Chronic Pain Patients Must Get Organized To Lobby For Their Rights. (Page 23)
(Newest replies first)

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: Tina (# 107)

I belong to a group that helps people SLOWLY taper off of antidepressants and anti-seizure meds, Lyrica being one of them, and the withdrawal is harsh on any of the anti-seizure meds, Neurontin Included, the WD is so far worse than opioids EVER WERE. Some people end up with protracted withdrawal that lasts YEARS for some (who do not do it slowly enough usually, but going slowly is no picnic, it just allows you to function), but for some reason that is okay to suffer that fate, other than feeling like crap for a couple of weeks max. PLEASE do not start Lyrica, it is hell to come off of.

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Re: Kelly (# 14)

Amen! My other half (a paramedic) did not understand my pain until he got idiopathic Chronic Pancreatitis after gallbladder removal, and suddenly, he no longer treated me the same. He never really apologized, but we have spoken enough that I know he feels bad, he just could not understand without going through it himself. We do need to get a class action lawsuit, as we have fear every day of our meds being taken away! Our doc was forced to close, and now we go to a clinic that is in a scary neighborhood. I feel bad for everyone who must go there. I am afraid to take my meds to the appt for pill counts, in case I get mugged, and afraid to walk out with my scripts for the same reason. This is insanity. I guarantee if any politician is in pain, his or her needs are met, but I KNOW they think, "This does not count, because MY pain is worse than everyone else's!" I am tired of seeing (but proud of the family members that admit) that the person only offed themselves because of their meds being reduced to a life not worth living.

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Re: Nicole (# 105)

I soo agree w/you..my Dr prescribed Lyrica for my chronic pain. It did nothing @all!!. I would have no choice but to go into a deep sleep. When I would awaken after 8 he sleep, I felt like I needed to go back to bed. I'm in pain each day, all day. The only thing that works is Norco along with Tramadol. I can't take muscle relaxers cause they knock me out and don't do nothing for my chronic back pain. I'm having a horrible life. Also my Dr always allowed me 2 Norco and tramadol every 6 hrs. That was fine. Now he reduced it to one every 6 hrs...that does nothing. So yes I must take either 1 1/2 or 2 depending on the severity of my pain. So frigging unfair to the ppl that truly, truly require and need it...not good.

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Re: Tina (# 107)

I soo agree w/you..my Dr prescribed Lyrica for my chronic pain. It did nothing @all!!. I would have no choice but to go into a deep sleep. When I would awaken after 8 he sleep, I felt like I needed to go back to bed. I'm in pain each day, all day. The only thing that works is Norco along with Tramadol. I can't take muscle relaxers cause they knock me out and don't do nothing for my chronic back pain. I'm having a horrible life...

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Re: TG (# 4)

Petition is closed. Need new one anyway for Trump admin

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Re: sandy (# 104)

HI Sandy, you are so right. My doctor retired and I've been 'shopping' for a new PCP. The very first thing they say is they NEVER prescribe pain medicine. But, the next thing they do is ask me about my blood work. "Have i ever been tested for this or that?" Tests for things I"ve never heard of. 17 total was one doctor, 14 the next. I have in hand all my records, 24 yrs, worth. Why do they want to run all these tests? This is what works for me and at 62 yrs. old, I sure as hell know what works and what doesn't. why are they rocking my boat? Is this wanting to make money? or trying to find something that doesn't exist? needless to say, I haven't found a doctor yet.... not sure when I will. close to giving up.

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I live in Alabama and my state politicians are against all prescription pain meds.. I am on such a low amount every single day for me is so horrible.. I set and cry for some kind of relief, no one has any clue just how bad it is to have chronic pain unless you are suffering with it.. If you know who I can contact in my area please let me know. Cause my pain is no joke!!!!!

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This is an old post but seems so relevant to now! Its 4 years later and look at what is going on it's not a war on drugs if that the case they wouldn't be legalizing marijuana left and right the government just doesn't see opioids as a money maker any more so they are trying to shut things down and leave people that are chronic pain sufferers without proper care.

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Mare (# 106) --

On a side note my doctor wanted prescribe Rozerem for sleep. It’s a newer sleep med that isn’t addictive. After a week of waiting my insurance company denied it telling my doctor to prescribe ambien as that is what is covered for sleep. Talk about half backwards. Insurance will put you on an alstrong hypnotic due to the money instead of allowing the supposed less addictive medication.

