Chronic Pain Patients Must Get Organized To Lobby For Their Rights. (Page 15)

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: Hop63 (# 280)

I understand totally. When I first started the Watson brand 10/325 tablets in 2005, they worked great. I had no side affects, except constipation, and I never had a desire to take more than what was prescribed. I took enough to take the edge off the pain, and sometimes less if I didn't need them. They allowed me to have somewhat of a life. After Actavis bought out Watson and changed the formulation, a lot of people (chronic pain sufferers included) were getting sick from the anti-abuse fillers and received less pain relief. Then everything went from Actavis to Allergan.

So I ended up with the Endocet 10/325 after trying many other brands. It was the only brand that worked decent and I didn't get sick from it.

It became total insanity to have the chronic pain sufferers end up suffering more because of the street junkies using it to feel high on. I didn't know you could feel high on it. All I got was some pain relief, like most other people said who also used it for pain relief.

I got tired of dealing with trying to find new doctors who would even write the prescriptions for the pain meds. And then I was being viewed as an addict anywhere I went. Then I ran into the doctors who wanted to take advantage of what was going on and started the medical extortion games. The only way they'd write the scripts is if I took their injections. Either steroids or nerve deadening treatments. I already tried those in the past and they no longer worked. But getting those bigger insurance payouts from forcing injections is what they are looking at.
Doctors nowadays look more at how much money they can earn off of their patients, instead of trying to help heal them.

It's a shame NY doesn't allow the "real" CBD oils to be a possible option for anyone else going through this insanity trying to get what once worked.

I did find a doctor who works with both. He gives his patients a choice of either staying with the pain meds or the medical marijuana products. He asked me if I wanted to use both, but since I did receive great results from the "real" CBD oils, I declined taking anymore of the pain meds.

Government, and politician's, should stay out of dictating on what us chronic pain sufferers should and shouldn't take, and quit forcing the drug companies with what new fillers should be placed in those drugs.

For the added pain and suffering they have put us all through, they should all be jailed. Common sense would say for them to go after the drug abusers and punish them. Don't be punishing the chronic pain sufferers who were only being responsible when using those medications to somewhat help improve the quality of their lives.

Hope you find some pain relief there. Keep researching and looking into other forms of pain relief. If you come across anything new, please share it here.

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Re: Hop63 (# 280)

Hi realize some us have no meds. My doctor puled a random pill count I have been there over a year. I ask could mine or he pick one a pharmacy No so I am as she said there will be penalties I assume being kicked out. I think they the Dr. is required to give one last prescription. If he does not I will turn him in.

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Re: Tins (# 278)

WOW I know exactly what you're talking about. Tylenol does nothing for me. I could eat them like candy and still have pain. You shouldn't be taking 13 Tylenol EVER, they will destroy your liver and kill you. If I was you I'd tell my doctor I'm taking 13 Tylenol a day EVERY day and will continue to do so until I can get something to help reduce my pain. Then see what he says. Nobody should have to endure debilitating pain in order for politicians to further their political career. 'm really fed up with those people that think because they don't get pain relief 20 seconds after taking a pain pill they need to keep taking pills until the pain is gone and when they become addicted its the fault of the drug company trying to get BIG profits or a bad doctor that doesn't care if you get addicted. If their doctor writes an Rx for pain he's trying to help his patient. Many times now I have asked people to give me instances that prove its an "opioid crisis" and the very few times people have attempted that, I've been able to PROVE it was drug abuse. My pain is still really bad and I curse when it hurts so bad I wish I could get out of my body but I know when I take a pill relief is coming. I know what addiction is and you are not an addict. Good luck.

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I'm all for organizing and helping any way I can. People who NEED their medications should NEVER be grouped with those who abuse drugs to, simply, feel high. Medical providers KNOW who is who and what is what and they should not allow the Federal Government to encroach on their patient care by eliminating medications for those whose medical conditions necessitate their access to opioids. Those with well-documented histories of chronic pain should not be categorized with drug abusers. We need to appeal to State and Local governments to allow DOCTORS to decide which patients should or should not have access to pain meds.

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Re: Tom (# 279)

Hi, I tried CBD for about 8 months and it didn't really help for Pain at all sadly.. I was REALLY hoping that they would help me!

