Chronic Pain Patients Must Get Organized To Lobby For Their Rights. (Page 27)

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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521

Re: Hop (# 520) Expand Referenced Message

Hate? Give me an example of my "hate" I have no idea what you are talking about. Aside from my nic, you have nothing to say about me or you would have said it by now.

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522

Re: Alan E Hall (# 517) Expand Referenced Message

I wish there was a way to testify on behalf of the drug manufacturers. I've tried to figure out how to contact them and get no response. This whole thing is a scam because now they have somebody they can sue, something they never had in all the decades and decades of drug abuse in America. This is like blaming people in the lumber industry for house fires because houses are made out of wood. What in the hell do the manufacturers of pain medications have to do with people abusing drugs? Or doctors not informing patients of potential problems? When I get my Vicodin it comes with all kinds of warnings. I sense some incredible stupidity in all this and those of us that responsibly use opioid pain meds are forced the pay a penalty for other people's stupidity. I'm fed up with it. How about thousands of us testifying on behalf of the drug companies?? I don't know how to make that happen but I'm willing to testify.

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523

Re: BiggerBrat (# 522) Expand Referenced Message

I've been real busy with info found on the website "pain warriors unite". It tells you who to contact, how to contact them, educational materials to convey the msg & more. September is pain awareness month & the contacts listed have been swamped with phone calls, emails, etc.

Good luck!

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524

Politicians are 'SPECIAL' I would be willing to bet they can get any medication they need and didn't have to suffer what we American citizens have been going through... that'is why it is not a priority for them. Their main interest is using illegal, recreational pain Med users to deprive all Americans their right to a pain free life. Plus they are too busy trying to impeach the best POTUS we have had since Reagan.
Give the legitimacy of pain meds back to the patients that need them to have a full life free of pain and stop Jeri nt us around to take control of anything the American people are entitled to. Ex: just yesterday in Jacksonville, FL, COUNCIL MEMBERS DID NOT PASS A DECRIMINALIZATION FO.R AMOUNTS OF MARIJUANA,UNDER 20 GRAMS NO MATTER THAT 84% OF THE CONSTIUENCY OF VOTERS WERE TRYING TO GET IT VOTED IN. IT'S A CROCK!

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525

Everyone should attend the "don't punish pain rally" on October 16th from noon - 2:00 and put a face on it.

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526

Re: Optimistic (# 525) Expand Referenced Message

My heart will be there; unfortunately I’m disabled without pain med (arghhh) & can’t get there. Sad bcuz for 20 yrs I could’ve been there physically but I was tapered to the max & the little generic percocet I do get obviously the secretively reformulated med is like taking a sugar pill! Sad all round. Gov’t genocide. PERIOD!

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527

Re: Optimistic (# 525) Expand Referenced Message

Where is this rally?

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528

Re: I feel ur pain (# 527) Expand Referenced Message

https:/­/­dontpunishpainrally.com/­rallies-chart/­

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529

Re: Optimistic (# 525) Expand Referenced Message

Wish I could... money right and 24/7 caregiver to Mom.If we had the means would drive us both there to be able to attend...

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530

Re: Mejane (# 528) Expand Referenced Message

I wish this would have been posted a lot sooner. 3 rallies today in my state and I can't get to any of them.

