Chronic Pain Patients Must Get Organized To Lobby For Their Rights.

Updated

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.

557 Replies (28 Pages)

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1

I would love to see that happen. It is disgusting the way that we are treated and talked down to like a scolded 6 yr old. Im picking up my RX, not selling crack to babies!

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2

I have chronic head pain and have been given Vicodin and pain patch for pain management - my doctor retired and I live in Springfield MO (the bible belt) and am treated like a scumming drug addict trying to find a doctor that will help me has become next to impossible - "a controlled substance" after all.

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3

I agree have constant, chronic nerve pain and back muscle spasms from taking place of the muscles holding up the paralyzed arm, been 35 years - they want me to get the ephederal (sp?) shots-which I've never gotten help from-it's not inflamation.-I had a great pain doctor /neurologist but after my divorce could drive the 20 miles to see him--excruciating pain-crying all the way home, These new doctors are so afraid too give you what works-or maybe just want what puts more money in their pockets. Somedays I just sit here alone and cry. Movement makes it act over the limit-have no life any more-have thought of suicide-no pain after that but don't think I could do that. May try to see if that neurologist is still there & find a ride. I am not an addict-just want less pain and a better like!

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4

I just signed the petition "Barack Obama: Stop the DEA from interfering with chronic pain patients and their medical professionals." and wanted to see if you could help by adding your name. Our goal is to reach 100 signatures and we need more support. You can read more and sign the petition here:

change.org/p/barack-obama-stop-the-dea-from-interfering-with-chronic-pain-patients-and-their-medical-professionals?recruiter=226947221

Thanks!

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5

Amen. I have Parkinsons and have been prescribed Vicodin to take in conjunction with Advil for pain associated with the disease. When husband switched jobs and we now have Kaiser where no one will prescribe medication...only PT which I've had for years. My life can be likened to quickly becoming the tinman...immobile with a tear stained face. I friend wants to take me to a doctor in the Bahamas or Mexico, but I'm a very scared. Is it eve

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6

Amen!!! I agree with you 100%! Anything Government controls is " Out of Control". They can't manage a once a year transaction ( tax returns ) without a Complete Disaster at who's cost..!? Ours !!! Yes we must fight for our rights! Where do we begin! I know it seems like there's no way " I " or " you " could possibly solve this.. I do know this POWER IN NUMBERS!!

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7

This battle won't be won because chronic pain does not kill and drug addiction does. The cause of death on a death certificate for someone who has chronic painhas never nor will ever be chronic pain, because it does not kill. The argument holds no weight. The politicians view is that it is better for those with chronic pain to suffer than for those who are drug addicts to die.

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8

I AGREE, BUT WHAT DO WE DO? I HAVE BEEN TRYING AND MOST OF US ARE SO ILL WE DONT HAVE THE ABILITY TO DO MUCH. I THINK WE ALL NEED SOME GOOD ATTORNEYS TO START LITIGATION AGAINST THOSE WHO REFUSE TO TREAT US. OR HAVE MIS TREATED US AND GO TO OUR REPS AND SEND MESSAGES LIKE THIS IS ONE, IS SOMETHING WE CAN ALL DO. IF I DIE IN THE NEXT FEW WEEKS IT WILL BE THEIR FAULT NOT MINE. IT IS MALPRACTICE.

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9

Chronic pain does kill.The cause of death on most death certificates will read heat failure complicated by respiratory failure if a secondary cause is given.If you are under a doctors care @the time of death I guessing heart failure. How ever if you have opiates in your system it may read complicated by opiates.sick but true .

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10

We need a civil rights attorney that has the kahunas to take this on! We re being discriminated against ,made to sign pain contracts under duress, submitted to illegal search and seizure and treated like criminals. I have chronic pancreatitis due to gallstones and it is horribly painful. I have lost respect for doctors who are not standing up for the patients. We have opiate receptors in our bodies for a reason and they have skewed the numbers to make it look as if there is an epidemic when there is none. Statistics from the CDC in 2014 was 14,000 over dose deaths (and that was not all from opiates) 14,000 from a population of 317 million in 2014 does not make an epidemic, there is more behind this than over doses! We need to remind these politicians who forgot WHO they work for that we 100 million strong pain patients do in fact VOTE!

