Want To Talk With the Media About Chronic Pain?

Want To Talk With the Media About Chronic Pain?

By Ed Coghlan.

“Why won’t the media listen to us?”

It has been a common question of frustration that hundreds and hundreds of chronic pain patients have commented on the National Pain Report stories we’ve done on the opioid issue in last several years.

Politico has been covering the issue and wants to hear more information from patients and providers. Their story, 5 unintended consequences of addressing the opioid crisis talked about both sides of the story—which pain patient advocates say has been rare in the coverage of the opioid issue.

They are interested in speaking with patients and providers about their experience. I filled out the form recently–identified myself as the editor of the National Pain Report and received a response email asking that we tell you about the opportunity to comment.

Their director of engagement, Annie Yu, sent me an email with the request.

“Our stories are read by some of the top health care policymakers in the country, and we want to make sure that we’re listening to many perspectives as we can and letting that shape and inform our reporting,” she wrote.

Here’s the form.

It asks for the input of patients and providers.

The frustration–and the increasing isolation-that permeate the chronic pain population are well documented in our readers’ reaction to our stories. This is a chance for you to talk with the media.

And it gives the health care providers–many of whom have expressed to us and others their frustration with the opioid crackdown which didn’t provide any alternative to the restrictions–a chance to tell their story about the treatment challenges this presents.

If you have time after you’ve given Politico your views and opinion, please share in our comment section the gist of what you shared.

This is also a good time to remind you of the survey that we are promoting in advance of the FDA meeting in July. The FDA is challenged with determining how to balance the need to ensure continued access to persons who rely on opioids for continuous pain relief while addressing the ongoing concerns about safe use, abuse and misuse.  You are asked to comment before June 17.

Here’s the survey.

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Authored by: Ed Coghlan

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19 Comments on "Want To Talk With the Media About Chronic Pain?"

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I’ve been disabled since 1999. I’ve had back an neck surgery’s. I have chronic pain an Im seeing a pain management doctor. Ive had a youth court judge say Ive neglected my children becouse of the amount of medicine Im prescribed. The judge has went as far as to say my doctor is my drug dealer. I’ve been made to go to family drug court as that was the only way I could see or have a chance to get my children back. I couldn’t go to a drug rehab an stoo taking my doctor prescribed medicine like this judge wanted me to. An now I’m in danger of losing my children for ever. Im not a drug addict. Im a chronic pain patient . I’ve never failed a drug test . Im under a doctors cair. Yet the youth court are treating me like Im a drug addict.

I completed the FDA survey . I hope I did not damage our cause as I have extreme difficulties with the pain in my hands preventing me from giving complete answers which I feel is critical to surveys or conversations which all seem to try to “lead or direct” the data to use it for ammunition against the long term use of opioids for chronic pain . I usually state I’d like to be contacted by phone to continue and elaborate but doesn’t work. Thirty yrs of fighting a crippling incurable disease has left me with a wealth of relevant information and experience. Unfortunately it has also left my fingers so damaged I’ll seldom be able to communicate useful information fully before my hands force me to become silent again….

Rich R. Hello,As Dr.Red stated if you have a “Smartphone orTablet”you have to download JavaScript to complete the FDA survey.I used my Dell PC to complete the survey.If you don’t have a PC maybe a friend would let you use their PC.I encourage Everybody who reads these comments to complete survey.We have to start somewhere and get this show on the road.

I shared. I also sent a picture of my last MRI.

I completed the survey today. A few months ago my pain management doctor eliminated the long acting medication that I took twice daily to help control severe back pain. Just last week, he reduced my one remaining pain medicine by 25%. My pain is no longer managed. I spend so much time in bed, in pain. Depression is a big issue for me, having to live this way. Please, we must act together and save ourselves.

I completed…….

Obviously the form was written by those with very little awareness of severe intractable pain. Sadly skewed by CNN effect towards addiction not pain management. Its a difficult landscape to navigate for the noobs, more so for outsiders looking in, sad, little to no real advocacy for disabled.

I filled out the form emphasizing that I have tried EVERY non pharmaceutical therapy possible and opiates are the only relief from pain that has allowed me some semblance of a life. I emphasized pain patients don’t get high and most of us use our medication responsibly, we are not addicts. I shared that if my medication is cut and/or taken away I will not be able to have any life and will end it, but I don’t want to. I don’t want to leave my husband and son and don’t want to hurt them. This morning my local Walgreen’s refused to fill my prescription. The pharmacist told me its not good for me to be above 90mme (I’m just above 300)…I told her it’s the only way I can bear with pain, I’ve tried every non narcotic pain relief method available and it’s not good for me to be in so much pain I want to kill myself! They faxed my doctor about reducing my rx and require her to send back diagnosis codes, etc to why she wrote my prescription that they’ve been filling for years. This is insane….but addicts can have withdrawal. They need their methadone doses!!!