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531

Re: Mejane (# 528) Expand Referenced Message

Thanks! I found one about 1 hr drive from me.. In the ATL

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532

This is a big mess they created and maybe one day it will turn around and bite them in the ass...not all pain is treated equally. For instance my husbands back pain and knees are shot from working a city job on the garbage trucks..he has just retired, but 30 years ago when he started he would have to stand on the back of a truck an jump on and off at each house and pick up the heavy cans..they dont do garbage this way anymore but when he started that's how it was done..my point is he can handle a lot of pain.. compared to me..I hurt my SCIATICA nerve for the first time..it was bad, I'm sure its the most pain I have felt in my lifetime..it lasted for 2 and a half long months...here's the thing I already take buprenorphine..and I have read that some doctors suggest to pain management patients to try buprenorphine, I cannot believe that they would suggest it....it dosent work good for pain at all..at least I dont think so..I'm on 8mg x 3 a day. And it didn't relieve my pain at all..so how do they expect someone who is in pain year round to take it?....and along with everyone else I keep up with pain news...I don't see it going to change for the better anytime soon..maybe not even in my lifetime..this has been going on so long already and still nobody is getting pain relief....you shouldn't have to be diagnosed with cancer to be able to get prescribed pain medication...I see people have rallies and writing to their states,.and whatever else...yes, I know we have to try or nothing is going to get done...but I still don't think any big changes are going to happen anytime soon...it's so very sad to make someone suffer

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533

was getting about 25% relief on a hyydrocodone 60mg & fentynal patch 75mcg @ 48 hours ..(but my absortion rate due to my hot body metabolism i had to cut each patch in half and apply it half at a time so monday i would remove sat. 1/2 of patch & apply a new half then tues remove sun.1/2 & apply a new half & so on) this worked great for me i could function to a point but i could do much more ... now i have a struggle to do nearly everything ... i have been cut back to 50mg of hydrocodne & now i am being sent to nueosurgion to implant a spinal cord stimulator ... which seems kinda wierd to keep me from taking pain meds that i never had an issue taking (no od scares) this operation will be very expensive .... my guess much more than taking pain meds for 20yrs ..... but hey its a govt they like spending our money ..... i am on medicare so """the people""" will pay the bulk of the bill ... if this actually happens .... rumour has it this is a $200,000 event (been researching about a month now ..... my 1st appt is in around 3 weeks ..... from what i could find boston scientific appears to work best (but who knows it is most likely those that got B. S. stimulators may have followed instructions & procedures better) thdre are a few that got higher than 50% improvement ,,,a few more that got 50% improvement & some got between 30-50% improvement ..... (could not find lower %s listed but it seems to be a long process .... a psych review if pass psych review ya get stimulator leads implanted & wear a stinulator outside the body for a week or so ,,, if ghat proves to be helpful then you go in for removal & then a week or so later you go in for an in body unit (not sure about if leads are removed & replaced with dif ones yet) ..... after implant is done you must aviod twisting and other motions for 6-10 weeks to keep from stressi g unit & moving it preventing healing & securement.... then in 7-10 years a new unit will need implanted ....... the unit has a (bluetooth ?) charging pad that you put on outside of body over the unit at least once a week but those that made videos charge more often (while watching tv or reading) basically while in a stationary position ..... the scary part what happens if congress decides to stop covering this ...... we all know congress doesnt care .... they vote for a lowest cola in years yet give themselves a raise of about 18.5 percent ...... if you have had this procedure please share your experiences

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534

Re: Mejane (# 526) Expand Referenced Message

It probably is a sugar pill, I feel your pain.

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535

I and my husband have been on opioids for thirty years for chronic pain. He is 78 years old and I'm 74. What can we do, who do we contact? I will do anything. This is awful. We feel so helpless. Our Dr. wants to prescribe but battles the insurance company every month. No matter how he files they decline payment. We are getting desperate. My doctor increased my Oxycodone from 20 mg to 30 mg and they refused the refill as they stated my AGE WOULD NOT ALLOW. I do not know what we will do? At our age and the pain plus the withdrawal I am ready to lay down. This is ridiculous.

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536

Re: Lizzie (# 535) Expand Referenced Message

It really wouldn't matter changing the prescribing guidelines as ALL narcotics - opioids, benzos, amphetamine salts, barbiturates and so on and so forth have all been reformulated so you can't get high on them. This practically makes them ALL worthless or very ineffective for the medical conditions that they were created for!