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11

I agree 100%. If you have never lived whit Chronic pain how can you call it abuse? Visit some of yhe camcer patients & other people that are truely in pain 24 hours aday. Until you have lived it...don't judge people who are truly in pain Please!!

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12

Re: BL (# 7) Expand Referenced Message

Where i live it has not saved lives. The people that are cut off their pain meds are either going to the streets or killing themselves.

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Re: Goatc (# 12) Expand Referenced Message

Tragic!!!!! Nobody know like we that are in pain every single second of the day.
I just prayed before getting out of bed,Please give me the strength to get thru another painful day. I refuse too just give up. I didn't fight so hard too get this fat too let some inconsiderate Dr take it away! Have a blessed!!!!!

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Re: Goatc (# 12) Expand Referenced Message

Living with pain 24/7 is not by choice. I have a very good Pain Management Doctor that I trust to do the best for me. I have had to go through multiple changes in medications over the years due to reactions to the med, the med becoming no longer effective, or side effects. It's not easy trying to keep control of my pain but I trust my Doctor to do what is best for me and he has. I must say he does control what I take and how I take them. He does not easily give out pain medications even though I have been with him for years. I am currently on hydrocodone and hysingla and they are working for me, keep my pain at a tolerable level most days.
My Doctor and I have a working relationship that is best for my health. He is a Doctor with years of training and practice. We do not need a politician, pharmacist, or dug store chain telling us what is best. Yes there are those that abuse the system, and Doctors that dole out prescriptions with out need but there are those of us that live by the rules.
I frequently receive advice from family and friends on how bad pain medications are for me and that there are alternatives. They don't know that I research alternatives and talk to my Doctors about reducing my use of pain killers but come back to what my Doctor prescribes for me, he knows best.

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15

Thank you for a wonderful post, that touched my situation.
I appreciate you.

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16

Re: Kristyne (# 15) Expand Referenced Message

Kristine, I hope you have a Doctor as good as mine. Finding a Pain Management Doctor that has compassion and respect for their patient is hard to do in many cases. I have only had two over the last fifteen years and my first scared me with the ease he dispensed pain medication. I had to control how much I took. Looking back now it scares me even more. Having been on pain medications for so long I have fought addiction and to date still maintain a fine line between addiction and pain control. It can de done with the help of a good Pain Management Doctor.
The pharmacy we choose or the politicians we elect can’t and shouldn’t get into the mix. It is a delicate balance between a well trained Physician and the patient.

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17

Re: TG (# 4) Expand Referenced Message

I just tried to sign it and it is closed!!! Another one needs to be started! I do not know how to do that, maybe you can! I am all for it and I will be the first one to sigh it!!! Pam from Ohio.

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Re: Kelly (# 16) Expand Referenced Message

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: PAM (# 17) Expand Referenced Message

Hi, I'm also from Ohio. I guess I'm lucky I have a pretty good doctor. But the doctor I had before that, it was just unreal. I have been done so wrong as many women have been. So many women were raped and molested by this dr. And now we're going to have trouble getting our medications. Just unreal. #Sad

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20

I live in Las Cruces, NM and there have been doctors that over prescribed in the past and now it is next to impossible to get the pain medicine needed for chronic pain. One doctor got convicted and others have just left. I have gone through just about all pain doctors in tis city and got no where. I now drive to El Paso,TX t get what I need plus the attitude of this doctor is so much better. This is just another example of what someone has to do to get comfortable enough to be able to do things. From what most others are saying about their problems I guess I can say I am lucky to find someone. Good luck to everyone.

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557

I totally Agree. I have never did drugs but now that I'm fully disabled and dependent on my medicine for some what quality of life.

For one thing, opiates have been fully tested for 10 years as was required and a small package was given to our veterans when they went war in case they got shot but now pharmaceuticals are making so many different drugs and none of them the fully amount of years tested, which is why so many people end up with more health problems, some even leading to death. That's why I wouldn't take any of these drugs because they don't really know what the end result will be. We all know it's all about money.

Not only that, their allowed to put less medicine in and more fillers, some which interact with the medicine and might not even work for you. When a doctor orders the same quality you have received in the past, you end up running out because they don't put the full amount of medicine it. Even though the doctors know this, they might cut you off because you run out of medicine or the medicine don't even work for you because they change and go through a cheaper manufacturer so they have different fillers in it. I have talked to several doctors and some pharmacist. Some of them were honest with me because I am highly allergic to alot of medicine and told me this too. Also, when your in severe pain you could have a heart attack or stroke as told to me by the hospital because it raises your heart rate.