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Re: Tins (# 278)

WHOA!! you should NEVER take that much acetaminophen in one day EVER! It will totally destroy your liver AND kidneys! I totally understand why you would, But please be extremely careful with that poison!

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Re: BiggerBrat (# 283)

Legally can pharmacies order what u ask for week head of time or they have no control over the manufactures and they just take whatever they r sent? Don't no if that's true? Any feedback on this question is appreciated. Sue

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Re: HOUSE (# 285)

Were you taking the CBD from a health food store, or were you getting the CBD from a dispensary? I tried the CBD from the health food stores, (hemp CBD oil), and they didn't do anything for me either, and I actually got sick from it. That also made me hesitant of trying the CBD from the dispensary, but I'm glad I did now. Totally different from the health food stores! Maybe it is because it has a low level of THC in the product, but it does work for me. I don't get high on it either! I receive pain relief and end up getting relaxed, but not high.

I also found that after taking the opiates for pain relief, they actually made me get "dope sick" after 12 years of using them. They were actually causing more pain from the years of using them. Or it's most likely they were causing more pain because of the reformulation of the opiates. Since I didn't see any other options for me to have somewhat of a better life dealing with the chronic pain, I wasn't too concerned about becoming physically addicted to it. I never abused the opiates and never increased my dosage during those 12 years.
When I first started on the opiates, they worked great! Until they decided to create the so-called crisis and reformulated the medication.
Adding in the anti-abuse fillers made everyone get sick, not just the street junkies. That should be criminal for what they did to us chronic pain sufferers, and charges filed against BIG PHARMA for reformulating and destroying medications that once worked for us.

With what has happened, the government and BIG PHARMA should be sued for damages for the extra pain and suffering they have caused us chronic pain sufferers. I wonder how well that would work for diabetics or cancer patients, or any other treatable illnesses, if government and BIG PHARMA stepped in and reformulated their medications, which didn't work like they did before, and only caused more pain and suffering?

It's not our fault the street junkies decided to abuse the opiates for so-called pleasure by getting high on it. We didn't feel high on it, we only received enough pain relief to somewhat allow us to have some better quality of a life. They should have just gone after the street junkies, and the doctors who abused their professions for writing prescriptions for the street junkies just to line their pockets with bigger profits. (Which is the real crisis! MONEY ADDICTS/MONEY DRUNKS, which has been turning into the biggest out of control addiction in this country. They don't want anyone to see that though!)

But until they decide to stop treating us all as low-life drug addicts, and stop dictating on what we can and can't take for treating our chronic pain, I had to find something else. Maybe part of what they have done has been a blessing for some of us to get away from the opiates. So far, I have been finding that the Medical Marijuana products, (the real CBD oils), for treating my pain has worked a lot better than what the opiates were doing.

Hope you can find something that works for you! Keep researching and don't give up. Also, please share any information if you do come across something that does work.

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Re: BiggerBrat (# 283)

Thank you so much for your concern. I made amends with my PCP as it’s been a horrible 2 weeks. She said I could resume care with her and have an appointment on Oct 8. I hope she will be able to at least prescribe a little of the Norco as it’s better than this OTC painkiller!

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Re: Tina (# 289)

Glad to hear your news. I hope the doctor understands how much your quality of life is affected not being able to get away from the pain. Any doctor that can ignore a patient taking 13 tylenol a day isn't a good doctor so I would have hoped she is paying attention now how severe you pain is.

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Re: Sue (# 287)

I never had a problem asking the pharmacist for a particular manufacturer. I explained the other generic brands were not working. I also told my pain Dr to put on the prescription the name of the manufacturer as well. If they give you a particular manufacturer, it will do you no good & possibly cause you to take more then what is prescribe. If you have a talk with your doctor, they should be able to help you. If not, you should call pharmacies in your area & ask them if they carry or can order the drug you need. Good luck.

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Re: Sue (# 287)

Legally, not sure. I have never been able to ask a pharmacy or physician to request a particular brand of generic medication. My insurance controls everything. Whatever is cheapest is what I get. It doesn’t matter if it does not work as effectively as another brand. If anyone does know the legality of this situation I would appreciate the answer. I am sure it also depends on the state you live in as well.

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Too late, the bill was passed, and everyone on this site should get the information behind.

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Re: Laura (# 293)

Where can we see this bill? I want to be prepared for what’s coming.