The doctors all know this was done and if you goto an older PDR(Physicians Desk Reference) say 2012 or earlier and compare it to a 2014 or newer like a 2019 PDR. It's right there in writing the difference when you compare the formulations...
It has nothing to do with bonders, fillers or the amount of active ingredients. The chemical matrix that causes oxytocin to be released by the pituitary gland was removed in ALL synthetic opioids! That's what caused the euphoric effect and was 70% to 75% of the analgesic effect GONE!

It's one of the biggest scams pulled on the American public in the history of Healthcare via the federal government and big pharma. This occured while Obama was president and his administration is the one who spear headed this insanity!

So until ALL narcotics are reformulated back to their original formulations that actually worked extremely well and prescribing guidelines are left upto medical professionals and not the imbecile politicians in government and the imbeciles who work for the government! We're pretty much left out to suffer needlessly or take our lives to end the suffering...

The government goons don't care one stinking bit or this would've never happened to begin with! The opiate crisis is as FAKE as all other man made government crisis BS! The opiate crisis is and has always been illegal street drugs, ie. Heroin and Fentanyl. There's much more about who's bringing in these drugs, the government while another branch fights a FAKE war on drugs, but that's another discussion...

It's all about power, control and thinning out the Herd to reduce medical expenditures for profit on the most ill and to reduce government spending on Medicare to name a few of their sick ideological agenda plans...

Only the fear of politicians being voted out of office will change this back to where it was. There were many ways to fix any pharmaceutical abuse issues and destroying the drug supply through reformulation had to be the sickest low down way to fix it! Sounds just like an out of control government hair brained scheme made by idiots...

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537

Re: Mark (# 536) Expand Referenced Message

You are brilliant!!! You hit the nail on the head! I’ve been telling my Dr this for month’s that there had to have been a reformulation! He did agree, but couldnt verify w/any conclusions.

As they eliminated the oxytocin producing agent, wonder if there’s a supplement made to increase the oxytocin in it’s place we could take along with our med? Worthy some research!

In meantime, please get your research to CPP PAIN MANAGEMENT ADVOCATES everywhere! We must bring awareness to this crucial fact!

God bless you & Thank you!!!

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538

Thank you. I'm all for a demonstration with disabled, veterans, and seniors all getting together.

I have never done drugs, raised my 3 girls, and worked for 31 years and owned my own home. Now that I'm disabled, have to have back and neck surgery, not to mention can no longer do the thel things I liked to do, they want to take away the quality of life we have left, to leave us in such severe pain, a lot will die from a heart attack because it brought up there blood pressure so high because they could not take the severe pain or they will give by up the will to live and commit suicide.

They put us in the same category as young kids that want to get high. HOW DARE THEY!

Opiods have been tested as they should , around for years, given to our veterans when they were fighting for our country, not mention they are making the medicine a lot weaker but yet giving you less, and the medicines they try to give you now, do not work, not fully tested as it should and has more harm then good. All about money.

They have no compassion or respect for any of us, which makes me think that they just are just waiting for us to just roll over and. What's that say for our US now!?

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539

Re: RIpainlobby (# 1) Expand Referenced Message

Yes , I’m so willing to help this cause I’m any way I can. I’m tired of worrying about getting my medication. I live everyday in extreme pain . I’m tired of being treated badly and having pharmacies act like I’m committing a crime every time I go to get my meds. I had a pharmacist who was standing in for the regular guy chase my sister out the door telling her there was something wrong Roth my prescription. Even though I filled the same prescription at the same pharmacy written by the same doctor regularly. My sister is a nurse and was taken aback by this guy’s behavior. He was horrible. Keep in mind my sister was doing me a huge favor by going to get my meds for me and by the way has never broken the law in any way. I’m used to the abuse but my sister shouldn’t have to put up with that. I’m ready to join forces with others who must have their medication to get through each day. I’m raising my grandchildren and could in no way function without my fentanyl patch. Let’s stop this abuse now. I’m so afraid when my doctor of 20yrs. retires , I’ll never find another Physician to prescribe my meds. Let’s stop this now...

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540

Re: Hop (# 506) Expand Referenced Message

Soma is garbage.

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