They are so wrong putting someone that really needs the medicine for some quality of life with kids that just want to get high. Those that are trying to be a judge will get old some day too and with the environment what it is today, will also need medicine at some time, so when you see more suicides from old, disabled, and veterans then you'll know why. It will be on the backs of all of those that want to judge us. If they care, they would do something about it and understand what "quality of life" really means.

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556

#dontpunishpain

We organize here in Wisconsin and probably across the country I'd imagine to go out and protest what is happening to us. I shared this on Facebook and I hope that's okay. Most people are unaware of what is really happening and listen to the lies of the hyped up media and as you said, indeed, politicians looking to further their careers and look like they're doing something great. When the CDC has a board filled with pain med Nazis what chance do we stand of living a halfway normal and decent life anymore? This has been going on for years and yes the suicides need to be tracked as well as the horrible living conditions of pain patients forcefully tapered off their meds and now bed bound and contemplating suicide.

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555

I've been in chronic pain management for 30 years now. Up until this past year I didn't have any problems with the pharmacies in New York for my prescriptions (I live in PA). U had my 7.5 mg Vicodin filled at a Walgreens for years then all of sudden they wouldn't call me to let me know my Rx was ready until several days after the day I would have picked the Rx up. Then with the next time the Rx was renewed they would tell me my Rx wasn't ready when I called and they would tell me because of the delay in my last "pick-up" date, the day I could pick the Rx up was now changed to a new day and they would let me know when the Rx was ready, but AGAIN it was several days past the "new" pick-up date. I had my doctor change the pharmacy to Rite-Aid because now I was trying to make a 30 day Rx last for almost 60 days from both pharmacies pushing the pick-up day further and further out. I've since had my doctor change to a pharmacy in my state and we'll see how that works out. I think the DOB's in NY just don't want to deal with pain meds and have come up with a method to force people to alternatives. The NY law says I can't pick up a Rx before the last day/date of when I picked up the Rx the month before. HELL, the way things were going my doctor could write me a 30 day Rx and I'd be picking it up a year later. The government should NOT be involved in my health care in any way. The whole thing is a political con job for control over the people The ACA would more appropriately be called the UCA (unaffordable care act). My doctor knows what I need and don't need. SOB government bureaucrats have no clue but the politicians want government bureaucrats dictating what health care you can and cannot get.

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554

Send Me The Info! Kate Brown governor of Oregon is also putting pressure on the Oregon Pain Management's doctors! I have been deemed Stable on my meds for Chronic Pain for 23yrs! For the 1st time my Night Time dose was removed, due to my Amazing Doctors Fear, Rightfully So Of Losing his Lic! Good quality pain management is hard to find! My pain level should not be dictated by a Politician Views when they have never lived with a Spinal Injury or Worse! All Patients Can Not Be Treated the Same!

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553

Re: Jesse (# 552) Expand Referenced Message

I also live in Lucedale, MS and have been a chronic pain patient for the past 10 years. I take oxycodone 20 mg twice daily. I was a patient of Dr. Dunk Ellis III in Mosspoint, Mississippi for five years. He was a great doctor and was one of the only ones who would write your pain meds even though the DEA had brought down so much unnecessary scrutiny upon pain doctors everywhere. Around December 2019 Dr. Ellis had to stop writing pain meds. I’m not sure of the entire reason behind it but I know it was Government bureaucratic bulls*** that did it. The governments concern is supposed to be for the patients with chronic pain who were prescribed opioid medications. Where was their concern for my mother who could no longer get her 40 mg oxycodone three times a day when they shut Dr. Ellis down? Where was their concern for her health after her car wreck crippling her back and legs for life? Where was their concern while she was dying in my arms from the heart attack induced from her withdrawals? Where is their concern for any of us chronic pain patients? It’s not there. I’ll tell you where it is. It’s stuck in their wallets and their bulls*** campaigns to try and get reelected by telling any and every lie they think we want to hear.

I have to drive to Mobile Alabama from Lucedale, MS in order to see a pain doctor. But if anyone is looking for a good, no make that a great pain doctor, then call; Dr. James M. Crumb @ Mobility Metabolism & Wellness, PC in Mobile, AL. (251)-345-0773.

