Chronic Pain Advocacy Info

[Nitetrain]

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!

 

[jijjxen]

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.

 

[Nitetrain]

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!

 

[Gracie5]

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!  

 

[Toker]

 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.

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

 

[Nitetrain]

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!

 

[SkyDog]

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???

 

[blissopifree 2]

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???

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!!