Chronic Pain Advocacy Info

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Nitetrain

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Hidden away in google+1 I found a post stating the National Institute of Health (a government agency actually has an advocacy organization. Google “nationalpainreport’” and you can comment or tell your story about the opioid restrictions by the DEA are killing us. You can become part of an organized group fighting back against the barbaric lack of meds for pain patients and people living in excruciating pain daily. Deadline for comments are June 15, 2018. Not much time but it does provide info on this organization and people to contact to help us in this daily fight! Please speak out!

 
This is very informative and I am letting all the chronic pain patients that I know aware of this.  I've been repeatedly cut down on my scripts and taken off xanax after years of being on it only to find myself using more of my prescribed dose trying to get my anxiety down.  And yes I know that the mixture of opiates and xanax is not the safest yet I was on both for many years  at least 6 years or more and never had a problem.  But now they keep wanting to lower my dose which has never been that high and my anxiety is through the roof.  Thank you for this information.

 
Your so welcome. Thanks for spreading the word. I can’t figure out how to link the site on my iPhone and my computers motherboard is fried. If anyone can provide a one click link that’d be awesome. The site “nationalpainreport “ has a subscription option offering invaluable information regarding this untenable situation. Honestly I came to this group for support and medicine no longer provided by our current healthcare system. Doctors, patients and pharmacist are all under the microscope of senseless, inane and uninformed dictates by bureaucrats totally unfamiliar with the management of acute and chronic pain. I’ve spent hours reading other members stories discovering patterns of emotional  and physical abuse due to the brutality newly sparse CDC Guidelines on Opiate Prescribing. Medicine is available to alleviate suffering yet we are often treated with distrust at best or drug seeking addicts more typically by physicians who’ve had their hands tied and licenses threatened to new physicians jumping on the band wagon of money making Pain Management Clinics, where pee tests and pull counts by minimum wage workers degrade those most vulnerable.

I appreciate your response!

 
Thank you for sharing this! There was another opportunity that was very under-advertised, and at the last minute i learned of it, and tried to submit, but the website wouldn’t accept any more stories for some technical reason- it was listed in a very large chronic pain thread on Inspire, and many of us were unable to post. So make sure to send your stiries ASAP!  

 
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Nitetrain said:
 If anyone can provide a one click link that’d be awesome. The site “nationalpainreport “ has a subscription option offering invaluable information regarding this untenable situation.
Click to expand...

Survey Finding Chronic Pain Community Energized and Angry



Posted on June 10, 2018 in Other with 7 Comments
By Ed Coghlan.

“They are amazing and they are pissed.”

That is how Terri Lewis Ph.D. described the early responses she has been receiving from a survey we are promoting on the National Pain Report.

The survey–which Dr. Lewis developed– is designed to capture data from the chronic pain community that can be shared with the FDA at its July 9 Public Meeting for Patient-Focused Drug Development on Chronic Pain

Dr. Lewis is keeping the survey open until June 17, at which time she’ll cut off the survey to prepare her findings for the meeting in July.

If you haven’t taken the survey yet, you may do so by clicking here.

At this point persons from all 50 states have responded, “some states far more than others,” she said.

As has been the case since the survey started, the respondents have been mostly women (80%) and over 40 years old, but she’s seeing a small increase in the number of people under 17.

In fact, the largest group of respondents is in the 50-to-59 year old range, which she points out is in sharp contrast to the JAMA article released last week that asserts the largest amount of opioid related deaths occur in people in their twenties.

“There are only a few respondents from minority groups, although the number has been picking up of late,” she added.

Dr. Lewis points out that a big number of people who are responding would otherwise be in the prime of their working and economic lives were it not for injury and illness that they endure. Public Meeting for Patient-Focused Drug Development on Chronic Pain
“They are very unhappy with the system they have to rely on.  They are extraordinarily negatively impacted by shrinking footprint of healthcare and public policy,” she pointed out.

Many of the respondents have been dealing with their illnesses and injuries for many years and had achieved some degree of stability of care until the opioid wars destabilized their provider system.

“Their disruptions are not disruptions of their own making – they are systemic in nature and for the most part imposed through public policy with the opioid wars and insurance changes.” she said.

“These are simply sick people, invisible to the system, who have been left to cope on their own,” Dr. Lewis added.

The goal of the survey is to bring the story of the chronic pain community to the FDA in July. 

Let your voice be heard.


Link is HERE
Click to expand...
 
Thank you so much Toker!  This survey was hidden amongst unrelated material (of course) and originally the response time was just one week. So many people commented that it was extended another week, giving just 2 weeks to an entire nation of chronic pain sufferers.  You’re adding the LINK made it so much easier for people to speak up. 

Again, many thanks my friend!