In my input to the Politico survey, I offered the following:

RE challenges to getting patients off opioids:

Note: I am a healthcare writer and literature analyst with 20 years of experience as a subject matter expert , but I am not a licensed physician. I support nearly 80,000 chronic and intractable pain patients in peer to peer social media. My comments reflect what they tell me.

A major challenge to patients is that their doctors are deserting many of them outright, with little or no support for management of withdrawal symptoms and no referral to competent pain management. Even among those who are maintained in practice, many are being coerced to taper doses below minimum therapeutic levels. The CDC Guidelines themselves discourage these physician choices, and make clear that there is no medical justification for the coerced tapering of a patient who is stable on opioid therapy and whose quality of life has benefited from same.

About Tapering too quickly:

I am personally familiar with at least two cases in which patients entered full scale medical collapse and died of side effects of unsupervised withdrawal. I also know of 25+ suicides among patients denied the continuance of opioid therapy that had worked for them for years. The Veterans Administration recently convened a conference discussion of suicides among vets who are being deserted and abused in this manner.

Biggest challenges to treating pain patients

Too many physicians practice cookbook medicine, looking for simple one-size-fits-all rules. In chronic pain there are no such rules. Specialists in the field recognize a 25-to-1 range in minimum therapeutic dose levels for opioid therapy. But the CDC Guidelines specify a single (and unsupported) threshold of risk for opioid abuse disorder, at 90 MMED. There is no medical evidence for this sort of generalization and much evidence to contradict it.

Physician Training

Generally the biggest challenge faced by general practitioners in treating chronic pain is that they are inadequately trained during medical school and internship in either pain management or the recognition and referral of addiction. Many med schools have no required courses in pain, despite the fact that pain is the number one symptom that brings patients to a doctor’s office.

==== I encourage all patients to make their experiences and concerns with opioid therapy known.

Hello. I filled out survey. I am a female veteran with a spinal cord injury. I wrote about VA issues and blanket policies. I spoke about personal accountability and we are not addicts who want to get high. I have emailed DR. Phil numerous times about chronic pain vice addiction. No response over 5 years. I am tired of feeling like a bsd person who is looking to shirk responsibility. We must unite and speak up!
Mo

Jan, I got the same message for the FDA survey but you can do the politico survey on any device.

I’m not a good spokesperson but I filled out the form anyway. I hope Politico allows people to speak out against this torturing of the sick and not spin it to promote this cruel agenda.

I answered the politico questions today. Most questions were good ones. I recommend everyone take it then leave a comment acknowledging you’ve done so. We all need to keep on speaking!
Love to all!

You still can’t talk to the media! If anyone has taken this survey, I would like to know how. The survey says it requires javascript to be enabled. It gives you a link to type in so you can install it, but it doesn’t pull up on my Verizon Ellipsis 8 tablet.

I went to a post that said Java does not exist for the Android OS.

Can anyone help? I would like to take the survey.

I am writing on behalf of my sister and a close friend. I have been searching for websites that address this worldwide problem! Doctors are being ordered to deny pain medicine to those that have intractable pain. Two things will happen…searching out the street drug dealers or suicide.

Why in the world has this happened to where the people getting them illegally and take them to get high as opposed to strict doctors treatment (it is very controlled). So many people have NO quality of life with the pain 24/7 and usually cannot leave the bed.
As far as the media, I do not expect they truly care! I found another website http://www.petitiontocongress.com and MadinAmerica.com. another is ATIP..The alliance for the treatment of intractable pain. Another is Face facts.org. This is inhumane and there are millions hurting that are now forgotten.

I completed & submitted survey.

Ed, my comment is real time and not being melodramatic. You won’t be getting a lot of comments because your audience is getting smaller and smaller. They’re killing us. Why can’t anyone see that or do anything about it. I don’t know what others doctors are telling them but mine just stands there and says sorry there’s nothing I can do. All I have to offer you is this Medtronic stimulator. If it does not work that’s it. So don’t be surprised if your responses get fewer and fewer. We are disappearing.

I completed the Politico questionnaire but am unable to cut and paste the entire thing.

I have an intractable pain condition called adhesive arachnoiditis of the spine due to medical error. I am on high dose opiate pain medication which allows me to bathe, make simple meals, and go to doctor appointments. I am home bound for the most part. My illness cannot be cured. I am not having significant problems obtaining my prescriptions but with the “opioid crackdown”, I live in fear that my medicines will be tapered or discontinued. This would render me bed bound and in pain. I would haveno desire to livethe rest of my life that way.

YES,YES, YES, YES, YES, AND DO I HAVE A STORY.