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Let me know what I can do. I'm tired of non medical personnel attempting to make my doctor and me feel like giving me pain relief is a crime.

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Re: Tired of fighting for my rights (# 295)

Amazing how many people I've heard that from. Lots of people tell me they get treated as if they are dug addicts when they aren't, just trying to get pain to manageable levels.

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Re: BiggerBrat (# 296)

I feel like one of those people being treated like an addict. I use opioid meds to manage chronic pain. I do not abuse ( take too much, more than prescribed). I have not gone to other doctors or facilities looking for additional medication or used additional drugs of any kind. I am managing my pain supervised by a physician. I am fearing the discussion which has happened twice when everything changed. Since I could not tolerate the alternative medications or function at significantly reduced amounts I have been able to continue with my regime of the last 10 + years.

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I've been in pain mgnt for failed back surgery for over 22 years my last Dr. Of 18 years cut me loose after I remarked on a reply to him. Gee? Maybe I should find a new Dr. He then said really fast. Ok I'll get you a 30 day letter of separation in the mail. This was June of 2017 it took me until November to find a new Dr. After 4 places and 5 dr.s. I had no idea there was an opioid war. Lucky I had JUST sent my 90 day scripts in the mail so I had 3 months to find one.
But it wasn't that simple. I showed all these places my scripts... I won't write that. They said.. I was on the Fentanyl 200 mcg sucker I used at night breakaway for when I woke up from toss and turn it would take pain away. Then the. Patch 7.5 and a 5 mg Norco for Breakaway. I took myself off the sucker... well weaned myself off with Kratom. Did a U/A at each place.. a copay... Ect..I've been cut to 6.2 wearing two patches now. I'm still in pain. Weather has a lot to do with it work.. home chours around the house.. it's just me... so there ya have it. How could a Dr. Just leave you like that? This guy was always on a power trip. I'm with a Dr. now who understands but his hands are being tied as well. But he has compassion and understanding.

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Re: Karri (# 59)

Same here, I am 58 years old and suffering in pain all the time. I have spondolethethisis (spelling?) which is a vertebra that is slipping towards my spinal cord. Also have scoliosis, stenosis, a fracture, and arthritis. I literally take my fist and punch my hip and lower back area because the pain is so bad, just constantly aching, legs are constantly aching like a toothache. Muscle spasms so bad that my whole back locks up and I can't move without screaming in pain! I also get terrible aching pains in my left arm, regional pain syndrome or something and it feels like something is just eating on the nerve, pulsating like a toothache too. I will sit there and try and massage it deep into the bone because it hurts so g.d. bad. All that my doctor will prescribe is two 10/325 hydrocodones/Norco and two 10 mg. methadone per day which really does nothing for my pain. Not only is this all I can get they've flooded the pharmacies with only ONE mfr. of hydrocodone and it's by Mallinckrodt, it is pure junk! Nothing but a piece of chalk and there's no pain medication in it at all. I've read on other message boards the same exact thing that I am writing here. Evidently, there is no such thing as a real authentic Norco because the pharmacies wont/cant even order them?? LOL, it's like what in the world is going on?? Does someone at the CDC own a stake in Mallinckrodt?? Come on, we're not naive people here and it doesn't take a rocket scientist to figure out there is something going on. It has been proven just a week or so ago that the CDC has been lying about this so called opiate epidemic, it's been over for years now but they're keeping it going by adding alcohol mixed with benzo OD's & the like in with opiate OD deaths, crap like this. If you look at the numbers vs. the population or deaths per 100K the numbers are LOW from opiate deaths and this is with them including the ones that should not even be included!! There may be a heroin and fake fentanyl epidemic but there sure is heck is no longer an opiate epidemic. The CDC needs to stop with their scare tactics and lies, sending out letters to doctor's offices with their recommendations and they ARE just that, recommendations NOT laws, doctors!! Doctors need to understand they do not have to STOP helping chronic pain patients because of these letters and they are not the freaking law. Man up doctors and help your patients because your weakness is so appalling and unbecoming to professionals such as yourselves that took oaths to help people! I am SO sick of hurting all the time!

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Re: C (# 298)

Please tell me what Kratom is? I have read it in so many posts but have no idea what it is. Please explain what it is and where I get it. Appreciate any input. Sue

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