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Re: Hop63 (# 103)

You absolutely correct. Several months ago, my Pain Dr said I had a choice pain meds or a muscle released. I’ve been on the same exact meds since 2003 when I became permanently disabled from a failed back surgery. The surgeon removed 95% of my disc at L4-L5. Left with 5% that continued to disintegrate. How much is actually left & has started compromising the other discs above & below that vertebrae? Answer is Yes. But because the government & DEA have started raiding doctors offices, my doctor told me I can no longer take pain pills & a muscle relaxant. I had to decide which ones help the most cause you can’t have both. Since the pain killers weren’t helping much, I chose the muscle relaxant. I’m still not able to stand straight erect. Have to use a cane & in the foreseeable, I will probably be in a walker or wheelchair. The insurance companies dictate what we can take for fear these pills are getting out in the streets. I’m sure almost everyone would agree that their medications are so important to them that you would know even if one is missing.

My world turned upside down ever since I had back surgery. I went to see another orthopedic surgeon in 2003 & he said I was inoperable. But living like this is no life what so ever. It has only gotten worse since then. There is zero stability at L4-L5 & other discs are wearing out much faster. When this first happened back in the 1990s when I first was injured, things have not improved at all & made it just as pain full. I now have a pain pump & stimulator implanted. And yet can not do daily things any longer. Friends & family see the way I stand or walk but still don’t grasp what is really going on. Since it’s been so long, I choose not to even bring it up anymore. My day / night consist on staying on a couch & not moving much because anything I do can cause a slippage in that disc. Causing unbearable pain. I feel for everyone in these blogs that goes through severe pain without getting the proper care. I get it. I understand. I pray that somewhere out there is someone who can fix our problems come through. Not with a “quick fix”. But someone who can give us some quality of life. I don’t know how much more I can take. Especially since they made so much progress since I was first injured. Also stop the government, DEA & the insurance companies from telling us what we can & cannot have. They need to live in our shoes for a day or week. Then maybe something will get done. God bless us all.

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Brian (# 105) --

What’s funny is the drugs they prefer to prescribe like Lyrica, Cymbalta, etc have harsher withdrawals than opioids, lol. They’d rather you die from a seizure or heart issue, cause god forbid you might buy street drugs and do yourself in. I just don’t get it.

I asked my psych NP her thoughts on medical marijuana. She was like well you never know what marijuana can be laced with and you could die from that. Excuse me, did these people even take any courses on basic medication classes??

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My Ortho stated "I don't prescribe anything that is addicting." Again I was labeled right away as an addict.

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Re: Hop63 (# 103)

My pain medication was cut in half 2 years ago. Down from 4 a day to 2. When on 4 a day, that covered 16 hours out of the day. Being on 2 a day now, that only covers 8 hours a day. That is an extreme difference to a chronic pain patient who is in pain 24 hours a day, and have been for 31 years. Regardless of the fact that, according to my prescribing Dr., I have the most well documented and extreme case of chronic pain that he has ever seen in his entire 30 year career. The only reason for the decrease in medication is because of all of your above-mentioned points. My quality of life has become extremely diminished. I am in fear, as many of your are, of any further cuts to my medication. I have always been in total compliance with my pain contract. There are regular urine and blood screens, as well as medication counts. Even with all of this proof that the medication is not being abused, we are treated horribly by other medical professionals, such as those in the emergency room. We must not be grouped in with street addicts and those who do abuse their medications.

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sandy

I agree we are treated like addicts. I am needing a PCP first thing out of mouth was I never give Pain meds. He is a jerk. will keep looking. I told him I would not ever ask.

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Re: Tina (# 93)

You are so right. This “war on drugs” has physicians treating us like addicts and some “close minded” family members have made their comments. They are so fortunate that they are not trying to deal with chronic pain on a daily basis. Have you had any family or friends be less than sympathetic to your current situation. My judgmental sisters have never asked the outcome of my insurance company forcing my pain management doctor to reduce my monthly medication by 1/3. My doctor originally was on my side but I believe he was afraid of an investigation and suddenly he was in agreement. Since when does an insurance company dictate the correct prescription for patients? This is so out of control I fear for many people who will fall into deep depression when pain medication is taken away. Obviously our “fearless leaders” don’t share my concerns.

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Re: Vicki (# 94)

Hi Vicki, here is a good place to start...National Pain Report.

Don't miss Dr. Terry Lewis' article: "If We Don’t Ask, We Don’t Get and If We Don’t Tell, They Will Stop Asking"
- (Posted on May 28, 2018 in Government of National Pain Report) By Terri Lewis, Ph.D.

Rose Bigham's article: How to Talk to an Elected Official About Chronic Pain - (Posted on July 14, 2018 in Opinion of National Pain Report, with 25 Comments) By Rose Bigham.

