more people would take their lives. Why you ask? because living with pain is a awful way to spend your life. I know I have been in pain for over 20 years. Without pain medication, I would not beable to do anything. Think about that, nothing. Would you like to spend your life doing nothing. I doubt it. This subject is important to all who suffer. Please do not take away our pain medication. Do not make us suffer anymore than we already do. Know that I am 67 years old, a women. Who in my opinion is broken due to all the pain I did not ask for, nor do I want. But I am stuck with it for the rest of my life. Know this, That I am not a drug seeker, I take my medication as prescribed by my Dr, only 3 a day. I hope you understand this, and realize that we are Moms and Dads. Grandparents. We are human beings who suffer and I am voicing my opinion. Hoping you understand what life is like for us. You know those walks you take on the beach, will you are very lucky. Most of us can not.

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Re: Gayle (# 166)

It is a quality of life issue. I and a lot of people I know take opioid pain meds because of injuries or autoimmune diseases that leave us debilitated without pain meds and we do not abuse our medications nor do we ever sell them for profit. EVERY instance I've seen with overdoses and deaths has been directly caused by abusing the legal medications. And to many of those have been from people stealing other people's pain meds or doctor shopping to get extra pills. My Rx is for 30 days and every month for 20 years I go 35, 40, 45 days on a 30 day Rx before I ask my doctor to renew the Rx. Not saying I haven't had some months where I hit close to or exactly on the 30 day mark. Some months are worse than others. Before I was put on opioid medication I nearly died from sleep deprivation caused by intense pain. The doctor I had at the time refused to give me anything for pain because he was afraid I would become addicted. I explained to him, what would be worse, becoming addicted to a drug or dying from sleep deprivation? He wrote me the Rx. I had also told him I had no life and it was impossible to plan anything with pain controlling my life. We do NOT have an opioid crisis but we do have an opioid abuse crisis. I've talked to my doctor and friends about this and we all agree on that. What the politicians propose is a band-aid cure for a problem that doesn't exist. Doctors need better methods to make sure patients aren't getting meds from more than one doctor and they need better methods to determine who really is in pain before writing an Rx. If I cannot get my vicodin anymore, it means politicians have turned a law-abiding citizen into a criminal because i'll have to buy pills on the black market or commit suicide. Surgery isn't going to correct all of my problems.

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Ì am having trouble with my doctor describing pain meds.He tells me they don't work.He tells me he is under pressure from the College of Physicians which they say otherwise. We made a deal for one year of which he broke. It seems like he isn't looking at the causes of my pain.I can't live in constant pain. How can I get help?

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Zane (# 167) --

Hello, if your Dr won't prescribe the right meds for you, then you will have to find one that does... I know how hard it can be, but what choice is there?

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Zane (# 167) --

Change doctors. He doesn't want you as a patient. Until a person has lived with your pain they don't have a clue.

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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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I agree with your statement on Patients who have Chronic Pain. How we suffer day in day out. The politicians have know idea what we go through. But are willing to throw their voters under the bus. To stop drug abuse. But they are wrong, The patients with chronic pain do not, and I repeat do not abuse their hydrocodone. We take our meds as directed by our Doctors. The drug abuser's use and see many Drs. not just one. They do this so they can get high on these meds. We on the other hand need them to have a half way normal day. Let the politicians struggle with chronic pain, either from arthritis, Fibro, disc problems in neck and backs. Pheripheral Neuropathy, and other pain causing problems. See if they like spending their days, a second at a time, minute by minute, hour by hour to make it through the day. If they decide to take away pain medications from Chronic Pain Patients. I know that I would not be able to have a somewhat normal life. They say they are concerned over people who abuse their drugs and overdose. These are druggies looking for a high. Not to relieve pain. I can tell you that with my pain meds life would be so painful I would not want to live. I know other Chronic Pain Patients who feel the same. Spend a week in pain and you might understand what I am talking about. Our medications help us to live as normally as we can, with out them, we could not.

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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: madashell (# 154)

I don't know that the DEA is allowed to track our prescription under HIPPA although someone would have to read it and there may well be an out for the government although that kind of defeats the whole purpose because once a secret is no longer a secret it has a way of getting told to the wrong people.

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Well said Liberty, I couldn’t have said it any better myself. I’m disabled and have been a pain patient for years and I have several conditions from being in a job related injury’s then sustained more injuries from a car accident and I need my medicine just to help me get through the day if you get any info on getting organized on this subject let me know how I can help out anyway I can. Thanks for your concern for the people who have legitimate need for the people who suffer all day every day.if they keep us from our meds. I believe a lot of people will turn to the black market heroin or fentanyl then maybe people will see more and more people who will OD on who knows what. And the government needs to stay out of medicine that a MD has deemed appropriate for the people who will benefit from joining together for standing our ground. Come on let’s stand together and and vote for the ones that stand up for our rights.

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Re: Anjali (# 172)

Hi Anjali, I like the idea of a lawsuit, a class action would be even better right? But I'm wondering who will you be suing? I'm in California also (what a mess) and if you are comfortable with this, please (out of curiosity) ask your attorney about a class action suit. Wouldn't that be something to behold, to see the a-holes brought to court and having to answer for the crimes they are committing against us legitimate pain sufferers. I don't know if this would be something that would make it into a court room, but wow! I'd travel (somehow) to wherever this event took place. I'd crawl if I had to, just to witness this life-changing event.

On a different note, I find it interesting that the majority of us pain sufferers are of the later-in-life generation. I know there are quite a few youngster also, but I'm guessing Most of us are older. And why this means something to me I'm not sure, but it's often in what's left of my brain, and I feel it's important to our cause.

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Re: myst (# 171)

Checking it out now and I wanted to say thank you for taking the time to inform us...well done.

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Re: Hop63 (# 161)

Hello....
I had my pain medication filled at the same Pharmacy that I have been going to for quite a long time. The pharmacist said it would be about 35 minutes so I did my shopping and went on with life. I went back to the pharmacy to pick up my pain medication and he told me that he called my pain doctor to make sure my pain doctor was aware I was taking Klonopin. And I said to him why would you do that? And my pain doctor knows everything and he said oh yes he said he knew that you were taking Klonopin. So the pharmacist went on about Narcan. He said since I take a narcotic and Klonopin and a muscle relaxer that I had to have Narcan in my home. So I felt humiliated I felt stupid so I went ahead and purchased it through my insurance for $25 and change. So I don't know if I did the right thing or the wrong thing. Moral of the story is what the hell is going on in the United States of America. I call bulls*** on all of this.

Pharmacists now can prescribe Narcan to patients without a prescription from their own doctor. All they do is call and talk to the doctor and the doctor okays it. I don't get this at all. I think pharmacists have way way too much power. I told the pharmacist I don't abuse my pain medication or any other medication and he said oh I know that but we just have to concentrate you.

Does anyone have any answers to what I just went through on the 21st of August? Thank you.

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Re: HOUSE (# 169)

Just be careful. The government is watching for people who are doctor shopping. It’s a red flag for them. I totally mderstand your predicament. It’s not fair for us people that can’t find relief. Hope you find a decent doctor.

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