 
Wow, Thank you so much! I was "discharged" by my pain management Dr. of 3 years when 1 of 3 pain medicines he was giving me did not show up in a urine screen! I wasn't using anything not prescribed for me, he knew everything I took and dropped me on my butt cold turkey!  Then he has me come in and I pay for the visit for him to tell me that!  If it weren't for the anxiety meds I take, I would not have made it. However I have epilepsy controlled very well by meds had a seizure 2 nights ago went down so hard I cut my chin open and ended up with 5 stitches? I would say that is from coming off the opiates cold turkey! ??? It makes me sick that a Dr. is even allowed to do this???

 
SkyDog said:
Wow, Thank you so much! I was "discharged" by my pain management Dr. of 3 years when 1 of 3 pain medicines he was giving me did not show up in a urine screen! I wasn't using anything not prescribed for me, he knew everything I took and dropped me on my butt cold turkey!  Then he has me come in and I pay for the visit for him to tell me that!  If it weren't for the anxiety meds I take, I would not have made it. However I have epilepsy controlled very well by meds had a seizure 2 nights ago went down so hard I cut my chin open and ended up with 5 stitches? I would say that is from coming off the opiates cold turkey! ??? It makes me sick that a Dr. is even allowed to do this???
Click to expand...
Unfortunately this seems to be the case especially in the USA as they are trying to get everyone off strong pks after YEARS of handing them out easily  on private health care especially😡

The good old USA gets it SO wrong again!!

 
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  1. ontovzik @ ontovzik: When I had long term shingles, lasting two months. All he could give me was a 10 day supply of dilaudid. He looked at the ground while we were talking about it. I could tell he was ashamed but it was the legislature and the governor that tied his hands. He was very upset that non-medical political people, the media, and the scared public were controlling how he treated his patients. Someday those people will need meds and a hospital bed and they will be gone.
  2. ontovzik @ ontovzik: I had a great doctor, he had the true gift of a healer and he stayed on top of all the science. He straight up told me that for many people opiods work for managing short and long term pain.
  3. ontovzik @ ontovzik: He peed it in the snow in my backyard.
  4. WTF7218 @ WTF7218: @xenxra 😆😂. Yes, but only a few brave souls will ever find the number. You must first order a Dirty Shirley from the bartender. Then you must discreetly take the cocktail napkin from under your drink and unfold it. There you will find the map to the location of the phone number, and clues to decipher the code that it is written in.
  5. xenxra @ xenxra: he left his phone number scribbled in a stall at the pub three blocks down
  6. aBBazaBBa123 @ aBBazaBBa123: @rockychoc How do I contact you?
  7. N @ NYStateofMind: @Alkazar I would try one of those easy online ones .. reddit gives useful info about that
  8. Alkazar @ Alkazar: @NYStateofMind I dont really have a history of abusing things, my docotr is just really stingy. I am thinking of switching.
  9. C @ Cheesus: Thanks xenxra
  10. xenxra @ xenxra: @Cheesus yeah, use snote
  11. P @ psychedpsych: Trump is cracking down….
  12. P @ psychedpsych: Hackers are the scum of the earth
  13. N @ NYStateofMind: so it was easy bc of my history
  14. N @ NYStateofMind: I didnt really tell him but he knew I needed a new script since my dr went to jail
  15. N @ NYStateofMind: @xenxra I was on Adderall since 15 years ago so my dr prescribed that w no problems and then when I lost my best friend my doctor rxed the valiums but
  16. C @ Cheesus: Temp.pm down for anyone else?
  17. xenxra @ xenxra: @NYStateofMind my doctor's have always been pretty open minded if i can actually come in and explain the pharmacological action of the drugs im seeking instead of just telling them why i think i should be prescribed. the only time it didn't work out for me is when i was trying pharmaceuticals for depression ten years ago and suggested they let me try testosterone instead (turns out i was hypogonadal so they made a mistake denying my request at face value)
  18. T @ Testisthebest: Even down here in Florida when the pill mill docs all switched over to Suboxone and/or retired you can still find some pretty liberal docs but you gotta know what to look for. Mine does "pain management, detox, anxiety,etc. And no insurance. My doc writes me 60 5mg Valium, 14 2mg Xanax and asked if I had ever tried adderal to get more focus at work as I told him I run my own business.
  19. N @ NYStateofMind: @Alkazar do they know your history? Like I dont tell my doctor anything about myself except what they need to know,...I was able to get my dr to rx the highest dose of adderall along with valiums ..... if they dont know your history or there is no history I would just come out and ask what is the reason for their mistreatment.... they have no problem billing your insurance or taking a payment for the visit
  20. T @ Turbo259: @Layne_Cobain Thank you fam
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