Last, I want to share two replies to Dr. Lewis's article. WOW!

"Thank you doctor. Some practical information from one who completed the fda survey. It took me 3 hours. I did not comment fully because of the severe pain I experienced. Also, some of the questions and answers do not make sense, so do not check those. Instead try to comment. Some were blatantly rigged to skew data. You will discover that this is also a gotcha type of document. If you answer some questions truthfully and give your information at the end it will go to the local police and pharmacy. Probably not your doctors. You will be at further risk of losing medical treatment if you take the survey. One ‘answer’ asks if you will be driven to buy street drugs if you are fired from medical treatment. What street drugs? None here in the land of Andy Griffith. And don’t become emotional and answer yes. You will be put on a police database. The survey probably is bogus, not for collecting medical data or getting a feel for the agony of intractable pain, but for identifying community members and their pain medications and their prescribers. Then at any time, the pharmacy will throw you a surprise party and stop your weak dose of short acting opioid when you come with your valid script. Again, if in pain, the survey will be difficult if you comment on all 30 or so questions. To comment fully would have taken me six hours and I am a fair keyboardist. But some of the questions are dubious and so was the required disclosure of personal information at the end. It doesn’t look as if an honest Christian crafted this survey. But on the slim chance Christians took part in it, take a bufferin and fill it out. If they were not Christians, then they must change or they will have a place in hell. Are you listening Jeff? Or Big Brother?
Truth and pain patients are the casualties of this war on innocent, suffering citizens of the United States. I pray that no more take their own lives because of this disgraceful mess. Thank you Dr. Lewis for your help and compassion."

"There are over 1400 comments on the HHS docket, but only 247 on the FDA docket. If you have commented on just one of these two, YOU ARE NOT DONE!!. Every single comment on the HHS (regulations.gov/document?D=HHS-OS-2018-0009-0001) docket needs to be made as well on the FDA (regulations.gov/document?D=FDA-2018-N-1621-0001) docket, and vice versa. And if you have commented on both, guess what? You are STILL NOT DONE!! That red button on the side of the page is a link to a survey tool that will aggregate your responses for a presentation Dr. Lewis is going to make to a meeting of the FDA."

Altogether, this may seem like a LOT of work, especially for someone in chronic pain, but since this nightmare began, we have NEVER HAD A BETTER CHANCE for someone in government to actually HEAR OUR VOICE!! If you need help, ask a family member or your caregiver. There are over 60 anti-opioid bills in Congress right now. Chances are, not a single one even mentions patients in chronic pain.

Please do NOT let this chance to finally be heard pass you by.

IT COULD VERY WELL BE THE LAST CHANCE YOU WILL EVER GET!

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Drakee (# 94) --

So sorry you are going through this Drakee. Wish I could donate done of what I have left, but after this month I can’t get any more as my Doctor dumped me. If only they could walk in our bodies for one day, or even one hour. They’d be screaming for morphine.

I can’t even begin to understand how they can do this to people who have been taking pain meds for years.

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Re: madashell (# 96)

I could not have said it better! Just when in the hell did we give up control OF OUR OWN LIVES?!?

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Another excerpt from the DEA Resource Guide, 2017:

Quotas...DEA limits the quantity of Schedule I and II controlled substances and specific List I chemicals (pseudoephedrine, ephedrine, and phenylpropanolamine) that may be produced in the United States in any given calendar year for legitimate medical, scientific and research needs, inventory, and lawful exports. By utilizing available data on sales and inventories of these controlled substances, and taking into account estimates of drug usage provided by the FDA, the DEA establishes annual aggregate production quotas for Schedule I and II controlled substances and the List I chemicals pseudoephedrine, ephedrine, and phenylpropanolamine.

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Re: Tues (# 78)

I take exception to the entire DEA article... this one is one of the worst. It seems they can circumvent laws, take matters into their own hands-which they've done, and answer to no one.

Emergency or Temporary Scheduling

The CSA was amended by the Comprehensive Crime Control Act of 1984. This Act included a provision which allows the DEA Administrator to place a substance, on a temporary basis, into Schedule I, when necessary, to avoid an imminent hazard to public safety. This emergency scheduling authority permits the scheduling of a substance which is not currently controlled, is being abused, and is a risk to public health while the formal rule-making procedures described in the CSA are being conducted. This emergency scheduling applies only to substances with no accepted medical use. A temporary scheduling order may be issued for two years with a possible extension of up to one year if formal scheduling procedures have been initiated. The notice of intent and order are published in the Federal Register, as are the proposals and orders for formal scheduling. [21 U.S.C. § 811 (h)]

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