Dr. Crumb is a great doctor and actually cares about your pain and cares if you have your medicine that you need. The only complaint I would have about the business is not about him, because he’s awesome but his receptionist and some of the nurses, not all of the nurses but some of them are so very rude and their bedside manner is that of an animal. If you can deal with a little bit of their crap I’ll tell you now that it is well worth it to get to Dr. Crumb and be one of his patients. He is a highly intelligent physician so if you’re thinking of going in and trying to bulls*** him or lie in any way just to get pain meds then I would think again before seeing him. If you are a legitimate pain patient and you have been done wrong by different pain clinics and different pain doctors then you will know what I’m talking about when you see him for the first time. You can actually be honest with him about anything such as taking a little more of your pain medicine due to being in more pain than normal or taking a different pain medicine not prescribed to you under circumstances where you didn’t have your meds and needed them. He won’t cut you off for that like most of the doctors would. If you’re honest with him he will be honest with you and do everything he can to help you live with your pain. He is a great man and I have much respect for him. For me to say this is really saying something good because I don’t respect any doctors because I’ve been lied to and tossed out an abandoned so much by them. But Dr. Crumb definitely has my respect. I’m glad to have a doctor that I can have an honest relationship with and not have to worry about him cutting me off because of stupid things as long as I’m honest with him. He is highly intelligent so I tell you again, if you plan on trying to lie your way into it then think again because you won’t get anything past him. But if you’re legitimately in pain and need the meds he’s a great doctor to see. Again I want to say you will have to put up with a little bit of bull crap through his staff but if you can do that this man is an awesome pain doctor.

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552

Thank you so much for speaking up. I am fully disabled and waiting on my 2 back surgeries and neck surgery. If there was a way to get everyone to rally about this and quit putting the disabled, veterans, and seniors in the same category as young kids that just want to get high I will be there. Give us at least a little quality of life! (Not to mention they are taking alot of the medicine out of the pills and replacing with filers that sometime interfere with the medicine. People can only take so much severe pain, not to mention it can cause you to give you a stroke or heart attack because your blood pressure is through the roof. So thank you for speaking up.

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551

You are so right! So many chronic pain patients can no longer get their medication to literally save their life. I've been hearing about so many people now that have died from complications due to untreated pain. Makes me sick what's happening to pain patients right now and has been for years because of the CDC in their stupid supposed guidelines. This must change! As you said and I agree, we must be the ones to make that change. We must make them hear us loud and clear. They don't want to listen we need to organize better as if unified Force, vote them out. Thank goodness for the advocates we do have that are trying to make them listen and are making us some headway.
#dontpunishpain

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550

Re: Stacey (# 10) Expand Referenced Message

I realize this ia an old post, but had to reply; IF this is your medical issue YOU should have had gallstones and gallbladder removed, and YOUR PAIN WILL BE GONE, THAT IS WHAT YOU WANT; RIGHT!?

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549

Re: Charlene (# 544) Expand Referenced Message

Welcome.. I do and have been taking this med for quite awhile... Anxiety, panic attacks. It's the only one they kept me on through the changes made with the so-called Opioid Crisis
Lost Lorcet, Soma that had enabled me to keep working throughout my 40's and 50s. Only 1 Soma at bedtime for sleep and muscle spasms, a tried and tried med from.as far back as the 60s. I may have been dependant, but always responsible in using meds, orally, the way they have been prescribed.. Now the Tylenol 3, about all I can get without going to pain management. So do.my best with what I can get and hope that the powers that be get their heads out of their butts and do right for the pain patients who need their medications
Always got to keep up the good fight, but how? It's a vicious cycle, especially when pharmacists can refuse to fill if they don't think you should have these prescribed by doctors. They have overstepped their bounds of power to do what they want... What about what WE WANT AND OUR DOCTOR DEEMS IT NECESSARY TO PRESCRIBE ACCORDING TO THEIR PATIENTS NEEDS. ????

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548

Re: Charlene (# 547) Expand Referenced Message

According to my clinic cdc says no more than 50mg morphine or equivalent a day ..... hydrocodone is 1 to 1 & oxycodone is 1.5 to 1 (10mg = 15mg equivalent to morphine)

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